Living with multiple myeloma: experiences of patients and their informal caregivers.

GOALS OF WORK: The purpose of this study was to explore the experience of living with myeloma after completion of treatments in patients and their informal caregivers. PATIENTS AND METHODS: Qualitative interviews were carried out with 20 patients living with myeloma and 16 of their informal caregivers (mostly spouses), asking them through semi-structured interviews to talk about the effects of myeloma on their lives, issues and concerns, their supportive care needs and how they were coping in everyday life. MAIN RESULTS: Key findings indicate the significant impact myeloma has on patients' and caregivers' emotional, role, social and work-related areas of life. While patients seemed less engaged with their illness, their informal caregivers were providing practical and emotional support to patients almost exclusively, often by neglecting their own needs. This increased engagement with the informal caring often led to experiences of a heightened illness burden and difficulties with coping. Both patients and caregivers had significant fears and uncertainty about the future, with myeloma being described as a 'time bomb'. Both patients and caregivers were concealing stressful situations related to the illness from each other in an effort to protect them, although this resulted in isolation. CONCLUSIONS: While health professionals' attention has been concentrated in helping patients to get through treatments, it is imperative that psychosocial rehabilitation is offered also to those who survive many years after diagnosis and are off treatments. Caregivers are particularly vulnerable to the high demands of caring for myeloma patients, and a more concerted action by health professionals should be directed to them.

Understanding distress and distressing experiences in patients living with multiple myeloma: an exploratory study.

PURPOSE: The aim of this study was to gain greater insight into the symptoms and distressing experiences of patients living with myeloma. METHODS: A qualitative interview evaluation of distressing experiences in patients with myeloma, following a grounded theory approach, was used. Sampling was purposive, with particular attention to diversity in age and ethnic minority patients. RESULTS: Fifteen patients were interviewed. Key findings suggest that (a) many individual symptoms were not considered as particularly distressing beyond the acute phase of the disease and its treatment, except when they occurred in a context that was threatening to the patients; (b) visible symptoms that showed to other people one's disease condition may be particularly distressing, and (c) the conditioning phase of the transplant was particularly stressful and a violation to one's body, described by some patients as 'being somehow dead'. CONCLUSION: The personal meaning ascribed to symptoms and treatments as well as the context in which they occur are important determinants of distress. Such patient meanings and contexts should be explored by health professionals in-depth, in order to prepare patients for the experience and support them more fully.

Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners.

PURPOSE: The aim of this project was to identify the nature and range of needs, as well as levels of quality of life (QOL), of both patients living with myeloma and their partners. METHODS: A cross-sectional survey was used, recruiting patients and their partners from 4 hospitals in the United Kingdom at a mean time post-diagnosis of 5 years. Patients completed a scale exploring their Supportive Care Needs, the Hospital Anxiety and Depression Scale (HADS) and the EORTC QOL scale with its Myeloma module. The partners completed the partners' version of the Supportive Care Needs scale and HADS. RESULTS: A total of 132 patients and 93 of their partners participated. One-quarter of the patients and one-third of the partners reported unmet supportive care needs. About 27.4% of patients reported signs of anxiety and 25.2% reported signs of depression. Almost half the partners (48.8%) reported signs of anxiety and 13.6% signs of depression. Anxious/depressed patients had more than double unmet needs than non-anxious/depressed patients (P<0.05). QOL was moderate, with key areas of impairment being physical, emotional, social and cognitive functioning, and patients complained of several symptoms, including tiredness (40.7%), pain (35.9%), insomnia (32.3%), peripheral neuropathies (28.3%) and memory problems (22.3%). About 40.8% were worried about their health in the future. CONCLUSION: Long-term supportive care services should provide support to both patients and their partners in relation to their unmet needs, screening them for psychological disorders, referring them appropriately and timely, and optimising symptom management in order to improve the patients' QOL.