Integrating self-management into daily life following primary treatment: head and neck cancer survivors' perspectives.

BACKGROUND: Self-management may help cancer survivors to better deal with challenges to their physical, functional, social and psychological well-being presented by cancer and its treatment. Nonetheless, little is known about how people integrate cancer self-management practices into their daily lives. The aim of this study was to describe and characterise the processes through which head and neck cancer (HNC) survivors attempt to integrate self-management into their daily lives following primary treatment. METHODS: Using a purposeful critical case sampling method, 27 HNC survivors were identified through four designated cancer centres in Ireland and participated in face-to-face semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis. RESULTS: Six themes describing HNC survivors' attempts to integrate self-management into their lives following treatment were identified: grappling with having to self-manage, trying out self-management strategies, becoming an expert self-manager, struggling to integrate self-management strategies into daily life, avoiding recommended self-management and interpreting self-management. CONCLUSIONS: This is the first study to describe HNC survivors' attempts to integrate self-management into their daily lives following primary treatment. The findings indicate that HNC survivors exhibit highly individualised approaches to self-management integration and abandon self-management strategies that fail to meet their own specific needs. IMPLICATIONS FOR CANCER SURVIVORS: Survivors may benefit from skills training and structured support to assist their transition between in-patient care and having to self-manage after primary treatment, and/or ongoing support to deal with persistent and recurring challenges such as eating difficulties and fear of recurrence.

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.

Posttraumatic growth in head and neck cancer survivors: Is it possible and what are the correlates?

OBJECTIVES: Posttraumatic growth (PTG) is a possible positive consequence of a traumatic event, such as cancer. Head and neck cancer (HNC) may be particularly traumatic, given its adverse effects on functional, psychological, and social wellbeing. We investigated the extent of PTG, factors associated with PTG, and associations between PTG and health-related quality-of-life (HRQoL) in HNC survivors. METHODS: HNC survivors (ICD10 C00-C14, C32), identified from the population-based National Cancer Registry Ireland, completed a postal survey. PTG was assessed using the Posttraumatic Growth Inventory (PTG-I) and HRQoL with FACT-G and FACT-H&N. Associations between socio-economic characteristics, social support, and clinical variables and PTG were examined using multivariable linear regression. Total HRQoL scores were compared in those with none-low PTG vs moderate-high PTG. RESULTS: A total of 583 survivors participated (response rate = 59%). The mean PTG score was 55.74 (95%CI 53.15-58.33); 60% had moderate-high PTG. Survivors scored highest in the PTG-I domain appreciation of life. In multivariable analysis, being female, being younger, having more social support, and having cancer-related financial stress were significantly associated with more PTG. HRQoL was significantly higher in those with moderate-high than no-little PTG (P < .01). CONCLUSIONS: A notable proportion of HNC survivors report PTG but growth is, on average, lower than reported for other cancers. Nonetheless, higher PTG appears related to better HRQoL. Further research would be valuable to understand the pathways by which HNC may lead to PTG and inform development of strategies to support and encourage PTG in this survivor population.

Worry in Head and Neck Cancer Caregivers: The Role of Survivor Factors, Care-Related Stressors, and Loneliness in Predicting Fear of Recurrence.

BACKGROUND: Fear of recurrence (FOR) is a primary concern for both cancer survivors and their caregivers, yet little is known about what care-related factors exacerbate this worry. OBJECTIVES: This study aimed to establish the role of care-related stressors-as distinct from survivor characteristics-in predicting FOR in head and neck cancer caregivers. METHODS: HNC survivor-caregiver dyads took part in a mailed survey. Survivors provided information on health and quality of life (using the Functional Assessment of Cancer Therapy Questionnaire). Caregivers provided sociodemographic information, impact of caring on their time and finances, as well as their level of social support (Oslo Support Scale), loneliness (3-point loneliness scale), and completed the Worry of Cancer Scale (to measure FOR). RESULTS: Data from 180 dyads were available for analysis. Multiple regression analysis was used to examine the role of caregiver stressors, social support, and loneliness while controlling for caregiver and survivor characteristics. The model explained 28% of the variance in Worry of Cancer scores (FOR). Caregivers who reported more loneliness, spent more time caring, and had greater financial stress from caring had higher scores on Worry of Cancer (FOR). Female caregivers, those caring for younger survivors, and those with survivors who had undergone less extensive forms of surgery also reported higher FOR. DISCUSSION: A combination of factors place caregivers at greater risk of cancer-related worry, paving the way for designing interventions aimed at reducing FOR in caregivers of patients with head and neck cancers.

