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Airways Disorders
Quadrupling the inhaled glucocorticoid dose in those with deteriorating asthma control: Zone 2 asthma
Asthma exacerbations account for most asthma-associated health-care costs and are a key outcome for successful asthma management programs. Inhaled corticosteroid (ICS) forms the cornerstone of asthma maintenance therapy.
Previously published data show that:
Most therapeutic benefit of budesonide was achieved at dose range of 400-1000 µg/day (Masoli et al. Eur Respir J. 2004;23:552).
Doubling ICS dose was ineffective in preventing acute asthma exacerbations (Harrison et al. Lancet. 2004;363:271. FitzGerald et al. Thorax. 2004;59: 550).
Increasing ICS dose was unlikely to reduce systemic glucocorticoid use or hospitalization for asthma exacerbations(Kew et al. Cochrane Database Syst Rev. 2016;6:CD007524).
A recent open-label pragmatic study, published in the New England Journal of Medicine, included 1,922 adolescents and adults with asthma. The authors observed a small reduction in severe asthma exacerbations (Hazard ratio 0.81 for time to first severe exacerbation) by quadrupling the dose of ICS during periods of worsening asthma control (McKeever et al. N Engl J Med. 2018;378:902).
This study does create opportunities for cost-benefit by decreasing health-care utilization, decrease in systemic steroid exposure in some patients, and increase in patient awareness of asthma control allowing self-management. Although statistically significant, the treatment effect was small, with 45% of subjects in the ‘quadrupling dose’ arm still experiencing severe exacerbations. Intervention arm also experienced increased rate of adverse effects.
Additional studies are needed before this strategy can be broadly applied. In the same issue of NEJM, quintupling the dose of ICS in children was not associated with decrease in exacerbations (Jackson et al. N Engl J Med. 2018;378:891). The fact that nearly half of asthmatics who quadrupled ICS dose had exacerbations is disconcerting. This highlights an urgent need to understand treatment-responsive phenotypes, mechanisms of steroid sensitivity, and modalities to improve them, if we are to reduce asthma morbidity in the community.
Navitha Ramesh, MD
Steering Committee Member
Mahesh Padukudru Anand, MBBS, FCCP
Steering Committee Member
Clinical Research
Informed consent: Do we need to change our practice?
Informed consent is the keystone of clinical research and helps respect and protect the rights of the participants/subjects. While the informed consent process has been standardized, some challenges still remain, such as pieces of information that should be disclosed, how to disclose information and document understanding of participants, and how detailed that disclosure should be (Grady, N Engl J Med. 2015;372:855). Digital technology can and has been used to improve the process of obtaining informed consent.
Substituting long and complex written forms with electronic consent (e-consent), however, has issues. Few people read through online agreements before clicking “agree,” which may lead to participants consenting without a clear understanding of what they are consenting to. On the other hand, it is also possible to use e-consent to improve comprehension by including videos and graphics. Interactive quizzes can assess the understanding of the participants, embedded links to audios or videos can further enhance the grasp of information. With e-consents, queries from participants can be answered via phone call or email. When e-consent is obtained remotely, the identity can be confirmed by electronic signatures, username, password, or biometrics.
E-consent has advantages, can be done remotely, no paper is needed, etc. It has potential disadvantages like being costly, videos can add time to the process, and multicenter international trials can be difficult (Grady, et al. N Engl J Med, 2017; 376:e43). Studying e-consents to identify gaps in communication between the researcher and the participant in the digitalized world may help improve the process and allow research to proceed with better understanding of the risks and benefits of involvement in clinical research.
