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


Journal

Haemophilia : the official journal of the World Federation of Hemophilia
ISSN: 1365-2516
Titre abrégé: Haemophilia
Pays: England
ID NLM: 9442916

Informations de publication

Date de publication:
Sep 2020
Historique:
received: 20 08 2019
revised: 01 07 2020
accepted: 14 07 2020
pubmed: 26 8 2020
medline: 6 8 2021
entrez: 26 8 2020
Statut: ppublish

Résumé

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. 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. 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. 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.

Identifiants

pubmed: 32842171
doi: 10.1111/hae.14120
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

793-799

Informations de copyright

© 2020 John Wiley & Sons Ltd.

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Auteurs

Perrine F Limperg (PF)

Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Heleen Maurice-Stam (H)

Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Madelief R Heesterbeek (MR)

Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Marjolein Peters (M)

Department of Pediatric-Hematology, Emma Children's Hospital and Hemophilia Comprehensive Care Treatment Center, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Michiel Coppens (M)

Department of Vascular Medicine, Amsterdam Cardiovascular Sciences, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Marieke J H A Kruip (MJHA)

Department of Hematology, Hemophilia Comprehensive Care Treatment Center, Erasmus University Medical Center, Rotterdam, The Netherlands.

Jeroen Eikenboom (J)

Division of Thrombosis and Hemostasis, Department of Internal Medicine, Leiden University Medical Center, Leiden, The Netherlands.

Martha A Grootenhuis (MA)

Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Lotte Haverman (L)

Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

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