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Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review

BACKGROUND: Patient 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...

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Autores principales: Ruseckaite, Rasa, Mudunna, Chethana, Caruso, Marisa, Ahern, Susannah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10337187/
https://www.ncbi.nlm.nih.gov/pubmed/37434146
http://dx.doi.org/10.1186/s12955-023-02155-5
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author Ruseckaite, Rasa
Mudunna, Chethana
Caruso, Marisa
Ahern, Susannah
author_facet Ruseckaite, Rasa
Mudunna, Chethana
Caruso, Marisa
Ahern, Susannah
author_sort Ruseckaite, Rasa
collection PubMed
description BACKGROUND: Patient 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. METHODS: We 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. RESULTS: The 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. CONCLUSION: A 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12955-023-02155-5.
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spelling pubmed-103371872023-07-13 Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review Ruseckaite, Rasa Mudunna, Chethana Caruso, Marisa Ahern, Susannah Health Qual Life Outcomes Review BACKGROUND: Patient 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. METHODS: We 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. RESULTS: The 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. CONCLUSION: A 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12955-023-02155-5. BioMed Central 2023-07-11 /pmc/articles/PMC10337187/ /pubmed/37434146 http://dx.doi.org/10.1186/s12955-023-02155-5 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Review
Ruseckaite, Rasa
Mudunna, Chethana
Caruso, Marisa
Ahern, Susannah
Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
title Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
title_full Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
title_fullStr Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
title_full_unstemmed Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
title_short Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
title_sort response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10337187/
https://www.ncbi.nlm.nih.gov/pubmed/37434146
http://dx.doi.org/10.1186/s12955-023-02155-5
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