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Inter-relationships between the economic and emotional consequences of colorectal cancer for patients and their families: a qualitative study

Inter-relationships between the economic and emotional consequences of colorectal cancer for... Background: 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. Methods: 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. Results: 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. Conclusions: 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. Keywords: Colorectal cancer, Costs & cost analysis, Patients, Caregivers, Social support, Employment * Correspondence: a.oceilleachair@ncri.ie National Cancer Registry Ireland, Cork, Ireland National Cancer Registry, Building 6800, Cork Airport Business Park, Kinsale Road, Cork, Ireland Full list of author information is available at the end of the article © 2012 Ó Céilleachair et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 2 of 10 http://www.biomedcentral.com/1471-230X/12/62 Background issues, such as travel difficulties, emerge more strongly More than one million people are diagnosed with colo- here than in other settings. rectal cancer (CRC) worldwide each year (Parkin, 2005). The disease is responsible for more than half a million Methods deaths annually, mostly in developed countries [1,2]. Setting Due to population ageing in developed countries, num- The public health system in Ireland is available to all but bers of CRC cases are rising and are expected to con- most pay for GP appointments, prescription drugs and tinue rising in the coming years [2,3]. Survival too has make co-payments towards the cost of inpatient stays. been increasing [4]. As a result of these trends more Possession of a medical card covers these costs and co- people are living for longer with the disease. payments. Medical cards are means-tested for people This increase in new cases and survivors has implica- under 70 and, for most of the study period, were univer- tions for health services, patients and their families, and sally available to those aged 70 and older. Cancer society as a whole. The National Cancer Institute esti- patients without a medical card at the time of diagnosis mated that the direct medical, indirect morbidity and in- may apply for a card afterwards on hardship grounds. direct mortality costs of cancer in the United States in The typical cost of a GP appointment is €50. The most 2010 totalled over $260 billion [5]. CRC is thought to commonly-held private PHI plans cost in the region of constitute more than 10% of this burden in the USA [6]. €1,000 per adult per annum and cover hospital in-pa- Emerging evidence from other settings also suggests the tient stays, but not necessarily outpatient or primary health services cost associated with CRC are significant care visits. The maximum co-payment a patient without [7-11]. As more people require treatment and treat- either a medical card or PHI can make for an inpatient ments become more expensive, these costs are likely to stay is €75 per day, up to a maximum of €750 in any 12 increase. Evidence too has emerged, though in lesser consecutive months. Public and private hospitals are quantities, on patient costs. One study estimated that often co-located and movement by patients between the time costs relating to treatment alone over a CRC two is common. Approximately half of the population is patient's lifetime are in excess of $4,500 [12]. To date, covered by PHI, 30% possess a medical card and 27% studies of patient-borne costs have considered time and have neither [24]. travel, out-of-pocket expenses (both medical and non- medical) and employment issues [12-14], although, in most instances, these have been assessed in isolation Subjects from each other, despite the fact that patients may ex- The study was part of a larger programme of work in- perience costs concurrently. Furthermore, much of the vestigating the overall economic impact of colorectal previous research has been performed against the back- cancer. Subjects were recruited from six hospitals which drop of either predominantly publicly-funded [13,15-17] included large Centres of Excellence [23], specialist on- or privately-funded healthcare systems [12,18]. cology units and hospices. Patients were eligible if they Other costs of cancer for patients and their families in- had been diagnosed with a primary, invasive CRC (ICD clude the emotional costs, which may be severe. Patients 10: C18-C20) within the previous 12 months. Sampling and caregivers may experience fear, anxiety, depression was purposive to ensure diversity of age, gender, disease and anger [19-21]. While studies have examined the eco- extent, treatment pathways, residence characteristics nomic and emotional consequences of CRC, to the best (urban or rural) and employment situations. of our knowledge there has been no investigation of the There was no relationship between the investigators inter-relationships between the two. Given the complex and participants before the study began. Clinicians and nature of both of these burdens it is possible that there specialist nurses involved in the care of CRC patients are important dynamics at work which might not be eas- assisted with recruitment by making initial approaches ily detected using quantitative research methods. to potentially eligible individuals. They explained the Using a qualitative approach, we aimed to investigate study and provided an information sheet which the broad spectrum of economic and emotional conse- described the study aims in general terms (i.e. to investi- quences faced by CRC patients, the inter-relationships gate the economic impact of cancer on patients and between these and meditating factors. The setting was their families). Details of those who were potentially Ireland, which is one of the few countries where a uni- interested in taking part were forwarded to the research versal access health system coexists with private health team, one of whom contacted them by post and/or insurance (PHI) and where patients are free to move be- phone to confirm their willingness to be interviewed and tween the two. Moreover, the dispersed nature of the arrange an interview date and location. Where appropri- population [22] in conjunction with the ongoing central- ate, and with the agreement of the patient, the re- isation of cancer services [23] could mean that patient searcher also invited a family member (generally a Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 3 of 10 http://www.biomedcentral.com/1471-230X/12/62 spouse) involved in providing care or support to the pa- each theme were identified across transcripts. A cross- tient (a carer) to be interviewed. comparative approach was taken, referring back and forth between the raw data, the codes and the emerging Interviews themes throughout the process of analysis, in order to Interviews were conducted between August 2007 and confirm and validate conclusions drawn. Information on October 2009. They were face-to-face, took place in a lo- the impact of cancer on carers was provided by both the cation of the participant’s choosing (usually the patient’s carers themselves and also by the patient where the home), and lasted 60–90 minutes. Where present, carers carer was not present. were interviewed alongside the patient. Interviews were Transcripts were not returned to interviewees and conducted by two team members (AOC, CF) who were they were not invited to provide feedback on the study’s already employed as researchers on the programme on findings, though they were offered a summary of the the overall economic impact of cancer. They had both study results. undergone training in qualitative methods and specific- ally in conducting interviews with cancer patients (Clin- Ethical approval ical Research Collaboration Cymru training programme). Approval for the study was obtained from the research Before the interview, participants were given another ethics committees covering the six hospitals from which chance to review the information sheet and ask any subjects were recruited, namely: Our Lady’s Hospice questions they might have. They then provided signed Harold’s Cross Research Ethics Committee; the Clinical informed consent. Research Ethics Committee of the Cork Teaching Hospi- Interviews were semi-structured around a topic guide. tals (for Cork University Hospital and Mercy University This guide was informed by literature review, discus- Hospital); St Luke's Hospital Research Management sions with health professionals, a brainstorming session Committee; St Vincent’s Healthcare Group Ethics and with a national bowel cancer support group and semi- Medical Research Committee; and Galway Research Eth- structured interviews with hospital-based oncology so- ics Committee (site specific approval for University Col- cial workers that were conducted for a parallel study in- lege Hospital Galway). volving patients with other cancers [25]. The topic guide covered: the socio-demographic characteristics of the pa- tient and their family; the patients’ care pathway; the Results economic consequences of cancer for patients and their Characteristics of participants family/carers; and the emotional impact of cancer. In total, 22 patients and 6 carers (4 spouses and 2 No repeat interviews were conducted. The inter- daughters) were interviewed. Patients’ characteristics are viewers liaised at several points during the course of the shown in Table 1. They ranged in age from 44 to 82; 17 fieldwork to discuss data saturation. Recruitment ceased had been diagnosed with colon cancer and 5 with rectal once new themes/issues stopped emerging. cancer; 14 were women and 8 men; 13 lived in urban areas