The authors have the following interests: A project grant was awarded to the National Cancer Registry from Sanofi-Aventis, 2010-2012, for research on comorbidity in prostate cancer (PI: L Sharp). There are no patents, products in development or marketed products to declare. This does not alter the authors' adherence to all the PLOS ONE policies on sharing data and materials, as detailed online in the guide for authors.
Conceived and designed the experiments: LS AT. Performed the experiments: AT. Analyzed the data: AT. Wrote the manuscript: AT RGH LS. Interpretation of data: AT RGH LS.
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.
There is a growing awareness of the financial impact that cancer can have both on newly diagnosed patients and those living with the condition [
Given the inadequacies of health-related financial protection it seems likely that some cancer patients may have to make financial adjustments to cope with their altered financial situation post-diagnosis. Furthermore, these financial adjustments may result in financial distress, which is defined as a reaction to the state of personal finances [
Similar limitations have been highlighted in the broader area of financial protection in health.
Conventional frameworks for analysis focus on two financial protection indicators relating to the extent to which health payments are “catastrophic” (above a threshold percentage of household equivalent income) or “impoverishing” (pushing a household below the poverty line). Critics of these frameworks suggest that the measures of the consequences of inadequate financial protection are too narrow and are hence likely to underestimate the adverse consequences of inadequate financial protection [
To date, the limited research on the financial impact of cancer has been conducted in countries with either a great reliance on private healthcare and a libertarian ideology (e.g. the USA which also has a small public system for those who can’t pay for private healthcare), or more publically-funded healthcare and an egalitarian ideology (e.g. Canada or the UK, where a small private system also functions) [
Qualitative methods have previously proved valuable for exploring and improving understanding of cancer patients’ experiences [
In Ireland, free publicly-funded healthcare is available to citizens who possess a “medical card”. At the time of the study, medical card eligibility was means-tested (To qualify for a medical card or GP visit card an individual’s weekly income must be below a certain figure for their family size. Cash income, savings, investments and property (except for their own home) are taken into account in the means test) for those aged <70 and universal for those aged ≥70; 30% of the population had a card [
Two groups of subjects were interviewed: people diagnosed with primary breast, prostate or lung cancer and hospital-based oncology social workers (OSWs). OSWs frequently provide patients with advice and assistance regarding financial matters (although this is not formally part of their remit), and so were considered key informants who could contribute expert knowledge of, and valuable insight into, the financial impact of cancer on patients and families. All 24 OSWs who worked with patients with breast, prostate or lung cancer were invited to participate. Patients were eligible if they were: aged ≥18; post-initial treatment; and had reported that they were experiencing “extra costs” or “financial difficulties” because of their cancer to a health professional (i.e. financial difficulties or extra costs were self-defined by patients). Patients receiving palliative care were excluded since their experiences of costs may be substantially different to those of other patients. Breast and prostate cancer are the most commonly diagnosed cancers in females and males respectively and lung cancer is the third most common cancer in both sexes. These cancers provided diversity in the sample and ensured that we could explore the experiences of patients: of both sexes; of varied ages and hence varied family circumstances and employment status; and who had a mixture of prognoses and treatment patterns. Moreover, since lung cancer is inversely related to social class and breast and prostate cancer risk is higher in the higher social classes [
Interviews were conducted in 2007 (OSW interviews: February-March; patient interviews:
August-September).With the exception of two OSW interviews, all were face-to-face and audio-recorded (detailed notes were taken by AT during one face-to-face interview; the other was conducted by telephone and audio-recorded). OSW interviews took place at the individuals’ places of work. Patient interviews took place in a hospital or at a cancer support centre. Interview questions were structured using a topic guide. The OSW topic guide was developed from literature review and the results of analysis of welfare grants provided to patients by the Irish Cancer Society [
Recruitment to each group of subjects ceased once saturation was reached [
Twenty patients treated in 8 hospitals were interviewed (
11 hospitals, and with varying levels of experience, participated. Descriptions of OSWs’ characteristics have been limited to protect their anonymity. Three major themes relating to the changes to the financial situation experienced by patients after a cancer diagnosis were identified: financial adjustments needed (
All of the patients who stopped working after diagnosis or during treatment (
Patients spoke about having to use some or all of any savings to help cope financially although some, particularly those with a low pre-diagnosis income, had few savings. Patients described borrowing money from various sources including banks/credit unions, employers, family and friends. Borrowing was often needed for special occasions (e.g. Christmas). Most patients reported having received some financial help from family, friends and/or work colleagues; this was not always perceived as “borrowing”, but rather as “help that was offered”.
