BackgroundWe modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient’s end of life (EoL) wishes, in a different patient population.MethodsPatients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP intervention, between April 2014 and January 2017. Oncologists and participants were non-blinded. ACP was based on the Respecting Patient Choices model, with an offer to provide individualised ranges for typical, best-case and worst-case scenarios for survival time. Seven facilitators (two oncology nurses, two nurses and three allied health professionals) delivered the intervention within 2 weeks of study enrolment. The primary outcome measure, assessed by interviewing the FM 3 months after patient death, was the FM perception that the patient’s wishes were discussed, and met.ResultsSix hundred and sixty-five patients from seven Australian metropolitan oncology centres were referred for consideration by their oncologists, 444 (67%) met the study inclusion criteria and were approached by a study researcher. Two hundred and eight patients (47%) and their FM entered the trial as dyads. Fifty-three (46%) dyads in the ACP group and 63 (54%) dyads in the usual-care group had complete primary outcome data (p = 0.16). Seventy-nine patients and 53 FMs attended an ACP discussion. Mean length of discussion was 57 min. FMs from 23 (43%) dyads allocated to ACP and 21 (33%) dyads allocated usual care reported the patient’s EoL wishes were discussed and met (difference 10%, 95% CI: −2 to 8, p = 0.27). There were no differences in EoL care received, patient satisfaction with care; FM satisfaction with care or with death; or FM well being. Rates of palliative care referral were high in both groups (97% vs 96%).ConclusionsA formal ACP intervention did not increase the likelihood that EoL care was consistent with patients’ preferences.
Background. Multiethnic societies face challenges in delivering evidence-based culturally competent health care. This study compared health-related quality of life and psychological morbidity in a hospital-based sample of first-generation migrants andAustralian-bornAnglocancerpatients,controllingforpotential confounders related to migrant status. Further, it explored the relative contribution of ethnicity versus migrant-related variables. Methods. Eligible participants, recruited via 16 oncology clinics in Australia, included those over the age of 18, diagnosed with cancer (any type or stage) within the previous 12 months and having commenced treatment at least 1 month previously. Results. In total, 571 migrant patients (comprising 145 Arabic, 248 Chinese, and 178 Greek) and a control group of 274 AngloAustralian patients participated. In multiple linear regression models adjusted for age, sex, education, marital status, socioeconomic status, time since diagnosis, and type of cancer, migrants
Objective: Fear of cancer recurrence (FCR) is common, debilitating, and costly to the health system. While there has been a rising trajectory in FCR-related research, there remain many unanswered questions. A research agenda is required to clarify priorities and ensure that research dollars and effort are expended wisely. This study aimed to elicit research topics and priorities from clinical and academic experts in FCR.Methods: Phase 1 consisted of elicitation by survey of prioritised FCR research topics from 20 members of the Psycho-Oncology Co-operative Research Group (PoCoG) FCR special interest group, followed by a focus group discussion with 28 clinicians, researchers, and cancer survivors, at which survey results were presented and further reflection was encouraged. This resulted in 28 research topics that were then subjected to a Delphi process to establish consensus (phase 2).Results: Thirty-one participants completed round 1 of the Delphi process and 23 round 2, after which satisfactory consensus was reached. Five broad areas of research were identified as priorities. In rank order, they were (1) intervention models; (2) definition, predictors, and outcomes of FCR; (3) detection and screening;(4) training for health professionals; and (5) reaching specific populations.Conclusions: It is hoped that the current findings will guide FCR researchers towards clinically relevant, significant research that will move the field forward.Experts nominated intervention research as the top priority, specifically exploring optimal formats of delivery including stepped care and blended models incorporating online or phone elements to increase accessibility. KEYWORDS cancer, Delphi method, fear of cancer recurrence, oncology, research priorities 1 | INTRODUCTION Fear of cancer recurrence (FCR), defined as "fear, worry or concernrelating to the possibility that cancer will come back or progress," 1(p3266) is pervasive among cancer survivors. While some degree of FCR among cancer survivors is considered normal, 1 approximately 50% experience moderate to high FCR levels. 2 High FCR does not appear to diminish over time and is associated with greater psychological distress, impaired quality of life, and increased health care utilisation. 2 While FCR overlaps with other forms of psychological distress, FCR is often an isolated focus of worry in otherwise mentally well individuals. 3 Up to 79% of survivors report an unmet need for
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