The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care

doi:10.1016/j.ejca.2005.06.022

European Journal of Cancer

Volume 42, Issue 1, January 2006, Pages 55-64

https://doi.org/10.1016/j.ejca.2005.06.022 Get rights and content

Abstract

This study aimed at developing a shortened version of the EORTC QLQ-C30, one of the most widely used health-related quality of life questionnaires in oncology, for palliative care research. The study included interviews with 41 patients and 66 health care professionals in palliative care to determine the appropriateness, relevance and importance of the various domains of the QLQ-C30. Item response theory methods were used to shorten scales. Patients and health care professionals rated pain, physical function, emotional function, fatigue, global health status/quality of life, nausea/vomiting, appetite, dyspnoea, constipation, and sleep as most important. Therefore, these scales/items were retained in the questionnaire. Four scales were shortened without reducing measurement precision. Important dimensions not covered by the questionnaire were identified. The resulting 15-item EORTC QLQ-C15-PAL is a ‘core questionnaire’ for palliative care. Depending on the research questions, it may be supplemented by additional items, modules or questionnaires.

Introduction

Palliative care is defined by the World Health Organization as ‘… an approach that improves the quality of life of patients and their families …’ [1]. It is widely recognised that there is a need for careful evaluation of all aspects of palliative care and for more research in this area. The preferred source of information about patients’ symptoms and functional problems is the patients themselves [2]. However, researchers in this setting need to carefully consider the amount of burden associated with the collection of self-report data from patients with advanced disease and a limited life expectancy. Questionnaires need to be brief, while still capturing the range of issues relevant in a valid and reliable manner.

A large number of patient self-assessment questionnaires has been used in palliative care research 2, 3, but unlike oncology where a limited number of instruments (e.g. the EORTC QLQ-C30 [4] and the FACT [5]) enjoy widespread use, there is less consensus in the palliative care field as to which instruments should be recommended 2, 3.

The EORTC QLQ-C30 has been used in palliative care research 6, 7, 8. It is one of the most widely used instruments in oncology for assessing physical and psychosocial symptoms and functioning of patients with cancer, in both the curative and palliative settings 6, 7, 8, 9. Advantages of the EORTC QLQ-C30 include extensive validation 10, 11, 12, 13, 14, 15, the availability of reference data [16], many published studies for comparison, standardised scoring procedures [17] and translation procedures 18, 19, and evidence concerning interpretation of scores 17, 20, 21. A possible disadvantage of the EORTC QLQ-C30 when used in palliative care is its length (30 items). Additionally, because the questionnaire was not designed specifically for use in palliative care, some of its content may be perceived as inappropriate by patients and health care providers.

Given the many advantages of the EORTC QLQ-C30, the aim of this study was to develop a shortened version of the questionnaire suitable for patients in palliative care. The study had two parts:

1.
Shortening multi-item scales by means of item response theory (IRT) and developing algorithms for scoring the shortened scales on the original response scale metric (reported in detail elsewhere 19, 22, 23).
2.
Interviews with patients and health care professionals to identify scales and/or single items, which were inappropriate or not highly relevant, and therefore could be deleted.

Section snippets

The EORTC QLQ-C30

The EORTC QLQ-C30 was developed by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group [4]. Version 3 of the QLQ-C30 consists of 30 items forming five multi-item scales assessing physical, role, emotional, cognitive, and social function, three symptom scales measuring fatigue, pain, and nausea/vomiting, one scale assessing ‘global health status and quality of life’, and six single items 4, 17.

Summary of part 1 of the project: shortening of scales

The methodology used to shorten scales is described in detail

Participation

Forty-one patients and 66 professionals from 6 countries participated in the study. The participants’ nationalities and demographic and clinical characteristics are given in Table 2.

Interviews

The quantitative results from the interviews are presented in Table 3 and are discussed for each dimension below in the order they appear in the table. Table 4 categorises the qualitative responses to the question ‘Why do you consider this question not or only a little relevant?”

The EORTC QLQ-C15-PAL

The steering group of this project took both the results of the IRT analyses (Table 1) and of the interviews (Table 3, Table 4) into consideration in constructing an abbreviated version of the QLQ-C30, the EORTC QLQ-C15-PAL. The following decisions were taken:

Pain scale. This scale was not modified because it was rated as extremely important, and the 1-item scale could not accurately predict the score of the original 2-item scale without loss of power.

Physical function scale. This 5-item scale

Discussion

This study has shortened the EORTC QLQ-C30 specifically for use in palliative care to a 15-item version entitled the EORTC QLQ-C15-PAL. The QLQ-C15-PAL covers 9 of the 10 most frequent issues identified in the medical records of consecutive patients admitted to specialist palliative care [28]. Concentration/memory problems are missing. These results therefore suggest that the QLQ-C15-PAL has good content validity as a ‘core palliative care questionnaire’ assessing the symptoms and problems for

Conflict of interest statement

None declared.

Acknowledgements

This work was financially supported by the EORTC Quality of Life Group.

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The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care

Abstract

Introduction

Section snippets

The EORTC QLQ-C30

Summary of part 1 of the project: shortening of scales

Participation

Interviews

The EORTC QLQ-C15-PAL

Discussion

Conflict of interest statement

Acknowledgements

J Pain Symptom Manage

Lancet Oncol

Eur J Cancer

J Clin Epidemiol

J Clin Epidemiol

Ann Oncol

J Clin Epidemiol

Eur J Cancer

Eur J Cancer

Quality of life in palliative care: principles and practice

Palliat Med

Assessing health-related quality of life at the end of life

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

The functional assessment of cancer therapy scale: development and validation of the general measure

J Clin Oncol

Self-assessment in cancer patients referred to palliative care: a study of feasibility and symptom epidemiology

Cancer

Quality of life in palliative cancer care: results from a cluster randomized trial

J Clin Oncol

Quality of life measurement: bibliographic study of patient assessed health outcome measures

Br Med J