Self-management strategies used by head and neck cancer survivors following completion of primary treatment: A directed content analysis.

OBJECTIVE: Head and neck cancer (HNC) survivors encounter unique challenges following treatment. This study aimed to identify self-management strategies that HNC survivors use to overcome these posttreatment challenges. METHODS: Twenty-seven individuals from 4 designated cancer centres in Ireland were interviewed about self-management strategies that helped them overcome challenges following HNC treatment. Interviews were audio-recorded, transcribed, and analysed using directed content analysis. RESULTS: Twenty self-management strategy types (encompassing 77 specific strategies) were identified. The most frequently used self-management strategy types were self-sustaining (used by 26 survivors), self-motivating (n = 25), and proactive problem solving (n = 25). The most frequently used specific strategies were adaptive approaches to ongoing physical consequences of HNC and its treatment (n = 24), customising dietary practices (n = 24), and maintaining a positive outlook (n = 22). CONCLUSIONS: The study identified strategies that helped HNC survivors to self-manage posttreatment challenges. This information could inform the design/development of self-management interventions tailored towards HNC survivors.

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.

Distress in long-term head and neck cancer carers: a qualitative study of carers' perspectives.

AIMS AND OBJECTIVES: To identify and describe the triggers of emotional distress among long-term caregivers (more than 1 year postdiagnosis) of people with head and neck cancer. BACKGROUND: Limited research has been conducted on the factors that cause head and neck cancer caregivers to become distressed. DESIGN: Qualitative cross-sectional. METHODS: In-depth semi-structured interviews. Interviews were conducted via telephone. The study setting was the Republic of Ireland. RESULTS: Interviews were conducted with 31 long-term caregivers (mean time since diagnosis 5·7 years, SD 2·9 years). Head and neck cancer caregivers experienced significant distress. Six key triggers of emotional distress were identified: understandings and fears of illness, lifestyle restrictions and competing demands, facial disfigurement, financial problems, comorbid health problems and witnessing suffering. Cutting across all of these individual causes of distress was a strong feeling of loss caused by head and neck cancer. CONCLUSIONS: Some head and neck cancer caregivers became considerably distressed by their caring role. Although distress appears to decline with time for many caregivers, some continue to be distressed for years following the patient's diagnosis. It would be useful for future research to explicitly investigate caregivers' experiences of loss. RELEVANCE TO CLINICAL PRACTICE: Health professionals may be able to reduce distress in this group if they can help caregivers to access resources that can be used to buffer financial problems. Health professionals may also be able to reduce distress if they can work with caregivers to help them to obtain something of personal value or significance from their experience of loss and suffering.

Cancer survivors' perspectives on adjustment-focused self-management interventions: a qualitative meta-synthesis.

PURPOSE: Self-management interventions improve patient outcomes across a range of long-term conditions but are often limited by low uptake and completion rates. The aim of this paper was to conduct a meta-synthesis of qualitative studies exploring cancer survivors' views and experiences of engaging with adjustment-focused self-management interventions in order to inform the development of future interventions targeting this population. METHODS: Four electronic databases were systematically searched. Studies that used qualitative methods to explore cancer survivors' views and experiences of engaging with adjustment-focused self-management interventions were included. A meta-ethnographic approach was used to synthesize the findings. RESULTS: Thirteen studies met the inclusion criteria. Engaging with adjustment-focused self-management interventions enabled cancer survivors to gain emotional and informational support from peers and/or facilitators in an open, non-judgemental environment, become empowered through enhancing knowledge and skills and regaining confidence and control, and move beyond cancer by accepting illness experiences, reprioritising goals and adopting a positive outlook. However, the extent to which they engaged with, and benefited from, such interventions was mitigated by diverse preferences regarding intervention design, content and delivery. Personal obstacles to engagement included low perceived need, reticence to discuss cancer-related experiences and various practical issues. CONCLUSIONS: Cancer survivors derive a range of benefits from participating in adjustment-focused self-management interventions; potential barriers to engagement should be addressed more comprehensively in intervention marketing, design and delivery. IMPLICATIONS FOR CANCER SURVIVORS: The findings suggest some key considerations for the development and implementation of future adjustment-focused self-management interventions that may help to optimize their appeal and effectiveness among cancer survivors.

