Tai Huynh, MBA

Patient-centered care, defined by the Institute of Medicine as “health care that establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients’ wants, needs and preferences and that patients have the education and support they need to make decisions and participate in their own care,” has been recognized as an important factor in improving care transitions after discharge from the hospital.¹ Previous efforts to improve the discharge process for hospitalized patients and reduce avoidable readmissions have focused on improving systems surrounding the patient, such as by increasing the availability of outpatient follow-up or standardizing communication between the inpatient and outpatient care teams.^1,2 In fact, successful programs such as Project BOOST and the Care Transitions Interventions™ provide healthcare institutions with a “bundle” of evidence-based transitional care guidelines for discharge: they provide postdischarge transition coaches, assistance with medication self-management, timely follow-up tips, and improved patient records in order to improve postdischarge outcomes.^3,4 Successful interventions, however, may not provide more services, but also engage the patient in their own care.^5,6 The impact of engaging the patient in his or her own care by providing patient-friendly discharge instructions alone, however, is unknown.

A patient-centered discharge may use tools that were designed with patients, or may involve engaging patients in an interactive process of reviewing discharge instructions and empowering them to manage aspects of their own care after leaving the hospital. This endeavour may lead to more effective use of discharge instructions and reduce the need for additional or more intensive (and costly) interventions. For example, a patient-centered discharge tool could include an educational intervention that uses the “teach-back” method, in which patients are asked to restate in their own words what they thought they heard, or in which staff use additional media or a visual design tool meant to enhance comprehension of discharge instructions.^6,7 Visual aids and the use of larger fonts are particularly useful design elements for improving comprehension among non-English speakers and patients with low health literacy, who tend to have poorer recall of instructions.^8-10 What may constitute essential design elements to include in a discharge instruction tool, however, is not clear.

Moreover, whether the use of discharge tools with a specific focus on patient engagement may improve postdischarge outcomes is not known. Particularly, the ability of patient-centered discharge tools to improve outcomes beyond comprehension such as self-management, adherence to discharge instructions, a reduction in unplanned visits, and a reduction in mortality has not been studied systematically. The objective of this systematic review was to review the literature on discharge instruction tools with a focus on patient engagement and their impact among hospitalized patients.

 

METHODS

The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) Statement was followed as a guideline for reporting throughout this review.¹¹

Data Sources

A literature search was undertaken using the following databases from January 1994 or their inception date to May 2014: Medline, Embase, SIGLE, HTA, Bioethics, ASSIA, Psych Lit, CINAHL, Cochrane Library, EconLit, ERIC, and BioMed Central. We also searched relevant design-focused journals such as Design Issues, Journal of Design Research, Information Design Journal, Innovation, Design Studies, and International Journal of Design, as well as reference lists from studies obtained by electronic searching. The following key words and combination of key words were used with the assistance of a medical librarian: patient discharge, patient-centered discharge, patient-centered design, design thinking, user based design, patient education, discharge summary, education. Additional search terms were added when identified from relevant articles (Appendix).

Inclusion Criteria

We included all English-language studies with patients admitted to the hospital irrespective of age, sex, or medical condition, which included a control group or time period and which measured patient outcomes within 3 months of discharge. The 3-month period after discharge is often cited as a time when outcomes could reasonably be associated with an intervention at discharge.²

Exclusion Criteria

Studies that did not have clear implementation of a patient-centered tool, a control group, or those whose tool was used in the emergency department or as an outpatient were excluded. Studies that included postdischarge tools such as home visits or telephone calls were excluded unless independent effects of the predischarge interventions were measured. Studies with outcomes reported after 3 months were excluded unless outcomes before 3 months were also clearly noted.

All searches were entered into Endnote and duplicates were removed. A 2-stage inclusion process was used. Titles and abstracts of articles were first screened for meeting inclusion and exclusion criteria by 1 reviewer. A second reviewer independently checked a 10% random sample of all the abstracts that met the initial screening criteria. If the agreement to exclude studies was less than 95%, criteria were reviewed before checking the rest of the 90% sample. In the second stage, 2 independent reviewers examined paper copies of the full articles selected in the first stage. Disagreement between reviewers was resolved by discussion or a third reviewer if no agreement could be reached.

Data Analysis and Synthesis

The following information was extracted from the full reference: type of study, population studied, control group or time period, tool used, and outcomes measured. Based on the National Health Care Quality report’s priorities and goals on patient and/or family engagement during transitions of care, educational tools were further described based on method of teaching, involvement of the care team, involvement of the patient in the design or delivery of the tool, and/or the use of visual aids.¹² All primary outcomes were classified according to 3 categories: improved knowledge/comprehension, patient experience (patient satisfaction, self-management/efficacy such as functional status, both physical and mental), and health outcomes (unscheduled visits or readmissions, adherence with medications, diet, exercise, or follow-up, and mortality).

No quantitative pooling of results or meta-analysis was done given the variability and heterogeneity of studies reviewed. However, following guidelines for Effect Practice and Organisation of Care (EPOC) Risk of Bias criteria,¹³ studies that had a higher risk of bias such as uncontrolled before-after studies or studies with only 1 intervention or control site (historical controls, eg) were excluded from the final review because of the difficulties in attributing causation. Only primary outcomes were reported in order to minimize type II errors.

RESULTS

Our search revealed a total of 3699 studies after duplicates had been removed (Figure). A total of 714 references were included after initial review by title and abstract and 30 studies after full-text review. Agreement on a 10% random sample of all abstracts and full text was 79% (k=0.58) and 86% (k=0.72), respectively. Discussion was needed for fewer than 100 references, and agreement was subsequently reached for 100%.

There were 22 randomized controlled trials and 8 nonrandomized studies (5 nonrandomized controlled trials and 3 controlled before-after studies). Most of these studies were conducted in the United States (13/30 studies), followed by other European countries (5 studies), and the United Kingdom (4 studies). A large number of studies were conducted among patients with cardiovascular disease or risk factors (10 studies), followed by postsurgical patients such as coronary artery bypass graft surgery or orthopaedic surgery (5 studies). Five of 30 studies were conducted among individuals older than 65 years. Most studies excluded patients who did not speak English or the country’s official language; only 3 studies included patients with limited literacy, patients who spoke other languages, or caregivers if the patients could not communicate.

Most studies tested the impact of educational discharge interventions (28 of 30 studies) (Table 1). Quite often, it was a member of the research team who carried out the patient education. Only 3 studies involved multiple members of the care team in designing or reviewing the discharge tool with the patient. Almost half (12 studies) targeted multiple aspects of postdischarge care, including medications and side effects, signs and symptoms to consider, plans for follow-up, dietary restrictions, and/or exercise modifications. Many (19 studies) provided education using one-on-one teaching in association with a discharge tool, accompanied by a written handout (13 studies), audiotape (2 studies), or video (3 studies). While 13 studies had patients involved in creating what content was discussed and 14 studies had patients involved in the delivery of the tool, only 6 studies had patients involved in both design and delivery of the tool. Nine studies also used visual aids such as pictures, larger font, or use of a tool enhanced for patients with language barriers or limited health literacy.

Among all 30 studies included, 16 studies tested the impact of their tool on comprehension postdischarge, with 10 studies demonstrating an improvement among patients who had received the tool (Table 2). Five studies evaluated healthcare utilization outcomes such as readmission, length of stay, or physician visits after discharge and 2 studies found improvements. Twelve studies also studied the impact on adherence with medications, diet, exercise, or follow-up instructions postdischarge. However, only 4 of these 12 studies showed a positive impact. Only 2 studies tested the impact on a patient’s ability to self-manage once at home, and both studies reported positive statistical outcomes. Few studies measured patient experience (such as patient satisfaction or improvement in self-efficacy) or mortality postdischarge.

 

 

DISCUSSION/CONCLUSION

Our systematic review found 30 studies that engaged patients during the design or the delivery of a discharge instruction tool and that tested the effect of the tool on postdischarge outcomes.^6-10,14–38 Our review suggests that there is sufficient evidence that patient-centered discharge tools improve comprehension. However, evidence is currently insufficient to determine if patient-centered tools improve adherence with discharge instructions. Moreover, though limited studies show promising results, more studies are needed to determine if patient engagement improves self-efficacy and healthcare utilization after discharge.

A major limitation of current studies is the variability in the level of patient engagement in tool design or delivery. Patients were involved in the design mostly through targeted development of a discharge management plan and the delivery by encouraging them to ask questions. Few studies involved patients in the design of the tool such that patients were responsible for coming up with content that was of interest to them. The few that did, often with the additional use of video media, demonstrated significant outcomes. Only a minority of studies used an interactive process to assess understanding such as “teach-back” or maximize patient comprehension such as visual aids. Even fewer studies engaged patients in both developing the discharge tool and providing discharge instructions.

