Adherence to prophylaxis and its association with activation of self-management and treatment satisfaction

被引:9
作者
Hoefnagels, Johanna Wilhelmina [1 ]
Schrijvers, Liesbeth Helene [1 ,2 ]
Leebeek, Frank W. G. [3 ]
Eikenboom, Jeroen [4 ]
Schols, Saskia E. M. [5 ,6 ]
Smit, Cees [4 ]
Schutgens, Roger E. G. [1 ]
Gouw, Samantha C. [7 ]
Fischer, Kathelijn [1 ]
机构
[1] Univ Utrecht, Univ Med Ctr Utrecht, Van Creveldklin, Utrecht, Netherlands
[2] Utrecht Univ Appl Sci, Inst Nursing Studies, Utrecht, Netherlands
[3] Univ Amsterdam, Dept Paediat Haematol, Emma Childrens Hosp, Amsterdam UMC, Amsterdam, Netherlands
[4] Leiden Univ Med Ctr, Dept Internal Med, Div Thrombosis & Hemostasis, Leiden, Netherlands
[5] Radboud Univ Nijmegen Med Ctr, Dept Haematol, Nijmegen, Netherlands
[6] Hemophilia Treatment Ctr Nijmegen, Eindhoven, Netherlands
[7] Univ Med Ctr, Erasmus MC, Dept Haematol, Rotterdam, Netherlands
关键词
adherence; compliance; haemophilia; patient activation; treatment satisfaction; HEMOPHILIA-A PATIENTS; QUALITY-OF-LIFE; MEDICATION ADHERENCE; VERITAS-PRO; ADOLESCENTS; CHILDREN;
D O I
10.1111/hae.14333
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Introduction Prophylactic replacement therapy (prophylaxis) in patients with haemophilia (PWH) requires lifelong, frequent (self)infusions. Prophylaxis effectiveness depends on adherence, and the drivers of treatment adherence among PWH are unclear. Aim To quantify prophylaxis adherence and associations between adherence and patients' treatment attitudes and satisfaction in a large cohort of children and adults with haemophilia. Methods In a nationwide, cross-sectional, questionnaire-based study, PWH with complete information currently using prophylaxis were selected. Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro; normalised score range: 0-100, optimum 0) measured treatment adherence; the Patient Activation Measure (PAM-13; total score range 0-100, optimum 100) measured activation of self-management; Hemophilia Patient Satisfaction Scale (Hemo-Sat; range 0-100, optimum 0) measured treatment satisfaction. Groups were compared according to age (children: 18 years) and adherence levels using non-parametric tests, and correlations were assessed using Spearman's rho. Results Among 321 participants (median age 33 years, interquartile range [IQR]:15-54 years), adherence was high (median VERITAS-Pro total score 17, 89% adherent) but worsened with age, with median scores of 5, 14 and 20 in children, adolescents, adults, respectively (p < .001). Attitudes towards treatment (median 66 vs. 68) participants and treatment satisfaction (12 vs. 10) were similar between adherent and non-adherent patients. The VERITAS-Pro total score was moderately correlated with PAM-13 (r = .41) but not with Hemo-Sat (r = -.11). Discussion Prophylaxis adherence was high (89%) but decreased significantly with age and was not correlated with treatment attitude or treatment satisfaction.
引用
收藏
页码:581 / 590
页数:10
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