Abstract
BackgroundMultiple myeloma, the second most common haematological cancer, remains incurable. Its incidence is rising due to population ageing. Despite the impact of the disease and its treatment, not much is known on who is most in need of supportive and palliative care.This study aimed to (a) assess symptom severity, palliative care concerns and health-related quality of life (HRQOL) in patients with multiple myeloma, and (b) to determine which factors are associated with a lower quality of life. We further wanted to know (c) whether general symptom level has a stronger influence on HRQOL than disease characteristics.MethodsThis multi-centre cross-sectional study sampled two cohorts of patients with multiple myeloma from 18 haematological cancer centres in the UK. The Myeloma Patient Outcome Scale (MyPOS) was used to measure symptoms and concerns. Measures of quality of life included the EORTC QLQ-C30, its myeloma module and the EuroQoL EQ-5D. Data were collected on socio-demographic, disease and treatment characteristics and phase of illness. Point prevalence of symptoms and concerns was determined. Multiple regression models quantified relationships between independent factors and the MyPOS, EORTC global quality of life item and EQ5D Index.ResultsFive-hundred-fifty-seven patients, on average 3.5 years (SD: 3.4) post-diagnosis, were recruited. 18.2 % had newly diagnosed disease, 47.9 % were in a treatment-free interval and 32.7 % had relapsed/progressive disease phase. Patients reported a mean of 7.2 symptoms (SD: 3.3) out of 15 potential symptoms. The most common symptoms were pain (72 %), fatigue (88 %) and breathlessness (61 %). Those with relapsed/progressive disease reported the highest mean number of symptoms and the highest overall palliative care concerns (F = 9.56, p < 0.001). Factors associated with high palliative care concerns were a general high symptom level, presence of pain, anxiety, low physical function, younger age, and being in the advanced stages of disease.ConclusionPatients with multiple myeloma have a high symptom burden and low HRQOL, in the advanced and the earlier stages of disease. Identification of patients in need of supportive care should focus on assessing patient-reported outcomes such as symptoms and functioning regularly in clinical practice, complementary to traditional biomedical markers.Electronic supplementary materialThe online version of this article (doi:10.1186/s12885-016-2410-2) contains supplementary material, which is available to authorized users.
Highlights
Multiple myeloma, the second most common haematological cancer, remains incurable
The analysis for this study consists of two cohorts of patients that were recruited 1 year apart – one cohort for validating a new questionnaire to measure disease-specific quality of life in multiple myeloma (n = 380 myeloma patients) and one cohort for a longitudinal study, determining the impact of physical and mental symptoms on quality of life, and enrolling patients with multiple myeloma that were either newly diagnosed or had received treatment before (n = 235 myeloma patients)
Most participants were in a treatment-free interval; a mean 42.5 months post diagnosis; 139 (25.5 %) patients had been living with myeloma 5 years or longer
Summary
The second most common haematological cancer, remains incurable. Despite the impact of the disease and its treatment, not much is known on who is most in need of supportive and palliative care. This study aimed to (a) assess symptom severity, palliative care concerns and health-related quality of life (HRQOL) in patients with multiple myeloma, and (b) to determine which factors are associated with a lower quality of life. Haematological malignancies belong to the most common cancers worldwide [1]. Multiple myeloma is the second most common haematological malignancy with an incidence of 3.29 to 4.82 per 100,000 individuals per year worldwide [2]. Since multiple myeloma remains an incurable disease, life expectancy is limited. Symptoms may persist into treatment-free intervals [6], added onto which treatment-related toxicity further impacts on health-related quality of life (HRQOL) [7, 8]
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