In people with amyotrophic lateral sclerosis, overall quality of life was related to psychological, social and spiritual factors but not physical status.

 

Clinical Problem: A 62 year old woman with a recent diagnosis of amyotrophic lateral sclerosis wishes to discuss how the disease will impact her quality of life.

 

Clinical Question:  What are the determinants of quality of life (QOL) in patients with amyotrophic lateral sclerosis (ALS)?

 

Search Strategy:  PubMed, SUMsearch and the Cochrane Reviews database were searched using the MeSH terms “amyotrophic lateral sclerosis” AND “quality of life” without search limits.  The Pubmed search yielded 224 articles and the SUMsearch and Cochrane search yielded 74 articles together.  No Cochrane reviews directly assessed QOL in ALS.  The SUMsearch results were eliminated because as they did not involve quality of life assessment, were clinical guidelines or were already included in the Pubmed results.  Of the 224 articles found using PubMed, 159 were not relevant to the clinical question, 22 were excluded because the study was establishing the validity and reliability of a quality of life assessment tool and the remaining studies were eliminated as they were assessing the effect of a specific intervention on quality of life in ALS rather than global influences on quality of life.  There were 2 remaining articles.  The final article was chosen based on the fact that it investigated broad determinants of QOL in ALS at a single point in time.

 

Clinical Bottom Lines:

  1. Major contributors to QOL in the ALS population studied included: quality of social supports, depression, socioeconomic status, level of religiosity.
  2. QOL in ALS was not dependent physical status.

 

The Evidence:  The study in question investigated quality of life in 80 consecutive patients from a specialized health care centre in Italy with definite, probable or laboratory supported probable ALS (El Escorial criteria) using two different tools: the Schedule for the Evaluation of QoL-Direct Weighting (SEIQoL-DW) and the McGill QoL questionnaire (MQOL).  The QOL data from the questionnaires was then compared to patient demographics, clinical status, mental status, depression and hopelessness, social support, social attitudes, religiosity and social status using previously established assessment tools for each domain.  A stepwise linear regression model was used with a Bonferroni comparison for multiple statistical comparisons.  The patients included in this study had a mean age of 59.8 years and a mean duration of disease at the time of interview of 2.1 years. 

 

Data: 

Predictor variables – Amongst the predictor scales assessed 20 patients had a ZDS indicating overt depression, 7 patients had a BHS indicating severe hopelessness and 13 had a BHS indicating moderate hopelessness.  A total of 19 patients were taking selective serotonin reuptake inhibitors.

Explanatory variables – Table 1.  Predictor variables having maximal influence on the QOL assessment tools being studied.

QOL instrument

Predictor Variables

Domain of QOL

% Variance

Schedule for the Evaluation of QoL-Direct Weighting

SSQ-S     p=0.0021

ZDS             p=0.03

IIR-Pr          p=0.04

PSQ             p=0.05

-social support

-depression

-religiosity

-social status

44%

McGill QoL questionnaire - total

SSQ-S       p=0.003

PSQ           p=0.012

ALS-FRS    p=0.04

-social support

-social status

-clinical status

47%

     MQOL-physical well being

ZDS         p=0.0001

ALS-FRS    p=0.02

-depression

-clinical status

 

     MQOL-physical symptoms

ALS-Ph       p=0.01

-clinical status

 

     MQOL-existential well being

SSQ-S         p=0.01

ZDS           p=0.006

-social support

-depression

 

     MQOL-psychological symptoms

ZDS         p=0.0001

SWS-F     p=0.0002

SSQ-S       p=0.004

-depression

-social attitudes

-social support

 

     MQOL-support

SSQ-S       p=0.003

BHS             p=0.02

-social support

-hopelessness

 

MQOL-Single Item Score

SSQ-S       p=0.009

ZDS           p=0.015

SWS-F         p=0.02

PSQ             p=0.04

-social support

-depression

-social attitudes

-social status

52%

Abbreviations: ALS-FRS=ALS Functional Rating Scale, IIR-Pr=Idler Index of Religiosity Private Score, ZDS=Zung Depression Score, BHS=Beck Hopelessness Scale, SSQ-S=Social Support Questionnaire Satisfaction, SWS-F=Social Withdrawal Scale Family, PSQ=Psychosocial Questionnaire.

 

Comments:

  1. QOL is a broad term with little consensus on a firm definition. 
  2. The SEIQoL-DW is a patient driven QOL assessment tool allowing for the patient to propose the areas of QOL having the greatest impact on their personal QOL and ranking these domains according to importance. 
  3. The MQOL is a QOL questionnaire that assesses multiple aspects of QOL including physical well-being, physical symptoms, existential well-being, psychological symptoms, support and a single item rating scale for rating overall QOL.
  4. Both SEIQoL-DW and MQOL have established validity.
  5. The authors suggest that efforts aimed at improving QOL in an ALS population should be aimed at improving a patient’s social supports, including relatives and caregivers, and managing depression when present.
  6. This study was performed in an Italian population and therefore the results must be interpreted within the cultural context.

 

References:  Chio A, Gauthier A, Montuschi A, Calvo A, Di Vito N, Ghiglione P, Mutani R.  A cross sectional study on determinants of quality of life in ALS.  JNNP 2004; 75: 1597-1601.

 

Key words:  amyotrophic lateral sclerosis, quality of life, psychological well being

 

Appraiser:  Dr. Teneille Gofton and the UWO Evidence Based Neurology Group.

 

Date appraised: September 4, 2007

                                                                                                                                   

Copyright Ó2002-2007

Evidence Based Neurology Group

University of Western Ontario