Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the 'missing completely at random' assumption: assessing the reasonableness of the “missing completely at random” assumption
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| Název: | Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the 'missing completely at random' assumption: assessing the reasonableness of the “missing completely at random” assumption |
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| Autoři: | Johanne Dam Lyhne, Allan ‘Ben’ Smith, Lars Henrik Jensen, Torben Frøstrup Hansen, Lisbeth Frostholm, Signe Timm |
| Zdroj: | BMC Med Res Methodol BMC Medical Research Methodology, Vol 24, Iss 1, Pp 1-10 (2024) Lyhne, J D, Smith, A B, Jensen, L H, Hansen, T F, Frostholm, L & Timm, S 2024, 'Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the “missing completely at random” assumption', BMC Medical Research Methodology, vol. 24, no. 1, 104. https://doi.org/10.1186/s12874-024-02236-z |
| Informace o vydavateli: | Springer Science and Business Media LLC, 2024. |
| Rok vydání: | 2024 |
| Témata: | Male, Adult, Medicine (General), Missing data, Denmark, Patient reported Outcome, R5-920, Cancer Survivors, Surveys and Questionnaires, 80 and over, Humans, Survivors, Patient Reported Outcome Measures, Registries, Aged, Non-responders, Aged, 80 and over, Research, Registries/statistics & numerical data, Middle Aged, 16. Peace & justice, Colorectal cancer, 3. Good health, Colorectal Neoplasms/therapy, Quality of Life, Female, Colorectal Neoplasms, Cancer Survivors/statistics & numerical data |
| Popis: | Background Patient-Reported Outcome Measures (PROM) provide important information, however, missing PROM data threaten the interpretability and generalizability of findings by introducing potential bias. This study aims to provide insight into missingness mechanisms and inform future researchers on generalizability and possible methodological solutions to overcome missing PROM data problems during data collection and statistical analyses. Methods We identified 10,236 colorectal cancer survivors (CRCs) above 18y, diagnosed between 2014 and 2018 through the Danish Clinical Registries. We invited a random 20% (2,097) to participate in a national survey in May 2023. We distributed reminder e-mails at day 10 and day 20, and compared Initial Responders (response day 0–9), Subsequent Responders (response day 10–28) and Non-responders (no response after 28 days) in demographic and cancer-related characteristics and PROM-scores using linear regression. Results Of the 2,097 CRCs, 1,188 responded (57%). Of these, 142 (7%) were excluded leaving 1,955 eligible CRCs. 628 (32%) were categorized as initial responders, 418 (21%) as subsequent responders, and 909 (47%) as non-responders. Differences in demographic and cancer-related characteristics between the three groups were minor and PROM-scores only marginally differed between initial and subsequent responders. Conclusion In this study of long-term colorectal cancer survivors, we showed that initial responders, subsequent responders, and non-responders exhibit comparable demographic and cancer-related characteristics. Among respondents, Patient-Reported Outcome Measures were also similar, indicating generalizability. Assuming Patient-Reported Outcome Measures of subsequent responders represent answers by the non-responders (would they be available), it may be reasonable to judge the missingness mechanism as Missing Completely At Random. |
| Druh dokumentu: | Article Other literature type |
| Jazyk: | English |
| ISSN: | 1471-2288 |
| DOI: | 10.1186/s12874-024-02236-z |
| Přístupová URL adresa: | https://pubmed.ncbi.nlm.nih.gov/38702599 https://doaj.org/article/b7a146b1928f4569b1f0dfe0298ddb4f https://portal.findresearcher.sdu.dk/da/publications/69d92e75-3e12-4e6c-84e0-2d6f07702fb9 https://doi.org/10.1186/s12874-024-02236-z http://www.scopus.com/inward/record.url?scp=85192021643&partnerID=8YFLogxK https://pure.au.dk/portal/en/publications/732099a2-ae01-4f7f-903e-65cc2e74a56f https://doi.org/10.1186/s12874-024-02236-z |
| Rights: | CC BY URL: http://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/ (http://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (http://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. |
| Přístupové číslo: | edsair.doi.dedup.....da39ed23c5d95663f84e233877870f74 |
| Databáze: | OpenAIRE |