while 9 were from more rural parts of the country. Analysis With the participants’ consent, interviews were recorded Themes and transcribed verbatim. Written notes of participants The major themes that emerged from the interviews were also taken by the researchers during interviews. An were: out-of-pocket costs (both medical and non-med- experienced qualitative researcher (LC) undertook the ical), “making ends meet” (i.e. managing financially), the analysis. This was a phenomenological study, in which role of family and friends, services and entitlements, and emphasis was placed on the subjective meaning for indi- emotional costs (Figure 1). viduals surrounding their experience [26], with the aim of exploring, in detail, how participants made sense of their personal and social world [27]. A thematic content Out-of-pocket costs analysis was conducted. All themes were derived from Most respondents had a medical card, PHI, or (in some the data and not determined in advance. Interviews were instances) both, and were largely satisfied with the cover coded and analysed manually, to facilitate an iterative these provided. None of those with a medical card approach, keeping track of individual experience, and reported any costs relating directly to their hospital care, how different factors and themes impact on this experi- GP visits or prescription items. However, some patients ence. Recordings and transcripts were listened to and with PHI found themselves having to pay substantial read repeatedly. Codes and themes were identified amounts for outpatient appointments and for proce- through these repeat readings and review of the tran- dures/tests. In some cases the type and extent of these scripts. Converging and diverging representations of costs was an unwelcome surprise. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 4 of 10 http://www.biomedcentral.com/1471-230X/12/62 Table 1 Participant characteristics the difficulties they experienced in using public trans- VARIABLE GROUPING N port, especially because of journey length or treatment side-effects. Cancer site Colon: 17 Rectal: 5 [It took] at least an hour, yeah. ... It [the bus] leaves Age less than 50 years: 2 at ten to nine, oh more than an hour. It would be 50-59 years: 2 nearly two. Around 11 [o’clock] you get there, with all 60-69 years: 12 the stops and stuff (Pt020). 70 and older: 6 Sex female: 14 Interviewees appreciated the efforts of some hospitals male: 8 to provide free transport and/or parking. However the Area of residence urban:13 limitations of such schemes (scarcity in the case of park- rural: 9 ing and journey length in the case of free transport) sometimes rendered them functionally useless because Medical card at time of interview yes: 16 patients were so frail. no: 6 Private health insurance at diagnosis yes: 9 They’d provide me with transport if I wanted. ... You no: 13 could be two or three hours driving. And you wouldn’t Employment status at diagnosis retired: 13 be able for that, you know? (Pt037). working: 8 unemployed: 1 Some respondents had increased utility bills following Received sick-pay from employer yes: 6 diagnosis, particularly for the telephone and heating. no: 2 They noted that this was because they were at home not applicable: 14 more and because (neo)adjuvant therapies could make them more susceptible to feeling cold. For some, these Marital status married: 13 extra costs caused real hardship. single: 3 divorced: 1 Our bills last year.. .were €370. He was so cold. .. . widow(er): 4 [It’s] gas and we would have .. . lighting as well. ... cohabiting: 1 And the heating on as well. .. .Oh God it [The cost] ‘Urban’ includes those residing in cities; ‘rural’ includes all other patients 2 was dreadful. Really dreadful (Spouse of PT007). One participant had neither health insurance nor a medical card. Other household expenses, such as home alterations required because of limitations in mobility following That’s the number of visits we have – eight visits treatment (for example, one family had to build a down- altogether. Eight visits to consultants and that would stairs extension as the patient could no longer manage have come to a cost of €960 and the insurance paid the stairs), could be very high, but were incurred by few €640 of that (Pt019). patients. Almost all patients described how treatment- I had probably three or four ultrasounds and scans. related changes in their bodies, such as weight loss, and/ €200 a pop (Pt004). or accommodating a stoma made it necessary for them to buy new clothes. The associated costs ranged from in- Those without medical cards noted that regular post- cidental to burdensome (when an entirely new wardrobe treatment GP visits constituted a substantial ongoing was required). cost. Some also paid the full contribution of €85 per month to a publicly-subsidised prescription drug scheme Making ends meets when purchasing supportive medications. Several items Eight interviewees were working at diagnosis. Six of had to be paid for in full by all respondents, most com- these interviewees received some sick pay from their monly over-the-counter painkillers and mouthwash for employers and all were very appreciative of employer chemotherapy-induced ulcers. These were not regarded understanding, both in terms of time off and sick pay as significant expenses by patients. provision. Despite this support, all employed participants, Travel costs to and from the hospital for treatment including those who received sick pay, noted a drop in were important for all interviewees, especially so for income post-diagnosis; in some cases the drop was sub- those who had chemotherapy and/or radiotherapy, be- stantial. This was particularly so in situations where an cause this required more hospital visits. Some spoke of individual had to retire early or work fewer hours. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 5 of 10 http://www.biomedcentral.com/1471-230X/12/62 friends in keeping their business going. One described how his son took annual leave to help on the farm fol- lowing the initial diagnosis while ongoing support was provided by his wife and a neighbour. Those who took time off work were anxious to return as soon as possible. Being on a reduced income was keenly felt. One interviewee sought to bring forward his surgery so that he could get back to work sooner. I said [to the consultant] ‘I’m not worried about the cancer .. . however, I do have a financial concern.’ Because he was saying ‘If I can’t get you an early December [surgery date] .. . we’ll leave it until January or maybe February.’ So more months waiting, more months on half pay. So he said ‘I’ll definitely get you in regardless, by early December’ (Pt012). For those not working at diagnosis, the financial and economic impact of cancer was even more pronounced; Figure 1 Themes arising from interviews with patients and carers. these individuals generally had smaller pre-diagnosis incomes and cancer-related costs could have a severe So I have stopped working in the afternoon. .. . I impact, reducing their means considerably. One patient reckon I lost €4,000. You know eight months at about described how the high cost of hospital parking meant €500 (Pt015). that she could not afford a cup of tea in the canteen. Another noted: Two respondents who were working at diagnosis retired immediately. Both were unhappy with having to And then we’d have to be getting coffees and that up leave work but felt compelled to do so. there [the hospital] sometimes and a sandwich, you know .. . So it cost a pretty packet (PT034). I worked in childcare. I was in the running of a pre- school. .. . I had to give it up. I didn’t have to but I Some described having to cut back on spending to felt, I was advised there was a risk of infection with make ends meet. Some used their savings, and found small children. .. . And then – it’s a very physical job. that savings accumulated over years could be exhausted They all need lifting (Pt025). very quickly. Some carers also took time off work following the Well I just had a bit of money put by. It wasn’t diagnosis. For some, this leave was unpaid or had to be much.. . Take €50 from it. .. . Take [another] €50 and taken as part of holiday entitlements. In one instance, it would be gone then before you knew where you were where the patient was receiving palliative care, his (Pt007). daughter left her job to become his full-time carer. A few interviewees were self-employed and a cancer Savings could also function as a buffer allowing fam- diagnosis could be especially challenging for them. Gen- ilies to maintain their standard of living in the face of erally, these individuals felt pressure to continue working increased expenditure and/or reduced income. regardless of their health, even though it might be diffi- cult to cope. One entrepreneur described how his diag- I would've been in a bad way, I’d say, if I hadn’t have nosis nearly caused his business to fold. had them savings behind. We can live the lifestyle we’re used to because of those savings. .. . Imean But ...I had got behind...obviously sending out they’re dwindling now but, thank God I had them accounts.. ..I was only half functioning and it took a (Pt034). while and that’s where I got in trouble you know (Pt004). The role of family and friends All patients received some practical support from fam- Those in other areas of self-employment such as farm- ilies and/or friends. This took many forms including ing were able to draw on the support of family and help at home or with travel; support in the form of Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 6 of 10 http://www.biomedcentral.com/1471-230X/12/62 regular visits while the patient was in hospital/convales- for a