ArticleScientific reports2025
Rare disease, common struggles: quality of life, caregiver burden and financial wellbeing of family caregivers in Poland.
Article in Scientific reports, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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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.
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.
Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The role of AI-assisted drug repurposing in neurological disorders: a systematic review of validation strategies, challenges and opportunities.Journal of nanobiotechnology · 2026Pooled it
- Patient- and Caregiver-Reported Experiences of Rare Diseases in Türkiye: A Patient-Organization-Recruited Online Survey.Journal of clinical medicine · 2026Article
- Recommendations for the use of clinical outcome assessments in rare disease drug development.EClinicalMedicine · 2026Review
- The impacts of caring for children with inherited metabolic diseases for families: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Article
- Health-related Quality of Life among Children Living with Rare Diseases in China: a Nationwide Study.Applied research in quality of life · 2026Article
- "We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland.Frontiers in public health · 2026Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Caregivers of persons with rare diseases (RDs) face elevated stress levels, caregiver burden (CB), financial pressure, and decreased quality of life (QoL). Since the Polish Rare Diseases Plan for 2024-2025 does not address caregivers' psychosocial needs, this study aimed to assess the experiences of Polish parents of persons with RD. A self-administered, anonymous, computer-assisted online survey was conducted between March and August 2024 to examine the relationship between parenting a person with RD and caregivers' QoL, CB, and financial well-being. The survey included 942 Polish caregivers of individuals with RDs. The study demonstrated a statistically significant negative association between perceived CB and all dimensions of parents' QoL - physical health, psychological health, social relationships, and environment - indicating a broad decline in QoL as CB increases. Financial well-being emerged as a consistent positive predictor of QoL and was shown to buffer the negative effects of CB, underscoring its role as a critical resource for caregivers. Additionally, CB was associated with adverse experiences related to the diagnostic odyssey and its perceived consequences. Our findings highlight that long-term caregiving for individuals with RDs imposes substantial emotional, financial, and social burdens. To effectively address these challenges, Polish health policy must move beyond the biomedical model and adopt a comprehensive approach that integrates psychological, social, and financial support for RD families. Future research should explore targeted interventions that strengthen caregiver resources and reduce systemic barriers to support.
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Registered trials
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.