Evidence map›Paper›PMID 26563251›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2016

Patient-reported outcomes: pathways to better health, better services, and better societies.

N Black, L Burke, C B Forrest, U H Ravens Sieberer, S Ahmed, J M Valderas, S J Bartlett, J Alonso

Registry-linked trialAbstract read
PubMed Publisher
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03802188 (Hydroxychloroquine Exposure in Systemic Lupus Erythematosus), which is not on this map. Cited by 82 papers, 7 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
82citing papers in PubMed, 7 pooled it
38.5field-weighted citation impact, top 1% 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.

NCT03802188 unknown statusnot on this mapstarted 2018, after this paper: background citation

Hydroxychloroquine Exposure in Systemic Lupus Erythematosus (SLE)

TypeobservationalSponsorMcGill University Health Centre/Research Institute of the McGill University Health CentreRan2018 to 2025Enrolled3,700ConditionsSystemic Lupus Erythematosus
3 · Its place in the literature

Who cites it

82 citing papers in PubMed, 7 syntheses or guidelines pooled it, 178 citations in OpenAlex.

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  12. Moving forward, leaving the patients behind? A multilevel assessment framework for evaluating patient-centred, integrated care quality.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Review
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  14. From fragmentation to integration: Patient-reported access to cardiovascular care in Colombia's primary health system.Revista panamericana de salud publica = Pan American journal of public health · 2026
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  20. Efficient patient-initiated follow-up after orthopaedic injections.European journal of orthopaedic surgery & traumatology : orthopedie traumatologie · 2025
    Article

22 more citing papers are in PubMed but not listed here.

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 at 7 institutions in 4 countries.

N BlackDepartment of Health Services Research and Policy, London School of Hygiene & Tropical Medicine, London, WC1H 9SH, UK.
L BurkeLORA Group, LLC, Royal Oak, MD, USA.
C B ForrestDepartment of Pediatrics, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
U H Ravens SiebererDepartment of Pediatrics, University of Pennsylvania School of Medicine, Philadelphia, PA, USA.
S AhmedFaculty of Medicine, McGill University, Montreal, QC, Canada.
J M ValderasHealth Services & Policy Research, Exeter Collaboration for Academic Primary Care (APEx) (Person Centred Care), University of Exeter Medical School, University of Exeter, Exeter, UK.
S J BartlettFaculty of Medicine, McGill University, Montreal, QC, Canada. susan.bartlett@mcgill.ca.ORCID http://orcid.org/0000-0001-9755-2490
J AlonsoHealth Services Research Unit, IMIM (Hospital del Mar Medical Research Institute), Barcelona, Spain.
McGill University Health Centre · CAChildren's Hospital of Philadelphia · USLondon School of Hygiene & Tropical Medicine · GBSierra Lobo (United States) · USUniversitat Pompeu Fabra · ESUniversity of Exeter · GBUniversity of Pennsylvania · US

Funding

Department of Health NIHR/CS/010/024
6 · The paper itself

Abstract

While the use of PROs in research is well established, many challenges lie ahead as their use is extended to other applications. There is consensus that health outcome evaluations that include PROs along with clinician-reported outcomes and administrative data are necessary to inform clinical and policy decisions. The initiatives presented in this paper underline evolving recognition that PROs play a unique role in adding the patient perspective alongside clinical (e.g., blood pressure) and organizational (e.g., admission rates) indicators for evaluating the effects of new products, selecting treatments, evaluating quality of care, and monitoring the health of the population. In this paper, we first explore the use of PRO measures to support drug approval and labeling claims. We critically evaluate the evidence and challenges associated with using PRO measures to improve healthcare delivery at individual and population levels. We further discuss the challenges associated with selecting from the abundance of measures available, opportunities afforded by agreeing on common metrics for constructs of interest, and the importance of establishing an evidence base that supports integrating PRO measures across the healthcare system to improve outcomes. We conclude that the integration of PROs as a key end point within individual patient care, healthcare organization and program performance evaluations, and population surveillance will be essential for evaluating whether increased healthcare expenditure is translating into better health outcomes.

Indexed as

Patient Outcome AssessmentQuality Assurance, Health CareQuality ImprovementDelivery of Health CareHealth StatusHumansProgram EvaluationQuality of LifeHealth evaluationsHealth servicesPatient-reported outcomesPopulation monitoring

Identifiers

PMID26563251
OpenAlexW2279126318

What OpenQuestion holds

Textmetadata
Read underepoch 390

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.