We used a multi-stakeholder approach of parents and PPTs in phase 1 (survey) and PPTs across all settings (primary care, shared care center, and rehabilitation center) in phase 2 (co-creation sessions) see Table 1.

In total, 98 parents and 177 PPTs participated in the survey. For characteristics of participants of the survey, see Table 1.

In total, 267 out of 275 (97%) participants (parents and PPTs) expressed added value in the development of a knowledge platform and care network. In total, 94 out of 98 (96%) of the parents indicated that it is important that the local PPT is aware of not only the pediatric oncological condition but also the side effects and late effects of oncological treatment affecting exercise (mean 9.0 on a scale of 1–10). Parents expected to be referred from the Princess Máxima Center to a local PTT with expertise and experience in pediatric oncology (7.7 on a scale of 0–10). Eighty percent of the parents are willing to travel 15–30 min from home to a local PPT. For further outcomes, see Table 2.

Results from the questionnaire for PPTs are presented in Table 3. Forty percent of the PPTs mentioned they do not have sufficient knowledge to be able to provide a high-quality therapy (on a scale of poor, insufficient, sufficient, more than sufficient, excellent, see Table 3). PPts mentioned the lack of opportunities for education to gain more knowledge in the field of pediatric oncology and physiotherapy care. Thirty percent of the PPTs indicated that they needed education to become more competent in treating a child with the diagnose childhood cancer, and fifteen percent of the PPTs indicated that experience is important to become more competent in the field of pediatric oncology. Also, an up-to-date knowledge platform (8.3%), intervision and peer review in the professional field (6.3%), and case management (4.1%) were mentioned to be important. Other topics PPTs provided in response to the final open-ended question asking about suggestions for the knowledge hub were (1) knowledge about specific exercise physiology and treatment in children with childhood cancer (36.5%), (2) pediatric oncology in general (30.4%), (3) red flags (11.5%), and (4) psychological counseling (7.4%). In addition, the effects of chemotherapy on the child (6.1%), side effects of medication (5.4%), and information about different prognoses (3.4%) were mentioned to a lesser extent.

Furthermore, availability of online e-learnings, physical education, and organization of network meetings were mentioned. Regarding the accessibility of KinderOncoNet, the establishment of an active forum for easy contact with colleagues, acceptable costs, and a not too high investment of time to be part of the network were mentioned. Moreover, participation in the network should be reimbursed by health insurance companies, and CME points should be granted for the education.

The co-creation sessions were attended by n = 31 (session 1) and n = 25 (session 2) PPTs of the in total 34 stakeholders in the project (n = 19 pediatric physiotherapists from primary care settings, n = 6 from shared care center, and n = 9 from rehabilitation center) (see Table 1).

The theme of the first’s co-creation meeting was “find, connect, and trust” and aimed to identify the needs in terms of collaboration and findability within the future care network, KinderOncoNet. Topics of accessibility, privacy, and communication capabilities were also discussed. In the first co-creation session, it was indicated that PPTs outside the Maxima need good access to professionals within the Princess Maxima Center for consultation and patient discussions. Moreover an easy and secure way to share confidential information and files would facilitate collaboration across settings.

Secondly, trust is very important. Thresholds to treat a child with childhood cancer should be removed. It is therefore important that referrals are made to each other with additional information, knowledge, and clear indications and that people know the limits of their own competences and knowledge.

The expectations of KinderOncoNet lay mainly in the creation of an accessible network in which it is easy to communicate, where colleagues can easily be found and where up-to-date knowledge and training are offered. Connection to KinderOncoNet should not take too much time, be affordable, and should have a form that ensures an active connection.

The theme of the second in-person co-creation meeting was “knowledge and expertise.” Based on the questions of the survey, the following topics were further explored and discussed: “what is needed to improve capacity and competence?,” “how to maintain knowledge and expertise?,” and “which educational needs and what content and form of educational needs within the care network are necessary?” Also, the conditions to participate in KinderOncoNet were determined. During the second co-creation meeting, the referral from care from the Princess Maxima Center to care close to home, so the transfer between different institutions, was mentioned to be a very important subject. All children diagnosed with childhood cancer start their treatment in the Princess Maxima Center, and all complex care takes place in Utrecht. Less intensive care is provided in the shared care centers closer to home. As diagnosis is established in the Princess Máxima Center, and treatment is started there; the transfer to another institution for further treatment is difficult. The idea from the participants was to initiate this familiarization and transfer early in the treatment process, so that child and caregivers are already familiar with professionals closer to home. So finding a PPT close to home from the beginning of the therapy would be helpful. Appointing a case manager could improve the transition and communication. Thereby, it was found to be important that different institutions can reinforce and complement each other in sharing care, to get the right care in the right place.

About education and gaining knowledge, it was often mentioned that both physical and online trainings are desirable. The content of these trainings can cover general knowledge about pediatric oncology, related treatments, fatigue symptoms, and cognitive, traumatic, and psychosocial support. In addition, it was mentioned that annual trainings with the possibility of deepening through e-learnings is needed. During the physical training, there should also an opportunity to find each other, to connect, and to network with each other; attendance at physical days may be mandatory to encourage active membership. Finally, the care network and knowledge platform should be accessible to parents, children, and survivors, so they can find a competent professional close to home and be expanded to other allied healthcare professionals (dieticians, occupational therapists, and speech and language therapists) and psychosocial disciplines. The result of this study is a prototype of the knowledge platform KinderOncoNet based on the needs of the participants in this study.