Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire
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-rep...
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| Format: | Article |
| Language: | English |
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BMC
2018-06-01
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| Series: | Health and Quality of Life Outcomes |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12955-018-0920-0 |
| _version_ | 1811268671982534656 |
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| author | Marieke van Leeuwen Olga Husson Paola Alberti Juan Ignacio Arraras Olivier L. Chinot Anna Costantini Anne-Sophie Darlington Linda Dirven Martin Eichler Eva B. Hammerlid Bernhard Holzner Colin D. Johnson Meropi Kontogianni Trille Kristina Kjær Ofir Morag Sandra Nolte Andrew Nordin Andrea Pace Monica Pinto Katja Polz John Ramage Jaap C. Reijneveld Samantha Serpentini Krzysztof A. Tomaszewski Vassilios Vassiliou Irma M. Verdonck-de Leeuw Ingvild Vistad Teresa E. Young Neil K. Aaronson Lonneke V. van de Poll-Franse on behalf of the EORTC QLG |
| author_facet | Marieke van Leeuwen Olga Husson Paola Alberti Juan Ignacio Arraras Olivier L. Chinot Anna Costantini Anne-Sophie Darlington Linda Dirven Martin Eichler Eva B. Hammerlid Bernhard Holzner Colin D. Johnson Meropi Kontogianni Trille Kristina Kjær Ofir Morag Sandra Nolte Andrew Nordin Andrea Pace Monica Pinto Katja Polz John Ramage Jaap C. Reijneveld Samantha Serpentini Krzysztof A. Tomaszewski Vassilios Vassiliou Irma M. Verdonck-de Leeuw Ingvild Vistad Teresa E. Young Neil K. Aaronson Lonneke V. van de Poll-Franse on behalf of the EORTC QLG |
| author_sort | Marieke van Leeuwen |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-12T21:27:04Z |
| format | Article |
| id | doaj.art-bd2fa22b0abd4936aac49f46b734934a |
| institution | Directory Open Access Journal |
| issn | 1477-7525 |
| language | English |
| last_indexed | 2024-04-12T21:27:04Z |
| publishDate | 2018-06-01 |
| publisher | BMC |
| record_format | Article |
| series | Health and Quality of Life Outcomes |
| spelling | doaj.art-bd2fa22b0abd4936aac49f46b734934a2022-12-22T03:16:08ZengBMCHealth and Quality of Life Outcomes1477-75252018-06-0116111510.1186/s12955-018-0920-0Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaireMarieke van Leeuwen0Olga Husson1Paola Alberti2Juan Ignacio Arraras3Olivier L. Chinot4Anna Costantini5Anne-Sophie Darlington6Linda Dirven7Martin Eichler8Eva B. Hammerlid9Bernhard Holzner10Colin D. Johnson11Meropi Kontogianni12Trille Kristina Kjær13Ofir Morag14Sandra Nolte15Andrew Nordin16Andrea Pace17Monica Pinto18Katja Polz19John Ramage20Jaap C. Reijneveld21Samantha Serpentini22Krzysztof A. Tomaszewski23Vassilios Vassiliou24Irma M. Verdonck-de Leeuw25Ingvild Vistad26Teresa E. Young27Neil K. Aaronson28Lonneke V. van de Poll-Franse29on behalf of the EORTC QLGDivision of Psychosocial Research & Epidemiology, The Netherlands Cancer InstituteDepartment of Medical Psychology, Radboud University Medical CenterExperimental Neurology Unit, School of Medicine and Surgery, University of Milano-BicoccaOncology Departments, Complejo Hospitalario de NavarraPôle Neurosciences Cliniques, Service de Neuro-Oncologie, Aix-Marseille UniversitéDepartmental Psychoncology Unit, Sant’Andrea Hospital, Sapienza University of RomeFaculty of Health Sciences, University of SouthamptonDepartment of Neurology, Leiden University Medical CenterDivision of Epidemiology and Health Services Research at Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI)Department of Otolaryngology Head and Neck Surgery, Sahlgrenska University HospitalDepartment of Psychiatry and Psychotheraphy, Division of Psychooncology, Innsbruck Medical UniversityUniversity Surgical Unit, University Hospitals SouthamptonDepartment of Nutrition & Dietetics, School of Health Sciences and Education, Harokopio UniversityUnit of Survivorship Research, Danish Cancer Society Research CenterOncology Institute, Chaim Sheba Medical CenterDepartment of Psychosomatic Medicine Center for Internal Medicine and Dermatology, Charité - Universitätsmedizin BerlinEast Kent Gynaecological Oncology CentreNeuroncology Unit, National Cancer Institute Regina ElenaRehabilitation Unit, Department of Supportive Care, Istituto Nazionale Tumori – IRCCS- Fondazione G. PascaleEvangelische Kliniken GelsenkirchenDepartment of Gastroenterology and Hepatology, Hampshire Hospitals NHS Foundation TrustDepartment of Neurology and Brain Tumor Center Amsterdam, VU University Medical CenterUnit of Psychoncology - Breast Unit, Istituto Oncologico Veneto (IOV)-IRCCSHealth Outcomes Research Unit, Department of Geriatrics, Gerontology, and Social Work, Faculty of Education, Ignatianum AcademyDepartment of Radiation Oncology, Bank of Cyprus Oncology CentreDepartment of Otolaryngology / Head & Neck Surgery, VU University Medical CenterDepartment of Gynecology and Obstetrics, Sorlandet Hospital KristiansandLynda Jackson Macmillan Centre, East & North Hertfordshire NHS Trust including Mount Vernon Cancer CentreDivision of Psychosocial Research & Epidemiology, The Netherlands Cancer InstituteDivision of Psychosocial Research & Epidemiology, The Netherlands Cancer InstituteAbstract 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.http://link.springer.com/article/10.1186/s12955-018-0920-0Cancer survivorDisease-freeHealth- related quality of lifeSurvivorship questionnaireDisease-freeOncology |
| spellingShingle | Marieke van Leeuwen Olga Husson Paola Alberti Juan Ignacio Arraras Olivier L. Chinot Anna Costantini Anne-Sophie Darlington Linda Dirven Martin Eichler Eva B. Hammerlid Bernhard Holzner Colin D. Johnson Meropi Kontogianni Trille Kristina Kjær Ofir Morag Sandra Nolte Andrew Nordin Andrea Pace Monica Pinto Katja Polz John Ramage Jaap C. Reijneveld Samantha Serpentini Krzysztof A. Tomaszewski Vassilios Vassiliou Irma M. Verdonck-de Leeuw Ingvild Vistad Teresa E. Young Neil K. Aaronson Lonneke V. van de Poll-Franse on behalf of the EORTC QLG 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 Cancer survivor Disease-free Health- related quality of life Survivorship questionnaire Disease-free Oncology |
| title | Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire |
| title_full | Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire |
| title_fullStr | Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire |
| title_full_unstemmed | Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire |
| title_short | Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire |
| title_sort | understanding the quality of life qol issues in survivors of cancer towards the development of an eortc qol cancer survivorship questionnaire |
| topic | Cancer survivor Disease-free Health- related quality of life Survivorship questionnaire Disease-free Oncology |
| url | http://link.springer.com/article/10.1186/s12955-018-0920-0 |
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