Several previous studies have demonstrated that most complications after discharge are the result of ineffective communication, which can be exacerbated by lack of fluency in English or by limited health literacy.^2,39-43 As a result, poor understanding of discharge instructions by patients and their caregivers can create an important care gap.⁴⁴ Therefore, the use of patient-centered tools to engage patients at discharge in their own care is needed. How to engage patients consistently and effectively is perhaps less evident, as demonstrated in this review of the literature in which different levels of patient engagement were found. Many of the tools tested placed attention on patient education, sometimes in the context of bundled care along with home visits or follow-up, all of which can require extensive resources and time. Providing patients with information that the patients themselves state is of value may be the easiest refinement to a discharge educational tool, although this was surprisingly uncommon.^{6,9,10,17,23,33,37} Only 2 studies were found that engaged patients in the initial stage of design of the discharge tool, by incorporating information of interest to them.^23,32 For example, a study testing the impact of a computer-generated written education package on poststroke outcomes designed the information by asking patients to identify which topics they would like to receive information about (along with the amount of information and font size).²³ Secondly, although most of the discharge tools reviewed included the use of one-on-one teaching and the use of media such as patient handouts, these tools were often used in such a way that patients were passive recipients. In fact, studies that used additional video media that incorporated personalized content were the most likely to demonstrate positive outcomes.^17,34 The next level of patient engagement may therefore be to involve the patient as an interactive partner when delivering the tool in order to empower patients to self-care. For example, 1 study designed a structured education program by first assessing lifestyle risk factors related to hypertension that were modifiable along with preconceived notions through open-ended questions during a one-on-one interview.³⁷ Patients were subsequently educated on any knowledge deficits regarding the management of their lifestyle. Another level of patient engagement may be to use visual aids during discussions, as a well-known complement to verbal instructions.^45,46 For example, in a controlled study that randomized a ward of elderly patients with 4 or more prescriptions to predischarge counseling, the counseling session aimed to review reasons for their prescriptions along with corresponding side effects, doses, and dosage times with the help of a medicine reminder card. Other uses of visual aid tools identified in our review included the use of pictograms or illustrations or, at minimum, attention to font size.^{7,8,16,29,33,35} In the absence of a visual aid, asking the patient to repeat or demonstrate what was just communicated can be used to assess the amount of information retained.^18,33

An important result discovered in our review of the literature was also the lack of studies that tested the impact of discharge tools on usability of discharge information once at home. Conducting an evaluation of the benefits to patients after discharge can help objectify vague outcomes like health gains or qualify benefits in patient’s views. This might also explain why many studies with documented patient engagement at the time of discharge were able to demonstrate improvements in comprehension but not adherence to instructions. Although patients and caregivers may understand the information, this comprehension does not necessarily mean they will find the information useful or adhere to it once at home. For example, in 1 study, patients discharged with at least 1 medication were randomized to a structured discharge interview during which the treatment plan was reviewed verbally and questions clarified along with a visually enhanced treatment card.²⁶ Although knowledge of medications increased, no effect was found on adherence at 1 week postdischarge. However, use of the treatment card at home was not assessed. Similarly, another study tested the effect of an individualized video of exercises and failed to find a difference in patient adherence at 4 weeks.²⁸ The authors suggested that the lack of benefit may have been because patients were not using the video once at home. This is in contrast to 2 studies that involved patients in their own care by requiring them to request their medication as part of a self-medication tool predischarge.^16,30 Patients were engaged in the process such that increasing independence was given to patients based on their demonstration of understanding and adherence to their treatment while still in the hospital, a learning tool that can be applied once at home. Feeling knowledgeable and involved, as others have suggested, may be the intermediary outcomes that led to improved adherence.⁴⁷ It is also possible that adherence to discharge instructions may vary based on complexity of the information provided, such that instructions focusing solely on medication use may require less patient engagement than discharge instructions that include information on medications, diet, exercise modifications, and follow-up.⁴⁸

Our review has a few limitations. Previous systematic reviews have demonstrated that bundled discharge interventions that include patient-centered education have a positive effect on outcomes postdischarge.^2,5 However, we sought to describe and study the individual and distinct impact of patient engagement in the creation and delivery of discharge tools on outcomes postdischarge. We hoped that this may provide others with key information regarding elements of patient engagement that were particularly useful when designing a new discharge tool. The variability of the studies we identified, however, made it difficult to ascertain what level of patient engagement is required to observe improvements in health outcomes. It is also possible that a higher level of patient engagement may have been used but not described in the studies we reviewed. As only primary outcomes were included, we may have underestimated the effect of patient-centered discharge tools on outcomes that were reported as secondary outcomes. As we were interested in reviewing as many studies of patient-centered discharge tools as possible, we did not assess the quality of the studies and cannot comment on the role of bias in these studies. However, we excluded studies with study designs known to have the highest risk of bias. Lastly, we also cannot comment on whether patient-centered tools may have an effect on outcomes more than 3 months after a hospital discharge. However, several studies included in this review suggest a sustained effect beyond this time period.^8,25,32,37

Patient-centered discharge tools in which patients were engaged in the design or the delivery were found to improve comprehension of but not adherence with discharge instructions. The perceived lack of improved adherence may be due to a lack of studies that measured the usefulness and utilization of information for patients once at home. There was also substantial variability in the extent of patient involvement in designing the style and content of information provided to patients at discharge, as well as the extent of patient engagement when receiving discharge instructions. Future studies would benefit from detailing the level of patient engagement needed in designing and delivery of discharge tools. This information may lead to the discovery of barriers and facilitators to utilization of discharge information once at home and lead to a better understanding of the patient’s journey from hospital to home and onwards.

 

C.M.B. and this work were funded by a CIHR Canadian Patient Safety Institute Chair in Patient Safety and Continuity of Care. Funding was provided to cover fees to obtain articles from the Donald J. Matthews Complex Care Fund of the University Health Network in Toronto, Canada. The Toronto Central Local Health Integration Network provided funding for the design and implementation of a patient-oriented discharge summary. None of the funding or supportive agencies were involved in the design or conduct of the present study, analysis, or interpretation of the data, or approval of the manuscript.

Disclosures

The authors report no conflicts of interest.

 

Patient-centered care, defined by the Institute of Medicine as “health care that establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients’ wants, needs and preferences and that patients have the education and support they need to make decisions and participate in their own care,” has been recognized as an important factor in improving care transitions after discharge from the hospital.¹ Previous efforts to improve the discharge process for hospitalized patients and reduce avoidable readmissions have focused on improving systems surrounding the patient, such as by increasing the availability of outpatient follow-up or standardizing communication between the inpatient and outpatient care teams.^1,2 In fact, successful programs such as Project BOOST and the Care Transitions Interventions™ provide healthcare institutions with a “bundle” of evidence-based transitional care guidelines for discharge: they provide postdischarge transition coaches, assistance with medication self-management, timely follow-up tips, and improved patient records in order to improve postdischarge outcomes.^3,4 Successful interventions, however, may not provide more services, but also engage the patient in their own care.^5,6 The impact of engaging the patient in his or her own care by providing patient-friendly discharge instructions alone, however, is unknown.

A patient-centered discharge may use tools that were designed with patients, or may involve engaging patients in an interactive process of reviewing discharge instructions and empowering them to manage aspects of their own care after leaving the hospital. This endeavour may lead to more effective use of discharge instructions and reduce the need for additional or more intensive (and costly) interventions. For example, a patient-centered discharge tool could include an educational intervention that uses the “teach-back” method, in which patients are asked to restate in their own words what they thought they heard, or in which staff use additional media or a visual design tool meant to enhance comprehension of discharge instructions.^6,7 Visual aids and the use of larger fonts are particularly useful design elements for improving comprehension among non-English speakers and patients with low health literacy, who tend to have poorer recall of instructions.^8-10 What may constitute essential design elements to include in a discharge instruction tool, however, is not clear.

Moreover, whether the use of discharge tools with a specific focus on patient engagement may improve postdischarge outcomes is not known. Particularly, the ability of patient-centered discharge tools to improve outcomes beyond comprehension such as self-management, adherence to discharge instructions, a reduction in unplanned visits, and a reduction in mortality has not been studied systematically. The objective of this systematic review was to review the literature on discharge instruction tools with a focus on patient engagement and their impact among hospitalized patients.

 

METHODS

The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) Statement was followed as a guideline for reporting throughout this review.¹¹

Data Sources

A literature search was undertaken using the following databases from January 1994 or their inception date to May 2014: Medline, Embase, SIGLE, HTA, Bioethics, ASSIA, Psych Lit, CINAHL, Cochrane Library, EconLit, ERIC, and BioMed Central. We also searched relevant design-focused journals such as Design Issues, Journal of Design Research, Information Design Journal, Innovation, Design Studies, and International Journal of Design, as well as reference lists from studies obtained by electronic searching. The following key words and combination of key words were used with the assistance of a medical librarian: patient discharge, patient-centered discharge, patient-centered design, design thinking, user based design, patient education, discharge summary, education. Additional search terms were added when identified from relevant articles (Appendix).

Inclusion Criteria

We included all English-language studies with patients admitted to the hospital irrespective of age, sex, or medical condition, which included a control group or time period and which measured patient outcomes within 3 months of discharge. The 3-month period after discharge is often cited as a time when outcomes could reasonably be associated with an intervention at discharge.²

Exclusion Criteria

Studies that did not have clear implementation of a patient-centered tool, a control group, or those whose tool was used in the emergency department or as an outpatient were excluded. Studies that included postdischarge tools such as home visits or telephone calls were excluded unless independent effects of the predischarge interventions were measured. Studies with outcomes reported after 3 months were excluded unless outcomes before 3 months were also clearly noted.

