SURVIVOR QUESTIONNAIRE

Before the clinic visit, the survivor is invited to complete a Survivor Questionnaire, which provides an opportunity to share information about their health, healthcare needs and preferences for care, such as current health and wellbeing, medication use, medical history, family history, lifestyle, social situation and needs and preferences for the clinic visit. Information provided in the questionnaire is used during the clinic visit to tailor care and inform the Survivorship Care Plan.

The Survivor Questionnaire was developed during PanCareFollowUp in a collaboration by HCPs, researchers and survivors, building on nine similar questionnaires already used in long-term Survivorship Care or research, including a holistic tool for Survivorship Care from Lund University, transition questionnaire from the Charité University Hospital Berlin, a Dutch Individual Care Plan for Paediatric Palliative Care and study questionnaires from number of studies (British Childhood Cancer Survivor Study, Swiss Childhood Cancer Survivor Study, Childhood Cancer Survivor Study from North America, St. Jude LIFE study, Dutch Childhood Oncology Group LATER study and Dutch breast cancer study). Additional questions were identified by reviewing available patient-reported PROMIS (Patient Reported Outcomes Measurement Information System) tools,29 the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE)30 and by including the Emotion Thermometer (ET).31

All questionnaires were reviewed to identify whether they contained questions on the eight domains deemed necessary for the Survivor Questionnaire, including: self-reported physical symptoms, self-reported psychosocial symptoms, medication use, medical history (including hospital admissions), family history, social situation, education and employment, health behaviours (including lifestyle), and needs and preferences. Following an extensive evaluation and consensus process, including review by survivor representatives, a final Survivor Questionnaire template was agreed in English and then translated to Dutch, Czech, Italian and Swedish. The Survivor Questionnaires in English are provided below. The Czech, Dutch, Italian and Swedish Survivor Questionnaires are available upon request through PanCare (info@pancare.eu).

After the project ends, the PanCareFollowUp consortium will decide whether it is necessary to adjust the Survivor Questionnaire based on the results of the Care cohort study and the experiences of survivors and HCPs. Should an update be required, PanCare will update the Survivor Questionnaire template in the Replication Manual and make the updated version available on the PanCare website.