medical card unduly arduous and embarrassing. cing; or financial assistance. Some patients came to rely Such feelings were shared by those who had been suc- on this support, especially with respect to travelling to cessful in their application and those who had not. and from hospital. Emotional support was also provided. Patients noted that a carer could sometime have a great It [the medical card] was a bit hard to get. .. . Very, impact on their wellbeing through the security provided very hard. .. . They [the community welfare officers by knowing that they (the carer) were there if needed. who adjudicate on applications] really humiliate you. Patients were very appreciative of the practical and emo- It’s horrible (spouse of Pt007). tional support they received. Some poor experiences resulted from conflicting or They [ my sons and daughters] organised a kind of a confusing information about entitlements. roster. .. . So that there would be somebody in hand. As it happened when I got out after the blockage I have a friend working in the Health Board ..... I problem, my wife took sick herself. She got a blessed remember at the time she had said to me that I should virus which really debilitated her and again the family be entitled to a temporary medical card. . .. . When I had to organise and cook lunch or dinner for us, you went about it, I got a very negative kind of reaction. know. (PT026). And I was told “no” (Pt016). my daughter is in Y. And she works up here in X. And she loops around to make sure [I’m ok].. .if one of Patients’ attitudes affected the way in which they them isn’t checking on me the other one is. I am well engaged with services. One participant had, based on minded (PT009). personal experiences, a negative opinion regarding bene- I’d be lost without [my daughter]. (PT034). fits of any kind and did not seek support even where he knew it was available. The role of family and friends in providing support was most pronounced for older respondents, especially You’ve only gurriers and gougers living around here. where infirmity meant the patient’s spouse was unable to They’re drunk seven days a week and work is a dirty provide help. In contrast, there was also a strong sense word. And yet I don’t know how I missed out on it [A among older patients that they needed to preserve their perceived easy life on benefits]. St. Vincent de Paul is independence. sending them to Wales for the summer. Not for two weeks, three weeks and where does PT007 go? (PT007). I’d say “I’m fine” and then my neighbour next door, she would insist on driving me in [to the hospital]. It was Others viewed benefits as entitlements following a life- driving me mad because I only had to go to the end of time of social insurance contributions and were comfort- the hill to get the bus.... But I was fine and it’s nice to able accessing services or applying for benefits. One have a bit of independence. (Pt009). patient spoke of an active process of informing herself. Patients were mindful that the support they received I’m very good about whatever is there .......all the often protected them from a whole range of expenses services are there and you would be a fool if you didn’t that they would otherwise have had to bear. In some [take them up] (PT009). instances, they described how the support meant they could preserve their savings. All agreed that without this The emotional impact of colorectal cancer support their situation would have been much more All patients spoke about the emotional cost of CRC challenging. for them and their families. Even where economic issues were not a cause of worry in and of themselves, the Services & entitlements emotional consequences took their toll. In the main, patients were knowledgeable about the vari- ous potential supports that might be available to them Financially, I had a good packet in the job, you know, within the health and social welfare system, such as the so I’m not destitute by any stretch of the imagination. drug payment scheme or medical cards. This awareness But I mean in terms of emotional stress and strains, came from a number of sources including health care stuff like that, this illness has cost us (PT034). providers and prior knowledge. Patients who were taking advantage of these services were quite happy with the Accessing health and social services could also cover provided. However, a number of difficulties were cause emotional strain, because of unhelpful or in- described. Some patients found the process of applying sensitive staff, or due to the specific circumstances or Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 7 of 10 http://www.biomedcentral.com/1471-230X/12/62 requirements. For example, one patient was, unexpect- It could have been more [money spent] .. . See, I never edly, required to pay for scans before the results would kept notes. .. . See, I usually keep notes but I was so ill be released. She described feeling threatened by this. for him, that my mind.. . [was not as focused] Some patients described how a lack of public know- (PT007). ledge or understanding of CRC could lead to social em- barrassment. One patient described taking the bus home Discussion after chemotherapy: Our patients covered a range of ages, disease stages, care journeys, personal circumstances and socio-economic And I asked the bus driver would he close the door. backgrounds. Colorectal cancer affects men and women Oh God. He turned around to the rest of the bus [and in approximately equal measure; therefore we were able said] ‘This lady wants to close the door and we’re all to ensure that gender perspectives on cancer and its eco- dying with the heat, she says she’s cold.’ .. . Oh God. nomic and emotional impacts were considered. Our sam- And I just wanted to explain ‘I’m not just cold, I’m ple included several people whose cancer was no longer sick.’ (PT025). curable (, though none was at the very end of life). The issues faced by these patients were not fundamentally dif- For families too, the emotional impact of cancer could ferent to those of other patients who were cancer-free. be significant. Often family members or carers had other The inclusion of carers and family members in our study stressors in their lives (such as pregnancy and moving added their perspective to that of patients and provided house) and the cancer diagnosis represented an added more insight into the experiences of patients themselves. emotional burden. Usually, carers’ perspectives are investigated separately from that of patients [12,15,16,18,19,28,29]. Markman et It’s putting more pressure on them[family members or al (2010) [30] did explore cancer-related out-of-pocket carers] and they are worried about you and everything costs from the perspective of the family as a whole but else (Pt009). this study did not consider the multi-dimensional na- ture of the economic impact of the disease. The qualita- Interviewees described how the economic and emo- tive nature of our study allowed us to extend the tional impacts of cancer were inter-related, both posi- existing body of evidence on “costs” of cancer (in its tively and negatively. One patient felt compelled to retire widest sense) and explore both economic and emotional early from employment and was left with a deep sense costs, how these interact, and how patient and family of injustice about this. Another, who was successful in experiences, attitudes, and external supports influence applying for a medical card, described the difference this them. These issues would be unlikely to emerge from a made to her emotional wellbeing. quantitative study. In recent years, a consensus has begun to emerge I got ill just after I retired. .. . It wasn’t fair. Because regarding the core components of the economic burden all I done all my life was work, from the time I was of cancer for patients and their families [13,30,31]. Can- eleven years old. In those days you didn’t pay tax or cer-related expenses may include treatment costs (par- PRSI (Pt007). ticularly in private healthcare systems), treatment-related That was such a blessing to get that medical card travel and parking costs, household costs, and personal because it took [away] an awful lot of pressure and care costs (such as clothing). However, much of the pre- worry. (Pt025). vious literature pertains to breast and prostate cancer; CRC has been relatively under investigated. The age and In addition, the emotional strain could cause new eco- socio-economic distribution of CRC differs from breast nomic concerns, on top of those resulting directly from the and prostate cancer and treatment patterns differ [32], cancer diagnosis. In one instance a spouse who had already making it possible that the nature of costs and their im- taken annual leave to be with her husband around the time pact on patients will differ. In fact, our findings were of his diagnosis and treatment was forced to take more largely consistent with the literature, suggesting that, at leave as a result of the emotional strain she had endured. least in part, the mere fact of having a cancer is what impacts on patients economically, irrespective of the She was quite upset. So she took that day completely type of cancer. Furthermore, it is worth noting that pri- off work. And there was scattered days she took off, you vate health insurance did not provide any protection know (Pt012). from non-medical costs; all patients we interviewed bore such costs. For others, the stress that cancer caused meant they Although economic costs are important in and of were less able to keep track of day-to-day spending. themselves, the interplay between these costs and the Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 8 of 10 http://www.biomedcentral.com/1471-230X/12/62 