Doctors in Canada are proposing a set of measures to better judge outcomes and the success of programs helping teen-age hemophilia patients transition to adult care, especially for those with more severe disease.
They also listed 15 “key elements” of a successful pediatric-to-adult transition program, including eight the doctors saw as feasible to implement within five years.
Findings of the study, “Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers,” were published in Haemophilia.
“Adolescents and young adults with chronic illnesses face multiple challenges during transition [to adulthood], due to severed relationships from long‐term paediatric providers, adaptation to an unfamiliar environment and new responsibilities of self‐management,” the investigators wrote.
“Those with severe haemophilia need to be proficient in timely recognition and management of acute bleeds, advocate for themselves during times of injury, and take responsibility over prophylactic [preventative] intravenous infusions of coagulation factor concentrates,” they added.
Several studies have proposed different outcome indicators to determine the success of transition programs for young people with hemophilia. But no consensus exists so far regarding which outcome indicators should be used to determine the success of transitional programs, and which key elements should be part of these programs to maximize their chances of success.
A group of physicians across Canada worked to create a such list of outcome indicators and key program elements, using a modified version of the two‐stage Delphi survey — a questionnaire designed to develop a consensus of opinion — that sent to an identified group of Canadian healthcare providers, including physicians, nurses, physiotherapists and social workers. It looked specifically at “outcome measures [of importance] … and feasible indicators of successful haemophilia transition, and what are important elements that should be incorporated in Canadian haemophilia transition programs.”
During the first round, participants were asked to rate the importance and feasibility of a group of outcome indicators for transition programs. In the second, they were asked to select the top five outcome indicators that should be added to evaluate a program’s success, as well as the top five indicators that should be easiest to implement within the next five years.
From the 73 healthcare providers invited to participate in the study (30 physicians, 22 nurses, 13 physiotherapists and eight social workers), 34 (47%) participated in the first round of surveys and 33 (45%) in the second round.
Based on first-round responses to the survey, a total of 10 and eight outcome indicators achieved consensus for importance and feasibility, respectively. After the second round, seven indicators were judged as the most important and feasible for the success of transition programs:
- Measures of treatment adherence
- Changes in bleeding rate
- Self‐efficacy skills
- Hemophilia knowledge
- Patient and caregivers’ satisfaction
- Time interval between the last pediatric consultation and the first adult consultation
- Number of emergency room or hospital admissions
The panel then agreed on a set of 14 key elements important to include in pediatric-to-adult transition programs, including eight that might be put in place within five years:
- Providing a detailed transition summary
- Involving patients and caregivers in transition planning
- Providing early introduction to adult services
- Providing independent assessment without parents starting early in adolescence
- Facilitating gradual transfer of responsibilities
- Starting the transition planning process early
- Offering enhanced follow‐up in the first year after transfer
- Booking the first adult clinic appointment upon discharge from pediatric care
“Results of this study will contribute towards development of a haemophilia transition outcomes instrument. This study also proposes a list of important elements that should be considered for implementation in Canadian HTC [healthcare], depending on centre‐specific infrastructure and patient needs,” the researchers wrote.
“This list may be modified pending input from key stakeholders. Standardization of outcome measures and establishment of a transition core outcome set will ensure the quality and relevance of outcome measurements used and provide guidance for future studies evaluating haemophilia transitional care,” they added.