Patients often received other types of indirect financial support from family, friends, neighbours, and colleagues (e.g. driving to hospital appointments, childcare, grocery shopping, cooking meals, housework); these reduced the monetary costs associated with cancer. The security of having supportive family and friends was commonly spoken about; those who had support felt fortunate, but questioned whether it was “right” that they had to rely on this.
Patients reported struggling financially. Difficulties managing the weekly household budget were common. All patients except two (PT02 and PT10 discussed below) had to budget and spend more carefully following diagnosis. Strategies used included cutting back on food shopping; making food last longer; buying second-hand clothes; turning off heating more; socialising less often; not going to the hairdresser; reducing spending on children or “going without” themselves to provide for children; and not taking short breaks or holidays. Patients reliant solely on social welfare benefits experienced difficulties managing on the amount provided (€186/week). Large ongoing expenses (e.g. treatment-related travel costs, household bills) or one-off expenses (e.g. a new bed) were especially difficult for these patients. Some patients (particularly those working at diagnosis whose income fell) found the financial burden most difficult soon after diagnosis, whereas others (particularly those on a low pre-diagnosis income) found it more difficult as time went on.
Some patients applied for means-tested financial assistance. For individual patients who were struggling financially, OSWs routinely applied for one-off welfare grants or financial assistance from charities.
OSWs reported sometimes being asked to help patients who were struggling financially to access financial assistance to help them comply with treatment. Examples included patients who were worried about being able to afford to buy medications or considering stopping treatment because they could not afford it. The OSWs reported that some patients (particularly rural patients living a long way from the treating centre) sometimes had to decide whether they would sit at home worrying rather than going to their GP about side-effects of treatment because of cost, or worry about spending money they couldn’t afford. One OSW described a patient who had postponed treatment until she received a medical card. A number of patients described how stressful hospital bills were while they were waiting for a medical card. None of the patients interviewed reported making treatment decisions based on cost/affordability.
OSWs and patients described the emotional impact of the cancer-related financial impact (i.e. financial distress;
Medical bills, frequent reviews of medical card eligibility, and non-medical costs, in particular travel costs and increased household bills, caused considerable concern and worry for some patients. Patients described “scrimping and saving”, “robbing Peter to pay Paul” and feeling: “terrible”, “miserable”, or “horrible” about finances as well as feeling “like somebody mean” or “a real miser”. They described constantly juggling money to avoid getting into debt and emphasized how worried they were about their financial situation. Some patients who had stopped working during treatment were concerned about managing financially on sick pay and/or benefits. Patients felt that during treatment “their minds should be focussed on making themselves better and not worrying about finances”. OSWs reported that patients were generally uncomfortable with asking for, or accepting help, particularly from charities, and this caused stress and worry. They emphasised patient “vulnerability and how difficult it was for patients “to fight this [obtaining a medical card or benefits] themselves” after a cancer diagnosis. OSWs reported trying to help patients reduce financial stress but noted that because there were so few OSWs they could not help every patient.
As well as being worried about their current situation, patients described worries about the future. These included worries about: not being able to replenish savings used during treatment/illness; implications of using money saved for retirement or children’s education; and paying back financial help received from family, friends, or employers. Younger patients described worrying about making mortgage payments and their future eligibility for mortgages and insurance policies. All patients who had been working at diagnosis expressed work-related concerns including: not feeling well enough to resume working; worry about returning to work or looking for a new job after a long absence; and loss of confidence. Impact of treatment side effects on work ability was a particular worry and cause of stress for patients who had developed lymphodema or nerve damage after surgery and had manual jobs.