Figure 2 Conceptual model of interrelationship between economic and emotional consequences and mediating factors. emotional toll of CRC upon patients and their families is importance. Our results would suggest that patients of equal importance. It is clear from this study and experience these issues not just in directly monetary others that cancer causes emotional strain for patients terms but in relation to how they impact on their own and their families [31,33]. Moreover, some have shown lives and those of their families. that financial distress in cancer patients can also cause Sick pay has previously been shown to be an import- emotional difficulties [34,35]. Our study suggests that ant determinant of work resumption post-cancer in Ire- this is a two-way relationship (see Figure 2). Not only land [36]. This study reveals that it is an important can economic strain cause emotional distress, the emo- mediator of the economic-emotional impact of the dis- tional toll of colorectal cancer has the potential to influ- ease. With adequate sick pay, the loss of income was ence the economic situation of the patient and caregiver greatly reduced and this in turn meant that patients wor- beyond the effect of the diagnosis itself. This gives rise ried less about their financial situation; hence financial to a situation where a family could face a direct eco- stress was not added to the stress due to the cancer nomic loss from cancer that was exacerbated by further diagnosis and could not exacerbate any existing eco- economic losses relating to their emotional state follow- nomic issues for the patient. On the other hand, in some ing diagnosis. This in turn could cause yet more emo- instances, the consequences of being absent from work tional problems. This negative feedback between with inadequate sick pay were such that they influenced economic and emotional consequences of cancer has the treatment decisions. This finding is consistent with the potential to make difficult situations even worse. existing literature [37,38]. Our findings further suggest that the factors that The availability of familial support can also impact on can exacerbate, alleviate, moderate or prevent this the emotional-economic strain for patients [39]. Using negative feedback loop are multi-faceted. The patient’s qualitative methods, Bradley et al [31] examined the role employment circumstances and income are of major of family and friends in providing economic support, but Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 9 of 10 http://www.biomedcentral.com/1471-230X/12/62 did not consider the wider implications of this support and Our Lady’s Hospice, Harold’s Cross. We also thank the clerical support staff at the National Cancer Registry who transcribed the audio recordings of on patient wellbeing. In our study, patients frequently the interviews. Finally, we would like to thank the patients and their families spoke at great length about the things that family and and friends who took the time and effort to speak to us about their friends had done to improve their lives, or to show that experiences. they cared, or to help out financially. This meant that, Author details 1 2 through the attention of family/friends, patients often National Cancer Registry Ireland, Cork, Ireland. National Economic and avoided a great degree of economic outlay and emo- Social Council, Parnell Square, Dublin 1, Ireland. School of Public Health, Physiotherapy & Population Science, University College Dublin, Dublin, tional strain. The importance of support provided by Ireland. School of Economics and Geary Institute, University College Dublin, family in this study is consistent with findings of another Dublin, Ireland. School of Nursing, Dublin City University, Dublin, Ireland. Irish study of breast, prostate and lung cancer patients National Cancer Registry, Building 6800, Cork Airport Business Park, Kinsale Road, Cork, Ireland. [25] and may reflect strong family cohesion in Ireland [40] compared to other countries in northern Europe. Authors’ contributions Further research would be valuable in clarifying whether AÓC developed the topic guide, liaised with clinical and nursing staff, the role of family support is as strong in other settings. arranged and conducted the patient interviews. He contributed to the analysis of the interview transcripts and drafted the paper.CF liaised with Patients themselves could influence the cycle of eco- clinical and nursing staff, arranged and conducted patient interviews and nomic and emotional strain by engaging with available commented critically on the paper. LC contributed to the analysis and health and social welfare services. A small number of interpretation of the interview transcripts and commented critically on the paper. AT contributed to design and implementation of the study methods, patients had received conflicting or wrong information development of the topic guide, and commented critically on the paper. PF on their entitlement to supports, especially medical contributed to design and implementation of the study methods and cards. This often led to confusion and embarrassment commented critically on paper. KK contributed to design and implementation of the study methods and commented critically on the for patients when they were informed that their applica- paper. AS contributed to design and implementation of the study and tion for support had failed. Evidence from the UK sug- commented critically on the paper. LS contributed to design and gests that benefits available to cancer patients often go implementation of the study, the development of the topic guide, analysis and interpretation of the interview transcripts, and assisted with writing the unclaimed [34], meaning that patients and their families paper. All authors read and approved the final manuscript. are assuming unnecessary burdens. This observation, to- gether with our findings, suggests that more and better Received: 24 June 2011 Accepted: 7 June 2012 Published: 7 June 2012 communication with cancer patients regarding their entitlements is needed. There is also a need to provide References this information in a way that avoids triggering issues 1. American Cancer Society: Global Cancer Facts & Figures. Atlanta: American around benefits that can prevent people from claiming Cancer Society; 2007. 2. Verdecchia A, Francisci S, Brenner H, Gatta G, Micheli A, Mangone L, these even when entitled (such as stigma) [41]. Kunkler I, EUROCARE-4 Working Group: Recent cancer survival in Europe: a 2000–02 period analysis of EUROCARE-4 data. Lancet Oncol 2007, 8(9):784–796. Conclusions 3. Comber H, Walsh P: Patterns Of Care And Survival Of Cancer Patients In Our study shows that the economic impact of colorectal Ireland 1994 To 2004. Cork: National Cancer Registry; 2008. cancer for patients and their families is complex and 4. Verdecchia A, Santaquilani M, Sant M: Survival for cancer patients in Europe. Ann Ist Super Sanita 2009, 45(3):315–324. suggest that there is a strong inter-relationship between 5. American Cancer Society: Cancer Facts & Figures. Atlanta: American Cancer the economic and emotional impact of the disease. Sup- Society; 2007. port from the family, workplace and state/health ser- 6. Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML: Projections of the cost of cancer care in the United States: 2010–2020. J Natl Cancer Inst vices, and patients’ own attitudes can interrupt this 2011, 103(2):117–128. negative cycle, allowing patients and families to cope 7. Bending MW, Trueman P, Lowson KV, Pilgrim H, Tappenden P, Chilcott J, better with what is already an incredibly challenging Tappenden J, Aalto P: Estimating the direct costs of bowel cancer services provided by the National Health Service in England. Int J Technol time in their lives. Further studies are needed to confirm Assess Health Care 2010, 26(4):362–369. these findings in other health and social welfare settings. 8. Mcafee DA, West J, Scholefield JH, Whynes DK: Hospital costs of colorectal cancer care. Clin Med Oncol 2009, 20(3):27–37. Abbreviations 9. Yabroff KR, Warren JL, Schrag D, Mariotto A, Meekins A, Topor M, Brown ML: CRC: Colorectal cancer; PHI: Private health insurance. Comparison of approaches for estimating incidence costs of care for colorectal cancer patients. Med Care 2009, 47(7 Suppl 1):S56–S63. Competing interests 10. Clerc L, Jooste V, Lejeune C, Schmitt B, Arveux P, Quantin C, Faivre J, The authors have no competing interests. Bouvier AM: Cost of care of colorectal cancers according to health care patterns and stage at diagnosis in France. Eur J Health Econ 2008, Acknowledgements 9(4):361–367. This study was funded by the Health Research Board as part of a research 11. Paramore L, Thomas S, Knopf KB, Cragin LS, Fraeman KH: Estimating costs programme examining the economic impact of cancer in Ireland. of care for patients with newly diagnosed metastatic colorectal cancer. The authors would like to thank all those who facilitated and contributed to Clin Colorectal Cancer 2006, 6(1):52–58. the interviews process. including the clinical and nursing staff at St. Vincent’s 12. Yabroff KR, Warren JL, Knopf K, Davis WW, Brown ML: Estimating University Hospital, Dublin; Cork University Hospital; University College patient time costs associated with colorectal cancer care. Med Care Hospital, Galway; Mercy University Hospital, Cork; St. Luke’s Hospital, Rathgar 2005, 43(7):640–648. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 10 of 10 http://www.biomedcentral.com/1471-230X/12/62 13. Longo CJ, Deber R, Fitch M, Williams AP, D'Souza D: An examination of 38. McFarlane J, Riggins J, Smith TJ: SPIKE$: a six-step protocol for cancer patients' monthly 'out-of-pocket' costs in Ontaria, Canada. Eur J delivering bad news about the cost of medical care. J Clin Oncol 2008, Cancer Care 2007, 16(6):500–507. 