Elsevier

European Journal of Cancer

Volume 45, Issue 14, September 2009, Pages 2510-2518
European Journal of Cancer

Patients’ and health care professionals’ evaluation of health-related quality of life issues in bone metastases

https://doi.org/10.1016/j.ejca.2009.05.024Get rights and content

Abstract

The objective of this study was to examine the agreement between health care professionals’ (HCPs) and patients’ evaluation of health-related quality of life (HRQOL) issues for cancer patients with bone metastases. A total of 413 patients and 152 HCPs were interviewed across five centres worldwide. Mean scores were almost always higher for HCPs than for patients. Patients and HCPs agreed that four issues affect HRQOL of bone metastases patients profoundly: ‘long-term (chronic) pain’, ‘difficulty in carrying out usual daily tasks’, ‘able to perform self-care’ and ‘able to perform role functioning’. A substantial difference was found with respect to the perceived importance of psychosocial and somatic issues. Patients emphasised psychosocial issues with a particular focus on ‘worry’ about loss of mobility, dependence on others and disease progression, HCPs however rated ‘symptom’ issues as more important, specifically those related to ‘pain’. In conclusion, patients and HCPs agreed that pain and physical/role functioning are important to the HRQOL of cancer patients with bone metastases, but patients also emphasized the importance of psychosocial issues to HRQOL. This information has been an important component in the development of a health-related quality of life questionnaire for patients with bone metastases (EORTC QLQ-BM 22).

Introduction

Health-related quality of life (HRQOL) is a multidimensional construct that encompasses domains such as general health, physical symptoms, physical functioning, emotional well-being, cognition, role functioning, social well-being, sexual functioning and spirituality.1, 2 HRQOL has been shown to be a strong prognostic variable and can be especially important in guiding treatment decisions when alternative approaches demonstrate similar survival outcomes.3, 4, 5 Patients are the best judges of their own HRQOL,6 and correspondingly, HRQOL instruments increasingly recognise the importance of patients’ perspective.

Patients with bone metastases experience their own distinct symptoms and emotional issues when facing advanced cancer and its treatment. While pain is the most common symptom reported by bone metastases patients, it is not yet clear what factors most strongly influence the HRQOL of these patients.7 Barton and colleagues8 conducted a literature review and interviewed patients on what they perceived as the most important HRQOL outcomes of radiotherapy for bone metastases. They confirmed that the impact of metastatic disease and radiotherapy extends well beyond pain. The patient’s quality of life is affected by many other factors; including limited mobility, reduced performance, treatment side-effects and impaired role functioning.8 This study is of valuable contribution to the effort of determining which end-points are most important in evaluating patients’ HRQOL, however it must be considered that this work was completed nearly ten years ago and patients’ preferences may no longer be comparable. No study to date has examined HRQOL outcomes from the health care professional’s (HCP) perspective or with a large population of patients at various stages of their metastatic illness.

Despite the abundance of research in the management of bone metastases, a well-developed disease-specific patient HRQOL instrument was lacking. In collaboration with the European Organization for Research and Treatment of Cancer (EORTC), our team has developed a HRQOL module specific to cancer patients with bone metastases (EORTC QLQ-BM22) that will supplement the EORTC HRQOL core questionnaire for cancer patients (EORTC QLQ-C30).9 The data collection associated with developing this international HRQOL assessment tool provided the opportunity to draw from a large sample of patients and HCPs and conduct an in-depth analysis of their evaluation of different HRQOL domains and specific items of cancer patients with bone metastases.

Section snippets

Methods

A list of 61 HRQOL issues was developed from an extensive literature search and preliminary interviews with patients and HCPs in developing the EORTC quality of life questionnaire for patients with bone metastases (EORTC QLQ-BM 22).9 The list was grouped into six themes: symptoms (13 items), function (15 items), side-effects from treatment (3 items), psychosocial (27 items), treatment expectations (2 items) and others (1 item). These items were formatted into a questionnaire which was

Results

A total of 413 patients (174 males and 239 females) and 152 HCPs were interviewed. Patient median age was 64 years (30-–93 years). Breast (39%), prostate (17%) and multiple myeloma (15%) were the most common primary cancer sites. At the time of the interview, most patients had received radiation (59%), chemotherapy (54%), bisphosphonate treatment (43%) or hormonal therapy (42%). Few patients in the sample had experienced pathological fractures (7%), spinal cord compressions (5%) or

Discussion

It is generally accepted that the patients’ perspective is the gold standard for the measurement of HRQOL and as a result, they should be the primary source regarding what issues are to be included in a HRQOL assessment tool.11. Patients are best able to define and measure their own HRQOL because it is such a subjective experience12; what one patient regards as a severe problem may be considered only minimal by another patient.13 On the other hand, HCPs tend to outline what is typical in any

Conflict of interest statement

None declared.

Acknowledgements

We thank all the patients, health care professionals and research assistants who assisted in the administration of this study. This project was generously supported by grants from the National Cancer Institute of Canada; Deutsche Krebshilfe, Bonn, Germany; and by an unrestricted educational grant from Novartis Oncology. We thank Amanda Hird, Janet Nguyen and Stacy Lue for their assistance in this study.

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