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Identification of paediatric cancer patients with poor quality of life

Identification of paediatric cancer patients with poor quality of life Clinical Studies British Journal of Cancer (2009) 100, 82 – 88 & 2009 Cancer Research UK All rights reserved 0007 – 0920/09 $32.00 www.bjcancer.com ,1,6 2 3,4 3,4 5 6 6 7 L Sung , RJ Klaassen , D Dix , S Pritchard , R Yanofsky , B Dzolganovski , R Almeida and A Klassen 1 2 Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada; Department of Pediatrics, Children’s Hospital of Eastern Ontario, 401 Smyth, Ottawa, ON, K1H 8L1, Canada; Department of Pediatrics, University of British Columbia, A119D, 4480 Oak Street, Vancouver, BC, V6H 4C9, Canada; Department of Pediatrics, University of British Columbia, A123D, 4480 Oak Street, Vancouver, BC, V6H 3V4, Canada; Department of Pediatrics and Child Health, University of Manitoba, 675 McDermot Avenue, Winnipeg, MB, R3E 0V9, 6 7 Canada; Child Health Evaluation Sciences, The Hospital for Sick Children, 424, 123 Edward Street, Toronto, ON, M5G 1E2, Canada; Department of Pediatrics, McMaster University, HSC 3N27, 1200 Main Street West, Hamilton, ON, L8S 4J9, Canada The primary objective was to describe predictors of physical, emotional and social quality of life (QoL) in children receiving active treatment for cancer. This Canadian multi-institutional cross-sectional study included children with cancer receiving any type of active treatment. The primary caregiver provided information on child physical, emotional and social QoL according to the PedsQL 4.0 Generic Core scales. Between November 2004 and February 2007, 376 families provided the data. In multiple regression, children with acute lymphoblastic leukemia had better physical health (OR: 0.37, 95% CI 0.23, 0.60; Po0.0001) while intensive chemotherapy treatment (OR: 2.34, 95% CI: 1.42, 3.85; P¼ 0.0008) and having a sibling with a chronic condition (OR: 2.53, 95% CI: 1.54, 4.15; P¼ 0.0002) were associated with poor physical QoL. Better emotional health was associated with good prognosis, less intensive chemotherapy treatment and greater household savings, whereas female children and those with a sibling with a chronic condition had poor social QoL. Physical, emotional and social QoL are influenced by demographic, diagnostic and treatment variables. Sibling and household characteristics are associated with QoL. This information will help to identify children at higher risk of poor QoL during treatment for cancer. British Journal of Cancer (2009) 100, 82–88. doi:10.1038/sj.bjc.6604826 www.bjcancer.com Published online 9 December 2008 & 2009 Cancer Research UK Keywords: quality of life; children; chemotherapy Measurement of quality of life (QoL) in paediatric cancer patients Paediatric cancer patients are often very young, which emphasises is becoming increasingly emphasized in clinical trials. This difficulty with self-report. Proxies, usually the parent, may need to outcome is important as it provides a measure of well-being from provide information on their behalf (Matza et al, 2004; Eiser and the perspective of the parent or child. To date, most QoL research Jenney, 2007). Eiser and Morse (Eiser and Morse, 2001a, b) have in paediatric cancer has been directed towards the development of systematically reviewed parent proxy and child self-report of QoL reliable and valid instruments and describing expected QoL in this and found that parents and children typically agreed upon more population. Ultimately, better understanding of QoL in children observable phenomenon, such as the level of physical activity, with cancer may be useful for several reasons. This knowledge may functioning and symptoms. Conversely, poor agreement was seen help parents and children anticipate the expected course of events in more subjective areas, such as social or emotional functioning during treatment. In addition, measurement of QoL may help (Eiser and Morse, 2001a, b). Although