Mohsin Ijaz, MD, FCCP
Steering Committee Member
Critical Care
Fluid Resuscitation in ICU Patients With Sepsis
Appropriate fluid resuscitation is a major goal in sepsis management. Debate remains regarding fluid choice and the impact on acute kidney injury (AKI), renal replacement therapy (RRT), and mortality. Normal saline solution (NS) may be associated with hyperchloremic metabolic acidosis, AKI, and death, but study results have been inconsistent. A large before-after study revealed that balanced crystalloids (BC) were associated with lower rates of AKI and RRT but did not impact mortality (Yunos et al. JAMA. 2012;308:1566). A meta-analysis specifically examining patients with sepsis failed to find a significant difference in RRT or mortality, although this conclusion was of low certainty (Rochwerg, et al., Intensive Care Med. 2015;41:1561).
Earlier this year, a large RCT comparing NS vs BC demonstrated a reduction in major adverse kidney events using BC. Independent rates of new RRT, mortality, and persistent renal dysfunction were not significant, but when combined as a composite outcome, the difference was significant. A 30-day mortality reduction was significant in patients with sepsis (25.2% BC vs 29.4% NS) and in patients with large infusions of NS (Semler et al., N Engl J Med. 2018;378:829). Given these results, a move toward a “balanced approach” to fluid resuscitation seems prudent and may be the next step toward improving outcomes in sepsis. These results are likely related to the large infusions of fluid in patients with sepsis or to the inflammatory effects of the disease. Finally, the applicability of these outcomes to the overall critically ill population is still open to debate.
Margaret Disselkamp, MD
Steering Committee Member
Home-Based Mechanical Ventilation and Neuromuscular Disease
Transcutaneous Carbon Dioxide Monitoring: New Era for Home Ventilation
A primary objective of noninvasive home ventilation is normalization of arterial blood gas tensions, night and day. Pulse oximetry has long enabled estimation of arterial oxygen saturation (SpO2) in outpatient offices and overnight at home; however, until recently, measurement of the partial pressure of carbon dioxide (PCO2) has been limited to invasive arterial blood gas testing (PaCO2) or end-tidal CO2 (PetCO2) measurements. Assessment of PetCO2 has been limited by challenges in accessing true end-tidal exhaled gas under a face mask during noninvasive ventilation, particularly for patients with parenchymal lung diseases such as COPD.
Thanks to recent technological advances, transcutaneous measurement of carbon dioxide (PtcCO2) is emerging as the method of choice for assessing the adequacy of noninvasive ventilation. PtcCO2 monitoring is a standard assessment for pediatric patients in the sleep lab, and it is increasingly being utilized in adults to complement diagnostic and treatment purposes. The transcutaneous CO2 sensors work by heating underlying skin to approximately 43° C, increasing blood flow through the underlying dermal capillary bed. Within 2 to 5 minutes, the “arteriolized” capillary PtcCO2 approximates PaCO2. Commercially available devices for measuring PtcCO2 reliably estimate PaCO2 in patients undergoing noninvasive ventilation to within 5 mm Hg (95% CI) (Storre et al. Respir Med. 2010;105:143).
PtcCO2 measurement has limitations. Measured PtcCO2 can drift upward (i.e., technical drift) during continuous monitoring; however, currently available devices adequately adjust for this phenomenon. Arterialization may be limited by thickened skin, edema, or hypoperfusion.
Currently, U.S. insurance companies do not accept PtcCO2 for documentation of hypercapnia, and the cost of measuring PtcCO2 is not reimbursed. Nevertheless, PtcCO2 technology promises a new era for home mechanical ventilation guided by accurate and practical assessment of PCO2, in particular for chronic respiratory failure syndromes. In this setting, home PtcCO2 monitoring potentially can be utilized in place of in-laboratory sleep studies for assessment of nocturnal hypoventilation and optimizing home mechanical ventilation.
Jason Ackrivo, MD
Steering Committee Member
Interstitial and Diffuse Lung Disease
Electronic Patient Education
The management of patients with an interstitial lung disease (ILD) is challenging. A provider must examine the fine details about current and prior medication history, explore various occupational and environmental exposures, perform a thorough physical examination that includes a careful dermatologic and rheumatologic review, and peruse the objective data, such as the high-resolution CT scan of the chest and pulmonary function tests. Then, the pulmonologist and the patient (plus often multiple family members) discuss diagnostic possibilities, any future testing for confirmation, and prognostic implications. Understandably, the patient may leave the office bewildered, overwhelmed, and in search of clarification.
