Person-centred care for people affected by cancer beyond treatment

Early May, UICC organised a Virtual Dialogue entitled “Supportive and survivorship care for people after cancer – person-centred, not disease-focused.” There are an estimated 32 million people considered “cancer survivors”. This figure is rising, as more people are being diagnosed with cancer – and being treated successfully for it.

Experts from civil society, academia, the medical profession, as well as people living with cancer, looked at the diversity of needs and challenges that follows a cancer diagnosis, discussed why timely access to supportive and survivorship services should be an indispensable component of quality cancer care, and explored what models can be adopted across a variety of settings to better integrate supportive and survivorship care throughout the cancer journey.

People do not experience the adverse effects of cancer and its treatment in the same way. After successful treatment, some people thrive; for many, however, life after diagnosis presents lasting challenges. These challenges can touch upon many different domains: physical, psychological, social, financial and spiritual (for instance, loss of faith or the feeling of being punished by God).

Some people also experience long-term, chronic side effects, while for others they may occur or become problematic years after treatment end, such as fertility issues.

The diverse nature of the challenges faced by people after cancer highlights the critical role that supportive and survivorship services play in the delivery of quality cancer care.

In UICC’s Virtual Dialogue, moderated by UICC President, Prof. Jeff Dunn, AO, discussions included perspectives from patients, service providers, and health systems, with panellists from Australia, Malaysia, Morocco Rwanda and Singapore providing insight into the situation and experiences in their region.

There was a strong emphasis on the significance of focusing on the person, not just their cancer. Panellists agreed that ensuring effective access to supportive and survivorship care demands a shift in perspective: from treating the disease, to treating the person.

Key points of the Virtual Dialogue also included the increased survival rates for some cancers, the challenges of navigating the healthcare system and receiving support; the stigma around cancer diagnoses; and the importance of communication, psychosocial support and improving access to care. The Virtual Dialogue also addressed the cultural attitudes towards cancer and how this affects the accessibility and acceptance of supportive care.

"There's still a bit of a taboo going on. Some people are not comfortable telling people that they have cancer, so they lose out on support that way. At SCAN, we do peer counselling, we have cancer survivors manning our phone lines Tuesday to Friday, 2-5 p.m. So anyone that's that needs help, they can contact us through that number, WhatsApp as well."
– Chris Cheng, President of the Society for Cancer Advocacy and Awareness (SCAN) in Kuching, Malaysia

“We need to recognise that the current health care system in its siloed, complex, specialised form is very hard to get around and navigate. So navigation support is really important. But it's not just that we should improve the navigation of a poor system, we should actually make the system easier to navigate.”
– Bogda Koczwara, Senior Staff Specialist, Department of Medical Oncology, Flinders Medical Centre, Australia

Discussions further highlighted the need to include supportive care as part of mainstream services and to embed survivorship care in policies and regulations. Structural and systemic barriers exist, however, related to traditional healthcare systems.

"In Morocco, the national cancer control plan highlights the importance of the supportive care but it's not really a priority because currently we are focused at the national level on medical coverage. Also, the challenge is to make the oncologist an active prescriber of supportive care. Because they are all aware and convinced about the importance of supportive care but they don't prescribe it, they forget, they are busy treating the disease."
– Majda Gharbi, Director of Association Dar Zhor, Morocco

In Malaysia, peer counselling and survivor sharing sessions aid newly diagnosed patients; the role of traditional healing methods was also considered. Singapore has established a recognised cancer rehab centre, acknowledging the increasing acceptance of cancer rehabilitation services ; however, the country grapples with challenges linked to an aging population and costly drugs due to a small population.

Diane Andrea Ndoli from Rwanda highlighted the gap in supportive care, with most efforts focused on disease awareness and treatment; cultural taboos and a lack of government support also impede progress. Meanwhile, Majda Gharbi from Morocco emphasised the importance of a comprehensive care programme; engaging directly with patients has been a beneficial strategy.

"I think there's also a gap in understanding by these clinicians regarding what constitutes supportive care. Do they know what supportive care means?...So I think if we understood, then we'll come up with ideas or adapt ideas... on how to best help these patients."
– Diane Andrea Ndoli, Clinical Oncologist at the Rwanda Military Hospital and Co-Founder of Rwanda Cancer Relief and Healthy People Rwanda

Overall, the Virtual Dialogue underscored the importance of person-centred care, treating patients holistically, and addressing individual goals beyond disease treatment. The role of research, data collection and understanding local cultural perspectives were emphasised for improving supportive care, as was the value of peer support and advocacy organisations.  

Data collection was specifically highlighted as a significant gap. Not only is there not enough evidence being gathered around what are effective supportive and survivorship services – and most available data is from higher resource settings – but also there is a lack of evidence on the cost effectiveness – the financial benefits, productivity gains and improvement in public health – of investing in supportive and survivorship care.

Lastly, the potential influence of politicians who have personal experiences with cancer was considered pivotal for policy development and the improvement of survivorship care.

VIEW THE RECORDING OF THE VIRTUAL DIALOGUE HERE