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| Items | – Name: Title Label: Title Group: Ti Data: Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the 'missing completely at random' assumption: assessing the reasonableness of the “missing completely at random” assumption – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Johanne+Dam+Lyhne%22">Johanne Dam Lyhne</searchLink><br /><searchLink fieldCode="AR" term="%22Allan+‘Ben%27+Smith%22">Allan ‘Ben’ Smith</searchLink><br /><searchLink fieldCode="AR" term="%22Lars+Henrik+Jensen%22">Lars Henrik Jensen</searchLink><br /><searchLink fieldCode="AR" term="%22Torben+Frøstrup+Hansen%22">Torben Frøstrup Hansen</searchLink><br /><searchLink fieldCode="AR" term="%22Lisbeth+Frostholm%22">Lisbeth Frostholm</searchLink><br /><searchLink fieldCode="AR" term="%22Signe+Timm%22">Signe Timm</searchLink> – Name: TitleSource Label: Source Group: Src Data: BMC Med Res Methodol<br />BMC Medical Research Methodology, Vol 24, Iss 1, Pp 1-10 (2024)<br />Lyhne, J D, Smith, A B, Jensen, L H, Hansen, T F, Frostholm, L & Timm, S 2024, 'Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the “missing completely at random” assumption', BMC Medical Research Methodology, vol. 24, no. 1, 104. https://doi.org/10.1186/s12874-024-02236-z – Name: Publisher Label: Publisher Information Group: PubInfo Data: Springer Science and Business Media LLC, 2024. – Name: DatePubCY Label: Publication Year Group: Date Data: 2024 – Name: Subject Label: Subject Terms Group: Su Data: <searchLink fieldCode="DE" term="%22Male%22">Male</searchLink><br /><searchLink fieldCode="DE" term="%22Adult%22">Adult</searchLink><br /><searchLink fieldCode="DE" term="%22Medicine+%28General%29%22">Medicine (General)</searchLink><br /><searchLink fieldCode="DE" term="%22Missing+data%22">Missing data</searchLink><br /><searchLink fieldCode="DE" term="%22Denmark%22">Denmark</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+reported+Outcome%22">Patient reported Outcome</searchLink><br /><searchLink fieldCode="DE" term="%22R5-920%22">R5-920</searchLink><br /><searchLink fieldCode="DE" term="%22Cancer+Survivors%22">Cancer Survivors</searchLink><br /><searchLink fieldCode="DE" term="%22Surveys+and+Questionnaires%22">Surveys and Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%2280+and+over%22">80 and over</searchLink><br /><searchLink fieldCode="DE" term="%22Humans%22">Humans</searchLink><br /><searchLink fieldCode="DE" term="%22Survivors%22">Survivors</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+Reported+Outcome+Measures%22">Patient Reported Outcome Measures</searchLink><br /><searchLink fieldCode="DE" term="%22Registries%22">Registries</searchLink><br /><searchLink fieldCode="DE" term="%22Aged%22">Aged</searchLink><br /><searchLink fieldCode="DE" term="%22Non-responders%22">Non-responders</searchLink><br /><searchLink fieldCode="DE" term="%22Aged%2C+80+and+over%22">Aged, 80 and over</searchLink><br /><searchLink fieldCode="DE" term="%22Research%22">Research</searchLink><br /><searchLink fieldCode="DE" term="%22Registries%2Fstatistics+%26+numerical+data%22">Registries/statistics & numerical data</searchLink><br /><searchLink fieldCode="DE" term="%22Middle+Aged%22">Middle Aged</searchLink><br /><searchLink fieldCode="DE" term="%2216%2E+Peace+%26+justice%22">16. Peace & justice</searchLink><br /><searchLink fieldCode="DE" term="%22Colorectal+cancer%22">Colorectal cancer</searchLink><br /><searchLink fieldCode="DE" term="%223%2E+Good+health%22">3. Good health</searchLink><br /><searchLink fieldCode="DE" term="%22Colorectal+Neoplasms%2Ftherapy%22">Colorectal Neoplasms/therapy</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Female%22">Female</searchLink><br /><searchLink fieldCode="DE" term="%22Colorectal+Neoplasms%22">Colorectal Neoplasms</searchLink><br /><searchLink fieldCode="DE" term="%22Cancer+Survivors%2Fstatistics+%26+numerical+data%22">Cancer Survivors/statistics & numerical data</searchLink> – Name: Abstract Label: Description Group: Ab Data: Background Patient-Reported Outcome Measures (PROM) provide important information, however, missing PROM data threaten the interpretability and generalizability of findings by introducing potential bias. This study aims to provide insight into missingness mechanisms and inform future researchers on generalizability and possible methodological solutions to overcome missing PROM data problems during data collection and statistical analyses. Methods We identified 10,236 colorectal cancer survivors (CRCs) above 18y, diagnosed between 2014 and 2018 through the Danish Clinical Registries. We invited a random 20% (2,097) to participate in a national survey in May 2023. We distributed reminder e-mails at day 10 and day 20, and compared Initial Responders (response day 0–9), Subsequent Responders (response day 10–28) and Non-responders (no response after 28 days) in demographic and cancer-related characteristics and PROM-scores using linear regression. Results Of the 2,097 CRCs, 1,188 responded (57%). Of these, 142 (7%) were excluded leaving 1,955 eligible CRCs. 628 (32%) were categorized as initial responders, 418 (21%) as subsequent responders, and 909 (47%) as non-responders. Differences in demographic and cancer-related characteristics between the three groups were minor and PROM-scores only marginally differed between initial and subsequent