parent and child responses families and healthcare professionals choose specific treatment may differ, others have emphasised that parent perspectives are strategies, if these strategies are associated with similar survival important and valid perspectives of the child’s QoL (Matza et al, rates but different expected QoL. Another goal, though, may be to 2004; Pickard et al, 2004; Eiser and Jenney, 2007). As parents are identify a group of children with expected poor QoL such that they often the primary reporters of symptoms and are the main could be targeted for supportive care interventions to improve decision-makers on behalf of their child, their evaluation of QoL is their health. clinically relevant, when used in a complementary manner to child There are many challenges to measuring QoL in children. First is self-report when obtainable (Matza et al, 2004; Pickard et al, 2004; the issue of self-report vs proxy report. Although self-report is the Eiser and Jenney, 2007). usual method for assessing QoL, this method is not always feasible Second, choosing a specific instrument to measure QoL in a or possible for children with health conditions who may be too ill, study is challenging. In general, generic and disease-specific unwilling or lacking the necessary language skills, attention span instruments are available (Guyatt et al, 1993). Disease-specific or cognitive abilities to complete questionnaires themselves. measures may be most useful when responsiveness and sensitivity are important. However, generic instruments also are important as *Correspondence: Dr L Sung; E-mail: Lillian.sung@sickkids.ca there are normative reference data and their use permits compa- Received 30 May 2008; revised 11 November 2008; accepted 21 rison across different patient populations (Spieth and Harris, 1996). November 2008; published online 9 December 2008 For our purpose, the PedsQL generic module represented a Quality of life in paediatric cancer L Sung et al particularly attractive generic measure as it has been widely used in economy of multiple individuals living in a single household children with cancer and there are enough normative data and compared with per capita income (Carson, 2002). previous experience to allow us to delineate a group with particularly In addition to the data provided by parents, diagnosis and poor QoL. treatment information were abstracted from hospital charts by Most of the literature attempting to predict QoL in children with institutional clinical research associates. Institutional research cancer has focused on late effects of cancer. However, QoL during ethics approval was obtained from each of the participating centers active treatment also is important to children and their families. and written informed consent was obtained from all participants. Studies of children receiving active treatment primarily have consisted of small studies that did not identify those at high risk of Outcomes poor outcomes (Nathan et al, 2004). Consequently, the primary objective of this report was to describe predictors of physical, The PedsQL is a multidimensional instrument that is reliable and emotional and social QoL in children receiving chemotherapy for valid in healthy populations and in children with cancer (Varni. cancer. The secondary objective was to identify children at risk for et al, 1998a, b, 1999a, b, 2001, 2002). This instrument is composed particularly poor QoL as defined as physical, emotional and social of a 23-item PedsQL 4.0 Generic Core scale that reflects four QoL that was at least two standard deviations below the mean for a dimensions, namely physical, emotional, social and school general paediatric population. functionings. In general, the summary scores available from the PedsQL are psychosocial and physical scores, with psychosocial scores consisting of emotional, social and school dimensions. MATERIALS AND METHODS Because children on cancer chemotherapy often do not attend school, we could not