TY - JOUR
T1 - Adherence to prophylaxis and its association with activation of self-management and treatment satisfaction
AU - Hoefnagels, Johanna Wilhelmina
AU - Schrijvers, Liesbeth H. lène
AU - Leebeek, Frank W. G.
AU - Eikenboom, Jeroen
AU - Schols, Saskia E. M.
AU - Smit, Cees
AU - Schutgens, Roger E. G.
AU - the Haemophilia in the Netherlands 6 Steering Group
AU - Gouw, Samantha C.
AU - Fischer, Kathelijn
N1 - Funding Information: J.H.: has not declared any conflicts of interest. L.S.: has not declared any conflicts of interest. F.L. has received unrestricted research grants from CSL Behring, Takeda and uniQure, and is consultant for Takeda, uniQure, and Biomarin. He is DSMB member for a study sponsored by Roche. JE has received research support from CSL Behring and honorarium for educational activities of Roche and Celgene (all paid to the institute). SS has been paid for participation in an advisory board of NovoNordisk and she received a grant to participate in a masterclass of Takeda, both in 2020. CS has not declared any conflicts of interest. S.G. has received unrestricted research grants from Sobi. K.F. has received speaker's fees from Bayer, Baxter/Shire, Biotest, CSL Behring, Octapharma, Pfizer, NovoNordisk; performed consultancy for Baxter/Shire, Biogen, CSL Behring, Freeline, NovoNordisk, Pfizer, Roche and SOBI; and has received research support from Bayer, Pfizer, Baxter/Shire, and Novo Nordisk. Publisher Copyright: © 2021 UMC Utrecht. Haemophilia published by John Wiley & Sons Ltd. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/7
Y1 - 2021/7
N2 - 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: <12 years; adolescents: 12–18 years; adults >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.
AB - 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: <12 years; adolescents: 12–18 years; adults >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.
KW - adherence
KW - compliance
KW - haemophilia
KW - patient activation
KW - treatment satisfaction
UR - http://www.scopus.com/inward/record.url?scp=85106635448&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/hae.14333
DO - https://doi.org/10.1111/hae.14333
M3 - Article
C2 - 34019720
SN - 1351-8216
VL - 27
SP - 581
EP - 590
JO - Haemophilia
JF - Haemophilia
IS - 4
ER -