We evaluated four different health related quality of life measures to determine their ability to detect change over time. The four measures included the Health Utilities Index Mark 2 and 3 (HUI 2/3), the PedsQLTM 4.0 Generic Core and Cancer Module, the EuroQol and the Lansky Play - Performance Scale. Children with Hodgkin’s disease, their parents and the clinic nurse were all asked to complete the four measures at four time points: 2 weeks after the 1st course of chemotherapy, on the 3rd day of the 2nd course of chemotherapy, during the 3rd week of radiation and 1 year after diagnosis. At each follow up time point the respondents were asked to indicate whether the child’s HRQL had improved, stayed the same or became worse since the last measurement. 51 adolescents from 12 centres across Canada were enrolled in the study between May 1, 2002 and March 31, 2005. Two patients were excluded: one patient died shortly after the first time point, and the other patient failed to complete any of the questionnaires. The 49 patients included in the analysis had an average age of 14.7 years (8.9 - 17.9), with the two most common stages being IIA (39%) and IVA (18%). Complete data was available on 92% of patients at time 2, 89% at time 3 and 76% at time 4. Four of the 36 patients with complete follow up had relapsed (11%). The summary scores from the patients responses can be seen in the graph below.

Figure
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Figure

All measures showed a significant change between time 1 and time 4 (<0.05). When the change in child scores was analysed between the time points using the child’s self-reported change in HRQL, the PedsQL and the EuroQol showed significant change at all time points.

Change in Measures According to Reported Global Rating of Change by Patient

Time PeriodHUI2HUI3PedsQLPedsQL cancerEuroQolLansky
Improved       
1 to 2, n = 7 0.022 0.011 0.015 0.046 0.001 NS 
2 to 3, n = 15 NS NS 0.028 0.039 0.017 NS 
3 to 4, n = 20 NS NS 0.011 NS <0.001 <0.001 
Same       
1 to 2, n = 16 NS NS 0.033 NS NS NS 
2 to 3, n = 9 NS NS 0.039 0.006 NS 0.028 
3 to 4, n = 1 NS NS NS NS NS NS 
Worse       
1 to 2, n = 6 NS NS NS NS 0.033 NS 
2 to 3, n = 0 NS NS NS NS NS NS 
3 to 4, n = 1 NS NS NS NS NS NS 
Time PeriodHUI2HUI3PedsQLPedsQL cancerEuroQolLansky
Improved       
1 to 2, n = 7 0.022 0.011 0.015 0.046 0.001 NS 
2 to 3, n = 15 NS NS 0.028 0.039 0.017 NS 
3 to 4, n = 20 NS NS 0.011 NS <0.001 <0.001 
Same       
1 to 2, n = 16 NS NS 0.033 NS NS NS 
2 to 3, n = 9 NS NS 0.039 0.006 NS 0.028 
3 to 4, n = 1 NS NS NS NS NS NS 
Worse       
1 to 2, n = 6 NS NS NS NS 0.033 NS 
2 to 3, n = 0 NS NS NS NS NS NS 
3 to 4, n = 1 NS NS NS NS NS NS 
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All of the measures were able to detect change in a diverse group of children with Hodgkin’s Disease. The PedsQL and the EuroQol appeared to be the most sensitive to change.

Topics:
child, health-related quality of life, hodgkin's disease, pediatric quality of life, cancer, chemotherapy regimen, follow-up, adolescent, nurses, time factors

Author notes

Corresponding author

2005, The American Society of Hematology
2005
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