Bewilderment may lead to the internet. In 2001, 4.5% of all internet searches were determined to be health-care-related (Eysenbach et al. AMIA Annu Symp Proc. 2003;225). It is reasonable to presume the percentage is higher today. Just as with any nonmedical website, the choices for digital health-care information are sometimes not contemporaneous and vary in quality. By exploring the most common “hits” on popular search engines when searching for idiopathic pulmonary fibrosis, a 2016 study found that not only is information presented at a high reading level – 12th grade – but often outdated or simply wrong (Fisher, et al. Am J Respir Crit Care Med. 2016;194[2)]:218). Adding to a patient’s possible confusion is that websites expected to be the most helpful, foundation or advocacy websites, were more likely to suggest disproven and even harmful therapies years after those conclusions were published.
CHEST and the Interstitial and Diffuse Lung Disease NetWork are committed to patient education both in and out of the clinical setting. An ongoing redesign of ILD patient education on the CHEST Foundation website is nearing completion and will ensure patients have the most accurate and understandable information available.
Corey Kershaw, MD
Steering Committee Member
Airways Disorders
Quadrupling the inhaled glucocorticoid dose in those with deteriorating asthma control: Zone 2 asthma
Asthma exacerbations account for most asthma-associated health-care costs and are a key outcome for successful asthma management programs. Inhaled corticosteroid (ICS) forms the cornerstone of asthma maintenance therapy.
Previously published data show that:
Most therapeutic benefit of budesonide was achieved at dose range of 400-1000 µg/day (Masoli et al. Eur Respir J. 2004;23:552).
Doubling ICS dose was ineffective in preventing acute asthma exacerbations (Harrison et al. Lancet. 2004;363:271. FitzGerald et al. Thorax. 2004;59: 550).
Increasing ICS dose was unlikely to reduce systemic glucocorticoid use or hospitalization for asthma exacerbations(Kew et al. Cochrane Database Syst Rev. 2016;6:CD007524).
A recent open-label pragmatic study, published in the New England Journal of Medicine, included 1,922 adolescents and adults with asthma. The authors observed a small reduction in severe asthma exacerbations (Hazard ratio 0.81 for time to first severe exacerbation) by quadrupling the dose of ICS during periods of worsening asthma control (McKeever et al. N Engl J Med. 2018;378:902).
This study does create opportunities for cost-benefit by decreasing health-care utilization, decrease in systemic steroid exposure in some patients, and increase in patient awareness of asthma control allowing self-management. Although statistically significant, the treatment effect was small, with 45% of subjects in the ‘quadrupling dose’ arm still experiencing severe exacerbations. Intervention arm also experienced increased rate of adverse effects.
Additional studies are needed before this strategy can be broadly applied. In the same issue of NEJM, quintupling the dose of ICS in children was not associated with decrease in exacerbations (Jackson et al. N Engl J Med. 2018;378:891). The fact that nearly half of asthmatics who quadrupled ICS dose had exacerbations is disconcerting. This highlights an urgent need to understand treatment-responsive phenotypes, mechanisms of steroid sensitivity, and modalities to improve them, if we are to reduce asthma morbidity in the community.
Navitha Ramesh, MD
Steering Committee Member
Mahesh Padukudru Anand, MBBS, FCCP
Steering Committee Member
Clinical Research
Informed consent: Do we need to change our practice?
Informed consent is the keystone of clinical research and helps respect and protect the rights of the participants/subjects. While the informed consent process has been standardized, some challenges still remain, such as pieces of information that should be disclosed, how to disclose information and document understanding of participants, and how detailed that disclosure should be (Grady, N Engl J Med. 2015;372:855). Digital technology can and has been used to improve the process of obtaining informed consent.
