Measuring Outcomes for Neurological Disorders: A Review of Disease-Specific Health Status Instruments for Three Degenerative Neurological Conditions
Chronic Illness
Heffernan, C., & Jenkinson, C. (2005).
Chronic Illness, 1(2), 131-142.
This review investigates the use of disease-specific health status instruments to report patient-based outcomes in individuals with neurological disorders such as amyotrophic lateral sclerosis (ALS), Parkinson's disease (PD), and multiple sclerosis (MS).
Not stated
1970-2005
Not further specified
76
<p>The Multiple Sclerosis Impact Scale (MSIS-29) appeared to demonstrate adequate measurement properties for use with individuals with MS. A variety of other instruments were found, but "there was a paucity of literature on the validation and reliability of such instruments" (p. 135). The instruments included:</p>
<ul>
<li>the Multiple Sclerosis Quality of Life Inventory (MSQLI);</li>
<li>the Quality of Life Questionnaire for Multiple Sclerosis (QoLQ for MS);</li>
<li>the Multiple Sclerosis Activities of Daily Living Scales (MS ADL Scales);</li>
<li>the Multiple Sclerosis Quality of Life – 54 items (MSQOL-54);</li>
<li>the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS);</li>
<li>the Leeds Multiple Sclerosis Quality of Life (LMSQoL);</li>
<li>the Quality of Life Index Multiple Sclerosis (QLI-MS);</li>
<li>the Quality of Life Scale for MS patients (RAYS);</li>
<li>the Health Related Quality of Life Questionnaire for MS (HRQoL-MS); and</li>
<li>the Functional Assessment of Multiple Sclerosis (FAMS).</li>
</ul>
<p>Four disease-specific measures were identified to assess quality of life in individuals with PD:</p>
<ol>
<li>The Parkinson's Disease Quality of Life Questionnaire;</li>
<li>The Parkinson's Disease Quality of Life Scale;</li>
<li>The Parkinson's Disease Questionnaire (PDQ-39); and</li>
<li>The shortened Parkinson's Disease Questionnaire (PDQ-8).</li>
</ol>
<p>All four assessment measures include an evaluation of social functioning, communication and cognition. Only the PDQ-39 and the Parkinson's Disease Quality of Life Scale appear valid for assessing the impact of treatments on quality of life for this population.</p>
<div>Only one disease-specific instrument, the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40), was identified to measure patient-centered outcomes for individuals with ALS. This scale measures five domains including eating and drinking and communication. Further testing on the validity of this measure is needed.</div>
