Aileen Timmons

Rising cancer incidence and survival mean that the number of cancer survivors is growing. Accumulating evidence suggests many survivors have long-term medical and supportive care needs, and that these needs vary by survivors’ socio-demographic and clinical characteristics. To illustrate how cancer registry data may be useful in survivorship care service planning, we generated population-based estimates of cancer prevalence in Ireland and described socio-demographic and clinical characteristics of the survivor population. Details of people diagnosed with invasive cancer (ICD10 C00-C96) during 1994–2011, and who were still alive on 31/12/2011, were abstracted from the National Cancer Registry, and tabulated by cancer site, sex, current age, marital status, initial treatment, and time since diagnosis. Associations were investigated using chi-square tests. After excluding non-melanoma skin cancers, 17-year cancer prevalence in Ireland was 112,610 (females: 58,054 (52%) males: 54,556 (48%)). The four most prevalent cancers among females were breast (26,066), colorectum (6,598), melanoma (4,593) and uterus (3,505) and among males were prostate (23,966), colorectum (8,207), lymphoma (3,236) and melanoma (2,774). At the end of 2011, 39% of female survivors were aged <60 and 35% were ≥70 compared to 25% and 46% of males (p < 0.001). More than half of survivors of bladder, colorectal and prostate cancer were ≥70. Cancers with the highest percentages of younger (<40) survivors were: testis (50%); leukaemia (females: 28%; males: 22%); cervix (20%); and lymphoma (females: 19%; males: 20%). Fewer female (57%) than male (64%) survivors were married but the percentage single was similar (17-18%). More female (25%) than male survivors (18%; p < 0.001) were ≥10 years from diagnosis. Overall, 69% of survivors had undergone cancer-directed surgery, and 39%, 32% and 18% had received radiotherapy, chemotherapy and hormone therapy, respectively. These frequencies were higher among females than males (surgery: 82%, 54%; radiotherapy: 42%, 35%; chemotherapy: 40%, 22%; hormone therapy: 23%, 13%). These results reveal the socio-demographic and clinical heterogeneity of the survivor population, and highlight groups which may have specific medical and supportive care needs. These types of population-based estimates may help decision-makers, planners and service providers to develop follow-up and after-care services to effectively meet survivors’ needs.

Although cancer patients may incur a wide range of cancer-related out-of-pocket costs and experience reduced income, the consequences of this financial burden are poorly understood. We investigated: financial adjustments needed to cope with the cancer-related financial burden; financial distress (defined as a reaction to the state of personal finances); and factors that increase risk of financial difficulties. Two sets of semi-structured face-to-face interviews were conducted with 20 patients with breast, lung and prostate cancer and 21 hospital-based oncology social workers (OSWs) in Ireland, which has a mixed public-private healthcare system. Participants were asked about: strategies to cope with the cancer-related financial burden; the impact of the financial burden on the family budget, other aspects of daily life, and wellbeing. OSWs were also asked about patient groups they thought were more likely to experience financial difficulties. The two interview sets were analysed separately using a thematic approach. Financial adjustments included: using savings; borrowing money; relying on family and friends for direct and indirect financial help; and cutting back on household spending. Financial distress was common. Financial difficulties were more likely for patients who were older or younger, working at diagnosis, lacked social support, had dependent children, had low income or had few savings. These issues often interacted with one another. As has been seen in predominantly publically and predominantly privately-funded healthcare settings, a complex mixed public-private healthcare system does not always provide adequate financial protection post-cancer. Our findings highlight the need for a broader set of metrics to measure the financial impact of cancer (and to assess financial protection in health more generally); these should include: out-of-pocket direct medical and non-medical costs; changes in income; financial adjustments (including financial coping strategies and household consumption patterns); and financial distress. In the interim, cancer patients require financial information and advice intermittently post diagnosis.

