Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/ motor neurone disease: the ALSAQ-40

Abstract

In recent years there has been an increased appreciation of the importance of measuring health status from the patient's point of view, but until now no attempt has been made to develop an amyotrophic lateral sclerosis (ALS)-specific health status measure. The development of such an instrument is especially relevant now with the introduction of drugs that prolong life in ALS but limited data is available on the impact such treatments have on quality of life. This paper reports on the development of an ALS-specific measure, the forty item ALS assessment questionnaire (ALSAQ-40). The development of the ALSAQ-40 followed three main stages. Stage 1 consisted of in-depth, semi-structured exploratory interviews conducted on a sample of 18 patients to identify areas of salience and concern to patients with ALS. These interviews generated 78 candidate questions. In stage 2, the 78-item questionnaire was used in a postal survey to identify appropriate rephrasing/shortening and to determine the acceptability of the measure. In addition, this exercise helped identify sub-scales of the instrument addressing different dimensions of ALS. Finally in stage 3 the data collected in stage 2 was analysed to areas measured by the instrument and to remove redundant questions. The resulting measure contains forty questions measuring five areas of health status: Eating and Drinking, Communication, ADL/independence, Physical mobility, Emotional Functioning. The measure has high face, internal and construct validity and is likely to prove a useful measure in the evaluation of treatment regimes for ALS/MND.

Trends of quality of life changes in amyotrophic lateral sclerosis patients

“…Questionnaire (ALSAQ-40) 11 were utilized to measure patients' status at the start of study and in periods of 6 and 12 months. In the current study, QOL changes were evaluated during the time of the study and it was related to the predictor variables including age, sex, onset site and ALSHSS.…”

Difference in chronological changes of outcome measures between untreated and placebo-treated patients of spinal and bulbar muscular atrophy

“…This questionnaire was developed from the original version, the ALSAQ-40, through the process of item reduction. The ALSAQ-5 and its original version were developed and validated by Jenkinson et al [21,22], and the Japanese translation of this test has also been validated [23].…”

Interdisciplinary palliative care, including massage, in treatment of amyotrophic lateral sclerosis

“…The goal of the health care team is to manage the symptoms of the ALS patient. Many studies support an interdisciplinary approach to the care of the ALS patient to improve their quality of life (Bruijn and Cudkowicz, 2006;Cannaets et al, 2004;Francis et al, 1999;Howard and Orrell, 2002;Jenkinson et al, 1999). The goal of a multidisciplinary team is to educate the patient and family, provide psychological support, help Trail et al (2003Trail et al ( , 2004 Worries about loved ones' emotional and physical well-being with the ever-changing requirements for rehabilitation and appropriate equipment, and provide access to community resources.…”

“…Coping mechanisms that help patients and their families accomplish activities of daily living; bathing, dressing, toilet use, transferring, difficulty in using hands and arms, turning and moving in bed, picking objects up, holding and turning pages in books, writing clearly, doing jobs around the house, talking, walking, and eating, need to be revised frequently (BelloHaas et al, 1998;Jenkinson et al, 1999). Issues facing the caregivers are numerous and can be overwhelmingly time consuming.…”

“…All other treatments for ALS are to manage symptoms and improve the quality of life (Galbussera et al, 2006). Therefore, a multi-team approach is beneficial to support patients and their families (Bruijn and Cudkowicz, 2006;Galbussera et al, 2006;Jenkinson et al, 1999). While treating patients the benefit needs to be assessed, not all healthcare professionals agree that massage is useful for the ALS patient (Sancho and Boisson, 2006) The purpose of this paper is to explore the effects of ALS on a patient, and the benefit of massage therapy for the patient and their family.…”