All searches were entered into Endnote and duplicates were removed. A 2-stage inclusion process was used. Titles and abstracts of articles were first screened for meeting inclusion and exclusion criteria by 1 reviewer. A second reviewer independently checked a 10% random sample of all the abstracts that met the initial screening criteria. If the agreement to exclude studies was less than 95%, criteria were reviewed before checking the rest of the 90% sample. In the second stage, 2 independent reviewers examined paper copies of the full articles selected in the first stage. Disagreement between reviewers was resolved by discussion or a third reviewer if no agreement could be reached.

Data Analysis and Synthesis

The following information was extracted from the full reference: type of study, population studied, control group or time period, tool used, and outcomes measured. Based on the National Health Care Quality report’s priorities and goals on patient and/or family engagement during transitions of care, educational tools were further described based on method of teaching, involvement of the care team, involvement of the patient in the design or delivery of the tool, and/or the use of visual aids.¹² All primary outcomes were classified according to 3 categories: improved knowledge/comprehension, patient experience (patient satisfaction, self-management/efficacy such as functional status, both physical and mental), and health outcomes (unscheduled visits or readmissions, adherence with medications, diet, exercise, or follow-up, and mortality).

No quantitative pooling of results or meta-analysis was done given the variability and heterogeneity of studies reviewed. However, following guidelines for Effect Practice and Organisation of Care (EPOC) Risk of Bias criteria,¹³ studies that had a higher risk of bias such as uncontrolled before-after studies or studies with only 1 intervention or control site (historical controls, eg) were excluded from the final review because of the difficulties in attributing causation. Only primary outcomes were reported in order to minimize type II errors.

RESULTS

Our search revealed a total of 3699 studies after duplicates had been removed (Figure). A total of 714 references were included after initial review by title and abstract and 30 studies after full-text review. Agreement on a 10% random sample of all abstracts and full text was 79% (k=0.58) and 86% (k=0.72), respectively. Discussion was needed for fewer than 100 references, and agreement was subsequently reached for 100%.

There were 22 randomized controlled trials and 8 nonrandomized studies (5 nonrandomized controlled trials and 3 controlled before-after studies). Most of these studies were conducted in the United States (13/30 studies), followed by other European countries (5 studies), and the United Kingdom (4 studies). A large number of studies were conducted among patients with cardiovascular disease or risk factors (10 studies), followed by postsurgical patients such as coronary artery bypass graft surgery or orthopaedic surgery (5 studies). Five of 30 studies were conducted among individuals older than 65 years. Most studies excluded patients who did not speak English or the country’s official language; only 3 studies included patients with limited literacy, patients who spoke other languages, or caregivers if the patients could not communicate.

Most studies tested the impact of educational discharge interventions (28 of 30 studies) (Table 1). Quite often, it was a member of the research team who carried out the patient education. Only 3 studies involved multiple members of the care team in designing or reviewing the discharge tool with the patient. Almost half (12 studies) targeted multiple aspects of postdischarge care, including medications and side effects, signs and symptoms to consider, plans for follow-up, dietary restrictions, and/or exercise modifications. Many (19 studies) provided education using one-on-one teaching in association with a discharge tool, accompanied by a written handout (13 studies), audiotape (2 studies), or video (3 studies). While 13 studies had patients involved in creating what content was discussed and 14 studies had patients involved in the delivery of the tool, only 6 studies had patients involved in both design and delivery of the tool. Nine studies also used visual aids such as pictures, larger font, or use of a tool enhanced for patients with language barriers or limited health literacy.

Among all 30 studies included, 16 studies tested the impact of their tool on comprehension postdischarge, with 10 studies demonstrating an improvement among patients who had received the tool (Table 2). Five studies evaluated healthcare utilization outcomes such as readmission, length of stay, or physician visits after discharge and 2 studies found improvements. Twelve studies also studied the impact on adherence with medications, diet, exercise, or follow-up instructions postdischarge. However, only 4 of these 12 studies showed a positive impact. Only 2 studies tested the impact on a patient’s ability to self-manage once at home, and both studies reported positive statistical outcomes. Few studies measured patient experience (such as patient satisfaction or improvement in self-efficacy) or mortality postdischarge.

 

 

DISCUSSION/CONCLUSION

Our systematic review found 30 studies that engaged patients during the design or the delivery of a discharge instruction tool and that tested the effect of the tool on postdischarge outcomes.^6-10,14–38 Our review suggests that there is sufficient evidence that patient-centered discharge tools improve comprehension. However, evidence is currently insufficient to determine if patient-centered tools improve adherence with discharge instructions. Moreover, though limited studies show promising results, more studies are needed to determine if patient engagement improves self-efficacy and healthcare utilization after discharge.

A major limitation of current studies is the variability in the level of patient engagement in tool design or delivery. Patients were involved in the design mostly through targeted development of a discharge management plan and the delivery by encouraging them to ask questions. Few studies involved patients in the design of the tool such that patients were responsible for coming up with content that was of interest to them. The few that did, often with the additional use of video media, demonstrated significant outcomes. Only a minority of studies used an interactive process to assess understanding such as “teach-back” or maximize patient comprehension such as visual aids. Even fewer studies engaged patients in both developing the discharge tool and providing discharge instructions.

Several previous studies have demonstrated that most complications after discharge are the result of ineffective communication, which can be exacerbated by lack of fluency in English or by limited health literacy.^2,39-43 As a result, poor understanding of discharge instructions by patients and their caregivers can create an important care gap.⁴⁴ Therefore, the use of patient-centered tools to engage patients at discharge in their own care is needed. How to engage patients consistently and effectively is perhaps less evident, as demonstrated in this review of the literature in which different levels of patient engagement were found. Many of the tools tested placed attention on patient education, sometimes in the context of bundled care along with home visits or follow-up, all of which can require extensive resources and time. Providing patients with information that the patients themselves state is of value may be the easiest refinement to a discharge educational tool, although this was surprisingly uncommon.^{6,9,10,17,23,33,37} Only 2 studies were found that engaged patients in the initial stage of design of the discharge tool, by incorporating information of interest to them.^23,32 For example, a study testing the impact of a computer-generated written education package on poststroke outcomes designed the information by asking patients to identify which topics they would like to receive information about (along with the amount of information and font size).²³ Secondly, although most of the discharge tools reviewed included the use of one-on-one teaching and the use of media such as patient handouts, these tools were often used in such a way that patients were passive recipients. In fact, studies that used additional video media that incorporated personalized content were the most likely to demonstrate positive outcomes.^17,34 The next level of patient engagement may therefore be to involve the patient as an interactive partner when delivering the tool in order to empower patients to self-care. For example, 1 study designed a structured education program by first assessing lifestyle risk factors related to hypertension that were modifiable along with preconceived notions through open-ended questions during a one-on-one interview.³⁷ Patients were subsequently educated on any knowledge deficits regarding the management of their lifestyle. Another level of patient engagement may be to use visual aids during discussions, as a well-known complement to verbal instructions.^45,46 For example, in a controlled study that randomized a ward of elderly patients with 4 or more prescriptions to predischarge counseling, the counseling session aimed to review reasons for their prescriptions along with corresponding side effects, doses, and dosage times with the help of a medicine reminder card. Other uses of visual aid tools identified in our review included the use of pictograms or illustrations or, at minimum, attention to font size.^{7,8,16,29,33,35} In the absence of a visual aid, asking the patient to repeat or demonstrate what was just communicated can be used to assess the amount of information retained.^18,33

An important result discovered in our review of the literature was also the lack of studies that tested the impact of discharge tools on usability of discharge information once at home. Conducting an evaluation of the benefits to patients after discharge can help objectify vague outcomes like health gains or qualify benefits in patient’s views. This might also explain why many studies with documented patient engagement at the time of discharge were able to demonstrate improvements in comprehension but not adherence to instructions. Although patients and caregivers may understand the information, this comprehension does not necessarily mean they will find the information useful or adhere to it once at home. For example, in 1 study, patients discharged with at least 1 medication were randomized to a structured discharge interview during which the treatment plan was reviewed verbally and questions clarified along with a visually enhanced treatment card.²⁶ Although knowledge of medications increased, no effect was found on adherence at 1 week postdischarge. However, use of the treatment card at home was not assessed. Similarly, another study tested the effect of an individualized video of exercises and failed to find a difference in patient adherence at 4 weeks.²⁸ The authors suggested that the lack of benefit may have been because patients were not using the video once at home. This is in contrast to 2 studies that involved patients in their own care by requiring them to request their medication as part of a self-medication tool predischarge.^16,30 Patients were engaged in the process such that increasing independence was given to patients based on their demonstration of understanding and adherence to their treatment while still in the hospital, a learning tool that can be applied once at home. Feeling knowledgeable and involved, as others have suggested, may be the intermediary outcomes that led to improved adherence.⁴⁷ It is also possible that adherence to discharge instructions may vary based on complexity of the information provided, such that instructions focusing solely on medication use may require less patient engagement than discharge instructions that include information on medications, diet, exercise modifications, and follow-up.⁴⁸

