Reliability and validity of a novel Haemophilia‐specific Self‐Efficacy Scale

Abstract

Higher self-efficacy in chronic disease patients is associated with higher development of self-management skills and increased quality-of-life. Quantification and monitoring of self-efficacy is therefore of importance. Self-efficacy in haemophilia patients has received little attention due to lack of standardized scales. To validate the novel Haemophilia-specific Self-Efficacy Scale (HSES) in haemophilia patients on prophylactic home treatment, haemophilia patients aged 1-18 years on prophylactic treatment ≥1 year were included from three Dutch Haemophilia Treatment Centres. The HSES consists of 12 items, relating to perceptions of the ability to function on a day-to-day basis with regard to patient's disease. Retest was performed in a subsample. Validity was proven by the General Self-Efficacy Scale and by the health-related quality-of-life assessment tool Haemo-QoL. Data were analysed from 53 children (response 75%), with a mean age of 9.8 years (SD 4.0). Mean total scale score of HSES was 55.5 (SD 4.7; range 38-60), with a ceiling effect of 17%. The HSES showed adequate internal consistency (Cronbach's alpha 0.72) and good test-retest reliability (Intra-Class-Correlation coefficient 0.75; P < 0.01; n = 37). The convergent validity was adequate as haemophilia-specific self-efficacy correlated significantly with general self-efficacy (r = 0.38; P < 0.01). High HSES scores correlated significantly with quality-of-life as measured by the Haemo-QoL (r = -0.42; P ≤ 0.01). The novel HSES is a reliable and valid tool to assess self-efficacy in paediatric haemophilia patients on prophylactic home treatment. High self-efficacy correlated with higher quality-of-life, further underlining the importance to standardly assess, monitor and improve self-efficacy.

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

“…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” .…”

“…Two main barriers pertaining to patients’ social environment (c) are especially relevant to YWH. The first is parental overprotection impeding young patients in developing self‐management skills and self‐efficacy . Restricted participation and over‐protection cause lower self‐worth and perceived competence as well as family tensions .…”

“…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 .…”

“…Added support may be required when YWH switch to self‐infusion and later move away from home . Haemophilia‐specific tools to support the transition include the Six Core Elements of Health Care Transition, The World Federation of Haemophilia's Guideline for the Management of Haemophilia, the National Hemophilia Foundation MASAC Recommendations, the HSES to measure self‐efficacy and the HEMO‐Milestones Tool to evaluate self‐management competency (Appendix ).…”

“…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.…”