Aims: To identify the top 10 “high/very high” unmet needs reported by haematological cancer survivors; and identify characteristics associated with the top three unmet needs.
Methods: Adults aged 18 to 80 years at time of study and diagnosed with a haematological cancer were recruited from four Australian state cancer registries. Survivors completed a self-report questionnaire containing the Survivor Unmet Needs Survey (SUNS). The SUNS is an 89-item measure of cancer survivor unmet needs in the last month, across five domains. The top ten “high/very high” unmet needs items endorsed by the highest percentage of survivors were identified. Survivor characteristics associated with the top three unmet needs were also explored.
Results: 1,957 eligible survivors were contacted by the registries, of which 715 returned a completed survey (37% response rate). The items “dealing with feeling tired” (17% (n=116); 95%CI: 0.14%, 0.19%), “coping with having a bad memory or lack of focus” (14% (n=99); 95%CI: 0.12%, 0.17%) and “dealing with feeling worried (anxious)” (13% (n=94); 95%CI: 0.11%, 0.16%) were endorsed by the highest percentage of survivors as a “high/very high” unmet need. Seven of the top ten unmet needs were from the emotional health domain, two from the relationships domain and one from the financial concerns domain. Higher levels of psychological symptoms (for example anxiety, depression and stress) and indicators of financial burden (for example having used up savings and had trouble meeting day-to-day expenses due to their cancer) were commonly identified characteristics found to be associated with a number of the top three “high/very high” unmet needs.
Conclusions: Many of the most prevalent “high/very high” unmet needs of adult haematological cancer survivors tend to relate to emotional issues. Survivors reporting high levels of psychological distress or who experience increased financial burden as a result of their cancer diagnosis may need additional support.