Barriers to active self-management following treatment for head and neck cancer: Survivors' perspectives.

OBJECTIVE: Active self-management practices may help head and neck cancer (HNC) survivors to deal with challenges to their physical, functional, social, and psychological well-being presented by HNC and its treatment. This study investigates the factors perceived by HNC survivors to act as barriers to their active self-management following primary treatment. METHODS: In this qualitative study, 27 HNC survivors identified through 4 designated cancer centres in Ireland participated in face-to-face semistructured interviews. Interviews were audio-recorded, transcribed, and analysed using thematic analysis. RESULTS: Four themes (and associated subthemes) describing barriers to survivors' active self-management were identified: emotional barriers (eg, fear of recurrence), symptom-related barriers (eg, loss of taste), structural barriers (eg, access to appropriate health services), and self-evaluative barriers (eg, interpersonal self-evaluative concerns). CONCLUSIONS: This is the first study to describe HNC survivors' views about barriers to their active self-management after treatment. The findings have important implications for self-management research and intervention development concerning HNC survivorship.

Associations between neighbourhood support and financial burden with unmet needs of head and neck cancer survivors.

PURPOSE: To assess the unmet needs of head and neck cancer survivors and investigate associated factors. In particular, to explore whether social support (family/friends and neighbours) and financial burden are associated with unmet needs of head and neck cancer (HNC) survivors. METHODS: This was a cross-sectional study of HNC survivors, with 583 respondents included in the analysis. Information was collected on unmet supportive care needs as measured by the Supportive Care Needs Survey (SCNS-SF34). Poisson regression with robust standard errors was used to examine factors associated with having one or more needs in each of the five domains (physical; psychological; sexuality; patient care and support; and health system and information). RESULTS: The mean age of respondents was 62.9years (standard deviation 11.3years) and one third of respondents were female. The top ten unmet needs was composed exclusively of items from the physical and psychological domains. Financial strain due to cancer and finding it difficult to obtain practical help from a neighbour were both associated with unmet needs in each of the five domains, in the adjusted analyses. CONCLUSION: Whilst in each domain, a minority of respondents have unmet needs, approximately half of respondents reported at least one unmet need, with the commonest unmet needs in the psychological domain. Providing services to people with these needs should be a priority for healthcare providers. We suggest that studies, which identify risk factors for unmet needs, could be used to develop screening tools or aid in the targeting of support.

The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period.

AIMS AND OBJECTIVES: To examine the unmet supportive care needs of long-term head and neck cancer caregivers, and the factors associated with those needs. BACKGROUND: Research on the unmet needs of head and neck cancer caregivers is lacking, particularly in the long-term survivorship period. DESIGN: Survey of 197 caregivers. METHODS: The study collected information on caregivers' demographic characteristics and their unmet supportive care needs (as measured by the Partners and Caregivers Supportive Care Needs Survey). An overall score of unmet need was generated, as were scores for four separate domains of unmet needs (emotional, health, information and work/social). RESULTS: Seventy six percentage of respondents were female, and 88% reported being married or living with a partner. Mean age was 57 years. Most caregivers had low levels of unmet needs. Managing fears about the cancer recurring was the most commonly reported individual need, described by slightly more than one in five respondents. The highest levels of need were located in the emotional and the health services domains. Loneliness and financial stress were consistently and significantly associated with high levels of unmet need in the multivariable analysis. CONCLUSIONS: Most head and neck cancer caregivers appear to have low levels of unmet need in the extended survivorship period. The greatest levels of unmet need that are experienced occur in relation to emotional and health service domains. Needs diminish over time. RELEVANCE TO CLINICAL PRACTICE: Health professionals should be aware that a minority of long-term head and neck caregivers continue to experience strong fears of cancer recurrence. To reduce unmet needs across multiple domains, health professionals should seek to reduce caregivers' feelings of loneliness, and to assist caregivers to reduce the financial burdens that they experience as a result of long-term caring.

Burden and happiness in head and neck cancer carers: the role of supportive care needs.

PURPOSE: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC). METHODS: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness RESULTS: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (ß = .28, p = .04), while psychological needs (ß = -.38, p = .028), health care service needs (ß = -.30, p = .049), information needs (ß = .29, p = .028), carer comorbidity (ß = -.18, p = .030), and gender (ß = -.16, p = .045) were associated with happiness. CONCLUSIONS: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

The financial impact of head and neck cancer caregiving: a qualitative study.