26(25):4200–4204. 14. 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Eurostat: Eurostat regional yearbook 2010. Luxembourg: Publications Office of the European Union; 2010. 23. The National Cancer Forum: A Strategy for Cancer Control In Ireland. Dublin: Department of Health & Children; 2006. 24. Central Statistics Office: Health Status & Health Service Utilisation. Cork: The Stationery Office; 2008. 25. Sharp L, Timmons A: The Financial Impact of a Cancer Diagnosis. Cork: National Cancer Registry; 2010. 26. Creswell JW, Maietta RC: Qualitative Research.In Handbook of social research. Edited by Miller DC, Salkind NJ. Thousand Oaks, California: Sage; 27. Smith JA, Osborn M: Interpretative Phenomenological Analysis.In Qualitative psychology: A practical guide to methods. Edited by Smith JA. London: Sage; 2008. 28. Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M: Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist 2010, 15(8):883–893. 29. 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Moffatt S, Noble E, Exley C: "Done more for me in a fortnight than Submit your next manuscript to BioMed Central anybody done in all me life." How welfare rights advice can help people and take full advantage of: with cancer. BMC Health Serv Res 2010, 3(10). 35. Sharp L, Carsin AE, Timmons A: Associations between cancer-related financial stress and strain and psychological wellbeing among • Convenient online submission individuals living with cancer. Psychooncology, . in press. • Thorough peer review 36. Sharp L, Timmons A: Social welfare and legal constraints associated with • No space constraints or color figure charges work among breast and prostate cancer survivors: Experiences from Ireland. J Cancer Surviv, . in press. • Immediate publication on acceptance 37. Hofstatter EW: Understanding patient perspectives on communication • Inclusion in PubMed, CAS, Scopus and Google Scholar about the cost of cancer care: a review of the literature. 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Inter-relationships between the economic and emotional consequences of colorectal cancer for patients and their families: a qualitative study

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Springer Journals
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Copyright © 2012 by Ó Céilleachair et al.; licensee BioMed Central Ltd.
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Medicine & Public Health; Gastroenterology; Internal Medicine; Hepatology
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1471-230X
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10.1186/1471-230X-12-62
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22676509
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Abstract

Background: 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. Methods: 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. Results: 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. Conclusions: 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. Keywords: Colorectal cancer, Costs & cost analysis, Patients, Caregivers, Social support, Employment * Correspondence: a.oceilleachair@ncri.ie National Cancer Registry Ireland, Cork, Ireland National Cancer Registry, Building 6800, Cork Airport Business Park, Kinsale Road, Cork, Ireland Full list of author information is available at the end of the article © 2012 Ó Céilleachair et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 2 of 10 http://www.biomedcentral.com/1471-230X/12/62 Background issues, such as travel difficulties, emerge more strongly More than one million people are diagnosed with colo- here than in other settings. rectal cancer (CRC) worldwide each year (Parkin, 2005). The disease is responsible for more than half a million Methods deaths annually, mostly in developed countries [1,2]. Setting Due to population ageing in developed countries, num- The public health system in Ireland is available to all but bers of CRC cases are rising and are expected to con- most pay for GP appointments, prescription drugs and tinue rising in the coming years [2,3]. Survival too has make co-payments towards the cost of inpatient stays. been increasing [4]. As a result of these trends more Possession of a medical card covers these costs and co- people are living for longer with the disease. payments. Medical cards are means-tested for people This increase in new cases and survivors has implica- under 70 and, for most of the study period, were univer- tions for health services, patients and their families, and sally available to those aged 70 and older. Cancer society as a whole. The National Cancer Institute esti- patients without a medical card at the time of diagnosis mated that the direct medical, indirect morbidity and in- may apply for a card afterwards on hardship grounds. direct mortality costs of cancer in the United States in The typical cost of a GP appointment is €50. The most 2010 totalled over $260 billion [5]. CRC is thought to commonly-held private PHI plans cost in the region of constitute more than 10% of this burden in the USA [6]. €1,000 per adult per annum and cover hospital in-pa- Emerging evidence from other settings also suggests the tient stays, but not necessarily outpatient or primary health services cost associated with CRC are significant care visits. The maximum co-payment a patient without [7-11]. As more people require treatment and treat- either a medical card or PHI can make for an inpatient ments become more expensive, these costs are likely to stay is €75 per day, up to a maximum of €750 in any 12 increase. Evidence too has emerged, though in lesser consecutive months. Public and private hospitals are quantities, on patient costs. One study estimated that often co-located and movement by patients between the time costs relating to treatment alone over a CRC two is common. Approximately half of the population is patient's lifetime are in excess of $4,500 [12]. To date, covered by PHI, 30% possess a medical card and 27% studies of patient-borne costs have considered time and have neither [24]. travel, out-of-pocket expenses (both medical and non- medical) and employment issues [12-14], although, in most instances, these have been assessed in isolation Subjects from each other, despite the fact that patients may ex- The study was part of a larger programme of work in- perience costs concurrently. Furthermore, much of the vestigating the overall economic impact of colorectal previous research has been performed against the back- cancer. Subjects were recruited from six hospitals which drop of either predominantly publicly-funded [13,15-17] included large Centres of Excellence [23], specialist on- or privately-funded healthcare systems [12,18]. cology units and hospices. Patients were eligible if they Other costs of cancer for patients and their families in- had been diagnosed with a primary, invasive CRC (ICD clude the emotional costs, which may be severe. Patients 10: C18-C20) within the previous 12 months. Sampling and caregivers may experience fear, anxiety, depression was purposive to ensure diversity of age, gender, disease and anger [19-21]. While studies have examined the eco- extent, treatment pathways, residence characteristics nomic and emotional consequences of CRC, to the best (urban or rural) and employment situations. of our knowledge there has been no investigation of the There was no relationship between the investigators inter-relationships between the two. Given the complex and participants before the study began. Clinicians and nature of both of these burdens it is possible that there specialist nurses involved in the care of CRC patients are important dynamics at work which might not be eas- assisted with recruitment by making initial approaches ily detected using quantitative research methods. to potentially eligible individuals. They explained the Using a qualitative approach, we aimed to investigate study and provided an information sheet which the broad spectrum of economic and emotional conse- described the study aims in general terms (i.e. to investi- quences faced by CRC patients, the inter-relationships gate the economic impact of cancer on patients and between these and meditating factors. The setting was their families). Details of those who were potentially Ireland, which is one of the few countries where a uni- interested in taking part were forwarded to the research versal access health system coexists with private health team, one of whom contacted them by post and/or insurance (PHI) and where patients are free to move be- phone to confirm their willingness to be interviewed and tween the two. Moreover, the dispersed nature of the arrange an interview date and location. Where appropri- population [22] in conjunction with the ongoing central- ate, and with the agreement of the patient, the re- isation of cancer services [23] could mean that patient searcher also invited a family member (generally a Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 3 of 10 http://www.biomedcentral.com/1471-230X/12/62 spouse) involved in providing care or support to the pa- each theme were identified across transcripts. A cross- tient (a carer) to be interviewed. comparative approach was taken, referring back and forth between the raw data, the codes and the emerging Interviews themes throughout the process of analysis, in order to Interviews were conducted between August 2007 and confirm and validate conclusions drawn. Information on October 2009. They were face-to-face, took place in a lo- the impact of cancer on carers was provided by both the cation of the participant’s