A Comparative Analysis of Monthly Out-of-Pocket Costs for Patients with Breast Cancer as Compared with Other Common Cancers in Ontario, Canada

Longo, Christopher J.; Bereza, Basil G

doi:10.3747/co.v18i1.681

Cited by 50 publications

(49 citation statements)

References 11 publications

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“…Out-of-pocket payments and changes to employment were common among participants in this study. While research in cancer care has also identified out-of-pocket payments as an unanticipated consequence of illness for Canadian patients (Housser et al 2013;Longo and Bereza 2011), unlike cancer treatments which are often time-limited, the participants in our study anticipated these costs for the duration of their children's lives. There was also a gendered aspect of this finding, as the majority of participants were women (N = 15) and many reported either decreasing their employment to part-time or leaving the workforce entirely in order to care for their children during times when they were hospitalized or to attend numerous appointments.…”

Section: Discussionmentioning

confidence: 99%

Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System

Baumbusch

Mayer

Sloan-Yip

2018

Journal of Genetic Counseling

142

188

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A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study. Guided by an interpretive description methodology, participants were recruited through online listservs and posting flyers at a pediatric hospital in Western Canada. Sixteen parents (15 mothers and 1 father) participated in in-depth, semi-structured interviews between April 2013 and March 2014. Data were analyzed inductively, generating the main study themes. Findings illuminated the challenges parents' experienced on their child's diagnostic journey-from seeking, to receiving, to adjusting to the rare disease diagnosis. Following diagnosis, gaps, and barriers to services resulted in parents pursuing services that could support their child's unique care needs, which often resulted in out-of-pocket payments and changes to employment. Parents found peer support, both online and in person, to be an effective resource. This study illustrates the common challenges experienced by parents of children with rare diseases as they navigate the healthcare system. Parents' role as "expert caregiver" was rarely acknowledged by healthcare providers, pointing to the need to foster more egalitarian relationships. As well, parents were burdened with the additional role of care coordinator, a role that could be filled formally by a healthcare provider. Lastly, peer support was a key resource in terms of information and emotional support for parents who often begin their journey feeling isolated and alone. Policies and programs are needed that validate the invisible care work of parents and ensure adequate formal supports are in place to mitigate potential sources of inequity for these families. Furthermore, genetic counselors can play a key role in ensuring parents' informational needs are addressed at the time of diagnosis and in connecting families who share common experiences regardless of the rare disease diagnosis.

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Section: Discussionmentioning

confidence: 99%

Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System

Baumbusch

Mayer

Sloan-Yip

2018

Journal of Genetic Counseling

142

188

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“…Studies have shown that few patients who face conditions with potentially high out-of-pocket costs were aware of financial assistance programs. For example, surveys of cancer patients show that only a minority of patients were aware of financial assistance programs or believed the programs were well advertised (Longo & Bereza, 2011;Longo et al, 2006;Longo et al, 2007;Mellace, 2010). Patients may not be fully aware of the cost implications of their condition when they are initially diagnosed and may become more concerned about out-of-pocket costs as they incur an ever-growing amount of expenses.…”

Section: Discussionmentioning

confidence: 99%

“…In addition to the time and inconvenience of travel, rural residents can incur substantial travel-related costs to access and receive needed care. Several studies have described the travel and lodging costs for various health services including cancer care (Cohn, Gooenough, Foreman, & Suneson, 2003;Howard et al, 2014;Lauzier et al, 2011;Lightfoot et al, 2005;Longo & Bereza, 2011;Longo, Deber, Fitch, Williams, & D'Souza, 2007;Longo, Fitch, Deber, & Williams, 2006;Martin-McDonald, Rogers-Clark, Hegney, McCarthy, & Pearce, 2003;Zucca, Boyes, Newling, Hall, & Girgis, 2011), primary healthcare (Wong & Regan, 2009), abortion services (Sethna & Doull, 2007), and prenatal and maternity services (Fry, Cartwright, Huang, & Davies, 2003;Kornelsen & Grzybowski, 2006) in Canada and Australia where residents may live considerable distances away from regional and tertiary care centres. Longo et al (2006) found out-of-pocket costs posed a "significant or unmanageable" financial burden for roughly one fifth (20.4%) of cancer patients surveyed in Ontario, and that the costs related to travel were greater than the costs of all other out-of-pocket costs combined (Longo et al, 2007).…”

