Research projects

Psychological morbidity, unmet needs, quality of life and patterns of care in migrant cancer patients: The first year

Principal researchers

Professor Phyllis N Butow
Professor Afaf Girgis
Professor David Goldstein
Professor Maurice Eisenbruch
Professor Madeleine T King
Dr Michael Jefford
Associate Professor Fran Boyle
Dr Marion Harris
Dr Rina Hui
Dr Jodi Lynch
Dr Peter Gibbs
Associate Professor Bettina Meiser

Institution

University of Sydney

Funding

$300,000 (Total funding $600,000)

Co-funded with

Cancer Australia

Award type

Priority-driven Collaborative Cancer Research Scheme

Project completion year

2012

Project brief

Culturally and linguistically diverse (CALD) people have been shown to have poorer cancer screening and mortality outcomes, and may have difficulties within the Australian health system due to language and knowledge barriers, differing beliefs, religion and social suffering. Cancer populations suffer a high rate of psychological morbidity (35 to 45 per cent) and report high levels of unmet needs. Almost all studies in this area have excluded non-English speakers. Very little is known about the rates of psychological disorder, quality of life (QoL) and patterns of care in cancer patients within the CALD community.

Aims

This study aims to:

  • establish the prevalence of anxiety, depression and unmet needs, and document quality of life and patterns of care in cancer patients from Chinese, Arabic and Greek speaking CALD communities across Australia in the first six months of diagnosis
  • explore predictors of anxiety, depression and unmet needs, including demographic and disease variables (as previously established in English-speaking cancer patients) and acculturation
  • characterise the psychometric properties of the translated and culturally-adapted versions of the outcome measures, including factor structure and item function) to augment and inform the valid interpretation of the prevalence and risk factor estimates.

Method

Measures include demographic and disease variables; anxiety and depression (HADs); unmet needs (Supportive Care Needs Survey adapted from phase 1); quality of life (FACT-G); patterns of care (study-developed instrument); and acculturation (Asian American Multidimensional Acculturation Scale). The study was advertised in the ethnic media to increase community acceptance and seek endorsement from each state Cancer Council and local community leaders. First-generation Chinese, Greek- and Arabic-speaking cancer patients, and Caucasian patients, within six months of diagnosis, were recruited through Oncology clinics in 10 hospitals in NSW and Victoria.

This study was the first one in the world to systematically explore wellbeing in CALD individuals in the first six months of a cancer diagnosis using rigorous and culturally appropriate methodology. It complements the researchers’ existing survivorship study in CALD groups by capturing experiences of these patients during the critical phase of active treatment, and by including patients with a poor prognosis who may not survive a year after diagnosis. Based on these data, it will be possible to plan appropriate and targeted interventions, which will hopefully lead to a reduction in morbidity for these vulnerable populations. These data and outcomes will be invaluable to all services wishing to provide culturally appropriate care for their cancer patients.

Findings

A total of 1,604 patients across 16 recruitment sites in NSW, VIC and NT were approached, and 1,249 agreed to participate. At the conclusion of the study, a total of 905 completed questionnaires had been returned by participants (including 332 Anglo-Australian, 254 Chinese, 177 Greek and 142 Arabic).

To answer the research question regarding the psychometric properties of the outcome measures, a random subset of participants (50 from Anglo-Australian and Chinese groups) who had finished treatment were invited to complete a second questionnaire in order to establish the responsiveness of the measures to change in these groups. The data collection for this second questionnaire was completed in September 2011.

In addition, objective clinical data has been collected from the hospital sites about participating patients. The team also obtained aggregate, de-identified summary data describing non-participants at each collaborating recruiting site, to examine potential selection bias in the study. This was completed in April 2012.

Results of the main data analysis indicate that CALD immigrant cancer patients in Australia were 2.1 times more likely to develop clinical anxiety and 3.7 times more likely to develop clinical depression than their Anglo-Australian counterparts.
They also had significantly lower quality of life by 5.7 points on the FACT-G (Functional Assessment of Cancer Therapy - General, range 0-100, Mean=66.1) than Anglo-Australians.

Many immigrants reported difficulties understanding English (45 per cent), understanding the health system (38 per cent) and communicating with their doctor (73 per cent). These difficulties were associated with inferior psychological wellbeing and poor quality of life. In addition, our data on immigrants' unmet needs heavily featured language and information issues.

Publications

Book Chapters

Phyllis Butow, Martin Tattersall, Josephine Clayton, David Goldstein ‘Breaking Bad News and Truth Disclosure in Australia’ in ‘New Challenges in Communication with Cancer Patients’, in New Challenges in Communication with Cancer Patients, edited by A Surbone, Springer, NY, ISBN: 978-1-4614-3368-2

Phyllis Butow, Walter Balle ‘Communication In cancer care: a cultural perspective’ in ‘Clinical Psycho-oncology’ In Clinical Psycho-oncology, edited by Luigi Grassi and Michelle Riba Wiley-Blackwell, Sussex UK, In Press, (Results of our CALD studies informed sections 01 these book chapters).

Journal articles

Tim Luckett, David Goldstein, Phyllis Butow, Val Gebski, Lynley Aldridge, Joshua McGrane, Weng Ng, Madeleine King (2011) ‘Psychological morbidity and quality of life in ethnic minority patients with cancer: a systematic review and meta-analysis’ The Lancet Oncology, Volume 12, Issue 13, Pages 1240 -1248.