assess the school domain for the majority of Patients children, and consequently, we did not determine the psychosocial summary score. Thus, the outcomes for this study were the This study was a subset of a larger study designed to evaluate physical, emotional and social summary scores of the PedsQL 4.0 psychosocial health in parents of children receiving chemotherapy Generic Core Scales. A 1-month recall period was used. for cancer (Klassen et al, 2008). Children were eligible for inclusion We examined dimension scores in two ways. First, to determine if they were receiving treatment for any type of malignancy, if they what factors were associated with the three dimension scores, we were initially diagnosed more than 2 months before enrollment on examined the scores as continuous variables, which maximized the this study, and if they were not considered palliative as defined as ability to identify predictors of these outcomes assuming that the no reasonable chance for cure by their healthcare team. In relationship between the predictors and outcomes was linear. We addition, children were only eligible if the parent respondent was presented these associations as b-coefficients with their standard the person most responsible for the day-to-day decision-making errors as derived from linear regression. Positive b-coefficients for that child for the past year and the parent respondent could meant that the predictor (or increasing values of the predictor) was read English. Children were enrolled from five tertiary care associated with better QoL, whereas negative b-coefficients Canadian paediatric cancer centres as follows: BC’s Children’s suggested that the predictor (or increasing values of the predictor) Hospital (Vancouver), CancerCare Manitoba (Winnipeg), Chil- was associated with worse QoL. Second, we also wanted to dren’s Hospital of Eastern Ontario (Ottawa), The Hospital for Sick determine predictors of clinically significant impairment of Children (Toronto) and McMaster Children’s Hospital (Hamilton). physical, emotional and social QoL. Varni et al (2003) previously explored the cutoff points for ‘at-risk status’ for impaired QoL and Methods determined in a large paediatric population, that one standard deviation below the mean of the total population sample was a Patients were approached for participation either in the in-patient clinically meaningful measure of impaired QoL as it represented or outpatient settings in a consecutive fashion. The family was scores similar to children with severe chronic health condition. given a booklet to complete in which questions about the child’s However, because our population consisted of children with a QoL were asked (see Outcomes below). The booklet also contained chronic health condition (namely cancer), we defined low QoL as a questions about child, parent and family characteristics. The score of two standard deviations below the population mean; completed booklet was returned to the team in person or by mail. (Varni et al, 2003); these values were derived using data from a Child variables included demographic information, and informa- PedsQL database (Varni et al, 2007b). tion on diagnosis, treatment and parent-reported prognosis (very To see whether the model could distinguish between children good or excellent vs good, fair or poor). We asked parents about with and without poor physical, emotion and social QoL, we the intensity of treatment, which was scored on a 5-point rating compared items from the PedsQL 3.0 Acute Cancer Module for scale (more intensive (4 or 5) vs less intensive (1–3)). Both the these 2 groups and based on clinical experience, hypothesized that prognosis and intensity of treatment scales were developed for this those who were at high risk for poor physical health should have study. We also asked whether the child had a chronic condition worse pain and hurt scores, those at high risk for poor emotional other than cancer. Parent variables included demographics, health