The development of a supportive care needs assessment tool for Indigenous people with cancer

Aboriginal and Torres Strait Islander Australians (referred to here as Indigenous Australians) have a lower incidence of cancer overall compared to non-Indigenous Australians [1] although the incidence rates for some cancers are much greater e.g. cervical cancer (18 vs. 7 cases/100,000, respectively) [1]. Additionally, Indigenous Australian cancer patients are more likely to be diagnosed with cancer at advanced stages, and with cancers that have higher mortality rates; they also have a greater number of co-morbidities [2, 3]. As a result Indigenous Australians have cancer mortality rates up to 45% higher than other Australians [3‐5].

Indigenous Australians, as do Indigenous peoples from other countries such as New Zealand, Canada and the US differ from their non-Indigenous counterparts in the way they conceptualize health and their cultural and belief systems [5]. They have a long history of dispossession, discrimination and social and economic marginalization [1] which may contribute to the disparity in mortality. Although many Indigenous people (83%) are proficient in English, language is commonly reported as a barrier to accessing health care and support services [4]. Whilst accessing health services is an important determinant of health outcomes for preventative care and treatment many Indigenous people do not access these services [5, 6]. For example in Australia, Canada, New Zealand and the United States, Indigenous women are less likely to participate in cervical screening programs in comparison to the respective country uptake rates [5]. Basic infrastructure and logistical issues such as a lack in the provision of transport and having appropriate travel arrangements, and suitable accommodation for both the patient and their support person/companion may also impede Indigenous people’s access to cancer care and treatment services [7]. In recognition that there are cultural differences in the way most Indigenous peoples perceive cancer (a highly feared disease that equates to death), receive and process information about their cancer diagnosis and treatment, and cope with illness [5, 8‐12], research into the specific supportive care needs of Indigenous populations is crucial for provision of appropriate supportive care. These underlying beliefs can bring on additional stress and may also prevent them from accessing cancer services and/or commencing or completing cancer treatments.

To assess the supportive care needs of cancer patients, a number of self-administered questionnaires have been developed [13‐15]. The Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) is commonly used to measure the perceived support needs of adult cancer patients across five domains (psychological, health system and information, physical and daily living, patient care and support and sexuality needs) [14, 16]. However, the ability of this tool and others like it to detect and accurately measure the supportive care needs of Indigenous people with cancer remains untested. To date, none of the existing need assessment tools have been validated in an Indigenous cancer population, nor are there any supportive care needs assessment measures which incorporate Indigenous-specific survey items.

This study employed qualitative research methods to assess the face and content validity of the SCNS-SF34 for Indigenous people with cancer and to develop new Indigenous-specific items for use in conjunction with the modified instrument.

Patients’ quality of life, distress and supportive care needs have been shown to independently predict survival, particularly in cancer patients with advanced disease [18, 19]. While quality of life measures have been used for many years, a more recent approach aims to assess patients’ need for supportive care services as well as whether those needs are being met [20‐23]. This measurement approach allows identification of individuals and/or groups with higher levels of need. Health services can be mobilized or interventions can be developed to prevent or reduce health care problems in the future [14, 15] by offering appropriate care provisions or interventions to these vulnerable populations.

The SCNAT-IP differs in a number of ways from the existing tool (SNCS-SF34). Firstly, all items from the SCNS-SF34 were rephrased and seven items were dropped following in-depth discussions with study participants. Whilst all questions are optional, participants are given a forewarning prior to asking questions about their sexual needs. During the interviews it became apparent that some Indigenous people may find these questions culturally inappropriate. This may be particularly so, when a female interviewer is asking a male cancer patient about their sexual needs (“men’s business”) (or vice versa) or a younger interviewer is interviewing an older patient. Thirdly, some items were re-ordered to have similar questions grouped together (e.g. SCNS-SF34, item 17 moved after 13) to make it easier for patients to express their needs in this domain. Twelve new Indigenous specific items were developed that were not sufficiently represented in the SCNS-SF34. The instructions and response format of the original SCNS-SF34 were deemed confusing by participants and were simplified. The tool was further modified to allow participants to initially give a yes/no response to each item before quantifying their need.

The SCNAT-IP is intended to be administered orally and has an accompanying “participant response booklet”. This method of administering surveys to Indigenous people is widely accepted and has been used in the development of and/or validation of other tools [24, 25]. Having an interviewer read aloud the questions and choice of responses will also assist those participants who have low literacy levels. It is envisaged that the tool will be utilised in hospitals by Cancer Care Coordinators to assist them to better meet the ongoing needs of their Indigenous patients. In addition the tool will be used in research to measure how needs in this population change overtime and/or in response to intervention. The outcomes of this study and other studies that have adapted psychometric and other tools for use with Indigenous Australians are comparable [24‐26].

The data here, is itself a rich reflection of the issues commonly faced by Indigenous Australians when accessing the health care system. For example, many aspects of participant’s concerns overlap with issues of ownership, control, access, and possession [27], such as knowing where to go within the hospital, having a person to speak to and having appropriate food. The reluctance to have certain “culturally loaded” words such as “cancer” or “death” included in the IP version of the survey provides important insights into how services can utilise a more patient-centred approach to Indigenous healthcare. While many of these issues are relevant to non-Indigenous people with cancer as well, the impact of public health campaigns to educate the general population and allay their fears about cancer, early detection, treatments and cures have been much more successful amongst the non-Indigenous population [5]. Further adding to Indigenous peoples’ fatalistic views about cancer is the reality that overall Indigenous Australians have much higher cancer death rates than their non-Indigenous counterparts [1].

The participants were broadly representative of Indigenous people with cancer [28] with a diversity of educational and employment backgrounds, ages, marital status, and cancer types, and the patients were mostly receiving treatment for their cancer. However, the participant numbers for each cancer group were small and more likely to reside in locations with good to average health care access (59%) compared with the overall Indigenous cancer population (34%) [28]. Despite these limitations the newly developed supportive care needs assessment tool for Indigenous people (SCNAT-IP) does provides a mechanism to standardize the assessment of the supportive care needs of Indigenous adults with cancer in a culturally appropriate manner. Additional data collection is underway to further develop and test the psychometric properties of this new tool.

The SCNAT-IP shows promising face and content validity for Indigenous people with cancer. This tool among others will be useful in informing services where they need to direct their attention for these patients.