PUBLICATIONS

Why is this paper important?
The number of people surviving childhood cancer is growing. Unfortunately, these survivors face increased health risks due to the effects of their cancer treatment, so-called “late effects”. Therefore, to help manage these late effects, it’s important that survivors have access to long-term follow-up care tailored to their specific needs. To make this type of care available across Europe, the PanCareFollowUp consortium developed the PanCareFollowUp Care program. This program aims to provide personalised, evidence-based care for survivors based on their individual health risks. However, actually putting this program into practice can be challenging. For it to be successful, it’s important to understand any obstacles or helping factors that may affect its rollout. This paper discusses the obstacles and helping factors that healthcare providers expect when rolling out the PanCareFollowUp Care program.

What did we do?
We conducted four focus group interviews with 30 healthcare providers working at PanCareFollowUp survivorship care centers in Belgium, the Czech Republic, Italy, and Sweden. In these interviews, open-ended questions were asked about the obstacles and helping factors healthcare providers expect when working with the PanCareFollowUp Care program. Participants included doctors, nurses, psychologists and physiotherapists who regularly work with childhood cancer survivors. We recorded and typed out each interview, then highlighted every obstacle or helping factor that healthcare providers mentioned. Next, we combined similar points into broader groups. Finally, we organized these groups using a framework by Grol & Wensing, which researchers often use to understand how programs are put into practice. This framework looks at six areas that can affect how a program rolls out: the program itself (innovation), the (healthcare) professionals, the patients, social factors, the organization, and economic or political factors.

What is the impact?
Most obstacles were at the organizational level, like not enough staff, time, capacity, and psychosocial support. Other important obstacles were too little knowledge of late effects among healthcare providers outside the late effects follow-up care team, the questionnaire belonging to the program which may be too difficult for survivors, and a lack of money. Key helping factors included motivated healthcare providers and survivors, a skilled hospital team, partnerships with general practitioners and psychosocial care facilities, using international collaboration, and sharing results to gain support from hospital managers. Our findings showed that we should pay special attention to knowledge, capacity, and financial issues, as well as address the psychosocial needs of survivors.

Why is this paper important?
Childhood, adolescent, and young adult (CAYA) cancer survivors face increased risks of long-term health problems. Unhealthy habits—such as not exercising, smoking, poor diet, drinking too much alcohol, and not using sun protection—can further increase these risks. Programs that encourage healthy lifestyle changes can help reduce these risks and are practical to implement. To create effective support and intervention programs, it is important to understand what helps (facilitators) or hinders (barriers) these survivors in adopting healthier behaviors.

What did we do?
We systematically reviewed the existing research on the health behaviour of CAYA cancer survivors. The review included studies of people who were diagnosed with cancer at the age of 25 or younger, who were at least two years after their diagnosis, and who were between the ages of 16 and 50 at the time of the study. The review focused on behaviours such as physical activity, smoking, diet, alcohol consumption, sun exposure and general health habits. Of the 4,529 studies reviewed, 27 met our criteria. The total study group involved 31,905 participants.

What is the impact?

• Physical Activity: Common barriers included fatigue, lack of motivation, time constraints, and current smoking habits. Facilitators were perceived health benefits and personal motivation.
• Smoking: A supportive social environment and poor mental health were associated with increased smoking, whereas increased energy levels were linked to reduced smoking.
• General Health Behaviors: Barriers encompassed unmet information needs and time constraints. Conversely, lifestyle advice and discussions with healthcare professionals served as facilitators.
• Demographic Factors: Women were more likely to be physically inactive but less likely to consume alcohol and more likely to adhere to sun protection recommendations compared to men. Higher education levels were associated with increased physical activity, while lower education levels correlated with higher smoking rates.
• No relevant barriers and facilitators were identified for diet, alcohol consumption, and sun exposure

These results help us understand what affects health habits in CAYA cancer survivors. It identifies challenges and supports that influence their choices, which can help create better programs and guidance to improve healthy habits. It also helps healthcare providers support those most at risk for unhealthy habits.

Why is this paper important?
It is important for survivors of childhood, adolescent, and young adult (CAYA) cancer to have sufficient knowledge of their cancer diagnosis, treatment, and risks for late effects. If survivors have sufficient knowledge, it is easier for them to recognise when they are experiencing symptoms and signs of late effects and need to contact their doctor. Also, it is important for survivors to understand their health risks and what they can do to reduce these risks, for example by improving their lifestyle.

As part of the European PanCareFollowUp project, 40 recommendations were developed for late effects screening. These recommendations instruct survivorship care doctors on the clinical tests that are needed for each of their patients. However, for survivors, these recommendations are very difficult to read. To create informational materials that provide more context and suit the needs of survivors, these recommendations were converted to 45 lay language summaries. The methodology for converting these recommendations to summaries is decribed in this paper.

What did we do?
We aimed for each of the 45 summaries to be Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). Twenty-one doctors, researchers, guideline experts, and professional survivor representatives (the PanCare PLAIN Information Group) collaborated on translating the recommendations to summaries for survivors. First, the PLAIN Information Group decided on the structure and content for each summary, after which the summaries were drafted one by one. Each summary was subjected to two review rounds within the PLAIN Information Group, and one review round with external experts, survivors, and survivors’ parents/caregivers. The final summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care.

What is the impact?
The PLAIN language summaries are meant to increase knowledge in survivors and their families, while they may also inform doctors that provide late effects care. Along with their translations into other languages, the PLAIN summaries were made available on the PanCare website. In addition, a link to the summaries will be provided on the European Network of Youth Cancer Survivors information platform. Lastly, the summaries will be integrated into the Survivorship Passport, a clinical tool which is currently being implemented in many late effects clinics across Europe.

Why is this paper important?
Survivors of childhood, adolescent, and young adult (CAYA) cancer may prevent or reduce the severity of late effects by living a healthy lifestyle, which includes sufficient physical exercise and a healthy diet. However, adopting healthier behaviours is challenging, especially for survivors dealing with barriers such as chronic fatigue or physical limitations. Earlier studies have shown that there is a need among survivors to receive tailored support in improving their lifestyle.

What did we do?
As part of the European PanCareFollowUp project, an online lifestyle coaching program was developed to support survivors in improving their lifestyle. During this program, 58 survivors received four months of individual lifestyle coaching during which they worked on a personal lifestyle goal (for example, lose 3 kg of weight, or train for a 5 km run). Another four months after their last coaching session, the lifestyle coach followed up with the survivors during a reflection session, during which the coach and survivor discussed progress and how the improved lifestyle behaviours could be maintained in the future. The coachings were conducted by certified coaches who recevied additional education about adopting a healthy lifestlyle for survivors of childhood, adolescent, and young adult (CAYA) cancer.

With this study, we aimed to assess the efficacy, or successfulness, of this online lifestyle coaching program. To measure this, we studied how many survivors were able to achieve their personal lifestyle goal within four months of coaching, and how many survivors were able to maintain this goal during the subsequent four months of follow-up. In addition, we studied the effects of this coaching program on survivors’ body mass index (BMI), diet, and physical activity.

What is the impact?
The results showed that online lifestyle coaching is successful in supporting the majority of CAYA cancer survivors in adopting healthier behaviours, as about two-thirds of the participants was able to achieve their personal lifestyle goal within the four months coaching period and sustain it thereafter during thethe additional four month follow-up period. Moreover, coaching supported them successfully in reducing their body mass index (BMI), improving the quality of dietary intake and increasing the amount of physical activity. However, the results suggest that this coaching program was less successful for survivors who had higher BMI’s or were coping with depressive feelings before start of the coaching sessions. These findings can be used to inform future studies on individual / personal online lifestyle coaching by a certified lifestyle trained in coach, and to integrate it into everyday survivorship care.