should have worse pain and hurt, nausea, anxiety, worry highest education of the primary caregiver and their spouse, and cognition scores and those at high risk for poor social health employment and marital status and whether the primary caregiver should have worse scores on the communication and cognition had a chronic condition. Family variables included whether a domains. sibling had a chronic condition, household income and savings. Categorisation for chronic conditions in children and adults was derived from those used in the National Longitudinal Survey of Statistics Children and Youth (NLSCY; Statistics Canada, 2002). The NLSCY is a long-term study conducted by Statistics Canada, which follows Potential predictors of physical, emotional and social scores were the development and well-being of Canadian children from birth to determined using univariate linear or logistic regression analyses early adulthood. Household income was recoded into above and depending on whether the outcome was QoL as a continuous or below $60 000 annually (approximate median value in this sample). dichotomous variable. For multiple regression modelling, factors We also computed adjusted family income, a measure of income that were associated with QoL at Po0.1 were entered into a that adjusts for family size and composition that accounts for the forward selection model. All statistical analyses were performed benefits of multiple wage earners in the family as well as the using the SAS statistical program (SAS-PC, version 9.1; SAS & 2009 Cancer Research UK British Journal of Cancer (2009) 100(1), 82 – 88 Clinical Studies Clinical Studies Quality of life in paediatric cancer L Sung et al Institute Inc., Cary, NC). All tests of significance were two-sided, (62/376; 16.5%) and depression (57/376; 15.2%). The most and statistical significance was defined as Po0.05. common chronic conditions reported for siblings were non-food allergies (35/376; 9.3%), mental handicap (13/376; 3.5%) and heart problems (10/376; 2.7%). The mean summary score for physical function was 54.9 (95% RESULTS CI: 9.4, 96.9; N¼ 374), which was 28.4 points lower than the mean Subjects were enrolled between November 2004 and February physical function score of 83.3 found in a large statewide pediatric 2007. A total of 513 parents were asked to participate in this study survey in which QoL was assessed in 10 241 families (Varni et al, and 501 agreed. We received completed questionnaires back from 2003). Similarly, the mean summary scores for emotional QoL was 412 parents, giving an overall response rate of 80.3%. We excluded 61.1 (95% CI: 25, 95; N¼ 376), which was 19.2 points lower than data for one parent who answered the questionnaire retro- the mean emotional score of 80.3 in the statewide survey (Varni spectively, leaving a sample size of 411. Of these 411, 376 had et al, 2003), and the mean summary scores for social QoL was 69.7 children who were at least 2 years of age and could complete the (95% CI: 35, 100; N¼ 372), which was 12.5 points lower than the PedsQL assessment. Parent and child characteristics appear in mean social score of 82.2 in the statewide survey (Varni et al, Table 1. Of the 376 children, 275 (73.1%) had leukemia or 2003). In our study, poor QoL was defined as QoL that was at least lymphoma and most children had acute lymphoblastic leukemia two standard deviations below the mean for a general paediatric (ALL; 214/376, 56.9%). The remaining children had a solid tumour population. Two standard deviations below the population mean (55/376, 14.6%) or a brain tumour (35/376, 9.3%). Disseminated varied by child age, but this value ranged from 36.82 to 61.59 for disease was present in 27/376 (7.2%) of the entire cohort and was physical function, whereas the value ranged from 41.42 to 56.82 for present in 17/55 (30.9%) of those with solid tumours. The majority emotional scores and 32.07 to 60.63 for social scores (Varni et al, of parents rated their child’s