BACKGROUND: There is a lack of research on the financial impacts that head and neck cancer has on caregivers. OBJECTIVE: To explore the overall financial impact of head and neck cancer on caregivers; to describe the factors that mitigate this impact. METHODS: Interviews with 31 caregivers (mean time caring: 5.7 years). RESULTS: Head and neck cancer had a considerable financial impact on caregivers. It resulted in out of pocket costs and caregivers and/or their relative/friend with cancer often became under- or un-employed. Caregivers with large debts or ongoing expenses appeared to be particularly vulnerable to cancer-related financial pressures. Finance related psychological stress was prevalent, although some caregivers hid their psychological difficulties from other people. Factors which help caregivers to mitigate financial distress included having private health insurance and being able to access to medical and/or social welfare benefits. CONCLUSIONS: Head and neck cancer can cause caregivers substantial financial and psychological distress. Distress may be mitigated by providing caregivers and their households with access to welfare benefits. IMPLICATIONS FOR PRACTICE: Health professionals should be aware that head and neck cancer can have short and long-term financial consequences for caregivers and their families. Health professionals should refer patients and their caregivers to medical social workers who can help them with their financial issues. Copyright © 2016 John Wiley & Sons, Ltd.

Comparing the costs of three prostate cancer follow-up strategies: a cost minimisation analysis.

PURPOSE: Prostate cancer follow-up is traditionally provided by clinicians in a hospital setting. Growing numbers of prostate cancer survivors mean that this model of care may not be economically sustainable, and a number of alternative approaches have been suggested. The aim of this study was to develop an economic model to compare the costs of three alternative strategies for prostate cancer follow-up in Ireland-the European Association of Urology (EAU) guidelines, the National Institute of Health Care Excellence (NICE) guidelines and current practice. METHODS: A cost minimisation analysis was performed using a Markov model with three arms (EAU guidelines, NICE guidelines and current practice) comparing follow-up for men with prostate cancer treated with curative intent. The model took a health care payer's perspective over a 10-year time horizon. RESULTS: Current practice was the least cost efficient arm of the model, the NICE guidelines were most cost efficient (74 % of current practice costs) and the EAU guidelines intermediate (92 % of current practice costs). For the 2562 new cases of prostate cancer diagnosed in 2009, the Irish health care system could have saved €760,000 over a 10-year period if the NICE guidelines were adopted. CONCLUSIONS: This is the first study investigating costs of prostate cancer follow-up in the Irish setting. While economic models are designed as a simplification of complex real-world situations, these results suggest potential for significant savings within the Irish health care system associated with implementation of alternative models of prostate cancer follow-up care.

Pre-diagnosis employment status and financial circumstances predict cancer-related financial stress and strain among breast and prostate cancer survivors.

PURPOSE: Cancer may have a significant financial impact on patients, but the characteristics that predispose patients to cancer-related financial hardship are poorly understood. We investigated factors associated with cancer-related financial stress and strain in breast and prostate cancer survivors in Ireland, which has a complex mixed public-private healthcare system. METHODS: Postal questionnaires were distributed to 1373 people diagnosed with cancer 3-24 months previously identified from the National Cancer Registry Ireland. Outcomes were cancer-related financial stress (impact of cancer diagnosis on household ability to make ends meet) and financial strain (concerns about household financial situation since cancer diagnosis). Modified Poisson regression was used to estimate relative risks (RR) for factors associated with cancer-related financial stress and strain. RESULTS: Seven hundred forty survivors participated (response rate = 54 %). Of the respondents, 48 % reported cancer-related financial stress and 32 % cancer-related financial strain. Compared to those employed at diagnosis, risk of cancer-related financial stress was significantly lower in those not working (RR = 0.71, 95 % CI 0.58-0.86) or retired (RR = 0.48, 95 % CI 0.34-0.68). It was significantly higher in those who had dependents; experienced financial stress pre-diagnosis; had a mortgage/personal loans; had higher direct medical out-of-pocket costs; and had increased household bills post-diagnosis. For cancer-related financial strain, significant associations were found with dependents, pre-diagnosis employment status and pre-diagnosis financial stress; risk was lower in those with higher direct medical out-of-pocket costs. CONCLUSIONS: Cancer-related financial stress and strain are common. Pre-diagnosis employment status and financial circumstances are important predictors of post-diagnosis financial wellbeing. These findings could inform development of tools to identify patients/survivors most in need of financial advice and support.

Productivity Losses Associated with Head and Neck Cancer Using the Human Capital and Friction Cost Approaches.

