Towards comprehensive care in transition for young people with haemophilia

Breakey, Vicky R.; Blanchette, Victor S.; Bolton‐Maggs, Paula

doi:10.1111/j.1365-2516.2010.02249.x

Cited by 53 publications

(98 citation statements)

References 49 publications

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“…In these two centres, the policy regarding the start of early prophylaxis and the use of educational material for teaching patients are 12.0 (9-17) 11.0 (8-17) 5.0 (3-9)* 8 (4-14) Time (weeks) 7.5 (5-11) 9.0 (4-15) 12.0 (1-28) 7 (4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15) Values are medians (IQR). *Significant differences with the other categories in the row (P < 0.01).…”

Section: Discussionmentioning

confidence: 99%

Learning intravenous infusion in haemophilia: experience from the Netherlands

et al. 2012

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Nowadays, nearly all severe haemophilia patients in the Netherlands practice self infusion at home. Learning intravenous administration of clotting factor requires time and effort. In order to inform patients about the burden and time-investment needed to learn intravenous infusion, we performed a two-centre retrospective study. All data on the learning processes, involving haemophilia patients born between 1980 and 2010 treated in Utrecht or Amsterdam, were extracted from patient files. A total of 154 patients and their parents were analysed (168 learning processes). Almost all patients had severe haemophilia and started prophylaxis at a median age of 2.7 years. 152/154 patients successfully learned intravenous infusion, including nine patients who temporally stopped and succeeded later. Overall, parents or patients needed a median of eight visits (IQR 4.3-14) in a median of 7 weeks (IQR 4-14.8) to learn home treatment. Parents who began to infuse by CVAD started at a median age of 1.9 years and succeeded within a median of 12 visits during 7.5 weeks. Parents who learned to perform intravenous infusion started at a median age of 4 years and needed 11 visits during 9 weeks. In 77% of cases, the mother was the first who started learning to infuse the child. Patients started with self infusion at a median age of 12.9 years, requiring a median of five visits in 12 weeks. The majority of patients and parents were able to learn intravenous infusion, with 50% of all parents and patients succeeding within eight visits during 7 weeks.

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Section: Discussionmentioning

confidence: 99%

Learning intravenous infusion in haemophilia: experience from the Netherlands

et al. 2012

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“…The complex biological, social and emotional changes inherent in adolescence make this increasingly challenging for many teens [2]. A recent study showed that at a median age of 17.2 years, almost 25% of AWH still required parental assistance in hemophilia-related care [3].…”

Section: Introductionmentioning

confidence: 99%

The value of usability testing for Internet-based adolescent self-management interventions: “Managing Hemophilia Online”

Breakey

Warias

Ignas

et al. 2013

BMC Med Inform Decis Mak

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BackgroundAs adolescents with hemophilia approach adulthood, they are expected to assume responsibility for their disease management. A bilingual (English and French) Internet-based self-management program, “Teens Taking Charge: Managing Hemophilia Online,” was developed to support adolescents with hemophilia in this transition. This study explored the usability of the website and resulted in refinement of the prototype.MethodsA purposive sample (n=18; age 13–18; mean age 15.5 years) was recruited from two tertiary care centers to assess the usability of the program in English and French. Qualitative observations using a “think aloud” usability testing method and semi-structured interviews were conducted in four iterative cycles, with changes to the prototype made as necessary following each cycle. This study was approved by research ethics boards at each site.ResultsTeens responded positively to the content and appearance of the website and felt that it was easy to navigate and understand. The multimedia components (videos, animations, quizzes) were felt to enrich the experience. Changes to the presentation of content and the website user-interface were made after the first, second and third cycles of testing in English. Cycle four did not result in any further changes.ConclusionsOverall, teens found the website to be easy to use. Usability testing identified end-user concerns that informed improvements to the program. Usability testing is a crucial step in the development of Internet-based self-management programs to ensure information is delivered in a manner that is accessible and understood by users.

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“…Here, a concordant rather than compliant understanding of adherence may also act to augment adherence rates . Adherence tends to be highest in childhood (≤12 years) and lowering in adolescents and young adults corresponding to the transition from parental care to self‐care . In a global survey, adherence dropped from 90% to 54% when 13‐18‐year‐olds started self‐infusing .…”

Section: Resultsmentioning

confidence: 99%

“…Among haemophilic patients in the Western world, adolescents (13‐17‐year‐olds) and young adults (18 to 25‐30‐year‐olds depending on the study) reportedly have the lowest adherence levels compared to other age groups . These patients go through major physical and psychosocial changes challenging the transition to self‐care …”

Section: Introductionmentioning

confidence: 96%

“…Haemophilic patients and their caregivers go through many transitions from diagnosis to the first transfer of care outside the family, beginning school, leisure activities, adolescence, moving out from home, establishing new relationships and choosing a career . Treatment adherence is mainly challenged at two transition points: when young people with haemophilia (YWH) switch to self‐infusion and when they move away from home and assume the full responsibility of self‐care .…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Mortensen¹,

Strand²,

Almén³

2018

Haemophilia

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Recombinant prophylactic treatment (PTX) has greatly improved morbidity, mortality and health‐related quality of life (HRQoL) in patients with severe haemophilia. Yet, treatment adherence appears suboptimal in adolescents and young adults with haemophilia (YWH). Young patients experience major biopsychosocial changes challenging their adherence through the transition from parental to self‐care, from paediatric to adult care. In clinical practice, a systematic approach to transition is rarely used and there is little evidence on best practices. This qualitative review was based on a systematic literature search including quantitative as well as qualitative research reports to examine all relevant factors influencing adherence to PTX in YWH. We aimed to gain comprehensive insight into main drivers and barriers to adherence by exploring them in the context of YWH’s disease perceptions, characteristics, HRQoL and needs. The outcome is an overview of the latest published recommendations to support treatment adherence in YWH during the transition from family‐oriented care to self‐care and from paediatric to adult care. The literature suggests that adherence to PTX is best supported when individual patient needs and preferences are taken into consideration when planning treatment. Preserving normality is a main priority in young patients making it crucial to support patients from early childhood in considering PTX as enabling rather than hindering a normal social and physically active life. Education in self‐management should include psychosocial support of patients as well as caregivers. This requires systematic transition planning including milestone assessments and ongoing multidisciplinary support until full self‐management is secured.

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Towards comprehensive care in transition for young people with haemophilia

Cited by 53 publications

References 49 publications

Learning intravenous infusion in haemophilia: experience from the Netherlands

Learning intravenous infusion in haemophilia: experience from the Netherlands

The value of usability testing for Internet-based adolescent self-management interventions: “Managing Hemophilia Online”

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

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