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Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?

Kuspinar A, Mayo NE - Health Qual Life Outcomes (2013)

Bottom Line: The magnitude of difference between the PGI and the generic utility measures was large and statistically significant.An important consequence of this mismatch was that values of QOL derived from the PGI were importantly and significantly lower than those estimated using any of the generic utility measures.This could have a substantial impact in evaluating the effect of interventions for people with MS.

View Article: PubMed Central - HTML - PubMed

Affiliation: School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, QC, Canada. ayse.kuspinar@mail.mcgill.ca

ABSTRACT

Purpose: The three most widely used utility measures are the Health Utilities Index Mark 2 and 3 (HUI2 and HUI3), the EuroQol-5D (EQ-5D) and the Short-Form-6D (SF-6D). In line with guidelines for economic evaluation from agencies such as the National Institute for Health and Clinical Excellence (NICE) and the Canadian Agency for Drugs and Technologies in Health (CADTH), these measures are currently being used to evaluate the cost-effectiveness of different interventions in MS. However, the challenge of using such measures in people with a specific health condition, such as MS, is that they may not capture all of the domains that are impacted upon by the condition. If important domains are missing from the generic measures, the value derived will be higher than the real impact creating invalid comparisons across interventions and populations. Therefore, the objective of this study is to estimate the extent to which generic utility measures capture important domains that are affected by MS.

Methods: The available study population consisted of men and women who had been registered after 1994 in three participating MS clinics in Greater Montreal, Quebec, Canada. Subjects were first interviewed on an individualized measure of quality of life (QOL) called the Patient Generated Index (PGI). The domains identified with the PGI were then classified and grouped together using the World Health Organization's International Classification of Functioning, Disability and Health (ICF), and mapped onto the HUI2, HUI3, EQ-5D and SF-6D.

Results: A total of 185 persons with MS were interviewed on the PGI. The sample was relatively young (mean age 43) and predominantly female. Both men and women had mild disability with a median Expanded Disability Status Scale (EDSS) score of 2. The top 10 domains that patients identified to be the most affected by their MS were, work (62%), fatigue (48%), sports (39%), social life (28%), relationships (23%), walking/mobility (22%), cognition (21%), balance (14%), housework (12%) and mood (11%). The SF-6D included the most number of domains (6 domains) important to people with MS, followed by the EQ-5D (4 domains) and the HUI2 (4 domains) and then the HUI3 (3 domains). The mean and standard deviation (SD) for the PGI, EQ-5D and the SF-6D were 0.50 (SD 0.25), 0.69 (0.18) and 0.69 (0.13), respectively. The magnitude of difference between the PGI and the generic utility measures was large and statistically significant.

Conclusion: Although the generic utility measures included certain items that were important to people with MS, there were several that were missing. An important consequence of this mismatch was that values of QOL derived from the PGI were importantly and significantly lower than those estimated using any of the generic utility measures. This could have a substantial impact in evaluating the effect of interventions for people with MS.

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Related in: MedlinePlus

Frequency and distribution of PGI scores on the degree to which walking was affected from 0 (worst they can imagine) to 10 (exactly as they would like to be).
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Figure 4: Frequency and distribution of PGI scores on the degree to which walking was affected from 0 (worst they can imagine) to 10 (exactly as they would like to be).

Mentions: This mismatch was also present at the item level. A total of 41 subjects (22% of the sample) reported walking to be an important aspect of their QOL. The distribution of scores on the degree to which walking was affected for these subjects is presented in Figure4. The impact was measured on a scale from 0 to 10 on the PGI, where 0 was the worst they could imagine and 10 was exactly as they would like to be. These scores were compared with the responses on the EQ-5D mobility item. 12 subjects out of 41 reported having no problems with walking on the EQ-5D. These people were expected to have a score of 10 on the PGI. Only 1 person reported a score of 10 on the PGI. All other subjects reported scores lower than this, scores as low as 3 (poor).


Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?

