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. 2025 Jul;31(4):657-667.
doi: 10.1111/hae.70063. Epub 2025 May 19.

Experiences and Needs Regarding Information Provision in Children With Haemophilia: A Qualitative Study on Caregivers' and Healthcare Providers' Perspectives

Caroline M A Mussert  1 , Nadia C W Kamminga  2   3 , Evelien S van Hoorn  4 , Tjaisha M Eekelaar  5 , Silje R Dehli  6 , Carolien van der Velden-van 't Hoff  1 , Sasja Andeweg  1 , Simone H Reitsma  1 , Annebelle C M Nooteboom  7 , Adinda Diekstra  7 , Armaĝan Albayrak  5 , Marjon H Cnossen  1 ; SYMPHONY consortium
Affiliations

Experiences and Needs Regarding Information Provision in Children With Haemophilia: A Qualitative Study on Caregivers' and Healthcare Providers' Perspectives

Caroline M A Mussert et al. Haemophilia. 2025 Jul.

Abstract

Introduction: In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.

Aim: Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).

Methods: A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A comprehensive thematic content analysis was subsequently conducted using several phases of coding.

Results: Three main themes were identified. First, caregivers and HCPs indicated that current disease knowledge and information provision regarding haemophilia varies and could be improved. Both groups underlined the importance of adequate information provision to support decision-making and alleviate anxiety. Second, the need for standardized, centralized and tailored information was expressed, preferably digital. Current information is experienced as fragmented and incomplete, leading to lack of structure and uncertainties. Lastly, information provision cannot exist without additional coaching by the multidisciplinary treatment team and peers.

Conclusion: Both caregivers and HCPs experience unmet needs regarding information provision as currently performed. Empowerment can be provided by standardized, centralized information tailored to disease severity and phase of life. A digital information platform with visual support, could provide a complete, up-to-date, readily available and reliable resource.

Keywords: haemophilia; information provision; patient education; qualitative research; unmet needs.

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Conflict of interest statement

M.H. Cnossen has received grants from governmental and societal research institutes, for example, NWO‐ZonMW, NWO‐NWA, Innovation fund, and unrestricted investigator initiated research grants from private funds, as well as institutional grants, trial funding/educational and travel funding from the following companies over the years: Pfizer, Baxter/Baxalta/Shire Takeda, Bayer Schering Pharma, CSL Behring, Sobi Biogen, Novo Nordisk, Novartis, Nordic Pharma, Roche and het Sikkelcelfonds, and has served as a member on steering boards of Roche and Bayer. All grants, awards and fees go to the Erasmus MC as an institution. All other authors have no competing interest relevant to the contents of this manuscript.

Figures

FIGURE 1
FIGURE 1
Flowchart of performed comprehensive thematic content analysis.
FIGURE 2
FIGURE 2
Overview of main and subthemes derived from study interviews.
FIGURE 3
FIGURE 3
Overview of identified needs and preferences regarding future information provision.
See this image and copyright information in PMC

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