Carers' perspective in quality of life in epilepsy
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《美国医学杂志》
South Staffordshire Healthcare, NHS Trust, Burton upon Trent and North Essex Mental Health Partnership NHS Trust, Clacton-on-Sea, United Kingdom
Malhi and Singhi[1] have presented important findings in relation to quality of life (QOL) in children with epilepsy in a developing country setting. The study results go on to show that children with epilepsy have a relatively compromised QOL. However, there are some conceptual issues and methodological concerns which we wish to highlight.
Firstly,the QOL instrument used in the study captures answers from the parents rather than the children and assesses the perceptions and attitudes of the parents rather than the actual QOL of the affected children. The authors do briefly touch upon this aspect in their discussion, which should have conceptually focused primarily on the parents. Also, it would have been more appropriate to conclude that parents of children with epilepsy have poor knowledge and relatively negative attitudes about epilepsy and its treatment.
Assuming that the instrument used captured various aspects of QOL, it suggests that either the parents of children with epilepsy demonstrate a compromised QOL or, as reflected by the parents' perception, the children had a compromised QOL. The latter suggestion appears tenable as the parents gave answers to the QOL questionnaire on behalf of the children who may be assumed to not have had the cognitive maturity and verbal felicity to answers the QOL questions.
This raises another conceptual issue in assessing QOL, viz. emic versus etic approaches[2] which highlight that subjective and objective appraisals are different kinds of data and may not necessarily be concordant. The assessment of QOL by self or carers is related to this issue.[3] Although QOL research in major psychiatric illnesses has shown variable results as regards findings from patients versus their carers/family members, Lobana et al[3] demonstrated that in the Indian family setting, the QOL of the subjects can be perceived reasonably accurately by their carers/family members, who can act as useful proxy measures; the authors discussed the various reasons for such a finding. Extrapolating the findings of that study to this study[1] the QOL of children with epilepsy as assessed from their parents' perspective is probably a true reflection of the affected children's QOL. Hence, it would have been more appropriate to have the study title and discussion focus on the parents' perspective of QOL of children suffering from epilepsy.
Secondly, we have some concerns about the statistical analysis carried out viz.
(i) no rationale is provided as to why only the four specific seizure variables were used as correlational measures-was this based upon previous research evidence, or on the results of the initial analysis of the results obtained
(ii) the application of multiple regression analysis appears flawed in that variables, with non-significant correlations used in the analysis; and the principle of having a sample size of at least 5-10 times the number of the regression variables was not honoured (there were 11 variables selected for a sample of 43 children). This poses limitation on the power of the results obtained and needs reconsideration.
Despite the above-mentioned concerns and conceptual issues, the importance of this study[1] cannot be diluted, as it is one of the first few from a developing country perspective and highlights the need for incorporating QOL measures in management of children with epilepsy. But, probably the most salient feature of this study is that it highlights the impaired QOL of the family unit as a whole (of children suffering from epilepsy) and the urgent need to address the same while managing them.
References
1. Malhi P, Singhi P. Correlates of quality of life with epilepsy. Indian J Pediatr 2005; 72: 131-135.
2. Warner R. The emics and etics of quality of life assessment. Soc Psychiatry Psychiatr Epidemiol 1999; 34: 117-121.
3. Lobana A, Mattoo SK, Basu D, Gupta N. Quality of life in schizophrenia in India: A comparison of three approaches. Acta Psychiatr Scand 2001; 104 : 51-55.(Gupta Nitin, Mattoo SK)
Malhi and Singhi[1] have presented important findings in relation to quality of life (QOL) in children with epilepsy in a developing country setting. The study results go on to show that children with epilepsy have a relatively compromised QOL. However, there are some conceptual issues and methodological concerns which we wish to highlight.
Firstly,the QOL instrument used in the study captures answers from the parents rather than the children and assesses the perceptions and attitudes of the parents rather than the actual QOL of the affected children. The authors do briefly touch upon this aspect in their discussion, which should have conceptually focused primarily on the parents. Also, it would have been more appropriate to conclude that parents of children with epilepsy have poor knowledge and relatively negative attitudes about epilepsy and its treatment.
Assuming that the instrument used captured various aspects of QOL, it suggests that either the parents of children with epilepsy demonstrate a compromised QOL or, as reflected by the parents' perception, the children had a compromised QOL. The latter suggestion appears tenable as the parents gave answers to the QOL questionnaire on behalf of the children who may be assumed to not have had the cognitive maturity and verbal felicity to answers the QOL questions.
This raises another conceptual issue in assessing QOL, viz. emic versus etic approaches[2] which highlight that subjective and objective appraisals are different kinds of data and may not necessarily be concordant. The assessment of QOL by self or carers is related to this issue.[3] Although QOL research in major psychiatric illnesses has shown variable results as regards findings from patients versus their carers/family members, Lobana et al[3] demonstrated that in the Indian family setting, the QOL of the subjects can be perceived reasonably accurately by their carers/family members, who can act as useful proxy measures; the authors discussed the various reasons for such a finding. Extrapolating the findings of that study to this study[1] the QOL of children with epilepsy as assessed from their parents' perspective is probably a true reflection of the affected children's QOL. Hence, it would have been more appropriate to have the study title and discussion focus on the parents' perspective of QOL of children suffering from epilepsy.
Secondly, we have some concerns about the statistical analysis carried out viz.
(i) no rationale is provided as to why only the four specific seizure variables were used as correlational measures-was this based upon previous research evidence, or on the results of the initial analysis of the results obtained
(ii) the application of multiple regression analysis appears flawed in that variables, with non-significant correlations used in the analysis; and the principle of having a sample size of at least 5-10 times the number of the regression variables was not honoured (there were 11 variables selected for a sample of 43 children). This poses limitation on the power of the results obtained and needs reconsideration.
Despite the above-mentioned concerns and conceptual issues, the importance of this study[1] cannot be diluted, as it is one of the first few from a developing country perspective and highlights the need for incorporating QOL measures in management of children with epilepsy. But, probably the most salient feature of this study is that it highlights the impaired QOL of the family unit as a whole (of children suffering from epilepsy) and the urgent need to address the same while managing them.
References
1. Malhi P, Singhi P. Correlates of quality of life with epilepsy. Indian J Pediatr 2005; 72: 131-135.
2. Warner R. The emics and etics of quality of life assessment. Soc Psychiatry Psychiatr Epidemiol 1999; 34: 117-121.
3. Lobana A, Mattoo SK, Basu D, Gupta N. Quality of life in schizophrenia in India: A comparison of three approaches. Acta Psychiatr Scand 2001; 104 : 51-55.(Gupta Nitin, Mattoo SK)