Quality of life assessment in MND: development of a social withdrawal scale

Abstract

A scale to measure 'social withdrawal,' was developed specifically for use with MND patients. Scale design was based upon patient-focused interviews which were used to explore patients' concerns. The impact the condition had upon their social interactions with others was salient for all patients and affected their overall quality of life. Using issues raised by patients, a 23-item scale was generated to specifically and quantitatively measure social withdrawal and this scale was psychometrically evaluated. The scale was administered to a sample of 23 patients at varied stages of progression of MND, and to a control group of patients with arthritis with similar levels of physical disability. For MND patients withdrawal from the community was found to be closely related to severity of physical symptoms and depression. Specific patients were identified who are particularly susceptible to withdrawal and depression. Comparison of the pattern of withdrawal in the MND and arthritis patient groups suggested that there may be differences between the factors governing social withdrawal in different patient populations.