Developing a questionnaire to assess the outcome of memory rehabilitation for people with neurological disabilities

Aims: To develop an outcome questionnaire, the Adaptation to Memory Difficulties Outcome Questionnaire, on the effectiveness of memory rehabilitation. Methods: An initial pool of items was identified through observations and qualitative interviews with participants receiving memory rehabilitation. A 45-item version of the questionnaire was posted to people with traumatic brain injury and multiple sclerosis. A second copy was posted to those who agreed to be reassessed 2 weeks later. Results: The questionnaire was returned by 141 people. Some items were removed due to poor response distributions. Principal component analysis indicated that the questionnaire comprised five subscales: i) memory knowledge; ii) control; iii) emotional adjustment; iv) internal memory aids; v) external memory aids. Internal consistency was satisfactory (Cronbach's alpha=0.74–0.84). Test–retest reliability was assessed on 50 participants completing a second questionnaire within a 4-week interval and was shown to be satisfactory (Cronbach's alpha=0.67–0.86). There was no significant association between subscale scores and age, gender, diagnosis or time since onset. Conclusions: The questionnaire may be used as a measure of the effect of memory problems, tailored to the aims of memory rehabilitation. Responsiveness to change needs to be assessed.