Substituting long and complex written forms with electronic consent (e-consent), however, has issues. Few people read through online agreements before clicking “agree,” which may lead to participants consenting without a clear understanding of what they are consenting to. On the other hand, it is also possible to use e-consent to improve comprehension by including videos and graphics. Interactive quizzes can assess the understanding of the participants, embedded links to audios or videos can further enhance the grasp of information. With e-consents, queries from participants can be answered via phone call or email. When e-consent is obtained remotely, the identity can be confirmed by electronic signatures, username, password, or biometrics.
E-consent has advantages, can be done remotely, no paper is needed, etc. It has potential disadvantages like being costly, videos can add time to the process, and multicenter international trials can be difficult (Grady, et al. N Engl J Med, 2017; 376:e43). Studying e-consents to identify gaps in communication between the researcher and the participant in the digitalized world may help improve the process and allow research to proceed with better understanding of the risks and benefits of involvement in clinical research.
Mohsin Ijaz, MD, FCCP
Steering Committee Member
Critical Care
Fluid Resuscitation in ICU Patients With Sepsis
Appropriate fluid resuscitation is a major goal in sepsis management. Debate remains regarding fluid choice and the impact on acute kidney injury (AKI), renal replacement therapy (RRT), and mortality. Normal saline solution (NS) may be associated with hyperchloremic metabolic acidosis, AKI, and death, but study results have been inconsistent. A large before-after study revealed that balanced crystalloids (BC) were associated with lower rates of AKI and RRT but did not impact mortality (Yunos et al. JAMA. 2012;308:1566). A meta-analysis specifically examining patients with sepsis failed to find a significant difference in RRT or mortality, although this conclusion was of low certainty (Rochwerg, et al., Intensive Care Med. 2015;41:1561).
Earlier this year, a large RCT comparing NS vs BC demonstrated a reduction in major adverse kidney events using BC. Independent rates of new RRT, mortality, and persistent renal dysfunction were not significant, but when combined as a composite outcome, the difference was significant. A 30-day mortality reduction was significant in patients with sepsis (25.2% BC vs 29.4% NS) and in patients with large infusions of NS (Semler et al., N Engl J Med. 2018;378:829). Given these results, a move toward a “balanced approach” to fluid resuscitation seems prudent and may be the next step toward improving outcomes in sepsis. These results are likely related to the large infusions of fluid in patients with sepsis or to the inflammatory effects of the disease. Finally, the applicability of these outcomes to the overall critically ill population is still open to debate.
Margaret Disselkamp, MD
Steering Committee Member
Home-Based Mechanical Ventilation and Neuromuscular Disease
Transcutaneous Carbon Dioxide Monitoring: New Era for Home Ventilation
A primary objective of noninvasive home ventilation is normalization of arterial blood gas tensions, night and day. Pulse oximetry has long enabled estimation of arterial oxygen saturation (SpO2) in outpatient offices and overnight at home; however, until recently, measurement of the partial pressure of carbon dioxide (PCO2) has been limited to invasive arterial blood gas testing (PaCO2) or end-tidal CO2 (PetCO2) measurements. Assessment of PetCO2 has been limited by challenges in accessing true end-tidal exhaled gas under a face mask during noninvasive ventilation, particularly for patients with parenchymal lung diseases such as COPD.
Thanks to recent technological advances, transcutaneous measurement of carbon dioxide (PtcCO2) is emerging as the method of choice for assessing the adequacy of noninvasive ventilation. PtcCO2 monitoring is a standard assessment for pediatric patients in the sleep lab, and it is increasingly being utilized in adults to complement diagnostic and treatment purposes. The transcutaneous CO2 sensors work by heating underlying skin to approximately 43° C, increasing blood flow through the underlying dermal capillary bed. Within 2 to 5 minutes, the “arteriolized” capillary PtcCO2 approximates PaCO2. Commercially available devices for measuring PtcCO2 reliably estimate PaCO2 in patients undergoing noninvasive ventilation to within 5 mm Hg (95% CI) (Storre et al. Respir Med. 2010;105:143).