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confidence: 99%

Publicly Funded Medical Travel Subsidy Programs in Canada

Mathews¹,

Ryan²

2017

cswr

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Rural residents can incur substantial travel-related costs to receive needed care. In this study, we describe and compare the medical travel programs offered by provincial and territorial governments. We conducted a document analysis of medical travel subsidy programs available in Canada to the general public. Only programs funded and administered by provincial/territorial governments were included. Based on the information that we collected, we determined there were three types of programs. Discount programs (BC) allow eligible patients to receive reduced or waived prices for travel and lodging at designated providers. Non-reimbursement programs (BC, SK) cover the costs of travel and lodging without requiring patients to pay for costs up-front. In reimbursement programs (MB, ON, QC, PEI, NS, NL, YK, NWT, NT), patients generally pay costs up-front and then submit claims for reimbursement after receiving the health service. Rates, co-payments, and maximum allowable amounts vary by program. Our findings indicated that although many provinces and territories offer medical travel subsidy programs, the availability, terms, and conditions vary widely. The study highlights regional disparities that may contribute to inequitable access to care across Canada.Les résidents en milieu rural peuvent cumuler des frais de déplacement substantiels pour se faire soigner. Dans la présente étude, nous décrivons et comparons les programmes de transport pour raison médicale offerts par les gouvernements provinciaux et territoriaux. Nous avons mené une analyse documentaire des programmes de subvention des déplacements pour soins médicaux dont peut bénéficier la population au Canada. Seuls les programmes financés et gérés par les gouvernements provinciaux ou territoriaux ont été retenus. À partir de cette analyse, nous avons déterminé qu’il existe trois types de programmes. Il y a les programmes de rabais (C.-B.), qui accordent aux patients admissibles des rabais ou une dispense sur les frais de voyage et de logement chez des fournisseurs désignés. Il y a les programmes de non-remboursement (C.-B., Sask.), qui couvrent les frais de déplacement et de logement sans que le patient ait à les payer initialement. Enfin, il y a les programmes de remboursement (Man., Ont., Qc, Î.-P.-É., N.-É., T.-N., Yn, T. N.-O., Nt), qui exigent généralement que le patient paie les frais puis soumette une demande de remboursement une fois qu’il a été soigné. Le taux de remboursement, la quote-part et les montants admissibles maximaux varient d’un programme à l’autre. Nous avons constaté que, même si bien des provinces et territoires ont des programmes de subvention des déplacements pour soins médicaux, il y a de grandes différences parmi ceux qui sont offerts et leurs modalités. Cette étude fait ressortir des disparités régionales qui pourraient contribuer aux iniquités en matière d’accès aux soins à l’échelle du Canada

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“…The average costs of breast cancer care to health care systems are similar in all provinces and territories in Canada; however, additional costs for cancer care have been reported in the province of Ontario. Women with breast cancer in the province of Ontario are subjected to higher monthly out of pocket costs for patients such as costs of home health care, vitamins, alternative medicines and family care that are not covered by the provincial health plan (13).…”

Section: Burden Of Breast Cancermentioning

confidence: 99%

Social support as a determinant of health-related quality of life in breast cancer survivors in California.

Rab

2013

JCO

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and Keywords Objective:To evaluate the relationship between perceived social support and HRQOL (physical and emotional) in low SES breast cancer survivors. Methods:A cross-sectional study design was used to measure perceived social support at 18 months and HRQOL at 3 years after breast cancer diagnosis using MOS SS and MOS SF-36, respectively. Multiple regression analyses were used to evaluate the relationship. Results:Menopause at the time of diagnosis, adjunct chemotherapy, adjunct radiation therapy, comorbidities, treatment side effects and depression were negatively associated with PCS scores (p < 0.01). Treatment side effects, anxiety and depression were negatively associated with MCS scores (p < 0.01). Conclusions:Perceived social support was not associated with HRQOL in low SES breast cancer survivors in our study. Menopause, co-morbidities, treatment side effect, adjunct chemotherapy and radiation therapy adversely affect physical HRQOL. Feelings of anxiety, depression and treatment side effects have a negative impact on emotional HRQOL.iv

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A Comparative Analysis of Monthly Out-of-Pocket Costs for Patients with Breast Cancer as Compared with Other Common Cancers in Ontario, Canada

Abstract: KEY WORDSBreast cancer, out-of-pocket costs, self-administered questionnaire, health care funding

Cited by 50 publications

References 11 publications

Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System

Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System

Publicly Funded Medical Travel Subsidy Programs in Canada

Social support as a determinant of health-related quality of life in breast cancer survivors in California.

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