Cancer in the Small Developing Island States of the Eastern Caribbean

Overseas Care and Cancer Survivorship in Small Island Developing States of the Eastern Caribbean

Caribbean studies examining overseas cancer care were lacking patient-level data. Investigators will collect data from patients by establishing a cohort of survivors across six small island developing states (SIDS) (Antigua, Dominica, Grenada, Saint Kitts, Saint Lucia and Saint Vincent). This proposal is novel for the Caribbean, and it is the first step in identifying the critical performance gaps and leverage points in the process of overseas referral for cancer care. Investigators will compare for the first time, the characteristics and experiences of Caribbean cancer survivors in SIDS who seek care overseas to those who received care on-island.

My overarching goal is to investigate the effects of overseas travel for care on patient-centered outcomes in Caribbean SIDS, and to build a research resource to study cancer survival, as I develop my career as an independent mixed-method investigator.

Our primary aims are to (P1): Map patterns of overseas travel for cancer care among cancer survivors of six member states of the OECS and (P2): Explore the lived experience of cancer survivors and caregivers and how overseas travel for care affects their social support systems.

Investigators anticipate that (H1) a substantial proportion of cancer survivors travel outside of their resident country for cancer. We expect certain destinations to be more frequented among cancer survivors by individual characteristics (cancer site, stage and country of residence). We also expect that (H2) overseas care may be associated with both challenges and adaptations in social support systems, as explored qualitatively through survivor and caregiver accounts.

CaSIDEC is an acronym for "Cancer in SIDS of the Eastern Caribbean". Our overarching ambition is to explore how overseas travel for care may affect key domains of cancer survivorship. Survivorship will be our long-term focus and goes beyond survival as commonly measured in clinical trials (i.e. time to death from diagnosis) and will include measures on how individuals experience life with cancer. In this study, overseas care will be considered as any travel across international country borders (including the Caribbean) regardless of the payment mechanism (e.g. out of pocket or government subsidized).

As a first step, investigators wish to contribute towards building research capacity in SIDS. The CaSIDEC study aims to generate foundational evidence on transnational cancer care pathways and survivorship in SIDS of the Eastern Caribbean. Given the limited availability of standardized epidemiological data in this region, investigators wish to establish data resources, measurement approaches, and analytic frameworks necessary to support future hypothesis-driven and causal research on this topic.

In terms of impact, the data from the current study will guide decisions at the patient, provider and policy level. It will inform notably decisions on how overseas referral pathways should be organized across the OECS subregion.

Inclusion Criteria:

• Primary aim 1 (P1): We will include cancer survivors 18 years of age or older, able to communicate in English or local dialect (without cognitive impairment), with an invasive cancer diagnosis (any cancer site, histology, and year of diagnosis), and having accessed health services in their island of residence (i.e. Antigua, Dominica, Grenada, Saint Kitts, Saint Lucia and Saint Vincent ) due to their cancer. Participation will include written authorization to access each patient's data from medical records in health care institutions and centers
• Primary aim 2 (P2): For the qualitative segment of this proposal, field investigators across the 6 islands will purposefully identify cancer survivors and caregivers of survivors who (1) are receiving or already finished their initial active treatment at the time of the study, (2) received a treatment requiring the intervention of a medical professional (e.g. surgery, chemotherapy, radiotherapy), and (3) are willing to provide written consent for one-on-one interviews and/or focus group discussions.

Exclusion Criteria:

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