Colorectal cancer survivors: an investigation of symptom burden and influencing factors.

BACKGROUND: Colorectal cancer is a significant issue internationally, with over 1.3 million people diagnosed annually. Survival rates are increasing as treatments improve, although physical symptoms can persist despite eradication of the tumour. In order to optimize survivorship care, further research is warranted in relation to symptom burden. Therefore, the objectives of this study are to (i) investigate frequency of physical symptoms in colorectal cancer survivors (ii) identify which symptoms occur together (iii) examine the associations between demographic and clinical variables, and symptoms. METHODS: Participants nine months to three years post diagnosis were identified from the population-based National Cancer Registry Ireland. Respondents completed the EORTC QLQ-C30 and EORTC QLQ-CR29. Reported physical symptom frequencies were transformed into continuous scale variables, which were then analysed using one way analysis of variance, general linear modelling and Spearman rank correlations. RESULTS: There were 496 participants. Fatigue, insomnia and flatulence were the most frequent symptoms, with ≥20% of respondents reporting these to be often present in the previous week. Eight other symptoms were experienced often by 10-20% of respondents. At least one of these eleven most common symptoms was experienced frequently by almost every respondent (99%). 66% of respondents experienced at least two of these symptoms together, and 16% experienced five or more together. Current stoma was the single most common variable associated with increased symptom scores, although statistically significant relationships (p ≤ 0.05) between symptom frequency scores and clinical/demographic variables were generally weak (R-sq value ≤0.08). CONCLUSION: Findings may inform targeted interventions during the nine month to three year post diagnosis timeframe, which would enable supported self-management of symptoms.

Financial Impact of Colorectal Cancer and Its Consequences: Associations Between Cancer-Related Financial Stress and Strain and Health-Related Quality of Life.

BACKGROUND: The financial impact and consequences of cancer on the lives of survivors remain poorly understood. This is especially true for colorectal cancer. OBJECTIVE: We investigated objective cancer-related financial stress, subjective cancer-related financial strain, and their association with health-related quality of life in colorectal cancer survivors. DESIGN: This was a cross-sectional postal survey. SETTINGS: The study was conducted in Ireland, which has a mixed public-private healthcare system. PATIENTS: Colorectal cancer survivors, diagnosed 6 to 37 months prior, were identified from the population-based National Cancer Registry. MAIN OUTCOME MEASURES: Cancer-related financial stress was assessed as impact of cancer on household ability to make ends meet and cancer-related financial strain by feelings about household financial situation since cancer diagnosis. Health-related quality of life was based on European Organisation for Research and Treatment of Cancer QLQ-C30 global health status. Logistic regression was used to identify associations between financial stress and strain and low health-related quality of life (lowest quartile, score ≤50). RESULTS: A total of 493 survivors participated. Overall, 41% reported cancer-related financial stress and 39% cancer-related financial strain; 32% reported both financial stress and financial strain. After adjustment for sociodemographic and clinical variables, the odds of low health-related quality of life were significantly higher in those who reported cancer-related financial stress postdiagnosis compared with those who reported no change in financial stress postcancer (OR = 2.54 (95% CI, 1.62-3.99)). The odds of low health-related quality of life were also significantly higher in those with worse financial strain postdiagnosis (OR =1.73 (95% CI, 1.09-2.72)). The OR for those with both cancer-related financial stress and financial strain was 2.59 (95% CI, 1.59-4.22). LIMITATIONS: Survey responders were younger, on average, than nonresponders. Responders and nonresponders may have differed in cancer-related financial stress and strain or health-related quality of life. CONCLUSIONS: Four in 10 colorectal cancer survivors reported an adverse financial impact of cancer. Cancer-related financial stress and strain were significantly associated with low health-related quality of life. To inform support strategies, additional research is needed to better understand how both objective and subjective financial distress influence survivors' health-related quality of life. See Video Abstract http://links.lww.com/DCR/A447.

Counting the cost of cancer: out-of-pocket payments made by colorectal cancer survivors.

PURPOSE: Cancer places a significant cost burden on health services. There is increasing recognition that cancer also imposes a financial and economic burden on patients but this has rarely been quantified outside North America. We investigate out-of-pocket costs (OOPCs) incurred by colorectal (CRC) survivors in Ireland. METHODS: CRC survivors (ICD10 C18-20) diagnosed 6-30 months previously were identified from the National Cancer Registry Ireland and invited to complete a postal questionnaire. Cancer-related OOPC for tests, procedures, drugs, allied medications and household management in approximately the year following diagnosis were calculated. Robust regression was used to identify predictors of OOPC; this was done for all survivors combined and stratified by age (<70 and ≥70 years) and employment status (working and not working) at diagnosis. RESULTS: Four hundred ninety-seven CRC survivors completed questionnaires (response rate = 39%). Almost all (90%) respondents reported some cancer-related OOPC. The average total OOPC was €1589. Stage III at diagnosis was associated with significantly higher OOPCs than other stages in the all-survivor model, in those not working in the employment model and in those under 70 years in the age-stratified model. In all-survivor model, those under 70 also had higher OOPCs, as did those in employment. Having one or more children was associated with significantly lower OOPCs in those under 70 years. CONCLUSIONS: Almost all CRC survivors incur cancer-related OOPCs; for some, these are not insignificant. Greater attention should be paid to the development of services to help survivors manage the financial and economic burden of cancer.

