Outcomes That Matter in Gastrointestinal Cancer Care: A Focus Group Study of Patient‐Centred Outcomes Identified by Patients and Care Partners.
Background and Objective: Gastrointestinal (GI) cancers pose a substantial burden on patients and care partners, yet outcomes research and clinical tools remain heavily weighted toward clinical endpoints over patient‐centred outcomes (PCOs). Without standardised PCOs, risk communication and shared d...
| Publicado en: | Health Expectations Vol. 29; no. 4; pp. 1 - 15 |
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| Autores principales: | , , , , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Aug2026
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=196480495&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 196480495 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Aug2026 vid: 29 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 196480495 196480495 196480495 10.1111/hex.70835 196480495 ppf: 1 ppct: 14 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Outcomes That Matter in Gastrointestinal Cancer Care: A Focus Group Study of Patient‐Centred Outcomes Identified by Patients and Care Partners. aug: au: Gombay, Anna Ding, Anna Mahar, Alyson Hsu, Amy T. Gotlib Conn, Lesley Armah, Jessica Kosyachkova, Ekaterina Deleemans, Julie Ludwig, Claire Karim, Allia Coburn, Natalie Hallet, Julie affil: Evaluative Clinical Sciences, Sunnybrook Research Institute, Toronto Ontario,, Canada sug: subj: Gastrointestinal Neoplasms Therapy Patient Centered Care Outcome Assessment Patient Attitudes Caregiver Attitudes Risk Assessment Human Male Female Adult Middle Age Aged Canada Qualitative Studies Tertiary Health Care Age Factors Sex Factors Semi-Structured Interview Purposive Sample Thematic Analysis Decision Making, Shared Funding Source Checklists Life Style Health Resource Utilization Functional Status Access to Information Coping Adult: 19-44 years Middle Aged: 45-64 years Aged: 65+ years Male Female ab: Background and Objective: Gastrointestinal (GI) cancers pose a substantial burden on patients and care partners, yet outcomes research and clinical tools remain heavily weighted toward clinical endpoints over patient‐centred outcomes (PCOs). Without standardised PCOs, risk communication and shared decision‐making may revolve around endpoints misaligned with patient priorities. We aimed to identify PCOs meaningful to patients with GI cancer and their care partners. Design, Setting and Participants: We conducted a qualitative focus group study with adult patients with a GI cancer diagnosis and their care partners, recruited from a tertiary cancer centre and patient partner organisations in Canada. Focus groups used open‐ended questions and hypothetical patient personas to elicit PCOs. Two researchers independently extracted PCO concepts from verbatim transcripts and synthesised them using a deductive‐inductive clustering approach informed by thematic analysis and the patient‐centred care framework. Results: Overall, 15 patients and 13 care partners participated. We extracted 254 PCO concepts and consolidated them into 55 unique PCOs organised under 7 parent clusters: care experience (31% of mentions), psychosocial (25%), treatment (16%), lifestyle (12%), healthcare utilisation (8%), functional status (4%), and symptoms (3%). Six PCOs accounted for approximately half of all mentions: communication, care access, information access, treatment understanding, coping abilities, and finances. Patients most often raised psychosocial PCOs, whereas care partners more frequently mentioned functional status and symptom PCOs. Treatment‐related PCOs were a mutual concern. Discussion and Conclusions: Patients and care partners identified 55 PCOs spanning dimensions not consistently captured in existing GI cancer instruments. These PCOs can be integrated in the development of a core outcome set for patient‐centred risk assessment and individualised prediction in GI cancer care. Patient and Public Contribution: Three patient partners with lived experience of cancer contributed to the study as co‐investigators. They informed the focus group guide and its sequencing, advised on the language of recruitment materials, and refined data analysis and interpretation. Patients and care partners also took part as focus group participants. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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