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 (Po0.05). 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.

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.

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.

The aim of this study was to obtain a more in-depth understanding of cognitive impairments and concerns as described by patients with multiple myeloma and the strategies used to cope with them. Semi-structured qualitative interviews were undertaken with 15 multiple myeloma patients of differing age ranges and at various stages of their disease. Various cognitive impairments, such as problems with short-term memory, poor recall and lack of concentration were observed and/or expressed in at least 10 out of 15 patients, all of them long(er)-term survivors. In some patients cognitive impairments significantly interfered with their personal and professional lives, and for some patients these were described as permanent. The patients used various coping strategies, from denial, taking notes, writing diaries, reading simpler texts, using talking books and videos, to using systems for counting medication to cope with the results of their cognitive impairment. Our findings differ from much of the contemporary literature which states that if cognitive impairments in cancer patients occur, they are mostly mild and transient. More proactive supportive care is needed to help patients with multiple myeloma to cope with poorer cognitive functioning.

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