Our review has a few limitations. Previous systematic reviews have demonstrated that bundled discharge interventions that include patient-centered education have a positive effect on outcomes postdischarge.^2,5 However, we sought to describe and study the individual and distinct impact of patient engagement in the creation and delivery of discharge tools on outcomes postdischarge. We hoped that this may provide others with key information regarding elements of patient engagement that were particularly useful when designing a new discharge tool. The variability of the studies we identified, however, made it difficult to ascertain what level of patient engagement is required to observe improvements in health outcomes. It is also possible that a higher level of patient engagement may have been used but not described in the studies we reviewed. As only primary outcomes were included, we may have underestimated the effect of patient-centered discharge tools on outcomes that were reported as secondary outcomes. As we were interested in reviewing as many studies of patient-centered discharge tools as possible, we did not assess the quality of the studies and cannot comment on the role of bias in these studies. However, we excluded studies with study designs known to have the highest risk of bias. Lastly, we also cannot comment on whether patient-centered tools may have an effect on outcomes more than 3 months after a hospital discharge. However, several studies included in this review suggest a sustained effect beyond this time period.^8,25,32,37

Patient-centered discharge tools in which patients were engaged in the design or the delivery were found to improve comprehension of but not adherence with discharge instructions. The perceived lack of improved adherence may be due to a lack of studies that measured the usefulness and utilization of information for patients once at home. There was also substantial variability in the extent of patient involvement in designing the style and content of information provided to patients at discharge, as well as the extent of patient engagement when receiving discharge instructions. Future studies would benefit from detailing the level of patient engagement needed in designing and delivery of discharge tools. This information may lead to the discovery of barriers and facilitators to utilization of discharge information once at home and lead to a better understanding of the patient’s journey from hospital to home and onwards.

 

C.M.B. and this work were funded by a CIHR Canadian Patient Safety Institute Chair in Patient Safety and Continuity of Care. Funding was provided to cover fees to obtain articles from the Donald J. Matthews Complex Care Fund of the University Health Network in Toronto, Canada. The Toronto Central Local Health Integration Network provided funding for the design and implementation of a patient-oriented discharge summary. None of the funding or supportive agencies were involved in the design or conduct of the present study, analysis, or interpretation of the data, or approval of the manuscript.

Disclosures

The authors report no conflicts of interest.

 

Patient-centered care, defined by the Institute of Medicine as “health care that establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients’ wants, needs and preferences and that patients have the education and support they need to make decisions and participate in their own care,” has been recognized as an important factor in improving care transitions after discharge from the hospital.¹ Previous efforts to improve the discharge process for hospitalized patients and reduce avoidable readmissions have focused on improving systems surrounding the patient, such as by increasing the availability of outpatient follow-up or standardizing communication between the inpatient and outpatient care teams.^1,2 In fact, successful programs such as Project BOOST and the Care Transitions Interventions™ provide healthcare institutions with a “bundle” of evidence-based transitional care guidelines for discharge: they provide postdischarge transition coaches, assistance with medication self-management, timely follow-up tips, and improved patient records in order to improve postdischarge outcomes.^3,4 Successful interventions, however, may not provide more services, but also engage the patient in their own care.^5,6 The impact of engaging the patient in his or her own care by providing patient-friendly discharge instructions alone, however, is unknown.

A patient-centered discharge may use tools that were designed with patients, or may involve engaging patients in an interactive process of reviewing discharge instructions and empowering them to manage aspects of their own care after leaving the hospital. This endeavour may lead to more effective use of discharge instructions and reduce the need for additional or more intensive (and costly) interventions. For example, a patient-centered discharge tool could include an educational intervention that uses the “teach-back” method, in which patients are asked to restate in their own words what they thought they heard, or in which staff use additional media or a visual design tool meant to enhance comprehension of discharge instructions.^6,7 Visual aids and the use of larger fonts are particularly useful design elements for improving comprehension among non-English speakers and patients with low health literacy, who tend to have poorer recall of instructions.^8-10 What may constitute essential design elements to include in a discharge instruction tool, however, is not clear.

Moreover, whether the use of discharge tools with a specific focus on patient engagement may improve postdischarge outcomes is not known. Particularly, the ability of patient-centered discharge tools to improve outcomes beyond comprehension such as self-management, adherence to discharge instructions, a reduction in unplanned visits, and a reduction in mortality has not been studied systematically. The objective of this systematic review was to review the literature on discharge instruction tools with a focus on patient engagement and their impact among hospitalized patients.

 

METHODS

The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) Statement was followed as a guideline for reporting throughout this review.¹¹

Data Sources

A literature search was undertaken using the following databases from January 1994 or their inception date to May 2014: Medline, Embase, SIGLE, HTA, Bioethics, ASSIA, Psych Lit, CINAHL, Cochrane Library, EconLit, ERIC, and BioMed Central. We also searched relevant design-focused journals such as Design Issues, Journal of Design Research, Information Design Journal, Innovation, Design Studies, and International Journal of Design, as well as reference lists from studies obtained by electronic searching. The following key words and combination of key words were used with the assistance of a medical librarian: patient discharge, patient-centered discharge, patient-centered design, design thinking, user based design, patient education, discharge summary, education. Additional search terms were added when identified from relevant articles (Appendix).

Inclusion Criteria

We included all English-language studies with patients admitted to the hospital irrespective of age, sex, or medical condition, which included a control group or time period and which measured patient outcomes within 3 months of discharge. The 3-month period after discharge is often cited as a time when outcomes could reasonably be associated with an intervention at discharge.²

Exclusion Criteria

Studies that did not have clear implementation of a patient-centered tool, a control group, or those whose tool was used in the emergency department or as an outpatient were excluded. Studies that included postdischarge tools such as home visits or telephone calls were excluded unless independent effects of the predischarge interventions were measured. Studies with outcomes reported after 3 months were excluded unless outcomes before 3 months were also clearly noted.

All searches were entered into Endnote and duplicates were removed. A 2-stage inclusion process was used. Titles and abstracts of articles were first screened for meeting inclusion and exclusion criteria by 1 reviewer. A second reviewer independently checked a 10% random sample of all the abstracts that met the initial screening criteria. If the agreement to exclude studies was less than 95%, criteria were reviewed before checking the rest of the 90% sample. In the second stage, 2 independent reviewers examined paper copies of the full articles selected in the first stage. Disagreement between reviewers was resolved by discussion or a third reviewer if no agreement could be reached.

Data Analysis and Synthesis

The following information was extracted from the full reference: type of study, population studied, control group or time period, tool used, and outcomes measured. Based on the National Health Care Quality report’s priorities and goals on patient and/or family engagement during transitions of care, educational tools were further described based on method of teaching, involvement of the care team, involvement of the patient in the design or delivery of the tool, and/or the use of visual aids.¹² All primary outcomes were classified according to 3 categories: improved knowledge/comprehension, patient experience (patient satisfaction, self-management/efficacy such as functional status, both physical and mental), and health outcomes (unscheduled visits or readmissions, adherence with medications, diet, exercise, or follow-up, and mortality).

No quantitative pooling of results or meta-analysis was done given the variability and heterogeneity of studies reviewed. However, following guidelines for Effect Practice and Organisation of Care (EPOC) Risk of Bias criteria,¹³ studies that had a higher risk of bias such as uncontrolled before-after studies or studies with only 1 intervention or control site (historical controls, eg) were excluded from the final review because of the difficulties in attributing causation. Only primary outcomes were reported in order to minimize type II errors.

RESULTS

Our search revealed a total of 3699 studies after duplicates had been removed (Figure). A total of 714 references were included after initial review by title and abstract and 30 studies after full-text review. Agreement on a 10% random sample of all abstracts and full text was 79% (k=0.58) and 86% (k=0.72), respectively. Discussion was needed for fewer than 100 references, and agreement was subsequently reached for 100%.

There were 22 randomized controlled trials and 8 nonrandomized studies (5 nonrandomized controlled trials and 3 controlled before-after studies). Most of these studies were conducted in the United States (13/30 studies), followed by other European countries (5 studies), and the United Kingdom (4 studies). A large number of studies were conducted among patients with cardiovascular disease or risk factors (10 studies), followed by postsurgical patients such as coronary artery bypass graft surgery or orthopaedic surgery (5 studies). Five of 30 studies were conducted among individuals older than 65 years. Most studies excluded patients who did not speak English or the country’s official language; only 3 studies included patients with limited literacy, patients who spoke other languages, or caregivers if the patients could not communicate.

Most studies tested the impact of educational discharge interventions (28 of 30 studies) (Table 1). Quite often, it was a member of the research team who carried out the patient education. Only 3 studies involved multiple members of the care team in designing or reviewing the discharge tool with the patient. Almost half (12 studies) targeted multiple aspects of postdischarge care, including medications and side effects, signs and symptoms to consider, plans for follow-up, dietary restrictions, and/or exercise modifications. Many (19 studies) provided education using one-on-one teaching in association with a discharge tool, accompanied by a written handout (13 studies), audiotape (2 studies), or video (3 studies). While 13 studies had patients involved in creating what content was discussed and 14 studies had patients involved in the delivery of the tool, only 6 studies had patients involved in both design and delivery of the tool. Nine studies also used visual aids such as pictures, larger font, or use of a tool enhanced for patients with language barriers or limited health literacy.

