Achieving self-management of prophylactic treatment in adolescents: The case of haemophilia

Schrijvers, L. H.; Zande, Marlene Beijlevelt van der; Peters, Marjolein; Lock, Janske; Cnossen, Marjon H.; Schuurmans, Marieke J.; Fischer, Kathelijn

doi:10.1016/j.pec.2016.01.016

Cited by 16 publications

(35 citation statements)

References 29 publications

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“…The relationship between a HTC, continued from early ages, and including the family of the CWH is not yet described, but we know adherence can be detected and corrected [22].…”

Section: How To Effectuate Physiotherapy In Htcsmentioning

confidence: 99%

Evidence for and cost‐effectiveness of physiotherapy in haemophilia: a Dutch perspective

et al. 2016

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“…The relationship between a HTC, continued from early ages, and including the family of the CWH is not yet described, but we know adherence can be detected and corrected [22].…”

Section: How To Effectuate Physiotherapy In Htcsmentioning

confidence: 99%

Evidence for and cost‐effectiveness of physiotherapy in haemophilia: a Dutch perspective

et al. 2016

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“…Overall, the main patient‐related barriers (b) are lacking knowledge about haemophilia, including low perceived benefit of PTX . Forgetfulness, poor self‐management and self‐efficacy as well as lacking disease acceptance are crucial barriers . Full self‐management includes “the ability to seek, understand and apply health information to participate in health decisions and the daily management of symptoms and treatment as well as the physical and psychosocial consequences and lifestyle changes following from chronic disease” .…”

Section: Resultsmentioning

confidence: 99%

“…YWH often feel PTX interferes with their daily activities, have difficulties remembering infusions, dealing with sports restrictions and telling others about their disease . Their desire to fit in with healthy peers and live “normal” active lives may challenge disease acceptance . Adolescents tend to focus on short‐term goals and often make poor health decisions .…”

Section: Resultsmentioning

confidence: 99%

“…To ensure treatment adherence through the transition into adulthood, a main recommendation in the literature is to support the development of young patients’ self‐efficacy and self‐management skills, including psychosocial coping . Full self‐management includes routine integration in everyday life and the ability to use situational cues .…”

Section: Resultsmentioning

confidence: 99%

“…The present qualitative review examined 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, health‐related QoL 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.…”

Section: Introductionmentioning

confidence: 99%

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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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Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

et al. 2017

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BackgroundThe treatment of bleeding disorders improved in the last decades. However, the effect of growing up with bleeding disorders on developmental, emotional, and social aspects is understudied. Therefore, this study assesses HRQOL, developmental milestones, and self-esteem in Dutch young adults (YA) with bleeding disorders compared to peers.MethodsNinety-five YA (18–30 years) with bleeding disorders (78 men; mean 24.7 years, SD 3.5) and 17 women (mean 25.1 years, SD 3.8) participated and completed the Pediatric Quality of Life Inventory Young Adult version, the Course of Life Questionnaire, and the Rosenberg Self-Esteem Scale. Differences between patients with bleeding disorders and their peers, and between hemophilia severity groups, were tested using Mann–Whitney U tests.ResultsYA men with bleeding disorders report a slightly lower HRQOL on the total scale, physical functioning, and school/work functioning in comparison to healthy peers (small effect sizes). YA men with severe hemophilia report more problems on the physical functioning scale than non-severe hemophilia. YA men with bleeding disorders achieved more psychosexual developmental milestones than peers, but show a delay in ‘paid jobs, during middle and/or high school.’ A somewhat lower self-esteem was found in YA men with bleeding disorders in comparison to peers (small effect size). For YA women with bleeding disorders, no differences were found on any of the outcomes in comparison to peers.ConclusionThis study demonstrates some impairments in HRQOL and self-esteem in YA men with bleeding disorders. By monitoring HRQOL, problems can be identified early, especially with regard to their physical and professional/school functioning.

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Achieving self-management of prophylactic treatment in adolescents: The case of haemophilia

Cited by 16 publications

References 29 publications

Evidence for and cost‐effectiveness of physiotherapy in haemophilia: a Dutch perspective

Evidence for and cost‐effectiveness of physiotherapy in haemophilia: a Dutch perspective

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

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

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