OBJECTIVES: Previous studies suggest that productivity losses associated with head and neck cancer (HNC) are higher than in other cancers. These studies have only assessed a single aspect of productivity loss, such as temporary absenteeism or premature mortality, and have only used the Human Capital Approach (HCA). The Friction Cost Approach (FCA) is increasingly recommended, although has not previously been used to assess lost production from HNC. The aim of this study was to estimate the lost productivity associated with HNC due to different types of absenteeism and premature mortality, using both the HCA and FCA. METHODS: Survey data on employment status were collected from 251 HNC survivors in Ireland and combined with population-level survival estimates and national wage data. The cost of temporary and permanent time off work, reduced working hours and premature mortality using both the HCA and FCA were calculated. RESULTS: Estimated total productivity losses per employed person of working age were EUR253,800 using HCA and EUR6800 using FCA. The main driver of HCA costs was premature mortality (38% of total) while for FCA it was temporary time off (73% of total). CONCLUSIONS: The productivity losses associated with head and neck cancer are substantial, and return to work assistance could form an important part of rehabilitation. Use of both the HCA and FCA approaches allowed different drivers of productivity losses to be identified, due to the different assumptions of the two methods. For future estimates of productivity losses, the use of both approaches may be pragmatic.

"It's at a time in your life when you are most vulnerable": a qualitative exploration of the financial impact of a cancer diagnosis and implications for financial protection in health.

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.

The multidimensional nature of the financial and economic burden of a cancer diagnosis on patients and their families: qualitative findings from a country with a mixed public-private healthcare system.

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

Associations between cancer-related financial stress and strain and psychological well-being among individuals living with cancer.

BACKGROUND: Cancer places a financial and economic burden on individuals, but relatively little is known about the consequences. We investigated associations between cancer-related financial stress and strain and psychological well-being. METHODS: Individuals >6 months post-diagnosis with breast, prostate and lung cancer, identified from the National Cancer Registry Ireland, completed a postal questionnaire. Financial stress was assessed by the impact of the cancer diagnosis on household ability to make ends meet, financial strain by feelings about household financial situation since the cancer diagnosis and psychological well-being (depression, anxiety and distress) by the Depression Anxiety Stress Scales-21. Logistic regression was used to identify associations between financial stress and strain and depression, anxiety and distress of (a) any severity and (b) severe or worse. RESULTS: The response rate was 54%. Of 654 respondents, 49% reported increased financial stress and 32% increased financial strain due to cancer. Depression, anxiety and distress were present in: 36%, 29% and 29%, respectively (any severity); and 14%, 13% and 13%, respectively (severe or worse). In adjusted analyses, depression risk was raised threefold in those reporting increased cancer-related financial stress (odds ratio (OR) = 2.79, 95%CI 1.87-4.17) and increased cancer-related financial strain (OR = 3.56, 95%CI 2.23-5.67). For severe or worse depression, the risk estimates were more pronounced (increased stress: OR = 4.36, 95%CI 2.35-8.10; increased strain: OR = 8.21, 95%CI 3.79-17.77). Similar associations were found for anxiety and distress. CONCLUSIONS: Cancer-related financial stress and strain were consistently associated with increased risk of adverse psychological outcomes. If confirmed, these findings provide further rationale for initiatives to alleviate the financial burden of cancer.

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

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.

Breast and prostate cancer productivity costs: a comparison of the human capital approach and the friction cost approach.

OBJECTIVES: Productivity costs constitute a substantial proportion of the total societal costs associated with cancer. We compared the results of applying two different analytical methods--the traditional human capital approach (HCA) and the emerging friction cost approach (FCA)--to estimate breast and prostate cancer productivity costs in Ireland in 2008. METHODS: Data from a survey of breast and prostate cancer patients were combined with population-level survival estimates and a national wage data set to calculate costs of temporary disability (cancer-related work absence), permanent disability (workforce departure, reduced working hours), and premature mortality. RESULTS: For breast cancer, productivity costs per person using the HCA were € 193,425 and those per person using the FCA were € 8,103; for prostate cancer, the comparable estimates were € 109,154 and € 8,205, respectively. The HCA generated higher costs for younger patients (breast cancer) because of greater lifetime earning potential. In contrast, the FCA resulted in higher productivity costs for older male patients (prostate cancer) commensurate with higher earning capacity over a shorter time period. Reduced working hours postcancer was a key driver of total HCA productivity costs. HCA costs were sensitive to assumptions about discount and growth rates. FCA costs were sensitive to assumptions about the friction period. CONCLUSIONS: The magnitude of the estimates obtained in this study illustrates the importance of including productivity costs when considering the economic impact of illness. Vastly different results emerge from the application of the HCA and the FCA, and this finding emphasizes the importance of choosing the study perspective carefully and being explicit about assumptions that underpin the methods.

Social welfare and legal constraints associated with work among breast and prostate cancer survivors: experiences from Ireland.

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