Living with cancer - Impact on cancer patient and partner

Abstract: The overall aim of this thesis was to study different aspects of health on a population based level for persons with four common forms of cancer and their partners, and from an individual level to explore the impact on the daily life situation of living with advanced colorectal cancer for persons with cancer and their partners. Population based register data was used to compare different aspects of health among patients with colorectal, lung, breast and prostate cancer and their partners before and after the cancer diagnosis. The impact of living with advanced colorectal cancer on daily life was sought for both persons with the disease and their partners, by using qualitative interviews. In the first study health care use, diagnoses, and health care costs were analysed for partners (N=11 076). In the second study sick leave was analysed among partners of working age (N=1923). In the third study sick leave was analysed among cancer patients of working age (N=2738) and compared with sick leave in a matched reference cohort (N=12 246). In the fourth study persons with advanced colorectal cancer (n=12) and their partners (n=9) were interviewed about the impact of cancer and its treatment on daily life. Results showed that health care use and health care costs for partners increased in the years following the cancer diagnosis of the person with cancer, mainly for inpatient care. Partners of colon, lung, and prostate cancer patients had the largest increases of health care use. The number of diagnoses increased significantly among partners in the whole sample (RR 1.24; 95% CI, 1.21 to 1.24), with the largest increase in psychiatric diagnoses (RR 2.02; 95% CI, 1.73-2.37). Costs of health care increased most for male partners and especially for younger male partners (age 25 to 64 years) of patients with colorectal cancer and lung cancer. Sick leave among partners increased around the time of the cancer diagnosis for the person with cancer. Partners of persons with colon and lung cancer had the highest number of sick days and of sick leave episodes. Partners of persons with lung cancer had the highest standardised sick day ratio (SSR) compared to the general population (SSR 1.76; 95% CI 1.24-2.40). When it came to sickness absence among cancer patients, lung cancer patients had the highest sick leave rates and prostate cancer patients the lowest. The major part of increase in sickness absence was due to sick leave days, and only a minor part was due to disability pension. Both lung and colon cancer patients had higher sick leave rates compared to their referents already the year before the cancer diagnosis. Irrespective of form of cancer, cancer patients had significantly more sick days in the post diagnostic phase compared to their reference subjects, ranging from five (prostate cancer) to twelve times the amount of sick days (colon and lung cancer). One year post diagnosis less than half of the cancer patients were on sick leave except for lung cancer patients where 63% were still on sick leave. Interviews with persons with advanced colorectal cancer revealed three main categories related to impact on daily life: being inside or outside the healthcare system, striving for normality and becoming conscious about life’s value and vulnerability. Interviews with their partners revealed two main categories related to impact on daily life: living in an altered relation and living in the shadow of the disease. In conclusion, living as a partner of a person with cancer may lead to a decreased health. Supporting the partner through the illness trajectory will benefit both the partner and the person with cancer. The results indicate that apart from the individual perspective, there are also economical incentives for including the partner in supportive cancer care. It is likely to believe that the findings, to some extent, also hold for partners of persons with other cancer forms than the studied. Further research needs to consider consequences for other family members and friends, which may be of equal importance for the person with cancer. The findings of this thesis should be applied to all health care professionals that meet persons with cancer and their partners, in different phases of the disease and in different settings of care.