ArticlePloS one2014
Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention.
Article in PloS one, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 41 papers, 3 of them syntheses that pooled it.
What it found
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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.
MS Wellness Navigator: The Effect of Nurse Practitioner (NP-led) Care on Mood, Anxiety and Health Related Quality of Life in People With Multiple Sclerosis - A Randomized Trial
Using Patient-Reported Outcomes To Improve the Care of People With Multiple Sclerosis: A Randomized Trial
Who cites it
41 citing papers in PubMed, 3 syntheses or guidelines pooled it, 102 citations in OpenAlex.
- Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Palliative Care Intervention Trials for Adults Living With Progressive Central Nervous System Diseases and Their Caregivers: A Systematic Review.Journal of pain and symptom management · 2022Pooled it
- EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis.Journal of palliative medicine · 2020Guideline
- Long-term cross sectoral care and case management for people with severe multiple sclerosis and their caregivers - impact on dimensions of life.BMC health services research · 2026Trial
- Communication, Coordination, and Security for People With Multiple Sclerosis (COCOS-MS): A Randomized, Phase II Trial of Cross-sectoral Care and Case Management.Deutsches Arzteblatt international · 2025Trial
- The effect of nurse practitioner (NP-led) care on health-related quality of life in people with multiple sclerosis - a randomized trial.BMC neurology · 2022Trial
- Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.Multiple sclerosis (Houndmills, Basingstoke, England) · 2018Trial
- Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study.PloS one · 2018Trial
- Trial
- A mixed methods cross-sectional study of peer support needs and barriers among multiple sclerosis caregivers in Ireland.Journal of health psychology · 2026Article
- Peer support needs and engagement among people with multiple sclerosis: Associations with social support, loneliness and wellbeing: A cross-sectional study.Journal of health psychology · 2026Article
- Needs, experiences, and knowledge of people with primary progressive multiple sclerosis: a scoping review.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Article
- Article
- Exploring Different Levels of Contact Frequency in Multiple Sclerosis Care.Brain and behavior · 2025Article
- Experiences and challenges of people with multiple sclerosis and low attendance to clinical follow-up: a qualitative study.BMC neurology · 2025Article
- "So at least now I know how to deal with things myself, what I can do if it gets really bad again"-experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study.BMC health services research · 2024Article
- Profile and burden of the family caregiver: the caring experience in multiple sclerosis. An observational study.BMC psychology · 2024Observational
- Impact of the COVID-19 Pandemic on the Personal Networks and Neurological Outcomes of People With Multiple Sclerosis: Cross-Sectional and Longitudinal Case-Control Study.JMIR public health and surveillance · 2024Article
- Lived experience of persons with multiple sclerosis: A qualitative interview study.Brain and behavior · 2023Article
- Article
Corrections and comments
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Authors and funding
17 authors at 7 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFew data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported).
objectiveTo identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs.
methodData were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized.
resultsBetween October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community.
conclusionsUnmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.
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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.