prognosis as very good or excellent 2007b). The number of children with particularly poor physical, (293/376; 77.9%). The most common chronic conditions reported emotion and social QoL as defined as scores at least two standard for parents were anxiety (65/376; 17.3%), respiratory allergies deviations below the population mean were 143/374 (38.2%), 94/ 376 (25%) and 51/372 (13.7%), respectively. Table 1 Demographics of study population Table 2 illustrates that the child factors associated with better physical health were younger child age, ALL, better parent-rated Variable N Value prognosis, absence of radiotherapy or surgery to remove cancer, less intensive chemotherapy treatment and absence of other child Child factors chronic conditions. Parent factors that were associated with better Age, no. (%) 376 child physical health were younger parent age, and the absence of a 2 – 4 years 110 (29.3) chronic condition in the parent. Finally, if the sibling had a chronic 5 – 7 years 87 (23.1) condition, then the child’s physical health was worse. Tables 2 also 8 – 12 years 84 (22.3) illustrates the factors that were associated with emotional and X13 years 95 (25.3) Median years since diagnosis (IQR) 376 0.6 (0.3, 1.3) social QoL in univariate linear regression. Male (%) 376 215 (57.2) In examining multiple regression models, only child age was Cancer diagnosis, no. (%) 376 included if both child age and parent age met criteria for inclusion Leukemia 233 (62.0) into the model because they were highly correlated (Spearman Lymphoma 42 (11.2) r¼ 0.61; Po0.0001). Similarly, if both ALL and any surgery to Neuroblastoma 19 (5.1) remove cancer met criteria for inclusion in the multiple regression Sarcoma 36 (9.6) model, only ALL was included because they were highly negatively Brain 35 (9.3) correlated (Spearman r¼0.61; Po0.0001). Finally, in terms of Other 11 (2.9) No. acute lymphoblastic leukemia (%) 375 214 (57.1) family factors, if both adjusted income and savings of at least No. acute myeloid leukemia (%) 376 13 (3.5) $10 000 both met criteria to be included in multiple regression, No. relapse (%) 376 31 (8.2) only adjusted income was used as they were highly correlated No. prognosis of very good or excellent (%) 363 293 (80.7) (Spearman r¼ 0.52; Po0.0001). No. received radiation (%) 376 82 (21.8) Variables that were independently associated with physical, No. received any surgery to remove 376 79 (21.0) emotional and social QoL appear in Table 3. Older child age and cancer (%) more intensive chemotherapy treatment both were independently No. received SCT (%) 376 30 (8.0) associated with worse physical, emotional and social functions. No. intensive chemotherapy treatment (%) 370 110 (29.7) Interestingly, if the child’s parents reported that the sibling or No. received alternative treatment (%) 374 32 (8.6) parent had a chronic condition, this occurrence was associated Parent factors with worse function in the child with cancer; those with a parent Median parent age in years (range) 368 39.1 (20.2, 75.9) with a chronic condition has worse physical and emotional No. male (%) 375 47 (12.5) functions, whereas those with a sibling with a chronic condition No. first parenting experience (%) 369 168 (45.5) had worse physical and social functions. No. smoke (%) 376 67 (17.8) Tables 4 and 5 illustrate logistic regression analyses to examine No. university degree (%) 376 120 (31.9) predictors of poor physical, emotional and social QoL as defined as No. working (%) 371 163 (43.9) having a score less than two standard deviations below the No. chronic condition (%) 376 215 (57.2) population mean. In multiple logistic regression analyses, a No. married (%) 376 311 (82.7) diagnosis of ALL independently predicted for better physical Household factors function, whereas those receiving intensive chemotherapy treat- No. sibling with chronic condition (%) 376 110 (29.3) ment as perceived by the parent, and those with a sibling with a No. annual household income