Evidence map›Paper›PMID 41023572›Full record

ArticleJournal of patient-reported outcomes2025

A qualitative study on the impact of hemophilia on sexual functioning and well-being in Dutch men.

Tessa C M van Gastel, Lorynn Teela, Vicky Lehmann, Martijn R Brands, Jan P Marchal, Kees Gravendeel, Marjolein Peters, Karin Fijnvandraat, Lotte Haverman

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In one paragraph

Article in Journal of patient-reported outcomes, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Tessa C M van GastelAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam, The Netherlands.ORCID http://orcid.org/0009-0003-0641-0705
Lorynn TeelaAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-8067-2792
Vicky LehmannAmsterdam UMC Location University of Amsterdam, Department of Medical Psychology, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-4898-3176
Martijn R BrandsAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Paediatric Hematology, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-3188-5900
Jan P MarchalAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0001-8269-5157
Kees GravendeelDutch Hemophilia Patient Association, Nijkerk, The Netherlands.
Marjolein PetersAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Paediatric Hematology, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0001-8419-7944
Karin FijnvandraatAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Paediatric Hematology, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-0904-4360
Lotte HavermanAmsterdam UMC Location University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam, The Netherlands. l.haverman@amsterdamumc.nl.ORCID http://orcid.org/0000-0001-7849-0562

Funding

European Association for Haemophilia and Allied Disorders European Association for Haemophilia and Allied DisordersStichting Haemophilia Stichting Haemophilia
6 · The paper itself

Abstract

backgroundPrevious research shows that hemophilia negatively affects sexual functioning and well-being in men with hemophilia. To gain deeper understanding of the impact of hemophilia on sexual functioning and well-being, we conducted this qualitative study. METHODOLOGY: Experiences and needs of men with hemophilia were gathered through focus groups and semi-structured interviews and then thematically analyzed using MAXQDA.

resultsFourteen men with hemophilia (median age 53 years, range 22–71) participated. They reported both hemophilia-specific factors (e.g., bleeding or joint limitations) and chronic disease factors (e.g., pain or self-esteem) negatively affecting sexual functioning and well-being, with differences in the factors and the degree of impact observed based on the age of the men with hemophilia. For instance, older men (aged over 40 years) reported more mental and physical complaints compared to younger men (aged 40 or younger). Many men were uncertain about how to address sexual functioning.

conclusionsTools (e.g., patient reported outcome measures, information materials, training) to provide and assess information about sexual functioning and well-being, to normalize the topic and to open up discussions between men with hemophilia and healthcare professionals are necessary. Future research should focus on developing tools for this purpose.

Indexed as

Hemophilia AQuality of LifeSexual BehaviorAdultAgedFocus GroupsHumansMaleMiddle AgedNetherlandsPsychological Well-BeingQualitative ResearchSelf ConceptYoung AdultChronic diseaseHemophiliaHIVLived experiencesMenQualitative studySexual functioning

Identifiers

PMID41023572
PMCPMC12480166

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.