The patient journey for people with cancer is changing. However, it is vital that all patients have access to top quality diagnostic and treatment options – and that more focus is placed on rehabilitation. For many, survival and reintegration are part of the journey, but greater support is needed. These were among the issues addressed at the 4^th Cancer Care Conference in Slovenia, which attracted patient advocates, medical professionals, academics and decision-makers. Read the full event report below.

The 4th Cancer Care Conference focused on the obstacles faced by cancer patients in Slovenia in navigating the healthcare system. Exploring the vital need for the reintegration of cancer patients into the workforce, the conference aimed to address how this pivotal aspect of comprehensive rehabilitation could be effectively implemented at a national level, ensuring accessibility for all patients.

Sixteen representatives, encompassing patient advocates, medical professionals, academics, and decision-makers, collectively endeavored to explore solutions to these significant challenges facing today's society. Barbara Stegel, M.Sci., secretary general of the Slovenian Forum of International Research and Development Pharmaceutical Companies, emphasised that the purpose of the conference is to "motivate and maintain space for a dialogue and further improvements”. Good practices are fundamental building bricks and “give hope for better management and planning for the future as well as strengthen the awareness that we already have a lot of good things in our system.” Quality of life and the ability to cope with the disease are significantly influenced by the trajectories within the healthcare system. Therefore, these pathways must be crafted to ensure accessibility and ease of navigation for patients, she emphasised.

Kristina Modic, president of the Slovenian cancer patients’ organizations ONKO-NET and executive director of the Slovenian Association of Lymphoma and Leukemia Patients, L&L, pointed out: "Oncology patients encounter diverse challenges that profoundly impact their quality of life and that of their caregivers. Prolonged sick leave poses a societal burden, yet the current professional rehabilitation capacity falls short of meeting the needs of all those requiring assistance.”

The patient's journey through the healthcare system

Assoc. Professor Tit Albreht, PhD, MSci, MD, researcher at the National Institute of Public Health (NIJZ) said: “The patient's journey aims to delineate the routes and procedures that guide patients from diagnosis and treatment, to living with the disease and coping with the treatment side-effects. It serves as a comprehensive tool for evaluation and meeting patient needs, making it an essential instrument for implementing a patient-centered healthcare system.”

Tanja Španić, PhD, president of Europa Donna Slovenia, highlighted the importance of maintaining a multidisciplinary approach to patient treatment in addition to comprehensive patient-oriented care. Empowerment arises when patients actively participate in health-related decisions. She emphasised that health literacy is vital, along with the availability of support sources during treatment. Patients should have the opportunity to discuss treatment procedures, receive psycho-oncological support, and obtain assistance in the process of returning to work after the conclusion of sick leave.

Ivka Glas, President of EuropaColon Slovenia, called for expedited diagnostic processes for patients with gastrointestinal cancers as well as centralised diagnostics and treatment, to eliminate the need for patients to bear the cost of diagnostic tests. She also highlighted the importance of every cancer patient being treated by a multidisciplinary team: "Patients desire swift initiation of treatment, clearer communication with their doctors, and a shortened path to diagnosis."

Barbara Drmota, a costume designer and an artist, shared her personal journey with cervical cancer, expressing the challenges she faced during diagnosis and treatment. She emphasised the need for clearer and more patient-friendly communication, along with improved access to her oncologist. "Psycho-oncology treatment at the Oncology Institute helped me tremendously, it showed me the way to release my deepest concerns without burdening those closest to me," she pointed out, urging all patients not to give up, and encouraged doctors to integrate more humanity to their scientific approach. She also highlighted the importance of prevention and called out for vaccination against HPV, which could have prevented her cancer if she had been vaccinated.

The presentation of the National Research on Health Literacy in Slovenia (ZaPIS), by the research lead Sanja Vrbovšek, underscored the significant challenge posed by the health literacy levels of Slovenians, particularly those with chronic illnesses. As many as 48% of people in Slovenia have limited overall health literacy, and an even higher percentage, 61%, experience limited navigational health literacy. "Chronic patients exhibited an even lower health literacy level encountering difficulties in understanding and utilising health information. Their navigational health literacy was also lower, reflecting challenges in navigating the healthcare system. Additionally, the research highlighted low levels of digital health literacy and a poor ability to assess the credibility of online health information.

Simona Borštnar, PhD, MD, medical oncologist from the Ljubljana Oncology Institute, elaborated on the complex journey of breast cancer patients, emphasising its unique nature tailored to individual patient needs. Effectively treating patients requires teamwork and collaboration among various professions. Currently, post-treatment monitoring is conducted at the tertiary level, a practice that will become increasingly burdensome with the growing number of successfully treated patients. The speaker called for a necessary change in patient tracking, advocating for a professional implementation that may not always require hospital visits. The goal is to transition patient follow-up from specialised oncology centers to the primary level.

