Quality of life in amyotrophic lateral sclerosis/motor neuron disease: a structured review

Authors:

Epton, J., Harris, R., and Jenkinson, C.

Abstract:

Amyotrophic lateral sclerosis/motor neuron disease and other related disorders are fatal progressive neurodegenerative conditions that have a substantial impact on quality of life (QoL). This systematic review examines the different methods and instruments used to assess QoL in this condition from which recommendations are made of those that evidence suggests are the most appropriate. Databases were used to survey the available literature to cover as many different approaches and papers as possible. Due to the wide variety of approaches to the measurement of QoL data across the papers, no meta-analysis was possible. The available evidence suggests that at the present time the most appropriate measures are the SF-36, a generic widely used QoL measure, and the disease specific ALSAQ-40. However, as many of the validation studies on the ALSAQ-40 were undertaken by the developers of this instrument, further independent research is desirable to confirm these conclusions.

DOI:

10.1080/17482960802163721

URL:

https://www.ncbi.nlm.nih.gov/pubmed/18752087

Journal:

Amyotroph Lateral Scler

issn:

1471-180X (Electronic)

Publication year:

2009

pages:

15-26

Symptom status:

Cognitive/mental state
Emotional state
Physical state

Functional status:

Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning

General health perceptions / HRQoL:

Health-related quality of life

Age:

Adults (18-65)
Children (0-18)
Seniors (65+)

Disease:

Diseases of and symptoms related to the nervous system

PRO / non-PRO:

Patient Reported Outcome

Type of measurement instrument:

1 - Questionnaires
2 - Interviews

Instrument:

ALSAQ-40 - Amyotrophic Lateral Sclerosis Assessment Questionnaire-40 items
ALSSQoL - ALS-Specific Quality of Life Questionnaire
EQ-5D - EuroQoL-5 Dimensions   
MQOL - McGill Quality of Life Questionnaire [alias: McGill QoL] (also: MQOL-CSF - MQOL-Cardiff Short form)
SEIQoL - Schedule for the Evaluation of Individual Quality of Life
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see: database.cosmin.nl
SIP-ALS-19 - Sickness Impact Profile-Amyotrophic Lateral Sclerosis-19 items
SIP-FLP - Sickness Impact Profile-Functional Limitations Profile