ArticleOrphanet journal of rare diseases2021
Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 44 papers.
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Who cites it
44 citing papers in PubMed, 68 citations in OpenAlex.
- Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial.Orphanet journal of rare diseases · 2022Trial
- For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health-Related Quality of Life in Rare Liver Diseases.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- A comprehensive approach to users from a Brazilian clinical genetics service: an observational study.Orphanet journal of rare diseases · 2026Observational
- 'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Health care, social, educational, and employment needs of individuals affected by rare diseases and their families in Catalonia, Spain.Orphanet journal of rare diseases · 2026Article
- Interactions between self-help and hospice and palliative care - Opportunities, barriers and needs (Self-Pall): A study protocol.PloS one · 2026Article
- Co-creation process of an app for people with rare diseases - a citizen science approach.Orphanet journal of rare diseases · 2025Article
- Granulomatous Mastitis Is Not as Benign as You Might Think: What Doctors Need to Know about the Lived Experience of People with This Rare Disease.Breast care (Basel, Switzerland) · 2025Article
- Exploring Recent Developments in the Manifestation, Diagnosis, and Treatment of Patients with Smith-Lemli-Opitz Syndrome: From Molecular Pathways to Clinical Innovations.International journal of molecular sciences · 2025Review
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- Patient and caregiver experiences with a patient-support program for setmelanotide treatment of patients with Bardet-Biedl syndrome.Orphanet journal of rare diseases · 2025Article
- Healthcare needs, care use and health status outcomes in adults with Bardet-Biedl syndrome: a cross-sectional study in Norway.BMJ open · 2025Observational
- Psychological supports for people living with a rare disease in Ireland: an online survey-based study.Irish journal of medical science · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Factors Associated With Depression and Anxiety in People With Rare Diseases During COVID-19: A Cross-Sectional Study.Depression and anxiety · 2025Article
- Exploring Current Health Policies on Rare Diseases in Greece: A Narrative Review.International journal of pediatrics · 2025Review
- Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation's global rare pediatric disease network.Orphanet journal of rare diseases · 2024Article
- Defining the complex needs of families with rare diseases-the example of telomere biology disorders.European journal of human genetics : EJHG · 2024Article
- Nature-based interventions for individuals with rare skeletal disorders: evaluation of a 5-day sailing program on health-related quality of life.Scientific reports · 2024Article
- Mapping the diagnostic odyssey of congenital disorders of glycosylation (CDG): insights from the community.Orphanet journal of rare diseases · 2024Article
Corrections and comments
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn the absence of a cure for the majority of rare diseases, the disease management aims to provide optimal supportive care. The goal of this study was to assess supportive care needs in patients with chronic rare diseases.
methodsCross-sectional mixed-method study was conducted using validated self-report scales and open-ended questions to assess supportive care needs. Participants affected by rare diseases across Germany were contacted via patient organizations and centers for rare diseases. N = 304 participants with 81 different rare diseases completed the study, 81.6% were female, mean age was 44.2 years (SD = 12.8, range 16-74). The quantitative results regarding supportive care needs were compared to a reference population of patients affected by cancer (N = 888). Main outcomes were unmet supportive care needs of patients with rare diseases, as assessed by the Supportive Care Needs Survey (SNCS-SF34) and an open-ended question on support wishes.
resultsPatients with rare diseases did not feel sufficiently supported with regard to psychological support, health system and information, physical and daily living, patient care and support, and sexuality needs. The unmet supportive care needs were significantly higher in the patient sample with rare diseases compared to the SCNS-SF34 reference sample of patients with cancer. 60% of patients with rare diseases did not feel sufficiently socially supported.
conclusionsPatients affected by rare diseases have high unmet support needs in all areas studied. Multidisciplinary care, including psychological support and the provision of information regarding the healthcare system, treatment options, disease course and sexuality, might help address these needs.
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Registered trials
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