The amyotrophic lateral sclerosis assessment questionnaire (ALSAQ-40): tests of data quality, score reliability and response rate in a survey of patients.

Objectives: To evaluate response rate, data quality, and score reliability of the 40 item Amyotrophic Lateral Sclerosis Assessment Questionnaire in a survey of MND patients.

Design: A survey of members of the MND Association of the UK, of which half were randomly allocated to receive a survey instrument from the MND Association and the other half allocated to receive the MND Association survey instrument and also the ALSAQ-40 questionnaire.

Sample: Five hundred patients were randomly selected from the membership lists of the MND Association, of whom 250 received the MND Association Survey and the ALSAQ-40.

The role of the amyotrophic lateral sclerosis and motor neurone disease community in health-care resourcing.

The Amyotrophic Lateral Sclerosis and Motor Neurone Disease (ALS/MND) Associations operate in the same financially constrained environment as everyone else. Increasing competition for limited health-care resources means that we are having to become better at competing for them on behalf of people affected by ALS/MND. This paper highlights the problems associated with making a case for ALS/MND, explores a range of method available to us, and illustrates using examples the recent activities undertaken by the UK MND Association.