TY - JOUR
T1 - Health status utilities in pediatrics
T2 - A systematic review of acute lymphoblastic leukemia
AU - Van Litsenburg, Raphaële R.L.
AU - Kunst, Annemieke
AU - Huisman, Jaap
AU - Ket, Johannes C.F.
AU - Kaspers, Gertjan J.L.
AU - Gemke, Reinoud J.B.J.
PY - 2014/1
Y1 - 2014/1
N2 - Background. Measuring utilities and health-related quality of life (HRQL) in children is challenging due to their cognitive abilities and changing developmental stages. Purpose. To identify methodological issues on utility measurements in children, we performed a systematic review on utilities measured with a single instrument, the Health Utilities Index (HUI), in pediatric acute lymphoblastic leukemia (ALL). The secondary goal was to facilitate future cost-utility analyses without the need for time-consuming assessments. Data Sources. PubMed, Embase, Cochrane Library, CINAHL, and PsycINFO were searched from inception to June 2012. Studies had to report on utility scores in pediatric ALL, either on or after treatment, to be included. Results. Fifteen studies were included. Most studies had methodological shortcomings, which mainly concerned study design and definition and representativeness of the study group. Utility scores were dependent on treatment variables, and there generally was an improvement in HRQL as treatment or survivorship advanced. In general, proxy-respondents were less reliable for subjective phenomena than for observable conditions. HUI2 and HUI3 scores were not interchangeable. Limitations. Studies may have been missed because no validated search method for utility studies exists, due to language bias or the exclusion of non-peer-reviewed papers. Conclusions. Most studies in this review were methodologically suboptimal. Future developments should focus on including developmentally appropriate items for the whole pediatric age group. Adding disease-specific domains may enhance the sensitivity and responsiveness of instruments. Efforts should be undertaken to elicit valuation of health states from older children and teenagers as much as possible. For now, it remains difficult to make valid and informed decisions on the financing of interventions until health state valuation in children has become more methodologically robust.
AB - Background. Measuring utilities and health-related quality of life (HRQL) in children is challenging due to their cognitive abilities and changing developmental stages. Purpose. To identify methodological issues on utility measurements in children, we performed a systematic review on utilities measured with a single instrument, the Health Utilities Index (HUI), in pediatric acute lymphoblastic leukemia (ALL). The secondary goal was to facilitate future cost-utility analyses without the need for time-consuming assessments. Data Sources. PubMed, Embase, Cochrane Library, CINAHL, and PsycINFO were searched from inception to June 2012. Studies had to report on utility scores in pediatric ALL, either on or after treatment, to be included. Results. Fifteen studies were included. Most studies had methodological shortcomings, which mainly concerned study design and definition and representativeness of the study group. Utility scores were dependent on treatment variables, and there generally was an improvement in HRQL as treatment or survivorship advanced. In general, proxy-respondents were less reliable for subjective phenomena than for observable conditions. HUI2 and HUI3 scores were not interchangeable. Limitations. Studies may have been missed because no validated search method for utility studies exists, due to language bias or the exclusion of non-peer-reviewed papers. Conclusions. Most studies in this review were methodologically suboptimal. Future developments should focus on including developmentally appropriate items for the whole pediatric age group. Adding disease-specific domains may enhance the sensitivity and responsiveness of instruments. Efforts should be undertaken to elicit valuation of health states from older children and teenagers as much as possible. For now, it remains difficult to make valid and informed decisions on the financing of interventions until health state valuation in children has become more methodologically robust.
KW - acute lymphoblastic leukemia
KW - child
KW - health status
KW - health utilities index
KW - health-related quality of life
KW - pediatric
KW - utility score
UR - http://www.scopus.com/inward/record.url?scp=84890754527&partnerID=8YFLogxK
U2 - 10.1177/0272989X13497263
DO - 10.1177/0272989X13497263
M3 - Review article
C2 - 23886678
AN - SCOPUS:84890754527
SN - 0272-989X
VL - 34
SP - 21
EP - 32
JO - Medical Decision Making
JF - Medical Decision Making
IS - 1
ER -