choosing (usually the patient’s carers themselves and also by the patient where the home), and lasted 60–90 minutes. Where present, carers carer was not present. were interviewed alongside the patient. Interviews were Transcripts were not returned to interviewees and conducted by two team members (AOC, CF) who were they were not invited to provide feedback on the study’s already employed as researchers on the programme on findings, though they were offered a summary of the the overall economic impact of cancer. They had both study results. undergone training in qualitative methods and specific- ally in conducting interviews with cancer patients (Clin- Ethical approval ical Research Collaboration Cymru training programme). Approval for the study was obtained from the research Before the interview, participants were given another ethics committees covering the six hospitals from which chance to review the information sheet and ask any subjects were recruited, namely: Our Lady’s Hospice questions they might have. They then provided signed Harold’s Cross Research Ethics Committee; the Clinical informed consent. Research Ethics Committee of the Cork Teaching Hospi- Interviews were semi-structured around a topic guide. tals (for Cork University Hospital and Mercy University This guide was informed by literature review, discus- Hospital); St Luke's Hospital Research Management sions with health professionals, a brainstorming session Committee; St Vincent’s Healthcare Group Ethics and with a national bowel cancer support group and semi- Medical Research Committee; and Galway Research Eth- structured interviews with hospital-based oncology so- ics Committee (site specific approval for University Col- cial workers that were conducted for a parallel study in- lege Hospital Galway). volving patients with other cancers [25]. The topic guide covered: the socio-demographic characteristics of the pa- tient and their family; the patients’ care pathway; the Results economic consequences of cancer for patients and their Characteristics of participants family/carers; and the emotional impact of cancer. In total, 22 patients and 6 carers (4 spouses and 2 No repeat interviews were conducted. The inter- daughters) were interviewed. Patients’ characteristics are viewers liaised at several points during the course of the shown in Table 1. They ranged in age from 44 to 82; 17 fieldwork to discuss data saturation. Recruitment ceased had been diagnosed with colon cancer and 5 with rectal once new themes/issues stopped emerging. cancer; 14 were women and 8 men; 13 lived in urban areas while 9 were from more rural parts of the country. Analysis With the participants’ consent, interviews were recorded Themes and transcribed verbatim. Written notes of participants The major themes that emerged from the interviews were also taken by the researchers during interviews. An were: out-of-pocket costs (both medical and non-med- experienced qualitative researcher (LC) undertook the ical), “making ends meet” (i.e. managing financially), the analysis. This was a phenomenological study, in which role of family and friends, services and entitlements, and emphasis was placed on the subjective meaning for indi- emotional costs (Figure 1). viduals surrounding their experience [26], with the aim of exploring, in detail, how participants made sense of their personal and social world [27]. A thematic content Out-of-pocket costs analysis was conducted. All themes were derived from Most respondents had a medical card, PHI, or (in some the data and not determined in advance. Interviews were instances) both, and were largely satisfied with the cover coded and analysed manually, to facilitate an iterative these provided. None of those with a medical card approach, keeping track of individual experience, and reported any costs relating directly to their hospital care, how different factors and themes impact on this experi- GP visits or prescription items. However, some patients ence. Recordings and transcripts were listened to and with PHI found themselves having to pay substantial read repeatedly. Codes and themes were identified amounts for outpatient appointments and for proce- through these repeat readings and review of the tran- dures/tests. In some cases the type and extent of these scripts. Converging and diverging representations of costs was an unwelcome surprise. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 4 of 10 http://www.biomedcentral.com/1471-230X/12/62 Table 1 Participant characteristics the difficulties they experienced in using public trans- VARIABLE GROUPING N port, especially because of journey length or treatment side-effects. Cancer site Colon: 17 Rectal: 5 [It took] at least an hour, yeah. ... It [the bus] leaves Age less than 50 years: 2 at ten to nine, oh more than an hour. It would be 50-59 years: 2 nearly two. Around 11 [o’clock] you get there, with all 60-69 years: 12 the stops and stuff (Pt020). 70 and older: 6 Sex female: 14 Interviewees appreciated the efforts of some hospitals male: 8 to provide free transport and/or parking. However the Area of residence urban:13 limitations of such schemes (scarcity in the case of park- rural: 9 ing and journey length in the case of free transport) sometimes rendered them functionally useless because Medical card at time of interview yes: 16 patients were so frail. no: 6 Private health insurance at diagnosis yes: 9 They’d provide me with transport if I wanted. ... You no: 13 could be two or three hours driving. And you wouldn’t Employment status at diagnosis retired: 13 be able for that, you know? (Pt037). working: 8 unemployed: 1 Some respondents had increased utility bills following Received sick-pay from employer yes: 6 diagnosis, particularly for the telephone and heating. no: 2 They noted that this was because they were at home not applicable: 14 more and because (neo)adjuvant therapies could make them more susceptible to feeling cold. For some, these Marital status married: 13 extra costs caused real hardship. single: 3 divorced: 1 Our bills last year.. .were €370. He was so cold. .. . widow(er): 4 [It’s] gas and we would have .. . lighting as well. ... cohabiting: 1 And the heating on as well. .. .Oh God it [The cost] ‘Urban’ includes those residing in cities; ‘rural’ includes all other patients 2 was dreadful. Really dreadful (Spouse of PT007). One participant had neither health insurance nor a medical card. Other household expenses, such as home alterations required because of limitations in mobility following That’s the number of visits we have – eight visits treatment (for example, one family had to build a down- altogether. Eight visits to consultants and that would stairs extension as the patient could no longer manage have come to a cost of €960 and the insurance paid the stairs), could be very high, but were incurred by few €640 of that (Pt019). patients. Almost all patients described how treatment- I had probably three or four ultrasounds and scans. related changes in their bodies, such as weight loss, and/ €200 a pop (Pt004). or accommodating a stoma made it necessary for them to buy new clothes. The associated costs ranged from in- Those without medical cards noted that regular post- cidental to burdensome (when an entirely new wardrobe treatment GP visits constituted a substantial ongoing was required). cost. Some also paid the full contribution of €85 per month to a publicly-subsidised prescription drug scheme Making ends meets when purchasing supportive medications. Several items Eight interviewees were working at diagnosis. Six of had to be paid for in full by all respondents, most com- these interviewees received some sick pay from their monly over-the-counter painkillers and mouthwash for employers and all were very appreciative of employer chemotherapy-induced ulcers. These were not regarded understanding, both in terms of time off and sick pay as significant expenses by patients. provision. Despite this support, all employed participants, Travel costs to and from the hospital for treatment including those who received sick pay, noted a drop in were important for all interviewees, especially so for income post-diagnosis; in some cases the drop was sub- those who had chemotherapy and/or radiotherapy, be- stantial. This was particularly so in situations where an cause this required more hospital visits. Some spoke of individual had to retire early or work fewer hours. Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 5 of 10 http://www.biomedcentral.com/1471-230X/12/62 friends in keeping their business going. One described how his son took annual leave to help on the farm fol- lowing the initial diagnosis while ongoing support was provided by his wife and a neighbour. Those who took time off work were anxious to return as soon as possible. Being on a reduced income was keenly felt. One interviewee sought to bring forward his surgery so that he could get back to work sooner. I said [to the consultant] ‘I’m not worried about the cancer .. . however, I do have a financial concern.’ Because he was saying ‘If I can’t get you an early December [surgery date] .. . we’ll leave it until January or maybe February.’ So more months waiting, more months on half pay. So he said ‘I’ll definitely get you in regardless, by early December’ (Pt012). For those not working at diagnosis, the financial and economic impact of cancer was even more pronounced; Figure 1 Themes arising from interviews with patients and carers. these individuals generally had smaller pre-diagnosis incomes and cancer-related costs could have a severe So I have stopped working in the afternoon. .. . I impact, reducing their means considerably. One patient reckon I lost €4,000. You know eight months at about described how the high cost of hospital parking meant €500 (Pt015). that she could not afford a cup of tea in the canteen. Another noted: Two respondents who were working at diagnosis retired immediately. Both were unhappy with having to And then we’d have to be getting coffees and that up leave work but felt compelled to do so. there [the hospital] sometimes and a sandwich, you know .. . So it cost a pretty packet (PT034). I worked in childcare. I was in the running of a pre- school. .. . I had to give it up. I didn’t have to but I Some described having to cut back on spending to felt, I was advised there was a risk of infection with make ends meet. Some used their savings, and found small children. .. . And then – it’s a very physical job. that savings accumulated over years could be exhausted They all need lifting (Pt025). very quickly. Some carers also took time off work following the Well I just had a bit of money put by. It wasn’t diagnosis. For some, this leave was unpaid or had to be much.. . Take €50 from it. .. . Take [another] €50 and taken as part of holiday entitlements. In one instance, it would be gone then before you knew where you were where the patient was receiving palliative care, his (Pt007). daughter left her job to become his full-time carer. A few interviewees were self-employed and a cancer Savings could also function as a buffer allowing fam- diagnosis could be especially challenging for them. Gen- ilies to maintain their standard of living in the face of erally, these individuals felt pressure to continue working increased expenditure and/or reduced income. regardless of their health, even though it might be diffi- cult to cope. One entrepreneur described how his diag- I would've been in a bad way, I’d say, if I hadn’t have nosis nearly caused his business to fold. had them savings behind. We can live the lifestyle we’re used to because of those savings. .. . Imean But ...I had got behind...obviously sending out they’re dwindling now but, thank God I had them accounts.. ..I was only half functioning and it took a (Pt034). while and that’s where I got in trouble you know (Pt004). The role of family and friends All patients received some practical support from fam- Those in other areas of self-employment such as farm- ilies and/or friends. This took many forms including ing were able to draw on the support of family and help at home or with travel; support in the form of Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 6 of 10 http://www.biomedcentral.com/1471-230X/12/62 regular visits while the patient was in hospital/convales- for a medical card unduly arduous and embarrassing. cing; or financial assistance. Some patients came to rely Such feelings were shared by those who had been suc- on this support, especially with respect to travelling to cessful in their application and those who had not. and from hospital. Emotional support was also provided. Patients noted that a carer could sometime have a great It [the medical card] was a bit hard to get. .. . Very, impact on their wellbeing through the security provided very hard. .. . They [the community welfare officers by knowing that they (the carer) were there if needed. who adjudicate on applications] really humiliate you. Patients were very appreciative of the practical and emo- It’s horrible (spouse of Pt007). tional support they received. Some poor experiences resulted from conflicting or They [ my sons and daughters] organised a kind of a confusing information about entitlements. roster. .. . So that there would be somebody in hand. As it happened when I got out after the blockage I have a friend working in the Health Board ..... I problem, my wife took sick herself. She got a blessed remember at the time she had said to me that I should virus which really debilitated her and again the family be entitled to a temporary medical card. . .. . When I had to organise and cook lunch or dinner for us, you went about it, I got a very negative kind of reaction. know. (PT026). And I was told “no” (Pt016). my daughter is in Y. And she works up here in X. And she loops around to make sure [I’m ok].. .if one of Patients’ attitudes affected the way in which they them isn’t checking on me the other one is. I am well engaged with services. One participant had, based on minded (PT009). personal experiences, a negative opinion regarding bene- I’d be lost without [my daughter]. (PT034). fits of any kind and did not seek support even where he knew it was available. The role of family and friends in providing support was most pronounced for older respondents, especially You’ve only gurriers and gougers living around here. where infirmity meant the patient’s spouse was unable to They’re drunk seven days a week and work is a dirty provide help. In contrast, there was also a strong sense word. And yet I don’t know how I missed out on it [A among older patients that they needed to preserve their perceived easy life on benefits]. St. Vincent de Paul is independence. sending them to Wales for the summer. Not for two weeks, three weeks and where does PT007 go? (PT007). I’d say “I’m fine” and then my neighbour next door, she would insist on driving me in [to the hospital]. It was Others viewed benefits as entitlements following a life- driving me mad because I only had to go to the end of time of social insurance contributions and were comfort- the hill to get the bus.... But I was fine and it’s nice to able accessing services or applying for benefits. One have a bit of independence. (Pt009). patient spoke of an active process of informing herself. Patients were mindful that the support they received I’m very good about whatever is there .......all the often protected them from a whole range of expenses services are there and you would be a fool if you didn’t that they would otherwise have had to bear. In some [take them up] (PT009). instances, they described how the support meant they could preserve their savings. All agreed that without this The emotional impact of colorectal cancer support their situation would have been much more All patients spoke about the emotional cost of CRC challenging. for them and their families. Even where economic issues were not a cause of worry in and of themselves, the Services & entitlements emotional consequences took their toll. In the main, patients were knowledgeable about the vari- ous potential supports that might be available to them Financially, I had a good packet in the job, you know, within the health and social welfare system, such as the so I’m not destitute by any stretch of the imagination. drug payment scheme or medical cards. This awareness But I mean in terms of emotional stress and strains, came from a number of sources including health care stuff like that, this illness has cost us (PT034). providers and prior knowledge. Patients who were taking advantage of these services were quite happy with the Accessing health and social services could also cover provided. However, a number of difficulties were cause emotional strain, because of unhelpful or in- described. Some patients found the process of applying sensitive staff, or due to the specific circumstances or Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 7 of 10 http://www.biomedcentral.com/1471-230X/12/62 requirements. For example, one patient was, unexpect- It could have been more [money spent] .. . See, I never edly, required to pay for scans before the results would kept notes. .. . See, I usually keep notes but I was so ill be released. She described feeling threatened by this. for him, that my mind.. . [was not as focused] Some patients described how a lack of public know- (PT007). ledge or understanding of CRC could lead to social em- barrassment. One patient described taking the bus home Discussion after chemotherapy: Our patients covered a range of ages, disease stages, care journeys, personal circumstances and socio-economic And I asked the bus driver would he close the door. backgrounds. Colorectal cancer affects men and women Oh God. He turned around to the rest of the bus [and in approximately equal measure; therefore we were able said] ‘This lady wants to close the door and we’re all to ensure that gender perspectives on cancer and its eco- dying with the heat, she says she’s cold.’ .. . Oh God. nomic and emotional impacts were considered. Our sam- And I just wanted to explain ‘I’m not just cold, I’m ple included several people whose cancer was no longer sick.’ (PT025). curable (, though none was at the very end of life). The issues faced by these patients were not fundamentally dif- For families too, the emotional impact of cancer could ferent to those of other patients who were cancer-free. be significant. Often family members or carers had other The inclusion of carers and family members in our study stressors in their lives (such as pregnancy and moving added their perspective to that of patients and provided house) and the cancer diagnosis represented an added more insight into the experiences of patients themselves. emotional burden. Usually, carers’ perspectives are investigated separately from that of patients [12,15,16,18,19,28,29]. Markman et It’s putting more pressure on them[family members or al (2010) [30] did explore cancer-related out-of-pocket carers] and they are worried about you and everything costs from the perspective of the family as a whole but else (Pt009). this study did not consider the multi-dimensional na- ture of the economic impact of the disease. The qualita- Interviewees described how the economic and emo- tive nature of our study allowed us to extend the tional impacts of cancer were inter-related, both posi- existing body of evidence on “costs” of cancer (in its tively and negatively. One patient felt compelled to retire widest sense) and explore both economic and emotional early from employment and was left with a deep sense costs, how these interact, and how patient and family of injustice about this. Another, who was successful in experiences, attitudes, and external supports influence applying for a medical card, described the difference this them. These issues would be unlikely to emerge from a made to her emotional wellbeing. quantitative study. In recent years, a consensus has begun to emerge I got ill just after I retired. .. . It wasn’t fair. Because regarding the core components of the economic burden all I done all my life was work, from the time I was of cancer for patients and their families [13,30,31]. Can- eleven years old. In those days you didn’t pay tax or cer-related expenses may include treatment costs (par- PRSI (Pt007). ticularly in private healthcare systems), treatment-related That was such a blessing to get that medical card travel and parking costs, household costs, and personal because it took [away] an awful lot of pressure and care costs (such as clothing). However, much of the pre- worry. (Pt025). vious literature pertains to breast and prostate cancer; CRC has been relatively under investigated. The age and In addition, the emotional strain could cause new eco- socio-economic distribution of CRC differs from breast nomic concerns, on top of those resulting directly from the and prostate cancer and treatment patterns differ [32], cancer diagnosis. In one instance a spouse who had already making it possible that the nature of costs and their im- taken annual leave to be with her husband around the time pact on patients will differ. In fact, our findings were of his diagnosis and treatment was forced to take more largely consistent with the literature, suggesting that, at leave as a result of the emotional strain she had endured. least in part, the mere fact of having a cancer is what impacts on patients economically, irrespective of the She was quite upset. So she took that day completely type of cancer. Furthermore, it is worth noting that pri- off work. And there was scattered days she took off, you vate health insurance did not provide any protection know (Pt012). from non-medical costs; all patients we interviewed bore such costs. For others, the stress that cancer caused meant they Although economic costs are important in and of were less able to keep track of day-to-day spending. themselves, the interplay between these costs and the Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 8 of 10 http://www.biomedcentral.com/1471-230X/12/62 Figure 2 Conceptual model of interrelationship between economic and emotional consequences and mediating factors. emotional toll of CRC upon patients and their families is importance. Our results would suggest that patients of equal importance. It is clear from this study and experience these issues not just in directly monetary others that cancer causes emotional strain for patients terms but in relation to how they impact on their own and their families [31,33]. Moreover, some have shown lives and those of their families. that financial distress in cancer patients can also cause Sick pay has previously been shown to be an import- emotional difficulties [34,35]. Our study suggests that ant determinant of work resumption post-cancer in Ire- this is a two-way relationship (see Figure 2). Not only land [36]. This study reveals that it is an important can economic strain cause emotional distress, the emo- mediator of the economic-emotional impact of the dis- tional toll of colorectal cancer has the potential to influ- ease. With adequate sick pay, the loss of income was ence the economic situation of the patient and caregiver greatly reduced and this in turn meant that patients wor- beyond the effect of the diagnosis itself. This gives rise ried less about their financial situation; hence financial to a situation where a family could face a direct eco- stress was not added to the stress due to the cancer nomic loss from cancer that was exacerbated by further diagnosis and could not exacerbate any existing eco- economic losses relating to their emotional state follow- nomic issues for the patient. On the other hand, in some ing diagnosis. This in turn could cause yet more emo- instances, the consequences of being absent from work tional problems. This negative feedback between with inadequate sick pay were such that they influenced economic and emotional consequences of cancer has the treatment decisions. This finding is consistent with the potential to make difficult situations even worse. existing literature [37,38]. Our findings further suggest that the factors that The availability of familial support can also impact on can exacerbate, alleviate, moderate or prevent this the emotional-economic strain for patients [39]. Using negative feedback loop are multi-faceted. The patient’s qualitative methods, Bradley et al [31] examined the role employment circumstances and income are of major of family and friends in providing economic support, but Ó Céilleachair et al. BMC Gastroenterology 2012, 12:62 Page 9 of 10 http://www.biomedcentral.com/1471-230X/12/62 did not consider the wider implications of this support and Our Lady’s Hospice, Harold’s Cross. We also thank the clerical support staff at the National Cancer Registry who transcribed the audio recordings of on patient wellbeing. In our study, patients frequently the interviews. Finally, we would like to thank the patients and their families spoke at great length about the things that family and and friends who took the time and effort to speak to us about their friends had done to improve their lives, or to show that experiences. they cared, or to help out financially. This meant that, Author details 1 2 through the attention of family/friends, patients often National Cancer Registry Ireland, Cork, Ireland. National Economic and avoided a great degree of economic outlay and emo- Social Council, Parnell Square, Dublin 1, Ireland. School of Public Health, Physiotherapy & Population Science, University College Dublin, Dublin, tional strain. The importance of support provided by Ireland. School of Economics and Geary Institute, University College Dublin, family in this study is consistent with findings of another Dublin, Ireland. School of Nursing, Dublin City University, Dublin, Ireland. Irish study of breast, prostate and lung cancer patients National Cancer Registry, Building 6800, Cork Airport Business Park, Kinsale Road, Cork, Ireland. [25] and may reflect strong family cohesion in Ireland [40] compared to other countries in northern Europe. Authors’ contributions Further research would be valuable in clarifying whether AÓC developed the topic guide, liaised with clinical and nursing staff, the role of family support is as strong in other settings. arranged and conducted the patient interviews. He contributed to the analysis of the interview transcripts and drafted the paper.CF liaised with Patients themselves could influence the cycle of eco- clinical and nursing staff, arranged and conducted patient interviews and nomic and emotional strain by engaging with available commented critically on the paper. LC contributed to the analysis and health and social welfare services. A small number of interpretation of the interview transcripts and commented critically on the paper. AT contributed to design and implementation of the study methods, patients had received conflicting or wrong information development of the topic guide, and commented critically on the paper. PF on their entitlement to supports, especially medical contributed to design and implementation of the study methods and cards. This often led to confusion and embarrassment commented critically on paper. KK contributed to design and implementation of the study methods and commented critically on the for patients when they were informed that their applica- paper. AS contributed to design and implementation of the study and tion for support had failed. Evidence from the UK sug- commented critically on the paper. LS contributed to design and gests that benefits available to cancer patients often go implementation of the study, the development of the topic guide, analysis and interpretation of the interview transcripts, and assisted with writing the unclaimed [34], meaning that patients and their families paper. All authors read and approved the final manuscript. are assuming unnecessary burdens. This observation, to- gether with our findings, suggests that more and better Received: 24 June 2011 Accepted: 7 June 2012 Published: 7 June 2012 communication with cancer patients regarding their entitlements is needed. 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Moffatt S, Noble E, Exley C: "Done more for me in a fortnight than Submit your next manuscript to BioMed Central anybody done in all me life." How welfare rights advice can help people and take full advantage of: with cancer. BMC Health Serv Res 2010, 3(10). 35. Sharp L, Carsin AE, Timmons A: Associations between cancer-related financial stress and strain and psychological wellbeing among • Convenient online submission individuals living with cancer. Psychooncology, . in press. • Thorough peer review 36. Sharp L, Timmons A: Social welfare and legal constraints associated with • No space constraints or color figure charges work among breast and prostate cancer survivors: Experiences from Ireland. J Cancer Surviv, . in press. • Immediate publication on acceptance 37. Hofstatter EW: Understanding patient perspectives on communication • Inclusion in PubMed, CAS, Scopus and Google Scholar about the cost of cancer care: a review of the literature. 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