X$60 000 (%) 354 182 (51.4) chronic condition had a two- to three-fold increased odds for poor Median adjusted household income in 349 28 846 (17 500, 42 500) physical QoL (Table 5). In terms of emotional QoL, those with a dollars (IQR) parent-rated prognosis of very good or excellent and those with No. savings X$10 000 (%) 330 164 (49.7) savings of at least $10 000 had better emotional function, whereas IQR¼ interquartile range. The total sample size of 376; some respondents did not those receiving intensive chemotherapy treatment were at an complete all questions. almost five-fold increased odds of poor emotional function. British Journal of Cancer (2009) 100(1), 82 – 88 & 2009 Cancer Research UK Quality of life in paediatric cancer L Sung et al Table 2 Univariate predictors of summary physical, emotional and social dimension scores Physical summary score Emotional summary score Social summary scores b b b ± ± ± Variable b s.e. P-value b s.e. P-value b s.e. P-value Child factors ± ± ± Age in years 1.74 0.26 o0.0001 0.85 0.21 o0.0001 0.91 0.22 o0.0001 ± ± ± Time since diagnosis 0.70 0.98 0.48 0. 00 0.80 1.00 2.53 0.83 0.003 ± ± ± Male 3.75 2.66 0.16 3.80 2.09 0.07 5.14 2.14 0.02 ± ± ± Acute lymphoblastic leukemia 13.28 2.57 o0.0001 5.83 2.08 0.005 5. 66 2.15 0.009 ± ± ± Relapse 5.03 4.70 0.29 1.73 3.78 0.65 10.35 3.89 0.008 ± ± ± Prognosis of very good or excellent 10.73 3.36 0.002 10.73 2.63 o0.0001 10.10 2.70 0.0002 ± ± ± Radiation 9.41 3.15 0.003 4.02 2.51 0.11 4.42 2.60 0.09 ± ± ± Surgery to remove cancer 14.61 3.14 o0.0001 3.84 2.55 0.13 7.01 2.60 0.008 ± ± ± Stem cell transplant 7.57 4.83 0.12 0.83 3.84 0.83 6.25 3.92 0.11 ± ± ± Intensive chemotherapy treatment 15.06 2.79 o0.0001 12.96 2.18 o0.0001 7.65 2.32 0.001 ± ± ± Alternative treatment 3.55 4.63 0.44 7.90 3.72 0.03 7.23 3.79 0.06 ± ± ± Other chronic condition 9.46 3.44 0.006 6.72 2.73 0.01 3.27 2.81 0.25 Parent factors ± ± ± Age in years 0.66 0.19 0.0006 0.16 0.15 0.31 0.19 0.16 0.23 ± ± ± Male 3.00 3.98 0.45 7.02 3.13 0.03 2.68 3.22 0.41 ± ± ± Smoke 4.67 3.45 0.18 4.20 2.71 0.12 4.21 2.79 0.13 ± ± ± University Education 4.37 2.81 0.12 1.63 2.23 0.47 4.55 2.28 0.05 ± ± ± Working 4. 23 2.67 0.11 4. 32 2.10 0.04 5.63 2.15 0.009 ± ± ± Chronic condition 10.14 2.61 0.0001 9.13 2.05 o0.0001 8.68 2.11 o0.0001 ± ± ± Married 6.02 3.46 0.08 5. 84 2.74 0.03 7.14 2.79 0.01 Household factors ± ± ± Sibling with chronic condition 11.30 2.83 o0.0001 4.19 2.28 0.07 8.57 2.32 0.0002 ± ± ± Annual household income X$60 000 2.18 2.69 0.42 1.25 2.13 0.56 5.24 2.20 0.02 ± ± ± Adjusted household income 0.00 0.00 0.30 0.00 0.00 0.86 0.00 0.00 0.006 ± ± ± Savings X$10 000 1.11 2.78 0.69 0.83 2.17 0.70 4.30 2.20 0.05 a b s.e.¼ standard error. Mean summary scores are presented in the Results. b-Coefficient from univariate linear regression. Positive b-coefficients meant that the predictor (or increasing values of the predictor) was associated with better quality of life, whereas negative b-coefficients suggested that the predictor (or increasing values of the predictor) was associated with worse quality of life. Table 3 Multiple linear regression for physical, emotional and social Finally, female children and having a sibling with a chronic summary scores condition increased the odds of poor social function (Table 5). Table 6 shows that groups predicted to be at high risk for poor Variable b s.e. P-value physical, emotional and social QoL according to the multiple regression models had worse scores on the PedsQL acute cancer Physical summary score module domains hypothesized to be associated with physical, Age of the child 1.37 0.26 o0.0001 emotion and social health. Acute lymphoblastic leukemia 5.93 2.50 0.02 Intensive chemotherapy treatment 6.12 0.90 o0.0001 Parent with chronic condition 5.45 2.40 0.02 Sibling with chronic condition 8.52 2.56 0.001 DISCUSSION Emotional summary score We determined variables independently associated with physical, Age of the child 0.68 0.19 0.0005 emotional and