ArticleBMC palliative care2014
Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study.
Article in BMC palliative care, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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.
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
14 citing papers in PubMed.
- Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.Multiple sclerosis (Houndmills, Basingstoke, England) · 2018Trial
- Integrating palliative care into neurology services: what do the professionals say?BMJ supportive & palliative care · 2018Trial
- Trial
- Satisfaction of Patients with Multiple Sclerosis Towards the Provision of Healthcare Services at a Tertiary Care Setting in Saudi Arabia.Clinics and practice · 2024Article
- "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
- Exploring caregiver experiences and support needs in end-of-life care for people living with HIV: A scoping review protocol.PloS one · 2024Article
- Article
- Palliative care needs of patients with multiple sclerosis in southeast Iran.BMC palliative care · 2021Article
- A realist review of advance care planning for people with multiple sclerosis and their families.PloS one · 2020Review
- The unmet needs of family members of patients with progressive neurological disease in the Czech Republic.PloS one · 2019Article
- Article
- The Role of Palliative Care in Chronic Progressive Neurological Diseases-A Survey Amongst Neurologists in the Netherlands.Frontiers in neurology · 2018Article
- How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.BMC neurology · 2016Article
- Palliative care for severely affected patients with multiple sclerosis: when and why? Results of a Delphi survey of health care professionals.Journal of palliative medicine · 2014Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic.
methods15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis.
resultsMS patients were mostly unfamiliar with the term "palliative care" or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients' complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients.
conclusionMS patients', and health professionals' restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.
Identifiers
What OpenQuestion holds
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.