Evidence map›Paper›PMID 28069034›Full record

ArticleHealth and quality of life outcomes2017

Health-related quality of life and unmet healthcare needs in Huntington's disease.

Marleen R van Walsem, Emilie I Howe, Gunvor A Ruud, Jan C Frich, Nada Andelic

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health and quality of life outcomes, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
26citing papers in PubMed, 1 pooled it
1.4field-weighted citation impact, top 22% of its field
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

26 citing papers in PubMed, 1 synthesis or guideline pooled it, 49 citations in OpenAlex.

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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

5 authors at 1 institution in 1 country.

Marleen R van WalsemCentre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway. r.m.v.walsem@medisin.uio.no.
Emilie I HoweCentre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway.
Gunvor A RuudCentre for Rare Disorders, Oslo University Hospital, Rikshospitalet, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
Jan C FrichInstitute of Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway.
Nada AndelicCentre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway.
Oslo University Hospital · NO

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundHuntington's disease (HD) is a rare neurodegenerative disorder with a prevalence of 6 per 100.000. Despite increasing research activity on HD, evidence on healthcare utilization, patients' needs for healthcare services and Health-Related Quality of Life (HRQoL) is still sparse. The present study describes HRQoL in a Norwegian cohort of HD patients, and assesses associations between unmet healthcare and social support service needs and HRQoL.

methodsIn this cross-sectional population-based study, 84 patients with a clinical diagnosis of HD living in the South-East of Norway completed the HRQoL questionnaire EuroQol, EQ-5D-3L. Unmet needs for healthcare and social support services were assessed by the Needs and Provision Complexity Scale (NPCS). Furthermore, functional ability was determined using the Unified Huntington's Disease Rating Scale (UHDRS) Functional assessment scales. Socio-demographics (age, gender, marital status, occupation, residence, housing situation) and clinical characteristics (disease duration, total functional capacity, comorbidity) were also recorded. Descriptive statistics were used to describe the patients' HRQoL. Regression analyses were conducted in order to investigate the relationship between unmet healthcare needs and self-reported HRQoL.

resultsThe patients were divided across five disease stages as follows: Stage I: n = 12 (14%), Stage II: n = 22 (27%), Stage III: n = 19 (23%), Stage IV: n = 14 (16%), and Stage V: n = 17 (20%). Overall HRQoL was lowest in patients with advanced disease (Stages IV and V), while patients in the middle phase (Stage III) showed the most varied health profile for the five EQ-5D-3L dimensions. The regression model including level of unmet needs, clinical characteristics and demographics (age and education) accounted for 42% of variance in HRQoL. A higher level of unmet needs was associated with lower HRQoL (β value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (β value 0.564; p < 0.001).

conclusionsThe study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.

Indexed as

Social SupportAdultCross-Sectional StudiesFemaleHealthcare DisparitiesHealth Services Needs and DemandHumansHuntington DiseaseMaleMiddle AgedNorwayQuality of LifeRegression AnalysisSelf ReportSurveys and QuestionnairesYoung AdultEQ-5DHealthcare needsHealthcare servicesHealth-related Quality of LifeHuntington’s diseaseNPCS

Identifiers

PMID28069034
PMCPMC5220609
OpenAlexW2569591781

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.