ArticleHealth and quality of life outcomes2023
Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review.
Article in Health and quality of life outcomes, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 3 of them syntheses 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
23 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Eligibility definitions and response rate accuracy in studies using routinely collected PROMs: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Pooled it
- Factors associated with response to patient-reported outcome measures: a systematic review of systematic and scoping reviews, and meta-analyses.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Pooled it
- Can patient-reported outcome measures predict mortality in neurological populations? A systematic review.Frontiers in neurologyPooled it
- Completeness of repeated patient-reported outcome measures in adult rehabilitation: a randomized controlled trial in a diverse clinical population.BMC health services research · 2024Trial
- Childbirth experiences in women with polycystic ovary syndrome: A cohort study.Acta obstetricia et gynecologica Scandinavica · 2024Trial
- Cumulative surgeon volume is associated with improved outcomes following hip arthroscopy: A national registry study.Knee surgery, sports traumatology, arthroscopy : official journal of the ESSKA · 2026Article
- Article
- ChatGPT improves readability in validated spine patient-reported outcome measures.North American Spine Society journal · 2026Article
- Privacy preserving digital platform for patient reported outcomes in inflammatory bowel disease.NPJ digital medicine · 2026Article
- Article
- Scalable tracking of symptoms in the electronic health record using large language models in patients with central nervous system cancers undergoing therapy.Neuro-oncology · 2026Article
- A Targeted Literature Review and Patient Focus Groups to Develop Recommendations for Reporting Patient-Reported Measures to Patients and Consumers in Clinical Quality Registries.Health services insights · 2026Article
- Article
- A Pilot Study of Capturing Patient Reported Outcome Measures in the Australasian Pelvic Floor Procedure Registry.The Australian & New Zealand journal of obstetrics & gynaecology · 2025Article
- Article
- Patient-Reported Outcomes Before and After Hallux Valgus Surgery: 2-Year Results From a National Registry Study.Foot & ankle orthopaedics · 2025Article
- Can 3-month models or observed 3- or 6-month patient-reported outcome measures accurately predict 12-month disability and pain after lumbar decompressive surgery?Archives of orthopaedic and trauma surgery · 2025Article
- Article
- Arthroscopic treatment for femoroacetabular impingement yields favourable patient-reported outcomes and method survivorship at 10-year follow-up.Knee surgery, sports traumatology, arthroscopy : official journal of the ESSKA · 2025Article
- Development of a Best Practice Guide to Optimise the Reporting of Patient Reported Measures by Clinical Quality Registries for Quality Improvement Purposes.Health services insights · 2025Article
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
backgroundPatient Reported Outcome Measures (PROMs) are being increasingly introduced in clinical registries, providing a personal perspective on the expectations and impact of treatment. The aim of this study was to describe response rates (RR) to PROMs in clinical registries and databases and to examine the trends over time, and how they change with the registry type, region and disease or condition captured.
methodsWe conducted a scoping literature review of MEDLINE and EMBASE databases, in addition to Google Scholar and grey literature. All English studies on clinical registries capturing PROMs at one or more time points were included. Follow up time points were defined as follows: baseline (if available), < 1 year, 1 to < 2 years, 2 to < 5 years, 5 to < 10 years and 10 + years. Registries were grouped according to regions of the world and health conditions. Subgroup analyses were conducted to identify trends in RRs over time. These included calculating average RRs, standard deviation and change in RRs according to total follow up time.
resultsThe search strategy yielded 1,767 publications. Combined with 20 reports and four websites, a total of 141 sources were used in the data extraction and analysis process. Following the data extraction, 121 registries capturing PROMs were identified. The overall average RR at baseline started at 71% and decreased to 56% at 10 + year at follow up. The highest average baseline RR of 99% was observed in Asian registries and in registries capturing data on chronic conditions (85%). Overall, the average RR declined as follow up time increased.
conclusionA large variation and downward trend in PROMs RRs was observed in most of the registries identified in our review. Formal recommendations are required for consistent collection, follow up and reporting of PROMs data in a registry setting to improve patient care and clinical practice. Further research studies are needed to determine acceptable RRs for PROMs captured in clinical registries.
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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.