Journal of Pediatric Psychology Advance Access originally published online on July 15, 2008
Journal of Pediatric Psychology 2008 33(9):997-998; doi:10.1093/jpepsy/jsn072
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This article appears in the following Journal of Pediatric Psychology issue: Special Issue: Evidence-based Assessment in Pediatric Psychology [View the issue table of contents]
Commentary on Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology
University of Sheffield
All correspondence concerning this article should be addressed to Christine Eiser, PhD, Department of Psychology, University of Sheffield, Sheffield, S10 2TP, UK. E-mail: c.eiser{at}Sheffield.ac.uk
Increases in survival rates of once life-threatening conditions (e.g., childhood cancer), coupled with awareness of the potentially iatrogenic nature of modern medicine has led to increasing calls to consider the child's health-related quality of life (HRQOL) in addition to length of survival. To meet this need, a number of patient-reported outcomes have been reported. The recent burgeoning of such measures creates some confusion for researchers and clinicians struggling to identify the "best" available measure. The article by Palermo et al. (this issue) sets out to survey the measures most frequently identified by pediatric psychologists and evaluate their quality. It complements related reviews concerning conceptualization and measurement of HRQOL. Of note, is the attempt to bring together not only measures of HRQOL but also measures of functional impairment (FI).
Sixteen commonly used measures of HRQOL and FI are identified and critiqued, resulting in eight recommendations regarding future assessment. Recommendations include, first, the continuing need for improved psychometric information. Although 12 measures were assessed as ‘well-established,’ this was largely based on psychometric criteria (reliability and validity). Other requirements (e.g., proxy and child parallel reports; brevity) considered essential (Eiser & Morse, 2001
) were not characteristic of many of these measures. The emphasis on psychometric criteria to the exclusion of these other requirements may lead to an overestimation of the number of quality measures available.
Second, the authors emphasize the need to extend work on research and clinical utility. Although important, this is a real "catch-22" situation; well-validated measures are needed, but there is resistance to adopt measures in large-scale clinical trials until validity is firmly established. Measure development must be seen as an iterative process; for all measures, continuing refinement is essential.
Third, the authors note "the issues related to proxy versus self reporting." This use of "versus" is slightly unfortunate, given the emerging consensus that child and proxy perspectives are different, but complementary. Both contribute meaningful data, and attest to the need for parallel parent–child forms.
Fourth, the issue of minimal clinically important difference scores is critical, and a major obstacle to use of HRQOL measures in clinical contexts. Until we are able to provide clinicians with this information, they will remain hesitant to "burden" patients with questionnaires.
Fifth, there is a need to determine change in HRQOL over time, but especially where children are involved, the need for standard measures that can be used over time must be balanced against changes necessary to provide age-appropriate sensitivity. The meaning of HRQOL, and children's ability to evaluate their own HRQOL, needs to be taken into account when developing measures.
I would also concur with their sixth recommendation, that concepts such as response shift may be valuable when interpreting longitudinal data. That sick children and adults are able to come to terms with their situation, and indeed, often derive psychological benefit, is an impressive human ability, with associated clinical implications. It may yet be that the inability to derive such benefits is what characterizes those who adjust least well to their situations.
Seventh, as measures must take into account developmental change, they must also take account of the fact that the meaning of items and domains may differ between sick and healthy children. We must move away from simplistic ideas about "gold standards" in HRQOL, and research designs involving simple comparisons against population norms and between treatment groups.
Eighth, implicit in most definitions of HRQOL is the idea that it is unique to the individual. This places a demand for measures to be developed for younger children, rather than rely on proxy report. I think most researchers would agree that greater creativity is needed to make measures attractive and accessible to younger children. This may, however, pose considerable challenge to related demands to improve the reliability and validity of measures.
Assessment of HRQOL is valuable, especially where current treatments are unlikely to result in extended survival (e.g., palliative care). We also need internationally valid measures for clinical trial work. Although considerable progress has been made, future achievements are dependent on multidisciplinary collaboration (Eiser, 2007). Too often psychologists have expended their energies on measure development, but failed to understand the practical limitations encountered in acute pediatric settings, with their demand for simple, very brief measures.
Limitations of the review relate to noninclusion of potentially valuable measures (e.g., Kidscreen: Ravens-Sieberer et al., 2001; DISABKIDS: Simeoni et al., 2007); a consequence of selection of measures being based on US practice, and that the coding of quality of measures was based on recommendations of the SPP Assessment Task Force Groups. This means that measures published in at least one peer-reviewed article and with moderate psychometric data were coded as "promising." Consequently, the PPSC (Lansky, List, Sansky, Cohen, & Sinks, 1985) was coded as "promising," whereas it has been superseded by more recent measures. Decisions made on the basis of the review must acknowledge these limitations. Despite this, the review by Palermo et al. (2008) may be helpful for those asking the perennial question: "what HRQOL measure should I use?" To their helpful conclusions, I would add that decisions need to take account of the research question being addressed.
Conflicts of interest: None declared.
Received April 25, 2008; revision received June 16, 2008; accepted June 16, 2008
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Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood (2001) 84:205–211.
Lansky LL, List MA, Sansky SB, Cohen ME, Sinks LF. Toward the development of a play-performance scale for children (PPSC). Cancer (1985) 56:1837–1840.[CrossRef][Medline]
Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker LS. Evidence-based assessment of health-related quality of life and functional impairment in Pediatric Psychology. Journal of Pediatric Psychology (2008) Advance Access published on April 22. 10.1093/jpepsy/jsn038.
Ravens-Sieberer U, Gosch A, Abel T, Auquier P, Bellach B-M, Dür W, et al. Quality of life in children and adolescents: A European public health perspective. Social and Preventive Medicine (2001) 46:297–302.
Simeoni MC, Schmidt S, Muehlan H, Debensason D, Bullinger M, Group TD. Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module. Quality of Life Research (2007) 16:881–893.[CrossRef][Web of Science][Medline]
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