ArticleHealth expectations : an international journal of public participation in health care and health policy2017
Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2017. 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.
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
7 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Evaluating patient-reported outcome measures (PROMs) for future clinical trials in adult patients with optic neuritis.Eye (London, England) · 2023Pooled it
- Characterization of Disease Severity and Stability in NMOSD: A Global Clinical Record Review with Patient Interviews.Neurology and therapy · 2023Article
- Neuromyelitis optica spectrum disorder in Western China impacts employment and increases financial burden in women.Frontiers in neurology · 2022Article
- Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder.Patient preference and adherence · 2021Article
- Neuromyelitis optica spectrum disorder: Patient experience and quality of life.Neurology(R) neuroimmunology & neuroinflammation · 2019Article
- The use of patient-reported outcome research in modern ophthalmology: impact on clinical trials and routine clinical practice.Patient related outcome measures · 2019Review
- Article
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 at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNeuromyelitis optica (NMO) is an auto-immune disease that can cause severe visual and mobility impairments. Research on health-related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs.
aimThis study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient-reported outcome measure.
methodFifteen people with NMO (aged 18-74; 11 women, 4 men) participated in semi-structured interviews; data were analysed using constant comparative analysis.
resultsHRQoL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical symptoms on daily living, utilizing support to achieve independence, expectations for life and meaningful roles in life and purpose. DISCUSSION: Themes highlighted the importance of perceived normality, and its relationship to attaining life goals comparable to peers, as underpinning evaluations of HRQoL. Many people with severe disability reported a high HRQoL, suggesting the inappropriateness of assuming a negative HRQoL on the basis of an individual's neurological impairment.
conclusionsThese findings further the conceptual understanding of HRQoL in NMO, informing patient-care approaches and the development of an NMO-specific patient-reported outcome measure.
Indexed as
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.