ArticleHealth expectations : an international journal of public participation in health care and health policy2026
Outcomes That Matter in Gastrointestinal Cancer Care: A Focus Group Study of Patient-Centred Outcomes Identified by Patients and Care Partners.
Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
BACKGROUND AND
objectiveGastrointestinal (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
participantsWe 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.
resultsOverall, 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
conclusionsPatients 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.
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