Past Studies
Assessment of Health Status in Patients with Cerebral Palsy: What is the Role of Quality of Life Measures?
 Introduction:
"Quality of life" is a term used to refer to how much a patient's life is affected by his or her medical condition. Quality of life includes emotional, physical, and social well-being. Measuring quality of life in a pediatric cerebral palsy (CP) population is challenging. While diplegic and hemiplegic patients have full use of two of their limbs, quadriplegic patients have all four limbs (both arms and legs) affected with CP. And even within the hemiplegic and quadriplegic populations, there are large ranges of function, both mentally and physically. This makes it hard to use just one survey with a limited amount of questions to assess quality of life in all cerebral palsy patients. This study assessed the utility of two common quality of life surveys in this population; the Child Health Questionnaire (CHQ) and the Pediatric Outcomes Data Collection Instrument (PODCI). The goal was to determine how effective these questionnaires are at detecting differences in the quality of life among pediatric patients with cerebral palsy and to demonstrate the need for dynamic assessment (computer-based surveys that choose each question based on the patient's response to the previous one) when evaluating quality of life within this group.
Methods:
There were 180 subjects between the ages of 5 and 18 split into three diagnostic groups; diplegic, hemiplegic and quadriplegic. Because many of the patients were too young or otherwise unable to fill out the questionnaires, a version of the questionnaire was given to parents and guardians to complete for their children. In addition, the treating surgeon gave a general physical and psychosocial score, which we compared to the scores from the survey.
Results:
The PODCI was most sensitive to differences in the diplegic and hemiplegic groups, but quadriplegics exhibited a floor effect (50% or more scored at most 15 out of 100) in three of the five domains (a domain in a survey is a group of questions). The CHQ was more effective for the quadriplegic group, but the diplegic and hemiplegic diagnostic groups exhibited a ceiling effect (50% or more scored 100%) on two of the twelve domains in that questionnaire.
Conclusion:
The PODCI was most sensitive to differences within the diplegic and hemiplegic groups, but quadriplegics exhibited a floor effect (50% or more scored at most 15 out of 100) in three of the five domains. In other words, the scores on the PODCI for hemiplegic and diplegic varied from scores for "normal" children, reflecting the differences in quality of life between these patients and patients without CP. The CHQ was more effective for the quadriplegic group, but the diplegic and hemiplegic diagnostic groups exhibited a ceiling effect, or scored so high that there was no difference between them and the scores for "normal" children on two of the twelve domains in that questionnaire. Because an instrument that uses dynamic assessment bases subsequent questions on the patient's response to the first ones, dynamic assessment would help to avoid ceiling and floor effects by asking questions more pertinent to the patient's actual condition, and it would save time that would have been wasted answering irrelevant questions about function and quality of life.
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