ArticleRMD open2022
Exploring patient's experience and unmet needs on pregnancy and family planning in rare and complex connective tissue diseases: a narrative medicine approach.
Article in RMD open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 17 citations in OpenAlex.
- Article
- Black Fertility Matters Too: community-centered seminars improve fertility knowledge.F&S reports · 2026Article
- A prospective multicenter register study exploring health-related quality of life in women with Sjögren's disease during pregnancy.Frontiers in global women's health · 2026Article
- Addressing unmet needs in pregnancy and family planning of people living with rare and low-prevalence diseases: results of the "ERN transversal working group on pregnancy and family planning" survey.Reproductive health · 2025Article
- Reproductive health knowledge and preferences in adolescent rheumatology patients: a convergent mixed methods study.Pediatric rheumatology online journal · 2025Article
- Support needs and non-pharmacological interventions for adults with mixed connective tissue disease: a systematic literature review.EULAR rheumatology open · 2025Review
- Determinants of Chinese physicians' engagement in narrative medicine: a comprehensive SEM-ANN analysis.Frontiers in medicine · 2025Article
- Psycho-Emotional Aspects of Pregnant Women Diagnosed with a Rare Disease: A Systematic Review.Nursing reports (Pavia, Italy) · 2024Review
- Observational
- Changes in health related quality of life in mothers with inflammatory joint disease from year 2000 to 2020 - a comparative cross-sectional study.Frontiers in global women's health · 2024Article
Corrections and comments
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Authors and funding
20 authors at 10 institutions in 4 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThe aim of this work is to explore patient' unmet needs of rare and complex rheumatic tissue diseases (rCTDs) patients during pregnancy and its planning by means of the narrative-based medicine (NBM) approach.
methodsA panel of nine rCTDs patients' representatives was identified to codesign a survey aimed at collecting the stories of rCTD patients who had one or more pregnancies/miscarriages. The results of the survey and the stories collected were analysed and discussed with a panel of patients' representatives to identify unmet needs, challenges and possible strategies to improve the care of rCTD patients.
results129 replies were collected, and 112 stories were analysed. Several unmet needs in the management of pregnancy in rCTDs were identified, such as fragmentation of care among different centres, lack of education and awareness on rCTD pregnancies among midwifes, obstetricians and gynaecologists. The lack of receiving appropriate information and education on rCTDs pregnancy was also highlighted by patients and their families. The need for a holistic approach and the availability specialised pregnancy clinics with a multidisciplinary organisation as well as the provision of psychological support during all the phases around pregnancy was considered also a priority.
conclusionThe adoption of the NBM approach enabled a direct identification of unmet needs, and a list of possible actions was elaborated to improve the care of rCTD patients and their families in future initiatives.
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