Distance from treating hospital and colorectal cancer survivors' quality of life: a gendered analysis.

PURPOSE: Distance from residence to hospital has been associated with clinical outcomes for colorectal cancer patients. However, little is known about the association of remoteness with quality of life (QoL) for colorectal cancer survivors. We examined the relationship between distance from hospital and colorectal cancer survivors' QoL, with a specific focus on gender. METHODS: Colorectal cancer survivors in Ireland who were more than 6-months postdiagnosis completed the European Organization for Research and Treatment of Cancer QLQ-C30, measuring global health status (GHS) and physical, role, cognitive, social, and emotional functioning. Bootstrap linear regression was used to evaluate the association between remoteness and QoL scales, controlling for demographic and clinical variables. Separate models were generated for the full sample, for women, and for men. RESULTS: The final analytical sample was 496 colorectal cancer survivors; 186 women and 310 men. Living remote from the treating hospital was associated with lower physical functioning (coefficient -4.38 [95 % confidence interval -8.13, -0.91]) and role functioning (coeff. -7.78 [-12.64, -2.66]) among all colorectal cancer survivors. In the separate gender models, remoteness was significantly associated with lower physical (coeff. -7.00 [-13.47, -1.49]) and role functioning (coeff. -11.50 [-19.66, -2.65]) for women, but not for men. Remoteness had a significant negative relationship to GHS (coeff. -4.31 [-8.46, -0.27]) for men. CONCLUSIONS: Aspects of QoL are lower among colorectal cancer survivors who live far from their treating hospital. There are gender differences in how remoteness is related to QoL domains. The results of this study suggest that policy makers, service providers, and health care professionals should consider the specific QoL needs of remote colorectal cancer survivors, and be attuned to and prepared to address the differing needs of men and women.

Direct healthcare costs in the first 2 years of life: A comparison of screened and clinically diagnosed children with cystic fibrosis - The Irish comparative outcomes study of CF (ICOS).

BACKGROUND: In July 2011, Cystic Fibrosis (CF) was added to the Newborn Bloodspot Screening Programme in Ireland. The Irish Comparative Outcomes Study (ICOS) is a historical cohort study established to compare outcomes between clinically-detected and screen-detected children with CF. Here we present the results of economic analysis comparing direct healthcare costs in the first 2 years of life of children born between mid-2008 and mid-2016, in the pre-CF transmembrane conductance regulator modulator era. METHODS: Healthcare resource use information was obtained from Cystic Fibrosis Registry of Ireland (CFRI), medical records and parental questionnaire. Hospital admissions, emergency department visits, outpatient appointments, antibiotics and maintenance medications were included. Costs were estimated using the Health Service Executive Casemix, Irish Medicines Formulary and hospital pharmacy data, adjusted for inflation using Consumer Price Index data from the Central Statistics Office. A Negative Binomial regression was used, with time in the study as an offset. RESULTS: Overall participation was 93 %. After exclusion of those with meconium ileus, data from 139 patients, with follow-up to 2 years of age, were available. 72 (51.8 %) were from the clinically diagnosed cohort. In the final model (n=105), clinically diagnosed children had 2.62-fold higher costs per annum (p<0.0001), when adjusted for confounders, including homozygous ΔF508 or G511D mutation, socio-demographic factors and time between diagnosis and first CFRI interaction. CONCLUSIONS: There are few studies evaluating economic aspects of newborn screening for CF using routine care data. These results imply that the benefits of newborn screening extend to direct healthcare costs borne by the State.

Cost comparisons and methodological heterogeneity in cost-of-illness studies: the example of colorectal cancer.

BACKGROUND: Colorectal cancer (CRC) is the third most common cancer worldwide with over 1 million new cases diagnosed each year. Advances in treatment and survival are likely to have increased lifetime costs of managing the disease. Cost-of-illness (COI) studies are key building blocks in economic evaluations of interventions and comparative effectiveness research. We systematically reviewed and critiqued the COI literature on CRC. METHODS: We searched several databases for CRC COI studies published in English, between January 2000 and February 2011. Information was abstracted on: setting, patient population, top-down/bottom-up costing, incident/prevalent approach, payer perspective, time horizon, costs included, cost source, and per-person costs. We developed a framework to compare study methodologies and assess homogeneity/heterogeneity. RESULTS: A total of 26 papers met the inclusion criteria. There was extensive methodological heterogeneity. Studies included case-control studies based on claims/reimbursement data (10), examinations of patient charts (5), and analysis of claims data (4). Epidemiological approaches varied (prevalent, 6; incident, 8; mixed, 10; unclear, 4). Time horizons ranged from 1 year postdiagnosis to lifetime. Seventeen studies used top-down costing. Twenty-five studies included healthcare-payer direct medical costs; 2 included indirect costs; 1 considered patient costs. There was broad agreement in how studies accounted for time, but few studies described costs in sufficient detail to allow replication. In general, costs were not comparable between studies. CONCLUSIONS: Methodological heterogeneity and lack of transparency made it almost impossible to compare CRC costs between studies or over time. For COI studies to be more useful and robust there is need for clear and rigorous guidelines around methodological and reporting "best practice."

