Evidence map›Paper›PMID 40470648›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2025

'Nobody Has Ever Spoken to Me About PCD and Fertility Issues': Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers.

Leonie D Schreck, Sophie Meyer, Eva S L Pedersen, Yin Ting Lam, Hansruedi Silberschmidt, Sara Bellu, Living with PCD patient advisory group, Sofía C Zambrano, Claudia E Kuehni, Myrofora Goutaki

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. 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

10 authors.

Leonie D SchreckInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0001-6180-692X
Sophie MeyerInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0002-3334-9204
Eva S L PedersenInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0003-0293-9954
Yin Ting LamInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0002-2380-834X
Hansruedi SilberschmidtVerein Kartagener Syndrom und Primaere Ciliaere Dyskinesie Deutschland, Wetzikon, Switzerland.
Sara BelluAssociazione Italiana Discinesia Ciliare Primaria Sindrome di Kartagener Onlus, Bari, Italy.
Living with PCD patient advisory group
Sofía C ZambranoInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0002-0918-9722
Claudia E KuehniInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0001-8957-2002
Myrofora GoutakiInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0001-8036-2092

Funding

Our research was funded by the Swiss National Science Foundation, Switzerland (SNSF 192804 and SNSF 10001934) and the Swiss Lung Association, Switzerland (2021-08_Pedersen), and we also received support from the PCD Foundation, the United States; the Verein Kartagener Syndrom und Primäre Ciliäre Dyskinesie, Germany; the PCD Support UK; and PCD Australia, Australia. L.D.S., E.S.L.P., Y.T.L., C.E.K., and M.G. participate in the BEAT-PCD Clinical Research Collaboration supported by the European Respiratory Society.
6 · The paper itself

Abstract

backgroundPrimary ciliary dyskinesia (PCD) affects fertility in both females and males. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their experiences with fertility.

methodsWe used qualitative data from a questionnaire on fertility from Living with PCD, an international participatory study. In optional open-ended comment fields, participants shared their thoughts and experiences related to fertility. We adopted conventional content analysis and analysed the data inductively.

resultsOut of 384 survey respondents, 206 (54%) provided free-text comments that we included in this analysis. We identified five categories illustrating participants' experiences with fertility: (1) challenging experiences of fertility care, ranging from insufficient fertility evidence to poor care from treating physicians, leading to an overall perception of inadequate care related to fertility; (2) PCD-related reproductive concerns, such as pregnancy risks, heritability of PCD and delayed PCD diagnosis; (3) non-PCD-related factors complicating fertility, such as challenges in accessing fertility treatment, age as a limiting factor for fertility and other diseases affecting fertility; (4) psychological impact of infertility, marked by emotional distress, grief and coping strategies; and (5) family caregivers as gatekeepers of fertility information, reflecting their role in managing, delaying, or shaping how and when children learn about fertility.

conclusionWe need enhanced support and standardised reproductive counselling and healthcare for people with PCD to enable informed decisions on fertility and to reduce the fertility-related concerns and psychological impact faced by many. PATIENT OR PUBLIC CONTRIBUTION: This participatory study was co-designed with people with PCD and a patient advisory group. Patients actively shaped research priorities, contributed to study design and questionnaire development, and played a key role in data interpretation and dissemination.

Indexed as

CaregiversCiliary Motility DisordersFertilityInfertilityAdultFemaleHumansMaleMiddle AgedQualitative ResearchSurveys and Questionnairesfertility experiencesparticipatorypatient‐reportedprimary ciliary dyskinesiaqualitative researchreproductive health

Identifiers

PMID40470648
PMCPMC12138451

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.