OSWs reported that patients in almost any socio-demographic group could experience financial difficulties, depending on their particular circumstances and the support available to them. OSWs identified various possible risk factors for financial difficulties: working at diagnosis; having young children; being a lone parent; not having a medical card; low income pre-diagnosis (earned or through benefits); having no/few savings; having a mortgage; living in remote/rural areas without transport; being ineligible for means-tested benefits; living alone; and lack of family/social support (
In contrast, OSWs reported that various factors could protect patients from financial difficulties post-cancer: receiving inpatient treatment; access to hospital accommodation (e.g. during radiotherapy); supportive family and friends able to provide financial or practical help; receiving full sick pay; and having other financial resources (e.g. savings, private health insurance, illness insurance). Again, combinations of factors meant that some patients did not have to make any financial adjustments. For example, a single breast cancer patient (PT02) received full sick pay, had private health insurance, and obtained a medical card post-diagnosis. A retired married prostate cancer patient (PT10) had surgery, few side-effects, private health insurance, and was eligible for a medical card. Neither of these patients reported any financial distress.
In the Irish mixed public-private healthcare system, we found that patients make a wide range of financial adjustments to cope with out-of-pocket costs and changes in income (financial burden) they experience post-cancer. Using savings, borrowing money (both formal and informal), and adjusting the weekly budget have been reported in a few previous studies in mainly private or mainly public healthcare settings [
It is clear from our study, and qualitative research in the UK and North America [
Clearly in addition to patients’ individual circumstances (e.g. availability of savings/assets, financial support from family/friends) and the financial compensation and protection provided by the public or private components of the healthcare system, the legal and social welfare system where patients live is also important in influencing the financial impact of having cancer. However, despite international variations in healthcare, legal and social welfare systems, our findings add to those from elsewhere [
The need for financial assessment, information, and advice intermittently throughout the cancer journey has been highlighted both in Ireland and the UK [
The use of explorative qualitative methods has improved understanding of the complex financial adjustments cancer patients use to cope with their financial situation and, importantly, the consequences of these (i.e. financial distress). Data of such richness and depth would not have been available using a quantitative approach. While it is not possible to estimate the proportion of cancer patients with financial difficulties that discussed their financial situation with an OSW, the inclusion of 87% of the OSWs in the country who collectively have assisted large numbers of cancer patients over many years, corroborated the information from the patient interviews, and provided valuable additional insight into the predictors of financial adjustments and financial distress. This important “bigger picture” would not have been evident from patient interviews alone. Moreover, our results extend the existing evidence-base on the financial effects of cancer by adding data from a mixed public-private healthcare system. The fact that the healthcare systems in most countries are based on a combination of libertarian (private) and egalitarian (public) ideologies [
Both patients and OSWs reported that some patients need to make financial adjustments in order to cope financially after a cancer diagnosis. A broad range of financial adjustments were reported and included: using savings (if any); formal and informal (from family and friends) borrowing (if available); budgeting very carefully; and cutting back on weekly household spending. Moreover, financial distress is a common outcome of cancer-related out-of-pocket costs, lost income and these financial adjustments. Our findings add to an accumulating evidence-base which implies that the different types of healthcare system (mixed public/private, mainly public, and mainly private) may not provide financial protection for patients and families post-cancer. To advance understanding, and inform development of effective strategies, interventions or policies, there is a need for a broader and more comprehensive set of metrics to measure financial protection in health; these should include consideration of financial adjustments and financial distress. In the meantime, patients and their families should be offered financial information and advice intermittently throughout the cancer journey.
We thank the study participants and the health professionals who helped recruit patients. We are grateful to the members of the project Steering Committee (Harry Comber, Noeleen Donnelly, Joan Kelly, John McCormack, Niamh Ni Chonghaile, Eileen O’Donnell, Olwyn Ryan) for their input, to Frances Drummond and Judith Murhpy for double coding some of the interviews and to Claire O’Callaghan and Grace Buckley for transcription.