PtcCO2 measurement has limitations. Measured PtcCO2 can drift upward (i.e., technical drift) during continuous monitoring; however, currently available devices adequately adjust for this phenomenon. Arterialization may be limited by thickened skin, edema, or hypoperfusion.
Currently, U.S. insurance companies do not accept PtcCO2 for documentation of hypercapnia, and the cost of measuring PtcCO2 is not reimbursed. Nevertheless, PtcCO2 technology promises a new era for home mechanical ventilation guided by accurate and practical assessment of PCO2, in particular for chronic respiratory failure syndromes. In this setting, home PtcCO2 monitoring potentially can be utilized in place of in-laboratory sleep studies for assessment of nocturnal hypoventilation and optimizing home mechanical ventilation.
Jason Ackrivo, MD
Steering Committee Member
Interstitial and Diffuse Lung Disease
Electronic Patient Education
The management of patients with an interstitial lung disease (ILD) is challenging. A provider must examine the fine details about current and prior medication history, explore various occupational and environmental exposures, perform a thorough physical examination that includes a careful dermatologic and rheumatologic review, and peruse the objective data, such as the high-resolution CT scan of the chest and pulmonary function tests. Then, the pulmonologist and the patient (plus often multiple family members) discuss diagnostic possibilities, any future testing for confirmation, and prognostic implications. Understandably, the patient may leave the office bewildered, overwhelmed, and in search of clarification.
Bewilderment may lead to the internet. In 2001, 4.5% of all internet searches were determined to be health-care-related (Eysenbach et al. AMIA Annu Symp Proc. 2003;225). It is reasonable to presume the percentage is higher today. Just as with any nonmedical website, the choices for digital health-care information are sometimes not contemporaneous and vary in quality. By exploring the most common “hits” on popular search engines when searching for idiopathic pulmonary fibrosis, a 2016 study found that not only is information presented at a high reading level – 12th grade – but often outdated or simply wrong (Fisher, et al. Am J Respir Crit Care Med. 2016;194[2)]:218). Adding to a patient’s possible confusion is that websites expected to be the most helpful, foundation or advocacy websites, were more likely to suggest disproven and even harmful therapies years after those conclusions were published.
CHEST and the Interstitial and Diffuse Lung Disease NetWork are committed to patient education both in and out of the clinical setting. An ongoing redesign of ILD patient education on the CHEST Foundation website is nearing completion and will ensure patients have the most accurate and understandable information available.
Corey Kershaw, MD
Steering Committee Member
Airways Disorders
Quadrupling the inhaled glucocorticoid dose in those with deteriorating asthma control: Zone 2 asthma
Asthma exacerbations account for most asthma-associated health-care costs and are a key outcome for successful asthma management programs. Inhaled corticosteroid (ICS) forms the cornerstone of asthma maintenance therapy.
Previously published data show that:
Most therapeutic benefit of budesonide was achieved at dose range of 400-1000 µg/day (Masoli et al. Eur Respir J. 2004;23:552).
Doubling ICS dose was ineffective in preventing acute asthma exacerbations (Harrison et al. Lancet. 2004;363:271. FitzGerald et al. Thorax. 2004;59: 550).
Increasing ICS dose was unlikely to reduce systemic glucocorticoid use or hospitalization for asthma exacerbations(Kew et al. Cochrane Database Syst Rev. 2016;6:CD007524).
A recent open-label pragmatic study, published in the New England Journal of Medicine, included 1,922 adolescents and adults with asthma. The authors observed a small reduction in severe asthma exacerbations (Hazard ratio 0.81 for time to first severe exacerbation) by quadrupling the dose of ICS during periods of worsening asthma control (McKeever et al. N Engl J Med. 2018;378:902).