Among all 30 studies included, 16 studies tested the impact of their tool on comprehension postdischarge, with 10 studies demonstrating an improvement among patients who had received the tool (Table 2). Five studies evaluated healthcare utilization outcomes such as readmission, length of stay, or physician visits after discharge and 2 studies found improvements. Twelve studies also studied the impact on adherence with medications, diet, exercise, or follow-up instructions postdischarge. However, only 4 of these 12 studies showed a positive impact. Only 2 studies tested the impact on a patient’s ability to self-manage once at home, and both studies reported positive statistical outcomes. Few studies measured patient experience (such as patient satisfaction or improvement in self-efficacy) or mortality postdischarge.

 

 

DISCUSSION/CONCLUSION

Our systematic review found 30 studies that engaged patients during the design or the delivery of a discharge instruction tool and that tested the effect of the tool on postdischarge outcomes.^6-10,14–38 Our review suggests that there is sufficient evidence that patient-centered discharge tools improve comprehension. However, evidence is currently insufficient to determine if patient-centered tools improve adherence with discharge instructions. Moreover, though limited studies show promising results, more studies are needed to determine if patient engagement improves self-efficacy and healthcare utilization after discharge.

A major limitation of current studies is the variability in the level of patient engagement in tool design or delivery. Patients were involved in the design mostly through targeted development of a discharge management plan and the delivery by encouraging them to ask questions. Few studies involved patients in the design of the tool such that patients were responsible for coming up with content that was of interest to them. The few that did, often with the additional use of video media, demonstrated significant outcomes. Only a minority of studies used an interactive process to assess understanding such as “teach-back” or maximize patient comprehension such as visual aids. Even fewer studies engaged patients in both developing the discharge tool and providing discharge instructions.

Several previous studies have demonstrated that most complications after discharge are the result of ineffective communication, which can be exacerbated by lack of fluency in English or by limited health literacy.^2,39-43 As a result, poor understanding of discharge instructions by patients and their caregivers can create an important care gap.⁴⁴ Therefore, the use of patient-centered tools to engage patients at discharge in their own care is needed. How to engage patients consistently and effectively is perhaps less evident, as demonstrated in this review of the literature in which different levels of patient engagement were found. Many of the tools tested placed attention on patient education, sometimes in the context of bundled care along with home visits or follow-up, all of which can require extensive resources and time. Providing patients with information that the patients themselves state is of value may be the easiest refinement to a discharge educational tool, although this was surprisingly uncommon.^{6,9,10,17,23,33,37} Only 2 studies were found that engaged patients in the initial stage of design of the discharge tool, by incorporating information of interest to them.^23,32 For example, a study testing the impact of a computer-generated written education package on poststroke outcomes designed the information by asking patients to identify which topics they would like to receive information about (along with the amount of information and font size).²³ Secondly, although most of the discharge tools reviewed included the use of one-on-one teaching and the use of media such as patient handouts, these tools were often used in such a way that patients were passive recipients. In fact, studies that used additional video media that incorporated personalized content were the most likely to demonstrate positive outcomes.^17,34 The next level of patient engagement may therefore be to involve the patient as an interactive partner when delivering the tool in order to empower patients to self-care. For example, 1 study designed a structured education program by first assessing lifestyle risk factors related to hypertension that were modifiable along with preconceived notions through open-ended questions during a one-on-one interview.³⁷ Patients were subsequently educated on any knowledge deficits regarding the management of their lifestyle. Another level of patient engagement may be to use visual aids during discussions, as a well-known complement to verbal instructions.^45,46 For example, in a controlled study that randomized a ward of elderly patients with 4 or more prescriptions to predischarge counseling, the counseling session aimed to review reasons for their prescriptions along with corresponding side effects, doses, and dosage times with the help of a medicine reminder card. Other uses of visual aid tools identified in our review included the use of pictograms or illustrations or, at minimum, attention to font size.^{7,8,16,29,33,35} In the absence of a visual aid, asking the patient to repeat or demonstrate what was just communicated can be used to assess the amount of information retained.^18,33

An important result discovered in our review of the literature was also the lack of studies that tested the impact of discharge tools on usability of discharge information once at home. Conducting an evaluation of the benefits to patients after discharge can help objectify vague outcomes like health gains or qualify benefits in patient’s views. This might also explain why many studies with documented patient engagement at the time of discharge were able to demonstrate improvements in comprehension but not adherence to instructions. Although patients and caregivers may understand the information, this comprehension does not necessarily mean they will find the information useful or adhere to it once at home. For example, in 1 study, patients discharged with at least 1 medication were randomized to a structured discharge interview during which the treatment plan was reviewed verbally and questions clarified along with a visually enhanced treatment card.²⁶ Although knowledge of medications increased, no effect was found on adherence at 1 week postdischarge. However, use of the treatment card at home was not assessed. Similarly, another study tested the effect of an individualized video of exercises and failed to find a difference in patient adherence at 4 weeks.²⁸ The authors suggested that the lack of benefit may have been because patients were not using the video once at home. This is in contrast to 2 studies that involved patients in their own care by requiring them to request their medication as part of a self-medication tool predischarge.^16,30 Patients were engaged in the process such that increasing independence was given to patients based on their demonstration of understanding and adherence to their treatment while still in the hospital, a learning tool that can be applied once at home. Feeling knowledgeable and involved, as others have suggested, may be the intermediary outcomes that led to improved adherence.⁴⁷ It is also possible that adherence to discharge instructions may vary based on complexity of the information provided, such that instructions focusing solely on medication use may require less patient engagement than discharge instructions that include information on medications, diet, exercise modifications, and follow-up.⁴⁸

Our review has a few limitations. Previous systematic reviews have demonstrated that bundled discharge interventions that include patient-centered education have a positive effect on outcomes postdischarge.^2,5 However, we sought to describe and study the individual and distinct impact of patient engagement in the creation and delivery of discharge tools on outcomes postdischarge. We hoped that this may provide others with key information regarding elements of patient engagement that were particularly useful when designing a new discharge tool. The variability of the studies we identified, however, made it difficult to ascertain what level of patient engagement is required to observe improvements in health outcomes. It is also possible that a higher level of patient engagement may have been used but not described in the studies we reviewed. As only primary outcomes were included, we may have underestimated the effect of patient-centered discharge tools on outcomes that were reported as secondary outcomes. As we were interested in reviewing as many studies of patient-centered discharge tools as possible, we did not assess the quality of the studies and cannot comment on the role of bias in these studies. However, we excluded studies with study designs known to have the highest risk of bias. Lastly, we also cannot comment on whether patient-centered tools may have an effect on outcomes more than 3 months after a hospital discharge. However, several studies included in this review suggest a sustained effect beyond this time period.^8,25,32,37

Patient-centered discharge tools in which patients were engaged in the design or the delivery were found to improve comprehension of but not adherence with discharge instructions. The perceived lack of improved adherence may be due to a lack of studies that measured the usefulness and utilization of information for patients once at home. There was also substantial variability in the extent of patient involvement in designing the style and content of information provided to patients at discharge, as well as the extent of patient engagement when receiving discharge instructions. Future studies would benefit from detailing the level of patient engagement needed in designing and delivery of discharge tools. This information may lead to the discovery of barriers and facilitators to utilization of discharge information once at home and lead to a better understanding of the patient’s journey from hospital to home and onwards.

 

C.M.B. and this work were funded by a CIHR Canadian Patient Safety Institute Chair in Patient Safety and Continuity of Care. Funding was provided to cover fees to obtain articles from the Donald J. Matthews Complex Care Fund of the University Health Network in Toronto, Canada. The Toronto Central Local Health Integration Network provided funding for the design and implementation of a patient-oriented discharge summary. None of the funding or supportive agencies were involved in the design or conduct of the present study, analysis, or interpretation of the data, or approval of the manuscript.

Disclosures

The authors report no conflicts of interest.

 

From the OpenLab, University Health Network, Toronto, Canada (Dr. Hahn-Goldberg, Dr. Okrainec, Dr. Abrams, Mr. Huynh); School of Health Policy and Management, York University, Toronto (Dr. Hahn-Goldberg); Toronto Central Local Health Integration Network (Ms. Damba); Centre for Addiction and Mental Health, Toronto (Ms. Solomon); and the Department of Medicine, University Health Network, Toronto (Dr. Okrainec, Dr. Abrams).

 

Abstract

• Objective: To describe the co-design process we under-took to create a patient-oriented discharge summary (PODS) with patients, caregivers, and providers.
• Method: Descriptive report.
• Results: We designed and produced a prototype PODS, based on best practices in information design, graphic design, and patient education. Through a co-design process, patients, health care providers, designers and system planners worked together to establish what content needed to be included, as well as how it would be organized and presented. From an initial prototype, we then refined the PODS through an iterative participatory design process involving patients, including those from hard-to-reach groups such as patients with language barriers and/or low health literacy and patients with a primary psychiatric diagnosis.
• Conclusion: Co-design events and targeted focus groups are very useful for engaging patients and caregivers in the design and development of solutions aimed at improving their experience of care. It is important to include all users, especially those who are harder to reach, such as patients with language barriers and mental health conditions. Engaging health care providers is essential to ensure feasibility of those solutions.