Reintegration of patients back to work and social life

Darja Molan of Europa Donna Slovenia presented the Back to Life project and the association's efforts to adopt an individualised approach to each patient in returning to work. This process should start already during the active treatment phase. She said that “having both positive and negative experiences with different employers is unacceptable, and this issue needs to be addressed at the national level".

Unfortunately, early professional rehabilitation is currently accessible to only a limited number of cancer patients, despite being a fundamental right for individuals with diminished working capacity. This concern was underscored by Tina Rozman, MD, of the University Rehabilitation Institute of the Republic of Slovenia, Soča. "We need to change existing arrangements radically. At the primary and secondary level, the service is not recognised and is only performed individually in agreement with the employer as the payer. In other countries, all employees have the right to support in the return-to-work process, with programmes emphasising prevention and early intervention. I’m optimistic that decision-makers will re-systematise this area as soon as possible. There are several paths available, and I trust we will choose the most appropriate one.”

Ana Vodičar, MSci, from the Institute for Health Insurance Institute of Slovenia, discussed the reasons for escalating rates of cancer-related absenteeism in Slovenia. In 2022 alone, there were 17.1 million lost working days, and recent years have witnessed a growing trend in long-term sick leave. The absenteeism rate in Slovenia is 6.1%, while the average in the European Union is 3-6%. "When addressing measures to control medical absenteeism from a societal perspective, it is crucial to ensure an overall reduction in its burden rather than merely shifting it to other stakeholders or alternative forms of productivity losses."

With increasingly successful cancer treatments, many patients experience longer and improved survival. "Comprehensive and individualised rehabilitation significantly contributes to a higher quality of life, by reducing problems,, alleviating treatment side effects, shortening sick leave, enhancing working capacity, and reducing disability,” said professor Nikola Bešić, PhD, MD, from the Ljubljana Oncology Institute and head of the OREH Programme (O = oncological, REH = rehabilitation). The programme initially focused on breast cancer patients between 2019 and 2022 but is now recruiting colorectal cancer patients.

Pursuing patient-friendly solutions

At a roundtable in the final part of the conference speakers discussed possible short-term and long-term solutions. Kristina Modic pointed out that, given that patients mainly have problems with understanding the healthcare system and their rights, the system needs to be made more patient friendly. "It is of utmost importance to establish an information centre where patients could address all their queries during sick leave and receive high-quality, understandable information in one place, including the calculation of compensation for reduced working hours. This will make it easier for the patient to decide on returning to work and the process would be much easier."

Professor Danica Rotar Pavlič, PhD, MD, from the Association of Family Medicine Doctors agreed that the process of returning to work should be simplified. “As family doctors we have a lot of experience in this area, we can assess which patients will find it easier and which ones more difficult to return to work. Most issues pertain to middle-aged patients who, for various reasons, frequently attempt to prolong their sick leave. That is why we family doctors advocate for the expansion of the OREH project to other types of cancers as well."

What is the possibility of including professional rehabilitation in the programs of patient associations with nutritional, psycho-oncological and physical support, which are also financially supported by the Ministry of Health? Mojca Gobec, MD, from the Ministry of Health: "At the Directorate for Public Health, we have been committed to primary prevention for three decades now and we support NGOs, especially patient associations, which bridge gaps in the health system through their programmes. We would like to integrate these programmes into the system extensively. The OREH programme will also be financed for colorectal cancer. Now is the time to connect all solutions in one network and optimise them even more. I see the National Cancer Control Programme as a platform where this could be developed. In order to achieve this, changes in legislation and political processes will be necessary."

Tit Albreht emphasised that rehabilitation should be provided to patients in a universally accessible manner. "It should not depend on one’s resourcefulness, knowledge level, health literacy or social networks status. The system of comprehensive rehabilitation and returning back to work must have such a low threshold that it reaches nearly everyone, ensuring that no one is overlooked or left out."

Ana Vodičar, when asked about achieving a balance between the health insurance funds and the rights and needs of patients, said the goal should be that "all patients who need compensation due to reduced ability to work receive an amount sufficient to sustain themselves and their families without jeopardising their well-being."

Dean Premik, Msci, MP and co-chair of the Health Committee at the Parliament, who has been advocating for changes in this area for several years, said the system should be structured to initiate preparations for the return to work at the onset of sick leave, even though it might seem distant for oncology patients who are awaiting the completion of medical rehabilitation. He also cautioned that "successful system regulation requires the integration of entities assessing both permanent and temporary incapacity for work with the inclusion of specialists in occupational medicine."

The panellist’s concluded the roundtable with the idea that a collective effort is need in designing new elements of the social system to address the hardships faced by cancer patients.

The 4th Cancer Care Conference was co-organised by the Slovenian Association of Cancer Patient Organizations ONKO NET, the Medical Chamber of Slovenia and the International Forum of Scientific Research Pharmaceutical Companies in Slovenia. It took place on February 6^th via Zoom and in Cankarjev dom in Ljubljana.