Background: Cancer is a leading cause of death in the world and the fourth leading cause in Malaysia. A widening disparity in cancer burden has emerged between high and low-middle income countries. A similar disparity due to differential access to cancer care between affluent and deprived groups is likely to exist within developing country too. We assess this inequality by estimating the number of deaths due to cancer that would be avoidable if all patients had access to the best available care in Malaysia, a high middle income country. Methods:The number of avoidable deaths is the difference between the number of deaths estimated by GLOBOCAN12 for Malaysia (which is consistent with published estimates on cancer survival), and the expected number of deaths if all patients with Breast Cancer (BC) had experienced the age-ethnic-stage specific survival outcomes observed in a leading private cancer centre in Malaysia. Data on age-ethnic-stage composition of the general BC population were from local cancer registry and public hospitals providing safety net cancer services. Findings:Of the 2312 excess deaths due to BC, 2048 (88%) were avoidable. Of these avoidable deaths, 1167 (57%) were attributable to late stage presentation while 881 (43%) were due to lack of access to optimal treatment. Sensitivity analyses however show that the 88% avoidable deaths may be as low as 50%, taking into account differences in socio-economic status, over-diagnosis and lack of very long term survival data.Interpretation: The huge number of avoidable deaths highlights the high cancer mortality rate among the deprived and the vast disparity in access to cancer care between the rich and poor within Malaysia, which mirrors the global cancer divide between rich and poor countries.Cancer care system that deliver such disastrous and inequitable outcomes is clearly under-performing. It is in urgent need of reform.
Background: Patient are increasingly expected to engage in their own care. However, patients with limited health literacy often struggle with this. The expectation of patients' engagement in health care decisions by their healthcare providers likely increases the burden that cancer patients are already experiencing following a life-changing diagnosis. Involving patients with cancer in medical decision-making requires them to have an adequate understanding their disease and treatment options. Limited health literacy poses a barrier to patient engagement in their own care, contributing to health disparities and poorer cancer outcomes. Aim: Our primary objective was to determine levels of health literacy among patients with cancer and the extent of its association with patient preference for care. We also sought to identify sociodemographic and clinical characteristics associated with limited cancer health literacy. Methods: As part of a larger prospective cohort study, N = 345 adult cancer patients attending a large, university-affiliated outpatient oncology clinic were recruited using consecutive sampling. Face to face interviews were conducted using questionnaires. Instruments used included the 30-item Cancer Health Literacy Test (CHLT-30), and the Patient-Practitioner Orientation Scale (PPOS) to determine patient preference for shared care. The relationship between cancer health literacy and patient preference for shared care was examined using bivariate analysis, with logistic regression used to identify predictors. Results: Mean patient age was 60.0 ± 11.6 years. A greater female preponderance was observed (69.4%), with over half of patients indicating secondary school completion (51.6%). Up to 79.3% of patients reported a monthly household income of less than RM 4000 (approximately USD 1000), placing them in the bottom 40% of household incomes in Malaysia. A total of 59.1% of patients (n = 204) in this sample were found to have limited cancer health literacy, with an average score of 14.40 ± 4.04 out of a full score of 30. Patients with limited cancer literacy were 1.69 times (95% CI 1.42-2.03) less likely to prefer active participation in their care. Conclusion: Rates of limited cancer literacy in this sample (59.1%) appear to be at least three times higher than prevailing rates in high resource countries with established cancer control programs such as the United States (18%). One out of every two patients with cancer in this study were found to possess limited health literacy, making this a significant issue particularly given its association with lesser patient preference for shared care. This study marks an important first step toward increasing health literacy among patients with cancer and empowering patients to participate in their care, which may help mitigate the impact of disparities such as lower educational and socioeconomic levels traditionally associated with poorer cancer outcomes.
Background: Cancer survivorship as an area, which focuses on the health and life of an individual following cancer diagnosis and treatment is increasingly being recognized as an important component of the cancer control continuum. Advances in breast cancer detection and treatments have resulted in a growing number of patients experiencing a breast cancer diagnosis at an age when career plays an important role in their lives. Yet, very little is known on how breast cancer affects employment and return to work among survivors, particularly in low- and middle-income settings. Aim: This qualitative study aims to gain an in-depth understanding on employment challenges and motivators/barriers in return to work faced by breast cancer survivors in an upper-middle income Asian setting. Methods: Eleven focus group discussions (FGDs) were conducted with breast cancer survivors representing various ethnicities and socioeconomic backgrounds in Malaysia. Patients diagnosed one to two years prior to the study were recruited from a general public hospital, a public academic hospital and two private hospitals. Data from the FGDs were examined using thematic content analysis from the NVivo software. Results: The major themes relating to impact of cancer diagnosis on employment were “decreased work ability”, “job loss”, “long absenteeism” and “hostile work environment”. Coping strategy themes frequently mentioned to offset income loss from employment changes were “savings”, “part-time work” or financial support from “family/friends” or “social security”. However, participants were quick to highlight the insufficiency and unreliability of these strategies to cope financially in the long run. When describing their decision in choosing to return to work, participants mentioned themes such as “need money”, feeling “more happy” or having a “supportive work environment”. Nonetheless, participants emphasized the “discrimination” they faced in finding a job after active treatment. Specifically, participants' frequent need to take time-off from work for their cancer follow-ups as well as their older age were perceived as disadvantages in seeking employment when compared with younger, healthy applicants. Conclusion: It is evident that a breast cancer diagnosis severely disrupts employment and return to work in middle income settings. Multisectoral interventions are urgently required to improve the employment status of our cancer survivors, including legislative reforms to prevent discrimination. Programs supporting employment and return to work among cancer survivors should be developed and integrated in the provision of a holistic survivorship care.
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