 

Traditional discharge summaries are written primarily for the patient’s primary care provider and are not designed as tools to support communication between the clinician and patient regarding instructions for patients to follow at home post discharge. A more patient-centered version of the discharge summary is needed to complement the traditional format.

To enhance our patients’ care experience in the post-discharge period, we set out to co-design a patient-oriented discharge summary (PODS) with patients, caregivers, and providers. The main objective of this project was to develop a prototype PODS that not only addressed critical information that patients felt was the most important to know following discharge, but also provided this information in the most comprehensible format at hospitals within the Toronto area. The project focused on reformatting patient-care instructions for patients discharged from inpatient medical wards as these instructions presented the best opportunity for improvement.

This project drew on work done in countries such as India, South Africa, and Pakistan, where challenges with general and health literacy have led to the introduction of simplified discharge forms and medication instructions that place a greater emphasis on visual communication to improve information comprehension. For example, the use of pictograms in patient materials has been shown to increase patient understanding of and compliance with care instructions in these countries [1–3].

We have provided an overview of the PODS project elsewhere [4]. In this article, we describe the co-design process we undertook with patients, health care providers, and designers in creating a PODS.

Design Methods

We used several methods to design and develop the PODS and to engage multiple stakeholders in the design process. Among these methods were innovative techniques for understanding the patient experience of discharge, such as cultural probes [5], where patients were given journals and cameras to document their time at home after discharge, as described by Hahn-Goldberg et al [4]. Other key methods for determining the design of the PODS included:

Patient education consultation. A patient education representative with training and expertise in designing materials for patients with low health literacy was added to the team advisory committee to act as a consultant at all stages of the study. This helped to ensure that we would be following best practices in design for our target population.

Review of literature. We reviewed the literature pertaining to design for patients with low health literacy and language barriers, including the resources available through the patient education department at the University Health Network.

Review of Toronto Central Local Health Integration Network (TCLHIN) hospitals’ tools: current discharge summaries, components they included and how they were formatted.

Co-design event. We held an interprofessional design event where teams of patients, health care providers, and designers worked together to create draft PODS for 4 hypothetical patient cases.

Focus groups and surveys. We used feedback from focus groups and surveys to revise and improve the first PODS prototype.

Insights from the Literature

Studies have shown that multiple interventions tend to increase adherence, that self-management should be encouraged, and that modes of communication other than verbal must be used [6]. Visual cues, such as pictures or symbols, are useful to help with recall of medications and instructions for people with language barriers or limited health literacy [7]. Simplified written instructions and larger fonts have been found to be effective in patients with language barriers or limited health literacy, as have use of illustrated medication schedules [8]. Other guidelines include using short words and sentences, writing directly to the reader, listing important points in list format, and using left justification so there is even spacing between words.

The literature is consistent with our findings from speaking with patient education representatives and patients. Patients and caregivers noted that the PODS should be written in plain language, use large fonts, include illustrations of care and medication schedules, and include headings that are meaningful to the patient. Patients also expressed the desire for charts and lists that they could use while completing their follow-up care plan.

“My mom made me a chart of when to drink water and how much (patient).”

“We were given a sheet to record all feedings (caregiver).”

“We can provide a list of patient meds in a grid format with days of the week and times of day. We use our judgement to give this to patients. It is not standard practice (pharmacist).”

“A discharge form in ‘plain English’ should be standardized (patient).”

 

The Co-design Event

For the co-design event we created 4 patient cases that highlighted common factors that may complicate a discharge transition home, namely: patient age (pediatric and elderly patients), language barriers, limited health literacy, multiple health conditions, multiple medications, lack of a primary care doctor, and multiple follow-up visits (Table 1). The event had 21 attendees and 2 facilitators; details of the attendee composition and demographics are provided in Table 2. Participants in the design event were divided into 4 teams, and each team had a minimum of 1 patient, 1 provider, and 1 designer. Each team had 25 minutes per case to create a PODS for each of the 4 cases, and there were no other rules. 

To ensure a spirit of open-mindedness and collaboration during the event, we used strategies outlined in the Design Thinking for Educators Toolkit to guide the process (Figure 1) [9]. Following the event, all participants were asked to complete an evaluation form where they had the opportunity to relay any information they did not have a chance to share during the event.

Solutions resulting from the design event ranged from more traditional discharge summaries that were enhanced with multiple languages and images to make things clear for patients, to solutions including interactive patient portals. There were solutions that came with stickers to color-code your medications, areas for patients to write notes, and checklists for them to keep track of all their follow-up plans. 

The output included key information for patients such as phone numbers of who to call with questions and expectations for the first week home from the hospital. Almost all solutions contained a calendar view. Figure 2 shows a sample of the draft PODS created by the teams during the event. Details on the specific elements the participants suggested including in the PODS are listed in Table 3.

Refining the Design Using Focus Groups and Surveys

The ideas and concepts generated during the design event were analyzed by the interdisciplinary advisory team at OpenLab. In addition, several team sessions were held with health care 

providers who attended the design event and who worked in local hospitals to determine feasibility of the PODS. Based on the results of the co-design event and literature review, a designer created the first PODS prototype (Figure 3).

Using the first prototype and a sample case study, we held a series of focus groups and conducted 2 online surveys to get feedback on how the prototype could be further improved. Focus groups were held deliberately with harder-to-reach patient groups that do not typically provide input (eg, patients with extreme language barriers), and surveys were used to reach a broader and larger audience of patients and caregivers (Table 4). Figure 4 provides a sample of questions asked. The first prototype was then revised based on what we learned from the focus groups and surveys to create the second prototype (Figure 5). Table 5 provides the output from the focus groups and surveys that influenced the changes that were made to the first prototype. In all cases, the groups (see Table 4) that provided specific feedback is indicated. Most of the feedback from the focus groups and surveys was positive. All patients noted that they would love to receive a PODS

 and would find it useful when they are discharged from hospital. A patient's comment:

This is a great piece. You guys are doing an awesome job. This would have saved me so much anxiety and fear of doing something wrong when I was discharged. I didn’t want to bother my doctors and went on a hope and prayer. Even my home care people weren’t always sure of what to do. Again this would be a great step forward in easing patients’ fears, especially senior citizens. GREAT WORK. THANKS FOR CARING.

Discussion

Innovative methods such as co-design events and targeted focus groups are very useful for 

engaging patients and caregivers in the design and development of solutions aimed at improving their experience of care, resulting in solutions that are more successful. It is important to include all users, especially those who are harder to reach, such as patients with language barriers and mental health conditions. In addition, 

engaging health care providers is essential to ensure feasibility of those solutions. During the co-design process, it was difficult to truly engage harder-to-reach patient populations. At first, we tried using traditional methods of engagement such as approaching patient advisory boards and posting flyers for focus groups; however, although patients agreed to participate, very few had extreme language barriers or limited health literacy. As such, considerable time and effort was made to target harder-to-reach patients by enlisting interpreters, having flyers translated, and offering incentives. Additionally, we made use of ongoing patient meeting groups of patients with mental health issues and had health care providers screen patients for limited health literacy.

 

Future Plans

The PODS template has now been adapted and implemented in several hospitals in Toronto, Canada, using a supported early adopter process [10]. Future plans are to test the impact of the PODS on patient experience and health outcomes using a randomized controlled trial. Also, for now, we have focused on a paper version of PODS, but with the increasing prevalence of electronic health records and consumer-oriented health care apps, future consideration for a digital and mobile version of PODS is warranted.

 

 

Conclusion

Patients need to be prepared for discharge so that they can engage in supported self-management once they return home. 

The PODS is one way to support this process and provides a resource that patients can repeatedly refer to once they are discharged. Care should be taken to include key information that is helpful for patients and to provide that information in a way that patients can understand and use. The PODS should incorporate important design elements for patients with low health literacy and language and visual barriers such as using plain language, large fonts, and visuals.

 

Corresponding author: Shoshana Hahn-Goldberg, PhD, 294 Mullen Dr., Thornhill, ON L4J 2P2.

Funding/support: The PODS project has been funded by the Toronto Central Local Health Integration Network.

Financial disclosures: None.

From the OpenLab, University Health Network, Toronto, Canada (Dr. Hahn-Goldberg, Dr. Okrainec, Dr. Abrams, Mr. Huynh); School of Health Policy and Management, York University, Toronto (Dr. Hahn-Goldberg); Toronto Central Local Health Integration Network (Ms. Damba); Centre for Addiction and Mental Health, Toronto (Ms. Solomon); and the Department of Medicine, University Health Network, Toronto (Dr. Okrainec, Dr. Abrams).

