A review of psychosocial aspects of motor neurone disease

Abstract

Motor neurone disease (MND) is an illness involving the progressive degeneration of upper and lower motor neurones. There is no known cause or cure. The physical aspects of MND frequently receive the majority of attention, with psychosocial aspects accorded secondary importance. We undertook a comprehensive search of the available literature published between 1966 and 2006 on the psychosocial aspects of MND, including quality of life (QoL), depression, social support, life sustaining treatment (LST), coping, spirituality and current practice. The literature identified that QoL correlated more strongly with measures of suffering, social support and hopelessness than with the physical state of the patient. Depression is relatively common (prevalence rates up to 50%), as are other forms of psychological distress in the MND population, and is not associated with illness severity and functional status. Depression strongly correlates with QoL. Social support is often limited for MND patients and this also influences QoL. Hope and hopelessness are important issues for MND patients with hopelessness contributing significantly to suffering and, for some, a desire for hastened death. Choices and decisions about life sustaining treatments pose a burden for patients and carers. Despite the physical and emotional suffering associated with MND, a significant number cope well and find positive meaning in life. Many patients opting for life sustaining treatment report a satisfactory QoL. In conclusion, psychosocial aspects of life are important for patients with MND. Depression and other expressions of distress require recognition and treatment. Issues of hope, spirituality and life and death also require attention in clinical practice. Although guidelines exist to direct physicians to attend to the physical care, there is a distinct lack of guidance to attend to the psychological state of the MND patient.