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A questionnaire may help aid the transition from pediatric to adult care for patients with sickle cell disease (SCD), according to a paper published in the Journal of Pediatric Hematology/Oncology.
Researchers showed that the questionnaire could pinpoint areas in which young SCD patients may need help to transition to an adult clinic.
The questionnaire measured 5 knowledge skill sets—medical, educational/vocational, health benefits, social, and independent living—as well as 3 psychological assessments—feelings, stress, and self-efficacy.
To test how effective the questionnaire can be, Amy Sobota, MD, of Boston Medical Center, and her colleagues looked at the answers provided by 33 patients between the ages of 18 and 22.
Most respondents had good medical knowledge of SCD. Ninety-seven percent said they could explain SCD to another person and understood “how they got” the disease.
Ninety-four percent of patients also understood that SCD might be passed on to their children, and 71% of women said they knew how SCD could affect their pregnancy. However, only 30% of patients reported knowing what their baseline hemoglobin level is.
Likewise, the questionnaire suggested some knowledge gaps with regard to health benefits. Sixty-four percent of patients said they understood the various types of health insurance available to them, and 61% knew how their age could affect their health benefits.
Patients’ educational/vocational knowledge and capabilities were promising overall. Ninety-one percent of patients said they had a specific plan for the future, and 94% said they knew the education or employment required for their job choice. Seventy-six percent said they could identify the type of work that could cause problems related to SCD.
As for independent living, 91% of patients said they could fill their prescriptions on their own, 85% could make doctor’s appointments on their own, and 79% reported going to doctor’s appointments on their own.
With regard to social support, 97% of patients said they had a good social support system. But fewer (70%) had friends they could talk to about SCD, and only 48% knew about community-based SCD programs.
Most patients said they were worried that SCD would hinder them in some ways. Seventy-six percent worried about SCD getting in the way of school or work, and 51% worried it might prevent them from doing things they enjoy.
However, most patients felt sure they could function well. Eighty-eight percent said they could keep doing most of the things they do day-to-day, and 54% said they had ways of managing their pain without medication.
A minority of patients were worried or anxious about transitioning to adult care. Twenty-five percent were “quite a bit” or “extremely” worried, and 9% were similarly anxious about the transition. Sixteen percent said they felt “not at all” or “a little bit” all right to transition to an adult health care setting.
“Our study indicates that this assessment tool—the only one of its kind—provides important information to physicians of patients with sickle cell disease who are transitioning from pediatric to adult care,” Dr Sobota said. “Caregivers can use this information from patients in order to effectively tailor and guide their treatment and education through this transition.” 
A questionnaire may help aid the transition from pediatric to adult care for patients with sickle cell disease (SCD), according to a paper published in the Journal of Pediatric Hematology/Oncology.
Researchers showed that the questionnaire could pinpoint areas in which young SCD patients may need help to transition to an adult clinic.
The questionnaire measured 5 knowledge skill sets—medical, educational/vocational, health benefits, social, and independent living—as well as 3 psychological assessments—feelings, stress, and self-efficacy.
To test how effective the questionnaire can be, Amy Sobota, MD, of Boston Medical Center, and her colleagues looked at the answers provided by 33 patients between the ages of 18 and 22.
Most respondents had good medical knowledge of SCD. Ninety-seven percent said they could explain SCD to another person and understood “how they got” the disease.
Ninety-four percent of patients also understood that SCD might be passed on to their children, and 71% of women said they knew how SCD could affect their pregnancy. However, only 30% of patients reported knowing what their baseline hemoglobin level is.
Likewise, the questionnaire suggested some knowledge gaps with regard to health benefits. Sixty-four percent of patients said they understood the various types of health insurance available to them, and 61% knew how their age could affect their health benefits.
Patients’ educational/vocational knowledge and capabilities were promising overall. Ninety-one percent of patients said they had a specific plan for the future, and 94% said they knew the education or employment required for their job choice. Seventy-six percent said they could identify the type of work that could cause problems related to SCD.
As for independent living, 91% of patients said they could fill their prescriptions on their own, 85% could make doctor’s appointments on their own, and 79% reported going to doctor’s appointments on their own.
With regard to social support, 97% of patients said they had a good social support system. But fewer (70%) had friends they could talk to about SCD, and only 48% knew about community-based SCD programs.
Most patients said they were worried that SCD would hinder them in some ways. Seventy-six percent worried about SCD getting in the way of school or work, and 51% worried it might prevent them from doing things they enjoy.
However, most patients felt sure they could function well. Eighty-eight percent said they could keep doing most of the things they do day-to-day, and 54% said they had ways of managing their pain without medication.
A minority of patients were worried or anxious about transitioning to adult care. Twenty-five percent were “quite a bit” or “extremely” worried, and 9% were similarly anxious about the transition. Sixteen percent said they felt “not at all” or “a little bit” all right to transition to an adult health care setting.
“Our study indicates that this assessment tool—the only one of its kind—provides important information to physicians of patients with sickle cell disease who are transitioning from pediatric to adult care,” Dr Sobota said. “Caregivers can use this information from patients in order to effectively tailor and guide their treatment and education through this transition.”
A questionnaire may help aid the transition from pediatric to adult care for patients with sickle cell disease (SCD), according to a paper published in the Journal of Pediatric Hematology/Oncology.
Researchers showed that the questionnaire could pinpoint areas in which young SCD patients may need help to transition to an adult clinic.
The questionnaire measured 5 knowledge skill sets—medical, educational/vocational, health benefits, social, and independent living—as well as 3 psychological assessments—feelings, stress, and self-efficacy.
To test how effective the questionnaire can be, Amy Sobota, MD, of Boston Medical Center, and her colleagues looked at the answers provided by 33 patients between the ages of 18 and 22.
Most respondents had good medical knowledge of SCD. Ninety-seven percent said they could explain SCD to another person and understood “how they got” the disease.
Ninety-four percent of patients also understood that SCD might be passed on to their children, and 71% of women said they knew how SCD could affect their pregnancy. However, only 30% of patients reported knowing what their baseline hemoglobin level is.
Likewise, the questionnaire suggested some knowledge gaps with regard to health benefits. Sixty-four percent of patients said they understood the various types of health insurance available to them, and 61% knew how their age could affect their health benefits.
Patients’ educational/vocational knowledge and capabilities were promising overall. Ninety-one percent of patients said they had a specific plan for the future, and 94% said they knew the education or employment required for their job choice. Seventy-six percent said they could identify the type of work that could cause problems related to SCD.
As for independent living, 91% of patients said they could fill their prescriptions on their own, 85% could make doctor’s appointments on their own, and 79% reported going to doctor’s appointments on their own.
With regard to social support, 97% of patients said they had a good social support system. But fewer (70%) had friends they could talk to about SCD, and only 48% knew about community-based SCD programs.
Most patients said they were worried that SCD would hinder them in some ways. Seventy-six percent worried about SCD getting in the way of school or work, and 51% worried it might prevent them from doing things they enjoy.
However, most patients felt sure they could function well. Eighty-eight percent said they could keep doing most of the things they do day-to-day, and 54% said they had ways of managing their pain without medication.
A minority of patients were worried or anxious about transitioning to adult care. Twenty-five percent were “quite a bit” or “extremely” worried, and 9% were similarly anxious about the transition. Sixteen percent said they felt “not at all” or “a little bit” all right to transition to an adult health care setting.
“Our study indicates that this assessment tool—the only one of its kind—provides important information to physicians of patients with sickle cell disease who are transitioning from pediatric to adult care,” Dr Sobota said. “Caregivers can use this information from patients in order to effectively tailor and guide their treatment and education through this transition.”