Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia in Hong Kong

Abstract

Background: This study aims to identify factors affecting health-related quality of life (HRQoL) in Chinese patients with hemophilia in Hong Kong, and to examine the association between treatment adherence and HRQoL outcomes. Methods: Patients with hemophilia A or B from a non-governmental organization reported their HRQoL and treatment adherence to prophylactic therapy using validated tools. Univariate tests and multivariable regression analysis were used to compare differences in outcomes across clinically relevant subgroups. Results: Fifty-six patients were recruited (mean age 30.4 [17.4] years; majority hemophilia A: 75%; moderate-to-severe severity: 88%). Patients who received prophylactic treatment reported fewer work/school problems (25.8 [18.9] versus 51.5 [26.3]; p = 0.001) than those who received on-demand therapy. The multivariable model showed that older age (B = 0.42, 95% CI = 0.093–0.75) and living in public housing (B = 10.24, 95% CI = 0.70–19.77) were associated with worse HRQoL. Older age was associated with treatment non-adherence (r = 0.66, p < 0.0001). Patients with poor adherence tended to report worse functioning in sports/leisure (r = 0.31, p = 0.033). Conclusions: Our results suggest that patients who were older, had lower education attainment and received on-demand treatment had poorer perception of their health. Improving adherence may lead to better HRQoL. Future work includes evaluating the occupational needs prospectively in this population.

Clinical, neuroimaging, and behavioural risk factors for neurocognitive impairment in Chinese patients with haemophilia: A multicentre study

“…32 We have previously reported that poor adherence is correlated with poor self-perception of health and future outlook among patients with haemophilia in Hong Kong. 26 Similarly, our finding in this study that overweight/obese patients have decreased cognitive flexibility might be explained by the association between lifestyle behaviour and cognitive outcomes. 46 Future work should include a prospective and objective assessment of treatment adherence and lifestyle behaviours among patients with haemophilia, and its impact on functional outcomes.…”

“…Although we did not conduct clinical evaluations of mental health disorders in our cohort, our validated screening tool (DASS‐21) showed that one‐fifth of patients reported moderate‐to‐severe depressive or/and anxiety symptoms. We have also previously reported that adult patients with haemophilia in Hong Kong reported poorer quality of life, particularly in the domains of self‐perception, feelings, and perception of the future 26 . Furthermore, this study was conducted during the Coronavirus pandemic; increases in psychological distress were reported during that period in the local population 43 .…”

“…We have also previously reported that adult patients with haemophilia in Hong Kong reported poorer quality of life, particularly in the domains of self-perception, feelings, and perception of the future. 26 Furthermore, this study was conducted during the Coronavirus pandemic; increases in psychological distress were reported during that period in the local population. 43 Our results suggest that depression and anxiety are associated with impaired attention and cognitive flexibility.…”

“…Non‐adherence itself is a complex behavioural concept, and its association with cognitive function might result from worse self‐management of the condition, lower health literacy and socioeconomic status 32 . We have previously reported that poor adherence is correlated with poor self‐perception of health and future outlook among patients with haemophilia in Hong Kong 26 . Similarly, our finding in this study that overweight/obese patients have decreased cognitive flexibility might be explained by the association between lifestyle behaviour and cognitive outcomes 46 .…”

“…The score can range from 24 (most adherent) to 120 (least adherent). The traditional Chinese version of the VERITAS‐Pro questionnaire has previously been used and validated for use in patients with haemophilia in Hong Kong 26 …”