Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire

Health and Quality of Life Outcomes

on behalf of the EORTC QLG¹  John Ramage²  Ingvild Vistad³  Olga Husson⁴  Jaap C. Reijneveld⁵  Linda Dirven⁶  Meropi Kontogianni⁷  Irma M. Verdonck-de Leeuw⁸  Eva B. Hammerlid⁹  Bernhard Holzner^1,10  Sandra Nolte^1,11  Vassilios Vassiliou^1,12  Anna Costantini^1,13  Martin Eichler^1,14  Marieke van Leeuwen^1,15  Lonneke V. van de Poll-Franse^1,15  Neil K. Aaronson^1,15  Andrew Nordin^1,16  Katja Polz^1,17  Paola Alberti^1,18  Anne-Sophie Darlington^1,19  Krzysztof A. Tomaszewski^2,20  Teresa E. Young^2,21  Andrea Pace^2,22  Juan Ignacio Arraras^2,23  Ofir Morag^2,24  Olivier L. Chinot^2,25  Monica Pinto^2,26  Samantha Serpentini^2,27  Trille Kristina Kjær^2,28  Colin D. Johnson^2,29 

[1] ;Department of Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation Trust;Department of Gynecology and Obstetrics, Sorlandet Hospital Kristiansand;Department of Medical Psychology, Radboud University Medical Center;Department of Neurology and Brain Tumor Center Amsterdam, VU University Medical Center;Department of Neurology, Leiden University Medical Center;Department of Nutrition & Dietetics, School of Health Sciences and Education, Harokopio University;Department of Otolaryngology / Head & Neck Surgery, VU University Medical Center;Department of Otolaryngology Head and Neck Surgery, Sahlgrenska University Hospital;Department of Psychiatry and Psychotheraphy, Division of Psychooncology, Innsbruck Medical University;Department of Psychosomatic Medicine Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin Berlin;Department of Radiation Oncology, Bank of Cyprus Oncology Centre;Departmental Psychoncology Unit, Sant’Andrea Hospital, Sapienza University of Rome;Division of Epidemiology and Health Services Research at Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI);Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute;East Kent Gynaecological Oncology Centre;Evangelische Kliniken Gelsenkirchen;Experimental Neurology Unit, School of Medicine and Surgery, University of Milano-Bicocca;Faculty of Health Sciences, University of Southampton;Health Outcomes Research Unit, Department of Geriatrics, Gerontology, and Social Work, Faculty of Education, Ignatianum Academy;Lynda Jackson Macmillan Centre, East & North Hertfordshire NHS Trust including Mount Vernon Cancer Centre;Neuroncology Unit, National Cancer Institute Regina Elena;Oncology Departments, Complejo Hospitalario de Navarra;Oncology Institute, Chaim Sheba Medical Center;Pôle Neurosciences Cliniques, Service de Neuro-Oncologie, Aix-Marseille Université;Rehabilitation Unit, Department of Supportive Care, Istituto Nazionale Tumori – IRCCS- Fondazione G. Pascale;Unit of Psychoncology - Breast Unit, Istituto Oncologico Veneto (IOV)-IRCCS;Unit of Survivorship Research, Danish Cancer Society Research Center;University Surgical Unit, University Hospitals Southampton;

关键词: Cancer survivor;    Disease-free;    Health- related quality of life;    Survivorship questionnaire;    Disease-free;    Oncology;   

DOI  :  10.1186/s12955-018-0920-0

来源: DOAJ

【 摘 要 】

Abstract Backround The number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used. Methods We reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors. Results We identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment. Conclusions Compared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.

【 授权许可】

Unknown