Early detection of disease and advances in cancer treatment have led to a growing population of people living with, through and beyond cancer in Malaysia. A cancer diagnosis brings a series of challenges, and the needs of individuals with cancer do not vanish once treatment is completed.
Cancer survivorship to this end, focuses on the overall health of individuals from the point of diagnosis with cancer until the end of their lives, encompassing their physical, psychological, emotional, spiritual, and economic wellbeing.
However, an international report by The Economist not long ago had indicated that Malaysia scored very poorly in the area of providing ‘post-cancer’ services. Central to this theme is that the delivery of cancer care in the nation is still heavily focused on provision of cancer treatment alone, with limited services for those who have completed treatment and need support to live well beyond cancer.
In order to improve the experience, quality of life and functional outcomes of people living with cancer, it is crucial that we have an understanding of their (unmet) needs.
While prior studies have shown that cancer survivors have specific health-related needs that remain unmet, including access to symptom management, complementary medicine, and sexual counselling, emerging evidence also suggest that these unmet needs tend to extend to broader non-health domains.
This is indeed supported by our own research among Malaysians, which showed that apart from the need for supportive care to deal with the side effects of cancer and its treatment, patients also have unmet informational needs, psychosocial needs, financial needs and employment needs including job security, cancer leave and battling stigma and workplace discrimination.
Detailed knowledge of the issues faced by survivors, their needs, and the extent to which these are met by current services is critical in guiding where to focus our limited healthcare resources and enable planning of appropriate interventions.
For instance, among the glaring needs of people living with cancer that have been reported to remain largely unmet in the Malaysian setting is the need for psychosocial support.
In view of the strain that the Covid-19 pandemic has placed on the Malaysian health care system, a pragmatic alternative that warrants serious consideration include widening access to peer supporters who are guided by non-governmental organisations, professional societies, and also faith-based organisations.
Likewise, the financial burden resulting from non-health expenditures emphasise the necessity for affected individuals to be also directed to suitable social welfare support systems, financial assistance, and work or job scope adjustments.
In a nutshell, the establishment of cancer survivorship services in the nation should address wider aspects of well‐being where people with cancer are viewed holistically. As such, we cannot afford to disentangle the health and non-health related needs following cancer as they intersect and influence each other, collectively impacting the wellbeing of cancer survivors.
Although the non-health domains fall beyond the scope of health care systems per se, there is an urgent need to foster collaborations with external stakeholders. From a policy perspective, it may be necessary that the health sector takes the leadership in convening the relevant stakeholders for the planning of cancer survivorship care and coordinating the provision of services. Importantly, opportunities for partnerships with private industries should be explored.
Last but not least, we fully concur with the slogan “Nothing about us without us”, which is used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy.
Understanding the needs of cancer patients will improve their quality of life, reduce the lost productivity costs among survivors and reduce the substantial long-lasting economic burden borne by the cancer-stricken households.
Hence, a concerted effort to create awareness among the cancer survivors to give voice to their needs and the advocacy role played by the non-governmental organisation and multi-stakeholder collaboration will be useful to step up survivorship care in Malaysia.
Dr Nur Nadiatul Asyikin and Dr Nithiya Sinarajoo are trainees in public health medicine, and Dr Nirmala Bhoo-Pathy is a public health medicine specialist in cancer control and cancer policy, and professor of epidemiology at the Faculty of Medicine, University of Malaya.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