This study does create opportunities for cost-benefit by decreasing health-care utilization, decrease in systemic steroid exposure in some patients, and increase in patient awareness of asthma control allowing self-management. Although statistically significant, the treatment effect was small, with 45% of subjects in the ‘quadrupling dose’ arm still experiencing severe exacerbations. Intervention arm also experienced increased rate of adverse effects.
Additional studies are needed before this strategy can be broadly applied. In the same issue of NEJM, quintupling the dose of ICS in children was not associated with decrease in exacerbations (Jackson et al. N Engl J Med. 2018;378:891). The fact that nearly half of asthmatics who quadrupled ICS dose had exacerbations is disconcerting. This highlights an urgent need to understand treatment-responsive phenotypes, mechanisms of steroid sensitivity, and modalities to improve them, if we are to reduce asthma morbidity in the community.
Navitha Ramesh, MD
Steering Committee Member
Mahesh Padukudru Anand, MBBS, FCCP
Steering Committee Member
Clinical Research
Informed consent: Do we need to change our practice?
Informed consent is the keystone of clinical research and helps respect and protect the rights of the participants/subjects. While the informed consent process has been standardized, some challenges still remain, such as pieces of information that should be disclosed, how to disclose information and document understanding of participants, and how detailed that disclosure should be (Grady, N Engl J Med. 2015;372:855). Digital technology can and has been used to improve the process of obtaining informed consent.
Substituting long and complex written forms with electronic consent (e-consent), however, has issues. Few people read through online agreements before clicking “agree,” which may lead to participants consenting without a clear understanding of what they are consenting to. On the other hand, it is also possible to use e-consent to improve comprehension by including videos and graphics. Interactive quizzes can assess the understanding of the participants, embedded links to audios or videos can further enhance the grasp of information. With e-consents, queries from participants can be answered via phone call or email. When e-consent is obtained remotely, the identity can be confirmed by electronic signatures, username, password, or biometrics.
E-consent has advantages, can be done remotely, no paper is needed, etc. It has potential disadvantages like being costly, videos can add time to the process, and multicenter international trials can be difficult (Grady, et al. N Engl J Med, 2017; 376:e43). Studying e-consents to identify gaps in communication between the researcher and the participant in the digitalized world may help improve the process and allow research to proceed with better understanding of the risks and benefits of involvement in clinical research.
Mohsin Ijaz, MD, FCCP
Steering Committee Member
Critical Care
Fluid Resuscitation in ICU Patients With Sepsis
Appropriate fluid resuscitation is a major goal in sepsis management. Debate remains regarding fluid choice and the impact on acute kidney injury (AKI), renal replacement therapy (RRT), and mortality. Normal saline solution (NS) may be associated with hyperchloremic metabolic acidosis, AKI, and death, but study results have been inconsistent. A large before-after study revealed that balanced crystalloids (BC) were associated with lower rates of AKI and RRT but did not impact mortality (Yunos et al. JAMA. 2012;308:1566). A meta-analysis specifically examining patients with sepsis failed to find a significant difference in RRT or mortality, although this conclusion was of low certainty (Rochwerg, et al., Intensive Care Med. 2015;41:1561).
Earlier this year, a large RCT comparing NS vs BC demonstrated a reduction in major adverse kidney events using BC. Independent rates of new RRT, mortality, and persistent renal dysfunction were not significant, but when combined as a composite outcome, the difference was significant. A 30-day mortality reduction was significant in patients with sepsis (25.2% BC vs 29.4% NS) and in patients with large infusions of NS (Semler et al., N Engl J Med. 2018;378:829). Given these results, a move toward a “balanced approach” to fluid resuscitation seems prudent and may be the next step toward improving outcomes in sepsis. These results are likely related to the large infusions of fluid in patients with sepsis or to the inflammatory effects of the disease. Finally, the applicability of these outcomes to the overall critically ill population is still open to debate.
