Patient time and out-of-pocket costs for long-term prostate cancer survivors in geographically diverse populations of a large Canadian province, "Beyond the Abstract," by Claire de Oliveira, MA, PhD, et al

BERKELEY, CA (UroToday.com) - Health care costs can represent a substantial financial burden for many patients, even in countries with tax-supported health care systems, such as Canada. Ontario is the most populous province in Canada and all Ontario residents have publicly-funded health care insurance providing coverage for medically necessary services. However, some services (e.g., allied health, complementary and alternative medicines, and medical equipment) are not covered. Some or all of these costs may be covered under employer-based or privately-purchased insurance; otherwise they must be paid by patients. Travel and time costs are usually borne by patients and families.

Prostate cancer (PC) is the most common cancer among men in developed countries. Due to early detection and treatment, there are many long-term PC survivors. These patients may continue to experience adverse effects of treatment and require ongoing costly monitoring and treatment. Many studies have reported direct health care costs for cancer that are paid by health care insurers, either government-funded or private, but few have estimated costs borne by cancer patients, particularly for long-term survivors. Thus, the purpose of this analysis is to estimate out-of-pocket (OOP) and time costs, their predictors, and their relationship to financial income, among a cohort of long-term PC survivors in Ontario, Canada.

Study Methods

We selected surviving patients from the Ontario Cancer Registry, a population-based tumour registry, who were initially diagnosed with PC in 1993-1994, 1997-1998, and 2001-2002, and resided in 3 counties: Toronto and York, representing urban and suburban areas in southern Ontario respectively, and Sudbury, a city/county in northern Ontario. Thus our sample was geographically-diverse and included survivors of 2 to 13 years post-diagnosis at the time the study was conducted.

We obtained the pathology reports of these patients to identify their referring physicians. For each physician, we prepared a list of his or her patients and personalized letters introducing the study. Physicians who were interested in participating in the study signed the letters and sent us contact information for their patients. Patients could contact us, or we phoned them.

Patients who provided verbal consent to participate were mailed the consent form, a questionnaire booklet, and a stamped addressed envelope for their return. The booklet included a socio-demographic questionnaire, a checklist based on the Charlson comorbidity index, a cost questionnaire, and four quality of life instruments including the Prostate Cancer Index (results reported elsewhere). We also conducted chart reviews at the offices of the referring physicians. Data collected included tumour grade and stage at diagnosis, PC treatments, and dates of disease progression and metastases.

The cost questionnaire asked about OOP costs associated with PC care during the previous 6 months. These included medical costs for health professional visits, and non-medical costs such as travel, parking, food, and accommodation. OOP costs also included medication and dispensing fees, equipment, home care, and hired household help. We also asked for travel time and waiting time for patients and accompanying caregivers, and time lost by patients from chores, paid employment, and leisure. We doubled all 6-month costs and times to obtain an estimate of annual costs.

Statistical Analyses

Our main outcomes of interest were annual time and OOP costs (2006 Canadian dollars) associated with PC care. We compared costs across clinical and socio-demographic characteristics and examined the association between costs and 4 groups of predictors (patient, disease, system, symptom) using 2-part regression models.

Results

Our cohort consisted of 585 patients with a mean age of 73 years; 77% were retired, and 42% reported total annual incomes less than $40,000.

The mean annual total cost was $1,037. Most of these costs were for time, and the mean annual time cost was $838, ranging from $0 to $52,386 across individuals. Nearly 30% of patients incurred no time cost at all, and 75% reported time costs of $300 or less. Mean OOP costs were $200 and ranged from $0 (43% of patients) to $20,760. Most demographic variables did not significantly affect costs. In general, costs decreased with age; however, OOP costs were highest for the youngest and oldest age groups (p=0.03). Patients with metastatic disease incurred high time costs (mean= $3,159) and total costs ($3,333) compared to non-metastatic patients (p < 0.05). The most significant findings with respect to predictors of cost (p < 0.001) were higher costs in patients with poor urinary and bowel function.

Conclusions

Our study shows that long-term PC survivors have generally low OOP costs associated with PC care, but more substantial time costs. Furthermore, for approximately 16% of patients with an annual income below $20,000, PC-related time and OOP costs could represent 10.4% of their income (assuming $10,000 average income).

The relationship between urinary and bowel function and high costs deserves consideration. PC treatment-related sexual and urinary adverse effects persist for many years post-diagnosis, and significantly affect quality of life. Our study indicated that they may also be associated with higher costs. Causal relationships cannot be determined from these associations using cross-sectional data, but patients with worse urinary, bowel, or sexual function would require doctor visits, medication, supplies such as incontinence pads, and lost leisure time to deal with their problems.

Our main potential limitation is our final sample size. Our method of recruitment was novel, but laborious and costly, and many patients and physicians could not be located so many years after the initial cancer diagnosis and treatment. We identified 1 961 eligible patients for this study, but only 30% returned completed questionnaires and had their medical charts reviewed and were included in this analysis. As with any voluntary research study, the final sample of consenting survivors may have been biased towards patients who were healthier and more satisfied with treatment.

Nonetheless, our efforts resulted in recruitment of a population-based sample of community-dwelling long-term survivors of PC residing in three geographically 3 areas of a large province in Canada. Compared with patients that we recruited from a single cancer centre in Toronto in our previous studies, these patients were older, and had somewhat lower education, and probably lower income, and were better-representative of the overall population of PC survivors.

Conclusions and Implications for Cancer Survivors

PC is the most common cancer among men in developed countries and has a long survivorship period. Our findings suggest that time and OOP costs are generally manageable for long-term PC survivors but can be a significant burden mainly for lower income patients. Furthermore, while many studies have documented the effects of PC-specific, treatment-related dysfunctions on quality of life, our study showed that these also represent sources of expense for patients.

Written by:
Claire de Oliveira,a, b Karen E. Bremner,b, c Andy Ni,d Shabbir M.H. Alibhai,b, c, e, f Audrey Laporte,b, f and Murray D. Krahnb, c, e, f, g as part of Beyond the Abstract on UroToday.com. This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.

aDepartment of Social and Epidemiological Research, Centre for Addiction and Mental Health, 33 Russell Street, Room T414, Toronto, Ontario, M5S 2S1, Canada
bToronto Health Economics and Technology Assessment Collaborative (THETA), University of Toronto, Toronto, Ontario, Canada
cToronto General Hospital, University Health Network, Toronto, Ontario, Canada
dDepartment of Biostatistics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
eDepartment of Medicine, University of Toronto, Toronto, Ontario, Canada
fInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
gFaculty of Pharmacy, University of Toronto, Toronto, Ontario, Canada

Patient time and out-of-pocket costs for long-term prostate cancer survivors in Ontario, Canada - Abstract

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