Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life
Objective: Patient-reported outcome measures (PROMs) are useful standardized tools to measure current patient health status and well-being. While there are existing constipation-related PROMs, the majority of PROMs were not developed with adequate patient involvement and few examined content validit...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2023-01-01
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| Series: | Computational and Structural Biotechnology Journal |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S200103702300346X |
| _version_ | 1797399154814615552 |
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| author | V Vien Lee Ni Yin Lau Agata Blasiak Kewin Tien Ho Siah Dean Ho |
| author_facet | V Vien Lee Ni Yin Lau Agata Blasiak Kewin Tien Ho Siah Dean Ho |
| author_sort | V Vien Lee |
| collection | DOAJ |
| description | Objective: Patient-reported outcome measures (PROMs) are useful standardized tools to measure current patient health status and well-being. While there are existing constipation-related PROMs, the majority of PROMs were not developed with adequate patient involvement and few examined content validity. Accordingly, the current study aimed to develop a constipation PROM with multiple phases of patient and clinician involvement. Methods: To generate PROM items, 15 patients with chronic constipation (age range =28–79 years, 10 females) underwent a qualitative interview exploring their experiences with chronic constipation. Following that, eight clinical experts completed the content validity index (CVI) ratings of all the items generated to assess content validity. Based on results of the content validity assessment, relevant items were maintained and 12 participants with chronic constipation were re-interviewed to obtain feedback about comprehensibility, comprehensiveness and relevance. Results: Six themes and 25 sub-themes emerged from the qualitative interview, and an initial list of 33 symptom items and 18 quality of life (QoL) items were generated. Based on the CVIs calculated, 11 symptom items and nine QoL items were maintained with the scale-content validity index indicating excellent content validity. Overall, participants indicated the PROM to be relevant, comprehensive and easy to understand however, minor amendments were made to improve the three qualities of interest. Conclusion: The current study developed a constipation PROM that measures both symptom severity and constipation-related QoL, with supporting evidence for relevance, comprehensiveness and comprehensibility. Further prioritization should be given to validating and exploring new digital modalities of PROM administration. |
| first_indexed | 2024-03-09T01:35:21Z |
| format | Article |
| id | doaj.art-9c4346ba178e4f7abaa51d1c8d139af6 |
| institution | Directory Open Access Journal |
| issn | 2001-0370 |
| language | English |
| last_indexed | 2024-03-09T01:35:21Z |
| publishDate | 2023-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Computational and Structural Biotechnology Journal |
| spelling | doaj.art-9c4346ba178e4f7abaa51d1c8d139af62023-12-09T06:05:43ZengElsevierComputational and Structural Biotechnology Journal2001-03702023-01-01224149Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of lifeV Vien Lee0Ni Yin Lau1Agata Blasiak2Kewin Tien Ho Siah3Dean Ho4The N.1 Institute for Health, National University of Singapore, Singapore; The Institute for Digital Medicine (WisDM), Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Corresponding authors at: The N.1 Institute for Health, National University of Singapore, Singapore.The N.1 Institute for Health, National University of Singapore, Singapore; The Institute for Digital Medicine (WisDM), Yong Loo Lin School of Medicine, National University of Singapore, SingaporeThe N.1 Institute for Health, National University of Singapore, Singapore; The Institute for Digital Medicine (WisDM), Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Department of Biomedical Engineering, College of Design and Engineering, National University of Singapore, Singapore; Department of Pharmacology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Corresponding authors at: The N.1 Institute for Health, National University of Singapore, Singapore.Division of Gastroenterology and Hepatology, Department of Medicine, National University Hospital, Singapore; Department of Medicine, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Corresponding author at: Division of Gastroenterology and Hepatology, Department of Medicine, National University Hospital, Singapore.The N.1 Institute for Health, National University of Singapore, Singapore; The Institute for Digital Medicine (WisDM), Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Department of Biomedical Engineering, College of Design and Engineering, National University of Singapore, Singapore; Department of Pharmacology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Bia-Echo Asia Centre for Reproductivity Longevity and Equality (ACRLE), Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Corresponding authors at: The N.1 Institute for Health, National University of Singapore, Singapore.Objective: Patient-reported outcome measures (PROMs) are useful standardized tools to measure current patient health status and well-being. While there are existing constipation-related PROMs, the majority of PROMs were not developed with adequate patient involvement and few examined content validity. Accordingly, the current study aimed to develop a constipation PROM with multiple phases of patient and clinician involvement. Methods: To generate PROM items, 15 patients with chronic constipation (age range =28–79 years, 10 females) underwent a qualitative interview exploring their experiences with chronic constipation. Following that, eight clinical experts completed the content validity index (CVI) ratings of all the items generated to assess content validity. Based on results of the content validity assessment, relevant items were maintained and 12 participants with chronic constipation were re-interviewed to obtain feedback about comprehensibility, comprehensiveness and relevance. Results: Six themes and 25 sub-themes emerged from the qualitative interview, and an initial list of 33 symptom items and 18 quality of life (QoL) items were generated. Based on the CVIs calculated, 11 symptom items and nine QoL items were maintained with the scale-content validity index indicating excellent content validity. Overall, participants indicated the PROM to be relevant, comprehensive and easy to understand however, minor amendments were made to improve the three qualities of interest. Conclusion: The current study developed a constipation PROM that measures both symptom severity and constipation-related QoL, with supporting evidence for relevance, comprehensiveness and comprehensibility. Further prioritization should be given to validating and exploring new digital modalities of PROM administration.http://www.sciencedirect.com/science/article/pii/S200103702300346XPatient-reported outcome measuresConstipationQuality of lifeDigital health |
| spellingShingle | V Vien Lee Ni Yin Lau Agata Blasiak Kewin Tien Ho Siah Dean Ho Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life Computational and Structural Biotechnology Journal Patient-reported outcome measures Constipation Quality of life Digital health |
| title | Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life |
| title_full | Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life |
| title_fullStr | Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life |
| title_full_unstemmed | Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life |
| title_short | Involving patients in the process: Development of a constipation patient-reported outcome measure for symptoms and quality of life |
| title_sort | involving patients in the process development of a constipation patient reported outcome measure for symptoms and quality of life |
| topic | Patient-reported outcome measures Constipation Quality of life Digital health |
| url | http://www.sciencedirect.com/science/article/pii/S200103702300346X |
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