Margaret Disselkamp, MD
Steering Committee Member
Home-Based Mechanical Ventilation and Neuromuscular Disease
Transcutaneous Carbon Dioxide Monitoring: New Era for Home Ventilation
A primary objective of noninvasive home ventilation is normalization of arterial blood gas tensions, night and day. Pulse oximetry has long enabled estimation of arterial oxygen saturation (SpO2) in outpatient offices and overnight at home; however, until recently, measurement of the partial pressure of carbon dioxide (PCO2) has been limited to invasive arterial blood gas testing (PaCO2) or end-tidal CO2 (PetCO2) measurements. Assessment of PetCO2 has been limited by challenges in accessing true end-tidal exhaled gas under a face mask during noninvasive ventilation, particularly for patients with parenchymal lung diseases such as COPD.
Thanks to recent technological advances, transcutaneous measurement of carbon dioxide (PtcCO2) is emerging as the method of choice for assessing the adequacy of noninvasive ventilation. PtcCO2 monitoring is a standard assessment for pediatric patients in the sleep lab, and it is increasingly being utilized in adults to complement diagnostic and treatment purposes. The transcutaneous CO2 sensors work by heating underlying skin to approximately 43° C, increasing blood flow through the underlying dermal capillary bed. Within 2 to 5 minutes, the “arteriolized” capillary PtcCO2 approximates PaCO2. Commercially available devices for measuring PtcCO2 reliably estimate PaCO2 in patients undergoing noninvasive ventilation to within 5 mm Hg (95% CI) (Storre et al. Respir Med. 2010;105:143).
PtcCO2 measurement has limitations. Measured PtcCO2 can drift upward (i.e., technical drift) during continuous monitoring; however, currently available devices adequately adjust for this phenomenon. Arterialization may be limited by thickened skin, edema, or hypoperfusion.
Currently, U.S. insurance companies do not accept PtcCO2 for documentation of hypercapnia, and the cost of measuring PtcCO2 is not reimbursed. Nevertheless, PtcCO2 technology promises a new era for home mechanical ventilation guided by accurate and practical assessment of PCO2, in particular for chronic respiratory failure syndromes. In this setting, home PtcCO2 monitoring potentially can be utilized in place of in-laboratory sleep studies for assessment of nocturnal hypoventilation and optimizing home mechanical ventilation.
Jason Ackrivo, MD
Steering Committee Member
Interstitial and Diffuse Lung Disease
Electronic Patient Education
The management of patients with an interstitial lung disease (ILD) is challenging. A provider must examine the fine details about current and prior medication history, explore various occupational and environmental exposures, perform a thorough physical examination that includes a careful dermatologic and rheumatologic review, and peruse the objective data, such as the high-resolution CT scan of the chest and pulmonary function tests. Then, the pulmonologist and the patient (plus often multiple family members) discuss diagnostic possibilities, any future testing for confirmation, and prognostic implications. Understandably, the patient may leave the office bewildered, overwhelmed, and in search of clarification.
Bewilderment may lead to the internet. In 2001, 4.5% of all internet searches were determined to be health-care-related (Eysenbach et al. AMIA Annu Symp Proc. 2003;225). It is reasonable to presume the percentage is higher today. Just as with any nonmedical website, the choices for digital health-care information are sometimes not contemporaneous and vary in quality. By exploring the most common “hits” on popular search engines when searching for idiopathic pulmonary fibrosis, a 2016 study found that not only is information presented at a high reading level – 12th grade – but often outdated or simply wrong (Fisher, et al. Am J Respir Crit Care Med. 2016;194[2)]:218). Adding to a patient’s possible confusion is that websites expected to be the most helpful, foundation or advocacy websites, were more likely to suggest disproven and even harmful therapies years after those conclusions were published.
CHEST and the Interstitial and Diffuse Lung Disease NetWork are committed to patient education both in and out of the clinical setting. An ongoing redesign of ILD patient education on the CHEST Foundation website is nearing completion and will ensure patients have the most accurate and understandable information available.
Corey Kershaw, MD
Steering Committee Member