This study found that six months after a cancer diagnosis, about one-third (37%) of survivors reported one or more items of moderate or high level unmet need, while almost two thirds (63%) reported either no or low level unmet needs. The most commonly reported moderate to high level unmet needs were from the psychological and physical and daily living domains. This is consistent with other recent needs assessments conducted with samples of cancer survivors at the end of treatment , in early phases of survivorship [15, 18] and in long-term survivorship [14, 16]. However, previous studies [13, 15, 17, 18] found between 43%-60% of survivors reported at least one moderate or high level unmet need, compared to 37% of survivors in this study. Similarly, unlike earlier studies which found the most prevalent item of moderate or high unmet need occurred among 27-40% of recent survivors [13, 17, 18], the most commonly reported item of unmet need in this study was endorsed by only 15% of survivors.
The prevalence of unmet need reported by survivors in this study is clearly lower than previously reported, despite using the same validated instrument, and classification of unmet need. This may be because earlier studies of cancer survivors diagnosed with a diversity of cancer sites did not use population-based samples [13, 17, 18] and are therefore more susceptible to selection bias. In contrast, we used the two largest state-based cancer registries in Australia to assemble a population-based sample of survivors in the very early stages of cancer survivorship. Given that the study sample is generally representative of the source population, we are confident in our findings that most survivors’ supportive care needs, as measured by the SCNS-SF34, are relatively well met.
Due to the size and composition of the study sample, we were able to directly compare the prevalence of supportive care needs between seven common cancer types in Australia . This bivariable analysis revealed significant variation across cancer types, with particularly low levels of unmet need reported by survivors of melanoma, 65% of whom reported no items of unmet need. This is fitting with our anecdotal experience whereby participants who were survivors of melanoma often questioned the legitimacy of their contribution to the study as they perceived themselves to have suffered less than survivors of other cancer types, and therefore less deserving of attention. Australia has the world’s highest incidence rate of melanoma; it is typically identified at early stages when simple treatment such as surgery will achieve a good prognosis . It is possible that the omission of melanoma survivors from the sample composition of previous studies [17, 18] may have contributed to their higher prevalence of unmet need compared to this study. In contrast, the highest levels of unmet need were reported by survivors of lung cancer, with 60% reporting at least one item of moderate or high level need. Given the high level of burden associated with lung cancer in terms of poor prognosis, treatment side effects and declining physical health, this finding is not surprising.
Subgroups of survivors with domain-specific and widespread unmet needs were identified. After adjusting for a comprehensive range of individual, disease, health behaviour, psychological and social factors, cancer type was found to be significantly associated with moderate to high level unmet physical and daily living, and sexuality needs only. In particular, survivors of lung cancer had the highest odds of reporting unmet physical and daily living needs, while survivors of prostate cancer had extremely high odds of reporting unmet sexuality needs. These findings suggest that the type of unmet need experienced by survivors does not routinely differ between cancer types. Rather, the notion of cancer site- specific unmet needs appears to apply to only a few explicit dimensions of unmet need.
Consistent with previous studies, not being in remission was associated with unmet health system and information, and patient care and support needs; this is not surprising given this subgroup of survivors is likely to be receiving intermittent treatment and symptom management. While almost three quarters of survivors reported not receiving any active treatment in the last month, we did not assess if participants had completed all active treatments given the changeable and uncertain nature of adjuvant treatment regimes. While each treatment was considered separately, having received chemotherapy in the last month was the only treatment associated with higher odds of reporting unmet needs. Interestingly, physical activity was the only health behaviour associated with unmet needs, with sedentary survivors reporting higher odds of unmet psychological, and physical and daily living needs. Although 37% of the sample resided in regional or remote areas, our results did not support the findings from previous studies of an association between rural location and unmet needs. On account of the range of study factors examined in this study, a number of associations were established for the first time. Low levels of social support and maladaptive coping styles were associated with multiple domains of unmet need. Notably, survivors who were identified as a case on anxious preoccupation coping had more than twice the odds of reporting unmet needs across all five domains. While causation cannot be inferred, the new associations identified in this study are particularly valuable because social support and coping style are potentially amenable to intervention. In particular, attention could be directed towards exploring the contribution that targeted coping interventions focusing on anxiety and helplessness, could make towards the prevention of or reduction in survivors’ unmet needs across a number of domains.
Strengths and limitations
While previous needs assessments have also included a diversity of recent cancer survivors [13, 17, 18], the population-based sampling method used in this study is a major strength as it increases the generalisability of the results. In Australia, the notification of cancer to the cancer registry is a statutory requirement under the state and territory Public Health Acts. Indices of registry data quality demonstrate that the level of case ascertainment is high and the data collected are accurate . However, the overall response rate was 41% (1360/3315 eligible individuals) and may raise concerns about response bias. While this response rate seems low, it is higher than that achieved by other studies which also used cancer registries to recruit diverse samples of recent survivors [40, 41]. Survivors who were not proficient in English were excluded due to the prohibitive cost of translating the questionnaire into other languages and may have resulted in an underestimate of the prevalence of unmet needs given that language barriers have been associated with poorer access to health care services. Our outcome measure, the SCNS-SF34, is a well-validated tool for assessing multiple dimensions of supportive care need and was developed with diverse samples of individuals diagnosed with cancer in terms of cancer type and time since diagnosis . However, it is possible that the SCNS-SF34 may not fully capture the unique needs of cancer survivors in the late treatment to early survivorship phase of care, and therefore this study may underestimate the prevalence of unmet need reported by survivors at six months post-diagnosis. Since this study commenced, two cancer survivor-specific needs assessment tools [41, 42] have been developed and should be considered for use in future studies.