Kuspinar A, Mayo NE - Health Qual Life Outcomes (2013)

Frequency and distribution of PGI scores on the degree to which walking was affected from 0 (worst they can imagine) to 10 (exactly as they would like to be).
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC3649951&req=5

Figure 4: Frequency and distribution of PGI scores on the degree to which walking was affected from 0 (worst they can imagine) to 10 (exactly as they would like to be).
Mentions: This mismatch was also present at the item level. A total of 41 subjects (22% of the sample) reported walking to be an important aspect of their QOL. The distribution of scores on the degree to which walking was affected for these subjects is presented in Figure4. The impact was measured on a scale from 0 to 10 on the PGI, where 0 was the worst they could imagine and 10 was exactly as they would like to be. These scores were compared with the responses on the EQ-5D mobility item. 12 subjects out of 41 reported having no problems with walking on the EQ-5D. These people were expected to have a score of 10 on the PGI. Only 1 person reported a score of 10 on the PGI. All other subjects reported scores lower than this, scores as low as 3 (poor).

Bottom Line: The magnitude of difference between the PGI and the generic utility measures was large and statistically significant.An important consequence of this mismatch was that values of QOL derived from the PGI were importantly and significantly lower than those estimated using any of the generic utility measures.This could have a substantial impact in evaluating the effect of interventions for people with MS.

View Article: PubMed Central - HTML - PubMed

Affiliation: School of Physical and Occupational Therapy, Faculty of Medicine, McGill University, Montreal, QC, Canada. ayse.kuspinar@mail.mcgill.ca

ABSTRACT

Purpose: The three most widely used utility measures are the Health Utilities Index Mark 2 and 3 (HUI2 and HUI3), the EuroQol-5D (EQ-5D) and the Short-Form-6D (SF-6D). In line with guidelines for economic evaluation from agencies such as the National Institute for Health and Clinical Excellence (NICE) and the Canadian Agency for Drugs and Technologies in Health (CADTH), these measures are currently being used to evaluate the cost-effectiveness of different interventions in MS. However, the challenge of using such measures in people with a specific health condition, such as MS, is that they may not capture all of the domains that are impacted upon by the condition. If important domains are missing from the generic measures, the value derived will be higher than the real impact creating invalid comparisons across interventions and populations. Therefore, the objective of this study is to estimate the extent to which generic utility measures capture important domains that are affected by MS.

Methods: The available study population consisted of men and women who had been registered after 1994 in three participating MS clinics in Greater Montreal, Quebec, Canada. Subjects were first interviewed on an individualized measure of quality of life (QOL) called the Patient Generated Index (PGI). The domains identified with the PGI were then classified and grouped together using the World Health Organization's International Classification of Functioning, Disability and Health (ICF), and mapped onto the HUI2, HUI3, EQ-5D and SF-6D.

Results: A total of 185 persons with MS were interviewed on the PGI. The sample was relatively young (mean age 43) and predominantly female. Both men and women had mild disability with a median Expanded Disability Status Scale (EDSS) score of 2. The top 10 domains that patients identified to be the most affected by their MS were, work (62%), fatigue (48%), sports (39%), social life (28%), relationships (23%), walking/mobility (22%), cognition (21%), balance (14%), housework (12%) and mood (11%). The SF-6D included the most number of domains (6 domains) important to people with MS, followed by the EQ-5D (4 domains) and the HUI2 (4 domains) and then the HUI3 (3 domains). The mean and standard deviation (SD) for the PGI, EQ-5D and the SF-6D were 0.50 (SD 0.25), 0.69 (0.18) and 0.69 (0.13), respectively. The magnitude of difference between the PGI and the generic utility measures was large and statistically significant.

Conclusion: Although the generic utility measures included certain items that were important to people with MS, there were several that were missing. An important consequence of this mismatch was that values of QOL derived from the PGI were importantly and significantly lower than those estimated using any of the generic utility measures. This could have a substantial impact in evaluating the effect of interventions for people with MS.

Show MeSH
Related in: MedlinePlus