Abstract B4: Supportive care needs survey for Australian indigenous cancer patients
Authors: Valery Patricia C. , Beesley Vanessa L. , Jacka Catherine , Janda Monika , Whop Lisa , O'Rourke Peter , Green Adele , Garvey Gail 
Published: December 2010

Despite a 21 % lower incidence of cancers, Aboriginal and Torres Strait Islander people (referred to as indigenous) have death rates up to 45% higher compared to other Australians. The reasons for this may be due to later cancer stage at diagnosis, reduced treatment uptake, increased comorbidities and higher rates of aggressive cancers. Additionally, indigenous patients face further impediments (e.g., poverty, language, cultural barriers, remoteness, a lack of appropriate information) that can make it difficult to access treatment and support. Therefore, it is plausible that their supportive care needs’ (SCN) profile is different from the general population.

There are several psychometrically validated measures to assess the prevalence and magnitude of SCN in cancer populations. There are also several subscales or supplementary modules for specific cancer site or group needs. Indigenous cancer patients are a unique group, but no published research has specifically assessed their SCN. We are conducting a study using an existing SCN survey tool (SCNS-SF34) for cancer patients and validating its cultural sensitivity for Australian indigenous people. There are three parts to the study: (i) A qualitative component to assess face and content validation of the existing 34 item instrument and develop a sub-set of additional questions that are culturally relevant to indigenous cancer patients; (ii) A quantitative assessment of the psychometric properties (i.e. construct validity and internal reliability) of the survey tool for indigenous cancer patients; (iii) A descriptive study of SCN of indigenous cancer patients.

We are about to complete the qualitative part. To date we have conducted 30 face-to-face interviews with indigenous cancer patients (from rural and urban regions) and four focus groups with health professionals and key-informant community members who have involvement and/or experience with indigenous cancer patients. These were guided by semi-structured questions about appropriateness and relevance of SCNS-SF34 content for Indigenous cancer patients and other content that should be included.

Participants generally agreed that the original SCNS-SF34 needed to be substantially changed. Almost all of the existing 34 items were shortened or changed to use indigenous-friendly language (e.g. the words anxiety, depressed and cancer were substituted with worry, sad and your illness). Some questions were omitted (e.g. item on death and dying) as they were culturally inappropriate, and some added (e.g.,”Having traditional bush tucker in hospital,” “Feeling comfortable with the sex of the doctor during treatment, examinations and discussions (women's/men's business)”). Participants indicated that the sexual items should be optional as these were considered culturally inappropriate by some but important to others (instructions were added to indicate that). They also indicated that the overarching question and response options were confusing so these were amended.

Modification of the wording of the survey in response to these concerns rendered it culturally appropriate and acceptable for use with Indigenous cancer patients. Information provided by these interviews assisted the development of the “adapted SCN” survey that will be used with Indigenous cancer patients in the quantitative parts of the study (data collection commence in August, 2010).

Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):B4.