Impact of individual background on the unmet needs of cancer survivors and caregivers – a mixed-methods analysis

Abstract

Background Cancer survivors and their caregivers may have various unmet needs that are medically difficult to solve. Previous studies have suggested the relations between individuals’ backgrounds and their unmet needs. We conducted a large-scale analysis to clarify the influence of individuals’ backgrounds, primarily cancer type, on specific types of unmet needs. Methods Using a mixed-methods approach, we analyzed records of first-time callers to a cancer-focused telephone consultation service that was provided by the Kanagawa Cancer Clinical Research Information Organization from October 2006 to May 2014. The qualitative approach concerned extracting unmet needs mentioned in each consultation and classifying them into themes of specific needs, while the quantitative approach comprised multi-variated analysis of the relationships between the frequency by which the needs in each theme arose and the associated callers’ backgrounds. Results A total of 1938 consultation cases were analyzed. In the qualitative analysis, the needs were classified into 16 themes. The mean number of unmet needs for each caller was 1.58 (standard deviation = 0.86). In the multi-variated analysis, caregivers for colorectal cancer survivors had a lower frequency of “emotional/mental health” needs (OR: 0.31, 95%CI: 0.11–0.88, p = 0.028) than did caregivers for breast-cancer survivors. Nevertheless, this was the only significant difference in needs frequency among callers (including survivors and their caregivers) with specific cancer types. Meanwhile, there significant difference in the frequency of occurrence of each unmet need theme was found among items concerning other background elements. Among survivors, sex was related to the frequency of needs among “physical” and “resources” themes, and “emotions/mental health”; their age group with “employment”; treatment course with “physical” and “resources” themes and “cure”; residence with “physical” themes; presence of symptom with “physical,” “education/information,” “resources,” “emotions/mental health,” and “cure” themes. Conclusions This large-scale study suggests that cancer type is not a significant factor for specific unmet needs and that individuals’ backgrounds and presence of symptoms play a more important role. Through this study, it was found that instruments to predict people’s needs and a system to provide individualized cancer care across cancer types should be developed in the future.

Translation and psychometric testing of the Thai version of cancer survivors’ unmet needs measure among cancer survivors

“…44 Furthermore, young cancer survivors have fewer individual experiences compared with older cancer survivors, and therefore the adaptation process of this group might be more difficult than for the older group. Previous research reported that individual backgrounds and present symptoms play a more important role in unmet needs than age per se, 45 while younger cancer survivors consistently report higher unmet needs than other age group. 46 Furthermore, female cancer survivors reported higher unmet needs scores than their male counterparts, possibly because female cancer survivors had more points of concern such as issues relating to body image and residual symptoms (which, in turn, are associated with breast cancer, as discussed below, which generally affects women), and personal relationships, etc.…”

Need differences by treatment phases between patients with colorectal cancer and their caregivers: A text mining analysis

“… 22 Terms related to CRC treatment, tests, and diseases were also highly ranked, similar to research showing a high need for treatment-related resources, treatment, unmet needs related to the cancer itself, and information. 3 , 31 Notably, there were some differences between caregivers and patients, with terms related to defecation and pain appearing in the higher ranks for patients. Such symptoms have significant implications for patients regarding the fear of recurrence and functional loss.…”

Unmet supportive care needs of breast, colorectal and testicular cancer survivors in the first 8 months post primary treatment: A prospective longitudinal survey

“…Individual survivors have varying levels and types of needs and personalised approaches to care are required. A recent analysis found that individuals' background and presence of symptoms play a more important role in the profile of unmet needs than cancer type (Watanabe et al, 2020 ). Our study findings differ from those of others in some respects but inconsistencies in evidence about unmet needs have been widely reported (Puts et al, 2012 ; Willems et al, 2015 ).…”