Evidence map›Paper›PMID 26201723›Full record

ArticleBMJ open2015

'You are just left to get on with it': qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis.

F Davies, A Edwards, K Brain, M Edwards, R Jones, R Wallbank, N P Robertson, F Wood

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PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.

0numbers the graph read from it
0cells of the map it votes in
22citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

22 citing papers in PubMed.

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  5. Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.Health expectations : an international journal of public participation in health care and health policy · 2022
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

F DaviesInstitute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
A EdwardsInstitute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
K BrainInstitute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
M EdwardsSchool of Human Sciences, Swansea University, Swansea, UK.
R JonesDepartment of Neurology, University Hospital of Wales, Cardiff, UK.
R WallbankDepartment of Neurology, University Hospital of Wales, Cardiff, UK.
N P RobertsonInstitute of Psychological Medicine and Clinical Neurosciences, Cardiff University, Cardiff, UK.
F WoodInstitute of Primary Care and Public Health, Cardiff University, Cardiff, UK.

Funding

Medical Research Council MR/L010305/1
6 · The paper itself

Abstract

objectivesAlthough the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS.

designSemistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis.

settingSouth East Wales, UK.

participants20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups.

resultsFour main themes around disease progression were identified. 'Realisation' describes how patients came to understand they had SPMS while 'reaction' describes their response to this realisation. The 'realities' of living with SPMS, including dealing with the healthcare system during this period, were described along with 'future challenges' envisaged by patients and carers.

conclusionsAwareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them.

Indexed as

Attitude to HealthAdaptation, PsychologicalAdultAgedAged, 80 and overCaregiversDisease ProgressionFemaleFocus GroupsHumansMaleMiddle AgedMultiple Sclerosis, Chronic ProgressiveQualitative ResearchWalesQUALITATIVE RESEARCHREHABILITATION MEDICINE

Identifiers

PMID26201723
PMCPMC4513516

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Registered trials

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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.