 

Abstract

• Objective: To describe the co-design process we under-took to create a patient-oriented discharge summary (PODS) with patients, caregivers, and providers.
• Method: Descriptive report.
• Results: We designed and produced a prototype PODS, based on best practices in information design, graphic design, and patient education. Through a co-design process, patients, health care providers, designers and system planners worked together to establish what content needed to be included, as well as how it would be organized and presented. From an initial prototype, we then refined the PODS through an iterative participatory design process involving patients, including those from hard-to-reach groups such as patients with language barriers and/or low health literacy and patients with a primary psychiatric diagnosis.
• Conclusion: Co-design events and targeted focus groups are very useful for engaging patients and caregivers in the design and development of solutions aimed at improving their experience of care. It is important to include all users, especially those who are harder to reach, such as patients with language barriers and mental health conditions. Engaging health care providers is essential to ensure feasibility of those solutions.

 

Traditional discharge summaries are written primarily for the patient’s primary care provider and are not designed as tools to support communication between the clinician and patient regarding instructions for patients to follow at home post discharge. A more patient-centered version of the discharge summary is needed to complement the traditional format.

To enhance our patients’ care experience in the post-discharge period, we set out to co-design a patient-oriented discharge summary (PODS) with patients, caregivers, and providers. The main objective of this project was to develop a prototype PODS that not only addressed critical information that patients felt was the most important to know following discharge, but also provided this information in the most comprehensible format at hospitals within the Toronto area. The project focused on reformatting patient-care instructions for patients discharged from inpatient medical wards as these instructions presented the best opportunity for improvement.

This project drew on work done in countries such as India, South Africa, and Pakistan, where challenges with general and health literacy have led to the introduction of simplified discharge forms and medication instructions that place a greater emphasis on visual communication to improve information comprehension. For example, the use of pictograms in patient materials has been shown to increase patient understanding of and compliance with care instructions in these countries [1–3].

We have provided an overview of the PODS project elsewhere [4]. In this article, we describe the co-design process we undertook with patients, health care providers, and designers in creating a PODS.

Design Methods

We used several methods to design and develop the PODS and to engage multiple stakeholders in the design process. Among these methods were innovative techniques for understanding the patient experience of discharge, such as cultural probes [5], where patients were given journals and cameras to document their time at home after discharge, as described by Hahn-Goldberg et al [4]. Other key methods for determining the design of the PODS included:

Patient education consultation. A patient education representative with training and expertise in designing materials for patients with low health literacy was added to the team advisory committee to act as a consultant at all stages of the study. This helped to ensure that we would be following best practices in design for our target population.

Review of literature. We reviewed the literature pertaining to design for patients with low health literacy and language barriers, including the resources available through the patient education department at the University Health Network.

Review of Toronto Central Local Health Integration Network (TCLHIN) hospitals’ tools: current discharge summaries, components they included and how they were formatted.

Co-design event. We held an interprofessional design event where teams of patients, health care providers, and designers worked together to create draft PODS for 4 hypothetical patient cases.

Focus groups and surveys. We used feedback from focus groups and surveys to revise and improve the first PODS prototype.

Insights from the Literature

Studies have shown that multiple interventions tend to increase adherence, that self-management should be encouraged, and that modes of communication other than verbal must be used [6]. Visual cues, such as pictures or symbols, are useful to help with recall of medications and instructions for people with language barriers or limited health literacy [7]. Simplified written instructions and larger fonts have been found to be effective in patients with language barriers or limited health literacy, as have use of illustrated medication schedules [8]. Other guidelines include using short words and sentences, writing directly to the reader, listing important points in list format, and using left justification so there is even spacing between words.

The literature is consistent with our findings from speaking with patient education representatives and patients. Patients and caregivers noted that the PODS should be written in plain language, use large fonts, include illustrations of care and medication schedules, and include headings that are meaningful to the patient. Patients also expressed the desire for charts and lists that they could use while completing their follow-up care plan.

“My mom made me a chart of when to drink water and how much (patient).”

“We were given a sheet to record all feedings (caregiver).”

“We can provide a list of patient meds in a grid format with days of the week and times of day. We use our judgement to give this to patients. It is not standard practice (pharmacist).”

“A discharge form in ‘plain English’ should be standardized (patient).”

 

The Co-design Event

For the co-design event we created 4 patient cases that highlighted common factors that may complicate a discharge transition home, namely: patient age (pediatric and elderly patients), language barriers, limited health literacy, multiple health conditions, multiple medications, lack of a primary care doctor, and multiple follow-up visits (Table 1). The event had 21 attendees and 2 facilitators; details of the attendee composition and demographics are provided in Table 2. Participants in the design event were divided into 4 teams, and each team had a minimum of 1 patient, 1 provider, and 1 designer. Each team had 25 minutes per case to create a PODS for each of the 4 cases, and there were no other rules. 

To ensure a spirit of open-mindedness and collaboration during the event, we used strategies outlined in the Design Thinking for Educators Toolkit to guide the process (Figure 1) [9]. Following the event, all participants were asked to complete an evaluation form where they had the opportunity to relay any information they did not have a chance to share during the event.

Solutions resulting from the design event ranged from more traditional discharge summaries that were enhanced with multiple languages and images to make things clear for patients, to solutions including interactive patient portals. There were solutions that came with stickers to color-code your medications, areas for patients to write notes, and checklists for them to keep track of all their follow-up plans. 

The output included key information for patients such as phone numbers of who to call with questions and expectations for the first week home from the hospital. Almost all solutions contained a calendar view. Figure 2 shows a sample of the draft PODS created by the teams during the event. Details on the specific elements the participants suggested including in the PODS are listed in Table 3.

Refining the Design Using Focus Groups and Surveys

The ideas and concepts generated during the design event were analyzed by the interdisciplinary advisory team at OpenLab. In addition, several team sessions were held with health care 

providers who attended the design event and who worked in local hospitals to determine feasibility of the PODS. Based on the results of the co-design event and literature review, a designer created the first PODS prototype (Figure 3).

Using the first prototype and a sample case study, we held a series of focus groups and conducted 2 online surveys to get feedback on how the prototype could be further improved. Focus groups were held deliberately with harder-to-reach patient groups that do not typically provide input (eg, patients with extreme language barriers), and surveys were used to reach a broader and larger audience of patients and caregivers (Table 4). Figure 4 provides a sample of questions asked. The first prototype was then revised based on what we learned from the focus groups and surveys to create the second prototype (Figure 5). Table 5 provides the output from the focus groups and surveys that influenced the changes that were made to the first prototype. In all cases, the groups (see Table 4) that provided specific feedback is indicated. Most of the feedback from the focus groups and surveys was positive. All patients noted that they would love to receive a PODS

 and would find it useful when they are discharged from hospital. A patient's comment:

This is a great piece. You guys are doing an awesome job. This would have saved me so much anxiety and fear of doing something wrong when I was discharged. I didn’t want to bother my doctors and went on a hope and prayer. Even my home care people weren’t always sure of what to do. Again this would be a great step forward in easing patients’ fears, especially senior citizens. GREAT WORK. THANKS FOR CARING.

Discussion

Innovative methods such as co-design events and targeted focus groups are very useful for 

engaging patients and caregivers in the design and development of solutions aimed at improving their experience of care, resulting in solutions that are more successful. It is important to include all users, especially those who are harder to reach, such as patients with language barriers and mental health conditions. In addition, 

engaging health care providers is essential to ensure feasibility of those solutions. During the co-design process, it was difficult to truly engage harder-to-reach patient populations. At first, we tried using traditional methods of engagement such as approaching patient advisory boards and posting flyers for focus groups; however, although patients agreed to participate, very few had extreme language barriers or limited health literacy. As such, considerable time and effort was made to target harder-to-reach patients by enlisting interpreters, having flyers translated, and offering incentives. Additionally, we made use of ongoing patient meeting groups of patients with mental health issues and had health care providers screen patients for limited health literacy.

 

Future Plans

The PODS template has now been adapted and implemented in several hospitals in Toronto, Canada, using a supported early adopter process [10]. Future plans are to test the impact of the PODS on patient experience and health outcomes using a randomized controlled trial. Also, for now, we have focused on a paper version of PODS, but with the increasing prevalence of electronic health records and consumer-oriented health care apps, future consideration for a digital and mobile version of PODS is warranted.

 

 

Conclusion

Patients need to be prepared for discharge so that they can engage in supported self-management once they return home. 

The PODS is one way to support this process and provides a resource that patients can repeatedly refer to once they are discharged. Care should be taken to include key information that is helpful for patients and to provide that information in a way that patients can understand and use. The PODS should incorporate important design elements for patients with low health literacy and language and visual barriers such as using plain language, large fonts, and visuals.

 

Corresponding author: Shoshana Hahn-Goldberg, PhD, 294 Mullen Dr., Thornhill, ON L4J 2P2.

Funding/support: The PODS project has been funded by the Toronto Central Local Health Integration Network.

Financial disclosures: None.

From the OpenLab, University Health Network, Toronto, Canada (Dr. Hahn-Goldberg, Dr. Okrainec, Dr. Abrams, Mr. Huynh); School of Health Policy and Management, York University, Toronto (Dr. Hahn-Goldberg); Toronto Central Local Health Integration Network (Ms. Damba); Centre for Addiction and Mental Health, Toronto (Ms. Solomon); and the Department of Medicine, University Health Network, Toronto (Dr. Okrainec, Dr. Abrams).

