As well as being less likely to work, cancer survivors of working age were more likely to be limited in their daily activities and leisure compared to people who had not had cancer, our latest research finds. Similarly, older cancer survivors (aged over 65) were also more likely to be limited in their leisure pursuits compared with people without cancer.
We know that cancer can impact on people’s paid work status and participation. The percentage of people who return to work after cancer varies from 24% to 94%, and depends on several factors such as health status, socio-demographics, work characteristics and the availability of support from others.
However, there has been far less research on whether it also changes people’s daily activities and leisure. What is available suggests nearly half of people with cancer experience trouble with daily activities such as meal preparation and grocery shopping. There is also evidence that participation in leisure is reduced after cancer, although this work has largely focussed on physical activity and exercise, with very little examination of cultural activities, hobbies or socialising.
Our latest paper, published this week, addresses this gap by looking at whether people with cancer report more limitations in their daily activities and leisure compared to people without cancer. We used the PROFILES Registry, a population-based registry of short and long-term cancer survivors in the Netherlands, collected through a series of cohort studies conducted between 2004 and 2015. Our sample included nearly 2000 cancer survivors, across five cancer types: Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, multiple myeloma, thyroid cancer and prostate cancer. We also had a sample of over 1600 people who had not had cancer.
Among those of working age, 55% of those in the cancer cohort reported participating in paid work, 41% experienced limitations in daily activities and 41% reported limitations in leisure. This was significantly worse than in the working age non-cancer control group, where 66% reported participating in paid work, 22% reported limitations with daily activities and 20% reported limitations with leisure. Among those of retirement age, the non-cancer control group were significantly less likely to have limitations in leisure (30%) than the cancer cohort (39% limited in leisure) but there was no difference in daily activities (40% and 36% respectively).
In particular, Hodkin’s lymphoma survivors had much lower rates of paid work and more difficulty with daily activities and leisure, likely due to the impact of the disease symptoms, extensive treatment and associated side effects, and the probability of relapse. Conversely, thyroid cancer survivors tend to be younger at diagnosis and have less intensive treatment, perhaps explaining why they were more likely in our sample, and equally likely in previous studies, to have a paid job when compared to people who had not had cancer.
While previous research suggests some people reassess their life roles and choose to reduce their work to spend more time in unpaid daily activities and leisure after cancer our results suggest those who are limited in paid work are also limited in their daily activities. This may simply reflect that many who do reassess their roles still rely on work for financial reasons and continue despite limitations in their physical or psychosocial abilities.
Further research to examine how cancer survivors can best be supported to participate in unpaid work and leisure activities is required, given the previous focus of the cancer survivorship literature on return to paid work. Factors which have been shown to improve rates of return to paid work, such as support from family and friends, support of employers and participation in specific rehabilitation programs may also apply to unpaid daily activities and leisure activities.
Participation and limitations in daily activities such as (un)paid work and leisure form significant parts of a person’s identity and are therefore an important component of survivorship care. However, the limited evidence in this area includes very few studies with larger samples or with a range of cancer types. Understanding the impact of cancer on unpaid work, daily activities and leisure may encourage clinicians and health services to take a more holistic view of cancer survivorship.
Co-authors: Marjon Faaij (University Utrecht visiting scholar to the Centre for Health Economics Research and Evaluation at UTS, funded by the Cancer Research Economics Support Team) & Dounya Schoormans (Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands).