SURVIVOR QUESTIONNAIRE

Before the clinic visit, the survivor is invited to complete a Survivor Questionnaire, which provides an opportunity for them 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 healthcare

First page of survivorship questionnaire (female) in English

professionals (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, 1 the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) 2 and by including the Emotion Thermometer (ET).3

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. 4 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).

In the future, should an update be required for the Survivor Questionnaire, PanCare will make the updated versions available here on the PanCare website.

Disclaimer

PanCare strives to provide accurate and complete information that is up-to-date as of the date of publication.

No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information.

The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.

1 PROMIS® (Patient-Reported Outcomes Measurement Information System®) https://www.promishealth.org/57461-2/

2 Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) https://healthcaredelivery.cancer.gov/pro-ctcae/overview.html

3 Harju E, Michel G, Roser K. A systematic review on the use of the emotion thermometer in individuals diagnosed with cancer. Psychooncology. 2019;28(9):1803-18.

4 van Kalsbeek RJ, et al. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer. European journal of cancer 2022;162:34-44.