responders. Conclusion In this study of long-term colorectal cancer survivors, we showed that initial responders, subsequent responders, and non-responders exhibit comparable demographic and cancer-related characteristics. Among respondents, Patient-Reported Outcome Measures were also similar, indicating generalizability. Assuming Patient-Reported Outcome Measures of subsequent responders represent answers by the non-responders (would they be available), it may be reasonable to judge the missingness mechanism as Missing Completely At Random. – Name: TypeDocument Label: Document Type Group: TypDoc Data: Article<br />Other literature type – Name: Language Label: Language Group: Lang Data: English – Name: ISSN Label: ISSN Group: ISSN Data: 1471-2288 – Name: DOI Label: DOI Group: ID Data: 10.1186/s12874-024-02236-z – Name: URL Label: Access URL Group: URL Data: <link linkTarget="URL" linkTerm="https://pubmed.ncbi.nlm.nih.gov/38702599" linkWindow="_blank">https://pubmed.ncbi.nlm.nih.gov/38702599</link><br /><link linkTarget="URL" linkTerm="https://doaj.org/article/b7a146b1928f4569b1f0dfe0298ddb4f" linkWindow="_blank">https://doaj.org/article/b7a146b1928f4569b1f0dfe0298ddb4f</link><br /><link linkTarget="URL" linkTerm="https://portal.findresearcher.sdu.dk/da/publications/69d92e75-3e12-4e6c-84e0-2d6f07702fb9" linkWindow="_blank">https://portal.findresearcher.sdu.dk/da/publications/69d92e75-3e12-4e6c-84e0-2d6f07702fb9</link><br /><link linkTarget="URL" linkTerm="https://doi.org/10.1186/s12874-024-02236-z" linkWindow="_blank">https://doi.org/10.1186/s12874-024-02236-z</link><br /><link linkTarget="URL" linkTerm="http://www.scopus.com/inward/record.url?scp=85192021643&partnerID=8YFLogxK" linkWindow="_blank">http://www.scopus.com/inward/record.url?scp=85192021643&partnerID=8YFLogxK</link><br /><link linkTarget="URL" linkTerm="https://pure.au.dk/portal/en/publications/732099a2-ae01-4f7f-903e-65cc2e74a56f" linkWindow="_blank">https://pure.au.dk/portal/en/publications/732099a2-ae01-4f7f-903e-65cc2e74a56f</link><br /><link linkTarget="URL" linkTerm="https://doi.org/10.1186/s12874-024-02236-z" linkWindow="_blank">https://doi.org/10.1186/s12874-024-02236-z</link> – Name: Copyright Label: Rights Group: Cpyrght Data: CC BY<br />URL: http://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/ (http://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (http://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. – Name: AN Label: Accession Number Group: ID Data: edsair.doi.dedup.....da39ed23c5d95663f84e233877870f74 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1186/s12874-024-02236-z Languages: – Text: English Subjects: – SubjectFull: Male Type: general – SubjectFull: Adult Type: general – SubjectFull: Medicine (General) Type: general – SubjectFull: Missing data Type: general – SubjectFull: Denmark Type: general – SubjectFull: Patient reported Outcome Type: general – SubjectFull: R5-920 Type: general – SubjectFull: Cancer Survivors Type: general – SubjectFull: Surveys and Questionnaires Type: general – SubjectFull: 80 and over Type: general – SubjectFull: Humans Type: general – SubjectFull: Survivors Type: general – SubjectFull: Patient Reported Outcome Measures Type: general – SubjectFull: Registries Type: general – SubjectFull: Aged Type: general – SubjectFull: Non-responders Type: general – SubjectFull: Aged, 80 and over Type: general – SubjectFull: Research Type: general – SubjectFull: Registries/statistics & numerical data Type: general – SubjectFull: Middle Aged Type: general – SubjectFull: 16. Peace & justice Type: general – SubjectFull: Colorectal cancer Type: general – SubjectFull: 3. Good health Type: general – SubjectFull: Colorectal Neoplasms/therapy Type: general – SubjectFull: Quality of Life Type: general – SubjectFull: Female Type: general – SubjectFull: Colorectal Neoplasms Type: general – SubjectFull: Cancer Survivors/statistics & numerical data Type: general Titles: – TitleFull: Missingness mechanisms and generalizability of patient reported outcome measures in colorectal cancer survivors – assessing the reasonableness of the 'missing completely at random' assumption: assessing the reasonableness of the “missing completely at random” assumption Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Johanne Dam Lyhne – PersonEntity: Name: NameFull: Allan ‘Ben’ Smith – PersonEntity: Name: NameFull: Lars Henrik Jensen – PersonEntity: Name: NameFull: Torben Frøstrup Hansen – PersonEntity: Name: NameFull: Lisbeth Frostholm – PersonEntity: Name: NameFull: Signe Timm IsPartOfRelationships: – BibEntity: Dates: – D: 03 M: 05 Type: published Y: 2024 Identifiers: – Type: issn-print Value: 14712288 – Type: issn-locals Value: edsair – Type: issn-locals Value: edsairFT Numbering: – Type: volume Value: 24 Titles: – TitleFull: BMC Medical Research Methodology Type: main |
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