Patients’ and health care professionals’ evaluation of health-related quality of life issues in bone metastases
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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Bone Metastases
2019, Abeloff’s Clinical OncologyBone metastases radiotherapy: Multi-approaches literature review
2018, Cancer/RadiotherapieEffect of denosumab versus zoledronic acid in preventing skeletal-related events in patients with bone metastases by baseline characteristics
2016, European Journal of CancerCitation Excerpt :Patients with bone metastases are at increased risk for skeletal complications, including pathologic fracture, spinal cord compression, and radiation or surgery to the bone, collectively termed skeletal-related events (SREs) [1]. SREs are associated with not only substantial morbidity but also greater mortality, increased pain, decreased quality of life, and increased treatment costs [2–6]. Bone-targeting agents have been shown to reduce SREs associated with bone metastases/lesions in patients with advanced solid tumours or multiple myeloma [6–11].
Perspectives of the multidisciplinary team on the quality of life of patients with cancer of the head and neck at 2 years
2015, British Journal of Oral and Maxillofacial SurgeryCitation Excerpt :Other teams may differ in both these regards. The wide range of estimates for each situation, both for the specific domains (Table 2) and overall QoL (Table 3) echoes the findings of previous studies, and suggests that clinicians are likely to be more familiar with traditional endpoints such as survival and toxicity, than specific HRQoL outcomes, and even when such data are available, are unsure how to use them within a consultation.15–18 This variation was consistent across the situations and the various domains (Table 4), and there were no significant differences between consultants and other participants.
The incidence and clinical impact of bone metastases in non-small cell lung cancer
2015, Lung CancerCitation Excerpt :For those patients with advanced disease bone is a common site of recurrence, occurring in 20–40% of patients [1–4]. Once bone metastases (BM) occur, around 80% of patients will experience significant pain [3,5–7] and reduced quality of life [8,9]. In addition over 60% will develop skeletal-related events (SREs) —defined as surgery or radiotherapy to bone; pathological fractures; spinal cord compression or hypercalcemia of malignancy [3,5,10].