Although awareness is increasing that cancer can have an adverse financial and economic impact for patients, the overall burden remains poorly understood. To elucidate these issues, we used qualitative methods to explore the financial impact of a cancer diagnosis in Ireland, which has a mixed public–private healthcare system and where sick leave and sick pay are at employers’ discretion. Face-to-face semi-structured interviews were conducted with hospital-based oncology social workers (OSWs; 21 OSWs from 11 hospitals) and patients (20 from eight hospitals; 11 breast, 5 prostate and 4 lung cancer). Participants were asked about the (1) extra expenses incurred, (2) cancer’s impact on work and income, and (3) accessing financial assistance/social welfare benefits. The two interview sets were analysed separately using thematic analysis. Broad themes that emerged included the wide range of additional cancer-related medical and non-medical expenses incurred by all patients, including those with medical cards (which entitle the bearer to receive health services free of charge) and those with private health insurance; the major impact of cancer and its treatment on work and patient/household income (all patients who were working at diagnosis experienced a drop in income); and difficulties in accessing medical cards and benefits. This study reveals the complex, multidimensional nature of the financial and economic burden cancer imposes on patients and the whole family unit. Changes in income post-cancer exacerbate the effects of cancer-related out-of-pocket expenses. These findings have implications for healthcare professionals, service providers and policy makers.

While the evidence-base concerning the economic impact of cancer for patients and their families/carers has grown in recent years, there is little known about how emotional responses to cancer influence this economic impact. We investigated the economic costs of cancer in the context of patients’ emotions and how these both shaped the patient and family burden. Health professionals from six hospitals invited patients diagnosed with colorectal cancer (ICD10 C18-C20) within the previous year to take part in the study. Semi-structured face-to-face interviews were conducted with patients and, where available, a family member. Interviews covered medical and non-medical costs incurred as a result of cancer and the impact of these on the lives of the patient and their family. Interviews were audio-recorded. Recordings were transcribed verbatim and these data were analysed qualitatively using thematic content analysis. Twenty-two patients with colorectal cancer (17 colon and 5 rectal; 14 women and 8 men) were interviewed; 6 were accompanied by a family member. Important cancer-related financial outlays included: travel and parking associated with hospital appointments; costs of procedures; increased household bills; and new clothing. Cancer impacted on employed individuals’ ability to work and depressed their income. The opportunity cost of informal care for carers/family members, especially immediately post-diagnosis, was a strong theme. All patients spoke of the emotional burden of colorectal cancer and described how this burden could lead to further costs for themselves and their families by limiting work and hindering their ability to efficiently manage their expenses. Some patients also spoke of how economic and emotional burdens could interact with each other. Support from employers, family/carers and the state/health services and patients’ own attitudes influenced this inter-relationship. The economic impact of colorectal cancer on patients and their families is complex. This study suggests that the economic costs and the emotional impact of cancer are often related and can exacerbate each other, but that various factors can meditate this inter-relationship.

Around 40% of cancer survivors are of working age. We investigated employment outcomes among survivors in Ireland where sick leave and sick pay are at the employers’ discretion and the law affords no protection against dismissal following extended absence. A questionnaire was mailed to 1,373 survivors, identified from the National Cancer Registry, 6–24 months post-diagnosis. The analysis included breast and prostate cancer respondents who were working at diagnosis. Factors associated with work continuation post-diagnosis and work resumption after cancer-related absence were identified using logistic regression. The response rate was 54%. Three hundred forty-six respondents were working at diagnosis (breast cancer = 246; prostate cancer = 100). Sixty-two (18%) continued working post-diagnosis. Factors significantly associated with work continuation were: self-employment, prostate cancer, lower pre-diagnosis household income, and not having surgery. Two hundred eighty-four took time off work post-diagnosis; of these, 51 (18%) had left the workforce, 187 (66%) had resumed working, and 46 (16%) planned to resume working. Factors significantly associated with work resumption were: tertiary education, not having chemotherapy, receiving sick pay, and not having a medical card (which provides free access to public health services). Among those who resumed working, the median absence was 30.1 weeks (inter-quartile range = 12.9–51.6). The length of absence varied significantly by socio-demographic, financial, medical, and job- and social welfare-related factors. Median working hours pre- and post-diagnosis differed significantly (pre-diagnosis = 38/week; post-diagnosis = 30/week; p<0.001). The high level of workforce departure and associations between self-employment, sick pay and medical cards, and employment outcomes suggest that social welfare and legal provisions are important determinants of the survivors’ workforce participation. In formulating strategies to optimise survivors’ employment outcomes, it is important that policy- and decision-makers are aware of the influence of social welfare and legal provisions.