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.

What factors are associated with posttraumatic growth in head and neck cancer carers?

PURPOSE: Researchers have recently called for more work to be conducted on positive outcomes and head and neck cancer. The purpose of this study was to investigate the factors associated with posttraumatic growth in head and neck cancer caregivers. METHODS AND SAMPLE: 197 carers were surveyed. A descriptive cross-sectional survey design was used. RESULTS: In multivariate analysis the following factors were statistically significantly associated with increased posttraumatic growth: social support, longer time since diagnosis, increased worry about cancer and increased financial stress and strain stemming from caring. CONCLUSIONS: While HNC carers in the post-treatment phase of the illness trajectory can experience considerable psychological burdens, this study suggests that these burdens can lead some carers to experience growth and change and an expanded sense of themselves and their social worlds. Implications for nursing practice are discussed.

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.

Long-term workforce participation patterns following head and neck cancer.

PURPOSE: This analysis describes the long-term workforce participation patterns of individuals diagnosed with head and neck cancer (HNC). METHODS: Survivors of HNC (ICD10 C00-C14, C32) diagnosed at least 8 months previously were identified from the National Cancer Registry Ireland and sent a survey including questions about working arrangements before and since diagnosis. Descriptive statistics and multivariate logistic regression were used to examine the factors that influence workforce participation at 0, 1 and 5 years after diagnosis. RESULTS: Two hundred sixty-four individuals employed at the time of diagnosis responded to the survey, an average 6 years post-diagnosis. Seventy-seven percent took time off work after diagnosis, with a mean work absence of 9 months (range 0-65 months). Fifty-two percent of participants reduced their working hours (mean reduction 15 h/week). The odds of workforce participation following HNC were increased by not being eligible for free medical care (OR 2.61, 95% CI 1.15-5.94), having lip, mouth or salivary gland cancer (compared to cancer of the pharynx or cancer of the larynx, OR 2.79, 1.20-6.46), being self-employed (OR 2.01, 1.07-3.80), having private health insurance (OR 2.06, 1.11-3.85) and not receiving chemotherapy (OR 2.82, 1.31-6.06). After 5 years, only the effect of medical card remained (i.e., medical insurance) (OR 4.03, 1.69-9.62). CONCLUSIONS: Workforce participation patterns after HNC are complex and are influenced by cancer, treatment and employment factors. IMPLICATIONS FOR CANCER SURVIVORS: Patients should be informed of the potential impacts of HNC on workforce participation, and clinicians, policy makers and employers should be aware of these potential longer-term effects and related variables.

The magnitude and characteristics of the population of cancer survivors: using population-based estimates of cancer prevalence to inform service planning for survivorship care.

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

Quality of life in urban and rural settings: a study of head and neck cancer survivors.

OBJECTIVE: Urban-rural variation in cancer incidence, treatment, and clinical outcomes has been well researched. With the growing numbers and longer lifespan of cancer survivors, quality of life (QOL) is now a critical issue. The present study investigates the QOL of head and neck cancer (HNC) survivors in Ireland, paying special attention to urban and rural variation. METHODS: From the population-based National Cancer Registry Ireland, we identified 991 survivors of HNC (ICD10 C00-C14, C32), who were at least eight months post-diagnosis, and invited them to complete a postal survey. We used self-reported data and information from the Registry to create a composite variable classifying respondents' current area of residence as "urban" or "rural." Respondents self-reported QOL using the Functional Assessment for Cancer Therapy with Head and Neck module (FACT-HN). We used bootstrap linear regression to control for confounding variables, while estimating the association of urban and rural residence to FACT-HN domain scores. RESULTS: We obtained survey and Registry data from 583 HNC survivors. Controlling for demographic and clinical variables, rural survivors reported higher physical (coefficient 1.27, bias-corrected and accelerated 95% confidence interval 0.54, 2.43), emotional (coef. 0.99, 95% CI 0.21, 2.02), and HNC-specific (coef. 1.55, 95% CI 0.32, 3.54) QOL than their urban counterparts. Social and functional QOL did not differ significantly. CONCLUSIONS: These findings add to growing evidence of important differences in life experiences of cancers survivors in urban and rural settings. Results such as these will allow health professionals, policy makers and service providers to better serve these populations.

"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.

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.