Abstract
Aims and objectivesTo (i) characterise prevalence of distress amongst people diagnosed with cancer, (ii) determine factors associated with increasing distress, (iii) describe reported problems for those with clinically significant distress and (iv) investigate the factors associated with referral to support services.BackgroundInternational studies report a high prevalence of clinically significant distress in people with cancer. Australian studies are notably lacking. Additionally, clinicians still do not fully understand the factors associated with cancer‐related distress.DesignPeriod prevalence study.MethodsDistress screening data were analysed for 1,071 people accessing the Cancer Council Western Australia information and support line between 01/01/2016–31/12/2018. These data included people's demographics, cancer diagnoses, level of distress, reported problems and the service to which they were referred. Distress and reported problems were measured using the National Comprehensive Cancer Network Distress Thermometer and Problem List. A partial proportional logistic regression model was constructed to determine which factors were associated with increasing levels of distress. Standard binary logistic regression models were used to investigate factors associated with referral to support services. The STROBE checklist was followed.ResultsPrevalence of clinically significant distress was high. Self‐reported depression, sadness, worry and a lack of control over treatment decisions were significantly associated with increasing distress. Emotional problems were the most prevalent problems for people with clinically significant distress. Most people were referred to emotional health services, with depression, fatigue, living regionally and higher socioeconomic status associated with referral.ConclusionsEmotional problems such as depression, sadness and worry are associated with increasing levels of distress.Relevance to clinical practiceNot all factors associated with referral to support services were those associated with increasing levels of distress. This suggests that other factors may be more influential to referral decisions.
Highlights
It is estimated that over 145,000 new cases of cancer will be diagnosed in Australia in 2020 (Australian Institute of Health & Welfare [AIHW], 2020)
Using a non-identifiable data set extracted from the Council Western Australia (CCWA) information and support line database, this study aimed to (i) characterise prevalence of clinically significant distress amongst people diagnosed with cancer, (ii) determine factors associated with increasing levels of distress, (iii) describe the most commonly reported problems for those with clinically significant levels of distress and (iv) investigate the factors associated with referral to cancer support services
The telephone support line offered through this service is the primary mode of engagement for people diagnosed with cancer (Cancer Council Western Australia [CCWA], 2020a), equivalent in-person support is offered at certain designated CCWA offices and satellite hubs across metropolitan and regional WA (CCWA, 2020c)
Summary
It is estimated that over 145,000 new cases of cancer will be diagnosed in Australia in 2020 (Australian Institute of Health & Welfare [AIHW], 2020). Research has found that higher unmet needs are associated with the following sociodemographic, clinical and psychological characteristics: younger and older age, ethnicity, intensity of treatment, cancer type, quality of life, low income, anxiety and depression (Beckjord et al, 2014; Butow et al, 2013; Kent et al, 2012; Knobf et al, 2012; Park & Hwang, 2012;). Unmet needs are directly associated with distress, defined by the National Comprehensive Cancer Network as a ‘multifactorial, unpleasant experience of a psychological (cognitive, behavioural and emotional), social, spiritual and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment' (Holland et al, 2019). While a certain level of distress is to be expected in those with cancer, without adequate monitoring and early intervention, distress could lead to serious mental health issues, which are known to compound existing physical problems and impact mortality (Pinquart & Duberstein, 2010)
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