Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Jun 4;16(1):114.
doi: 10.1186/s12955-018-0920-0.

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

Marieke van Leeuwen  1 , Olga Husson  2 , Paola Alberti  3   4 , Juan Ignacio Arraras  5 , Olivier L Chinot  6 , Anna Costantini  7 , Anne-Sophie Darlington  8 , Linda Dirven  9   10 , Martin Eichler  11 , Eva B Hammerlid  12 , Bernhard Holzner  13 , Colin D Johnson  14 , Meropi Kontogianni  15 , Trille Kristina Kjær  16 , Ofir Morag  17 , Sandra Nolte  18 , Andrew Nordin  19 , Andrea Pace  20 , Monica Pinto  21 , Katja Polz  22 , John Ramage  23 , Jaap C Reijneveld  24 , Samantha Serpentini  25 , Krzysztof A Tomaszewski  26 , Vassilios Vassiliou  27 , Irma M Verdonck-de Leeuw  28 , Ingvild Vistad  29 , Teresa E Young  30 , Neil K Aaronson  31 , Lonneke V van de Poll-Franse  31   32   33 ; EORTC QLG
Affiliations

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

Marieke van Leeuwen et al. Health Qual Life Outcomes. .

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.

Keywords: Cancer survivor; Disease-free; Health- related quality of life; Oncology; Survivorship questionnaire.

PubMed Disclaimer

Conflict of interest statement

Ethics approval and consent to participate

The study was approved by the METC-AVL (P16SUR) and has been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Three-dimensional theoretical framework of health. In this framework health is assessed by multiple health indicators
Fig. 2
Fig. 2
Work flow of phase I. TST time since completing last treatment
Fig. 3
Fig. 3
Prisma flow chart of the literature review
Fig. 4
Fig. 4
Relevance ratings of the functional and symptom scales of the QLQ-C30 per time since diagnosis group. The y-axis shows the relevance ratings of the QLQ-C30. A higher score on a scale means that the survivors considered the items of a particular scale more relevant
Fig. 5
Fig. 5
Functional and symptom scales of the QLQ-C30 per time since last treatment category. The y-axis shows the scores on QLQ-C30. On the functional scales a higher score represents a better level of functioning and on the symptom scales a higher score represents a higher level of symptoms
See this image and copyright information in PMC

References

    1. Ayanian JZ, Jacobsen PB. Enhancing research on cancer survivors. J Clin Oncol Off J Am Soc Clin Oncol. 2006;24:5149–5153. doi: 10.1200/JCO.2006.06.7207. - DOI - PubMed
    1. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, De Haes JC. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–376. doi: 10.1093/jnci/85.5.365. - DOI - PubMed
    1. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, Yellen SB, Winicour P, Brannon J. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11:570–579. doi: 10.1200/JCO.1993.11.3.570. - DOI - PubMed
    1. Zhao L, Portier K, Stein K, Baker F, Smith T. Exploratory factor analysis of the cancer problems in living scale: a report from the American Cancer Society’s studies of cancer survivors. J Pain Symptom Manag. 2009;37:676–686. doi: 10.1016/j.jpainsymman.2008.04.011. - DOI - PubMed
    1. Baker F, Denniston M, Zabora JR, Marcellus D. Cancer problems in living and quality of life after bone marrow transplantation. J Clin Psychol Med Settings. 2003;10:27. doi: 10.1023/A:1022801713046. - DOI - PubMed