BACKGROUND: Optimizing self-management is a key element in multidisciplinary pulmonary rehabilitation in patients with asthma or COPD. This observational study aimed to investigate the changes in... Show moreBACKGROUND: Optimizing self-management is a key element in multidisciplinary pulmonary rehabilitation in patients with asthma or COPD. This observational study aimed to investigate the changes in self-management following pulmonary rehabilitation in subjects with chronic lung disease. METHODS: Data were prospectively and routinely gathered at initial assessment and discharge in subjects taking part in a 12-week multidisciplinary out-patient pulmonary rehabilitation program. Measures of self-management included the Patient Activation Measure (PAM), the Health Education Impact Questionnaire (HEIQ) (8 subscales), a Self-Efficacy Questionnaire (2 subscales), the Lung Information Needs Questionnaire (LINQ), and the Health Literacy Questionnaire (HLQ) (9 subscales). Mean differences with 95% CI and effect sizes were computed. RESULTS: A total of 70 subjects (62.9% women) were included, with a median age of 63.5 y; most of the subjects had been diagnosed with COPD (77%). Between admission and discharge, all measures of self-management increased significantly except for the HEIQ subscales of constructive attitudes and approaches, social integration and support, and health services navigation; and the HLQ subscale of social support for health. The largest improvements (effect size > 0.55) were seen for the PAM (0.57); the HEIQ subscales of health-directed behavior (0.71), self-monitoring and insight (0.62), and skill and technique acquisition (1.00); the HLQ subscales of having sufficient information to manage my health (1.21) and actively managing my health (0.66); and the LINQ (1.85). CONLCUSIONS: Self-management, including activation, improved significantly in subjects with asthma or COPD who took part in a multidisciplinary pulmonary rehabilitation program. (C) 2021 Daedalus Enterprises. Show less
Introduction Prophylactic replacement therapy (prophylaxis) in patients with haemophilia (PWH) requires lifelong, frequent (self)infusions. Prophylaxis effectiveness depends on adherence, and the... Show moreIntroduction 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. Show less
