Illness cognitions associated with health‐related quality of life in young adult men with haemophilia

Abstract

Introduction and Aim: Knowledge on patterns of beliefs about the illness (illness cognitions) can provide insight into individual differences in adjustment to haemophilia. The current study aimed to identify (a) which sociodemographic and disease characteristics were associated with illness cognitions and (b) which illness cognitions were associated with health-related quality of life (HRQOL) in young adult men with haemophilia, besides sociodemographic and disease characteristics. Methods: Young adult men (18-30 years) with haemophilia in the Netherlands participated in an online multicentre cross-sectional study. Participants completed the Pediatric Quality of Life Inventory Young Adult version (PedsQL_YA). Potential sociodemographic determinants were assessed with the Course of Life Questionnaire (CoLQ) and illness cognitions with the Illness Cognition Questionnaire (ICQ). Multiple linear regression analyses were performed to assess potential determinants of illness cognitions and HRQOL. Results: Seventy young adult men with haemophilia (mean age 24.7 years, SD 3.5) participated. Born outside the Netherlands (β −0.24) and >1 bleed past 6 months (β −0.32) were associated with less acceptance of the disease. More acceptance was associated with better HRQOL in all domains: β 0.23-0.39. More helplessness was associated with worse total (β −0.30) and physical (β −0.42) HRQOL. Disease benefits, sociodemographic and disease characteristics were not associated with HRQOL. Conclusion: Illness cognitions are associated with HRQOL in young adult men with haemophilia. Early recognition and identification of illness cognitions are important to facilitate support and psychosocial treatment to optimize young adults' well-being. Extra attention is needed for young adult men with frequent bleeds because they are at risk of lowered levels of acceptance of the disease.

Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

“…28 Consistent with this assumption, other authors explained this association with the assumption that the HRQoL would be influenced by the level of acceptance of the infection and the ability to adapt to illness. 38,41,42,43 Our study underlines another aspect referred to as the HRQoL. It has been observed that comorbidities affect the global perception of health but not mental health.…”

“…Jones and colleagues focus on HIV infection and argue that there is a possible risk factor for the appearance of psychological symptoms, even before noticeable physical signs. [36][37][38][39][40] The psychological dynamics in HIV-positive PWH were analyzed over the years by considering only parameters such as stress and the relationship between infections. Specifically considering HIV and mental suffering, the association is still confused even now that vaccinations and antiretroviral therapies slow the progression of the disease.…”

“… 28 Consistent with this assumption, other authors explained this association with the assumption that the HRQoL would be influenced by the level of acceptance of the infection and the ability to adapt to illness. 38 , 41 , 42 , 43 …”

Cognitions Liées à l’Insuffisance Rénale Chronique et Bienêtre Psychologique chez des Patients du Centre d’Hémodialyse de Cocody/Abidjan

“…Quant aux avantages perçus, ils ont eu des liens moyens avec le bienêtre psychologique. Limperg et al (2020) ont découvert au cours de leur étude qu'une plus grande acceptation de l'hémophilie chez les jeunes adultes hommes était associée à une meilleure qualité de la vie liée à la santé. A l'opposé, une plus grande impuissance était corrélée à une pire qualité de vie liée à la santé.…”