Economic evaluation of treatments for children with severe behavioural problems.

BACKGROUND: Disruptive behaviour disorders, including conduct disorder, affect at least 10% of children and are the most common reasons for referral to children's mental health services. The long-term economic impact on society of unresolved conduct disorder can exceed pound sterling 1 million for one individual over their lifetime. AIMS OF THE STUDY: The aim of this study was to estimate, from a multi-sectoral service perspective, the longer term cost-effectiveness of an intensive practice based parenting programme for children with severe behavioural problems as compared to a standard treatment, on a pilot basis. METHODS: A six-month pragmatic controlled trial was conducted involving forty-two families who had been referred to a Child and Adolescent Mental Health Service (CAMHS) because of severe child behavioural problems. The families were randomly allocated into either the standard or intensive, practice-based treatment arms of the trial. At baseline, children were aged 2 to 10 years. The externalising T-scale of the Child Behaviour Check List (CBCL) was used as the primary outcome measure. Follow-up studies were conducted at 6 months and four years post-intervention. At the four-year follow up point the two treatments were subjected to an incremental cost-effectiveness analysis. This analysis was enabled by the collection of cost data with respect to the provision of the intensive and standard treatments in terms of therapeutic contact time and also participants' use of health, special educational and social services usage by means of a Client Service Receipt Inventory. RESULTS: Both groups exhibited improved behaviour at six month follow-up, but only the practice based treatment group showed sustained improvement at the four-year follow-up. An independent t-test revealed a significant difference between group mean scores at four-year follow-up (p = 0.027). The research found a median bootstrap ICER estimate of pound sterling 224 From the cost-effectiveness acceptability curve (CEAC) it was found that 89.6% of the cost-effectiveness plane represented a cost saving over the control intervention while 99.9% represented an improvement in effect. Therefore the intensive intervention could not be said to differ significantly from the control intervention on the basis of costs or effects. However under certain circumstances requiring judgement the intensive intervention could be cost-effective. DISCUSSION: Training interventions for the parents of children with severe conduct disorders currently take the form of a number of behavioural strategies provided by a CAMHS team including the reinforcement of appropriate behaviours and parent record-keeping. An alternative treatment was then considered that included all the aspects provided by the standard treatment (with the exception of agreeing written goals) and also added five-hour sessions of unit-based treatment during which videotaped recording of parent-child interactions were used to give feedback to parents and to provide the opportunity for behavioural rehearsal. The findings of the current research indicate that this alternative treatment may be more cost-effective than the standard intervention under certain circumstances. CONCLUSIONS: It can be concluded on a pilot basis that while the CEAC failed to show a significant difference between costs and effects for the intensive treatment, under circumstances of resource/effect trade offs the treatment could be said to be cost-effective. IMPLICATIONS FOR HEALTH CARE PROVISION, USE AND POLICIES: Health and social care policy and commissioning must be evidence based. Although the analysis in this paper should be considered a pilot due to the small sample size our results suggest that investment by health services and social services in practice-based parenting interventions may well be less costly and more effective in the longer-run than the standard practice involving giving management advice to parents. IMPLICATIONS FOR FURTHER RESEARCH: It would be of interest for further research to continue to follow up the work done in this study with a larger cohort of subjects to further establish the effective components of parenting programmes and their relative costs and benefits both at intervention and over time.

Work-related productivity losses in an era of ageing populations: the case of colorectal cancer.

OBJECTIVE: We investigated patterns and costs of lost productivity due to colorectal cancer in Ireland and examined how rising pension ages affect these costs. METHODS: Data from a postal survey of colorectal cancer survivors (6 to 30 months after diagnosis; n = 159), taken from March 2010 to January 2011, were combined with population-level survival estimates and national wage data to calculate temporary and permanent disability, and premature mortality, costs using the human capital approach. RESULTS: Almost 40% of respondents left the workforce permanently after diagnosis and 90% took temporary time off work. Total costs of lost productivity per person were 205,847 in 2008 assuming retirement at the age of 65. When the retirement age was raised to 70, productivity costs increased by almost a half. CONCLUSIONS: Our study demonstrated the considerable productivity costs associated with colorectal cancer and highlighted the effect of rising retirement ages on costs.