 

Abstract

• Objective: To describe the co-design process we under-took to create a patient-oriented discharge summary (PODS) with patients, caregivers, and providers.
• Method: Descriptive report.
• Results: We designed and produced a prototype PODS, based on best practices in information design, graphic design, and patient education. Through a co-design process, patients, health care providers, designers and system planners worked together to establish what content needed to be included, as well as how it would be organized and presented. From an initial prototype, we then refined the PODS through an iterative participatory design process involving patients, including those from hard-to-reach groups such as patients with language barriers and/or low health literacy and patients with a primary psychiatric diagnosis.
• Conclusion: Co-design events and targeted focus groups are very useful for engaging patients and caregivers in the design and development of solutions aimed at improving their experience of care. It is important to include all users, especially those who are harder to reach, such as patients with language barriers and mental health conditions. Engaging health care providers is essential to ensure feasibility of those solutions.

 

Traditional discharge summaries are written primarily for the patient’s primary care provider and are not designed as tools to support communication between the clinician and patient regarding instructions for patients to follow at home post discharge. A more patient-centered version of the discharge summary is needed to complement the traditional format.

To enhance our patients’ care experience in the post-discharge period, we set out to co-design a patient-oriented discharge summary (PODS) with patients, caregivers, and providers. The main objective of this project was to develop a prototype PODS that not only addressed critical information that patients felt was the most important to know following discharge, but also provided this information in the most comprehensible format at hospitals within the Toronto area. The project focused on reformatting patient-care instructions for patients discharged from inpatient medical wards as these instructions presented the best opportunity for improvement.

This project drew on work done in countries such as India, South Africa, and Pakistan, where challenges with general and health literacy have led to the introduction of simplified discharge forms and medication instructions that place a greater emphasis on visual communication to improve information comprehension. For example, the use of pictograms in patient materials has been shown to increase patient understanding of and compliance with care instructions in these countries [1–3].

We have provided an overview of the PODS project elsewhere [4]. In this article, we describe the co-design process we undertook with patients, health care providers, and designers in creating a PODS.

Design Methods

We used several methods to design and develop the PODS and to engage multiple stakeholders in the design process. Among these methods were innovative techniques for understanding the patient experience of discharge, such as cultural probes [5], where patients were given journals and cameras to document their time at home after discharge, as described by Hahn-Goldberg et al [4]. Other key methods for determining the design of the PODS included:

Patient education consultation. A patient education representative with training and expertise in designing materials for patients with low health literacy was added to the team advisory committee to act as a consultant at all stages of the study. This helped to ensure that we would be following best practices in design for our target population.

Review of literature. We reviewed the literature pertaining to design for patients with low health literacy and language barriers, including the resources available through the patient education department at the University Health Network.

Review of Toronto Central Local Health Integration Network (TCLHIN) hospitals’ tools: current discharge summaries, components they included and how they were formatted.

Co-design event. We held an interprofessional design event where teams of patients, health care providers, and designers worked together to create draft PODS for 4 hypothetical patient cases.

Focus groups and surveys. We used feedback from focus groups and surveys to revise and improve the first PODS prototype.

Insights from the Literature

Studies have shown that multiple interventions tend to increase adherence, that self-management should be encouraged, and that modes of communication other than verbal must be used [6]. Visual cues, such as pictures or symbols, are useful to help with recall of medications and instructions for people with language barriers or limited health literacy [7]. Simplified written instructions and larger fonts have been found to be effective in patients with language barriers or limited health literacy, as have use of illustrated medication schedules [8]. Other guidelines include using short words and sentences, writing directly to the reader, listing important points in list format, and using left justification so there is even spacing between words.

The literature is consistent with our findings from speaking with patient education representatives and patients. Patients and caregivers noted that the PODS should be written in plain language, use large fonts, include illustrations of care and medication schedules, and include headings that are meaningful to the patient. Patients also expressed the desire for charts and lists that they could use while completing their follow-up care plan.

“My mom made me a chart of when to drink water and how much (patient).”

“We were given a sheet to record all feedings (caregiver).”

“We can provide a list of patient meds in a grid format with days of the week and times of day. We use our judgement to give this to patients. It is not standard practice (pharmacist).”

“A discharge form in ‘plain English’ should be standardized (patient).”

 

The Co-design Event

For the co-design event we created 4 patient cases that highlighted common factors that may complicate a discharge transition home, namely: patient age (pediatric and elderly patients), language barriers, limited health literacy, multiple health conditions, multiple medications, lack of a primary care doctor, and multiple follow-up visits (Table 1). The event had 21 attendees and 2 facilitators; details of the attendee composition and demographics are provided in Table 2. Participants in the design event were divided into 4 teams, and each team had a minimum of 1 patient, 1 provider, and 1 designer. Each team had 25 minutes per case to create a PODS for each of the 4 cases, and there were no other rules. 

To ensure a spirit of open-mindedness and collaboration during the event, we used strategies outlined in the Design Thinking for Educators Toolkit to guide the process (Figure 1) [9]. Following the event, all participants were asked to complete an evaluation form where they had the opportunity to relay any information they did not have a chance to share during the event.

Solutions resulting from the design event ranged from more traditional discharge summaries that were enhanced with multiple languages and images to make things clear for patients, to solutions including interactive patient portals. There were solutions that came with stickers to color-code your medications, areas for patients to write notes, and checklists for them to keep track of all their follow-up plans. 

The output included key information for patients such as phone numbers of who to call with questions and expectations for the first week home from the hospital. Almost all solutions contained a calendar view. Figure 2 shows a sample of the draft PODS created by the teams during the event. Details on the specific elements the participants suggested including in the PODS are listed in Table 3.

Refining the Design Using Focus Groups and Surveys

The ideas and concepts generated during the design event were analyzed by the interdisciplinary advisory team at OpenLab. In addition, several team sessions were held with health care 

providers who attended the design event and who worked in local hospitals to determine feasibility of the PODS. Based on the results of the co-design event and literature review, a designer created the first PODS prototype (Figure 3).

Using the first prototype and a sample case study, we held a series of focus groups and conducted 2 online surveys to get feedback on how the prototype could be further improved. Focus groups were held deliberately with harder-to-reach patient groups that do not typically provide input (eg, patients with extreme language barriers), and surveys were used to reach a broader and larger audience of patients and caregivers (Table 4). Figure 4 provides a sample of questions asked. The first prototype was then revised based on what we learned from the focus groups and surveys to create the second prototype (Figure 5). Table 5 provides the output from the focus groups and surveys that influenced the changes that were made to the first prototype. In all cases, the groups (see Table 4) that provided specific feedback is indicated. Most of the feedback from the focus groups and surveys was positive. All patients noted that they would love to receive a PODS

 and would find it useful when they are discharged from hospital. A patient's comment:

This is a great piece. You guys are doing an awesome job. This would have saved me so much anxiety and fear of doing something wrong when I was discharged. I didn’t want to bother my doctors and went on a hope and prayer. Even my home care people weren’t always sure of what to do. Again this would be a great step forward in easing patients’ fears, especially senior citizens. GREAT WORK. THANKS FOR CARING.

Discussion

Innovative methods such as co-design events and targeted focus groups are very useful for 

engaging patients and caregivers in the design and development of solutions aimed at improving their experience of care, resulting in solutions that are more successful. It is important to include all users, especially those who are harder to reach, such as patients with language barriers and mental health conditions. In addition, 

engaging health care providers is essential to ensure feasibility of those solutions. During the co-design process, it was difficult to truly engage harder-to-reach patient populations. At first, we tried using traditional methods of engagement such as approaching patient advisory boards and posting flyers for focus groups; however, although patients agreed to participate, very few had extreme language barriers or limited health literacy. As such, considerable time and effort was made to target harder-to-reach patients by enlisting interpreters, having flyers translated, and offering incentives. Additionally, we made use of ongoing patient meeting groups of patients with mental health issues and had health care providers screen patients for limited health literacy.

 

Future Plans

The PODS template has now been adapted and implemented in several hospitals in Toronto, Canada, using a supported early adopter process [10]. Future plans are to test the impact of the PODS on patient experience and health outcomes using a randomized controlled trial. Also, for now, we have focused on a paper version of PODS, but with the increasing prevalence of electronic health records and consumer-oriented health care apps, future consideration for a digital and mobile version of PODS is warranted.

 

 

Conclusion

Patients need to be prepared for discharge so that they can engage in supported self-management once they return home. 

The PODS is one way to support this process and provides a resource that patients can repeatedly refer to once they are discharged. Care should be taken to include key information that is helpful for patients and to provide that information in a way that patients can understand and use. The PODS should incorporate important design elements for patients with low health literacy and language and visual barriers such as using plain language, large fonts, and visuals.

 

Corresponding author: Shoshana Hahn-Goldberg, PhD, 294 Mullen Dr., Thornhill, ON L4J 2P2.

Funding/support: The PODS project has been funded by the Toronto Central Local Health Integration Network.

Financial disclosures: None.