BACKGROUND: With increased cure rates, pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease, symptoms, and functional capacity. PROCEDURE: Nurses as proxy respondents used the Health Utilities Index 3 (HUI3) to assess the health-related quality of life (HRQL) in twenty-five patients (age 6 years or older) enrolled on a frontline protocol for leukemia. HRQL observations (n = 70) were made at three different time points to coincide with high-dose methotrexate therapy. Additionally, the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined, the number of unassessable HRQL items increased. These missing data made scoring cumbersome and precluded calculation of the overall HRQL scores for nearly 50% of the patients. CONCLUSIONS: Use of the provider proxy-assessed HUI3 in pediatric cancer trials may result in a high proportion of missing data. Trials may benefit more from the use of HRQL measures that consider the acuity of the child's illness, domains specific and sensitive to both disease and treatment, and items that can be proxy-assessed independent of input from parent or patient. Evaluations that combine child self-reports with both parent and provider reports may ultimately provide the most reliable and comprehensive perspective on children's quality of life.
BACKGROUND: With increased cure rates, pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease, symptoms, and functional capacity. PROCEDURE: Nurses as proxy respondents used the Health Utilities Index 3 (HUI3) to assess the health-related quality of life (HRQL) in twenty-five patients (age 6 years or older) enrolled on a frontline protocol for leukemia. HRQL observations (n = 70) were made at three different time points to coincide with high-dose methotrexate therapy. Additionally, the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined, the number of unassessable HRQL items increased. These missing data made scoring cumbersome and precluded calculation of the overall HRQL scores for nearly 50% of the patients. CONCLUSIONS: Use of the provider proxy-assessed HUI3 in pediatric cancer trials may result in a high proportion of missing data. Trials may benefit more from the use of HRQL measures that consider the acuity of the child's illness, domains specific and sensitive to both disease and treatment, and items that can be proxy-assessed independent of input from parent or patient. Evaluations that combine child self-reports with both parent and provider reports may ultimately provide the most reliable and comprehensive perspective on children's quality of life.
Authors: Samantha J Anthony; Enid Selkirk; Lillian Sung; Robert J Klaassen; David Dix; Katrin Scheinemann; Anne F Klassen Journal: Qual Life Res Date: 2013-08-02 Impact factor: 4.147
Authors: Jean-Eric Tarride; Natasha Burke; Matthias Bischof; Robert B Hopkins; Linda Goeree; Kaitryn Campbell; Feng Xie; Daria O'Reilly; Ron Goeree Journal: Health Qual Life Outcomes Date: 2010-01-27 Impact factor: 3.186
Authors: Mark A Espeland; Gareth R Dutton; Rebecca H Neiberg; Owen Carmichael; Kathleen M Hayden; Karen C Johnson; Robert W Jeffery; Laura D Baker; Delilah R Cook; Dalane W Kitzman; Stephen R Rapp Journal: J Gerontol A Biol Sci Med Sci Date: 2018-10-08 Impact factor: 6.053
Authors: Raphaële R L van Litsenburg; Jaap Huisman; Hein Raat; Gertjan J L Kaspers; Reinoud J B J Gemke Journal: Qual Life Res Date: 2012-05-01 Impact factor: 4.147