social QoL in children receiving active treatment for Male child 3.80 1.88 0.04 ± cancer. In addition, we were able to delineate a group of children at Prognosis of very good or excellent 7.84 2.38 0.001 Intensive chemotherapy treatment 5.47 0.72 o0.0001 particularly high risk of poor QoL as defined as two standard Male parent 6.17 2.82 0.03 deviations below the mean score for healthy children. As expected, Married 4.96 2.50 0.05 when QoL was examined as a continuous (rather than dichot- Parent with chronic condition 5.29 1.94 0.007 omous) variable, regression analyses yielded a greater number of significant predictors of QoL. This information is helpful for Social summary score gaining insight into what factors impact on QoL for children with Age of the child 0.94 0.22 o0.0001 cancer. Time since diagnosis 3.52 0.94 0.0004 However, predicting low QoL probably is clinically more Male child 5.14 2.07 0.01 ± relevant to identify high-risk children who may be targeted for Intensive chemotherapy treatment 3.93 0.81 o0.0001 Parent working 5.72 2.11 0.01 future supportive care interventions. We found that children with Sibling with chronic condition 5.90 2.22 0.02 ALL had better physical function, whereas those whose parents Household adjusted income 0.00 0.00 0.004 reported more intensive chemotherapy treatment and those with a siblings with a chronic condition had poorer physical QoL. Parent s.e.¼ standard error. Mean summary scores are presented in the Results. self-reported worse prognosis, more intensive chemotherapy b-coefficient from univariate linear regression, Positive b-coefficients meant that treatment and smaller household savings all predicted worse the predictor (or increasing values of the predictor) was associated with better quality emotional function. Finally, being female and having a sibling with of life, whereas negative b-coefficients suggested that the predictor (or increasing values of the predictor) was associated with worse quality of life. a chronic condition predicted for poor social function. & 2009 Cancer Research UK British Journal of Cancer (2009) 100(1), 82 – 88 Clinical Studies Clinical Studies Quality of life in paediatric cancer L Sung et al a,b Table 4 Predictors of low physical, emotional and social summary scores Physical summary score Emotional summary score Social summary score Variable OR (95% CI) P-value OR (95% CI) P-value OR (95% CI) P-value Child factors Age in years 1.07 (1.02, 1.12) 0.003 0.99 (0.95, 1.04) 0.80 0.99 (0.93, 1.05) 0.77 Time since diagnosis 0.98 (0.84, 1.15) 0.79 0.92 (0.75, 1.12) 0.39 1.16 (0.96, 1.41) 0.12 Male 0.70 (0.46, 1.06) 0.09 1.08 (0.67, 1.73) 0.76 0.44 (0.24, 0.80) 0.008 Acute lymphoblastic leukemia 0.35 (0.23, 0.53) o0.0001 0.77 (0.48, 1.22) 0.26 0.99 (0.54, 1.79) 0.97 Relapse 1.12 (0.53, 2.34) 0.75 0.70 (0.28, 1.77) 0.45 2.06 (0.84, 5.09) 0.12 Prognosis of very good or excellent 0.48 (0.28, 0.82) 0.007 0.34 (0.20, 0.60) 0.0001 0.59 (0.29 1.19) 0.14 Radiation 1.44 (0.88, 2.37) 0.15 1.13 (0.65, 1.97) 0.67 0.76 (0.35, 1.62) 0.47 Any surgery to remove cancer 3.04 (1.83, 5.07) o0.0001 0.78 (0.43, 1.42) 0.42 1.35 (0.68, 2.68) 0.39 Stem cell transplantation 2.26 (1.06, 4.81) 0.03 1.32 (0.58, 2.98) 0.51 1.29 (0.47, 3.53) 0.62 Intensive chemotherapy treatment 2.59 (1.64, 4.10) o0.0001 4.09 (2.49, 6.72) o0.0001 1.76 (0.95, 3.25) 0.07 Alternative treatment 1.20 (0.58, 2.48) 0.62 1.90 (0.89, 4.06) 0.10 1.92 (0.78, 4.71) 0.15 Other chronic condition 1.87 (1.09, 3.20) 0.02 1.18 (0.65, 2.16) 0.58 0.59 (0.24, 1.45) 0.25 Parent factors Age in years 1.02 (0.99, 1.06) 0.099 0.98 (0.95, 1.02) 0.28 0.97 (0.92, 1.01) 0.14 Male 0.73 (0.38, 1.39) 0.33 0.68 (0.31, 1.46) 0.32 0.39 (0.12, 1.31) 0.13 Smoke 1.44 (0.84, 2.46) 0.18 1.48 (0.83, 2.63) 0.19 0.99 (0.46, 2.15) 0.98 University Education 0.73 (0.47, 1.16) 0.18 0.77 (0.46, 1.28) 0.31 0.97 (0.51, 1.83) 0.92 Working 0.66 (0.43, 1.01) 0.06 0.70 (0.43, 1.14) 0.15 0.50 (0.26, 0.94) 0.03 Chronic condition 1.83 (1.19, 2.82) 0.008 1.97 (1.20, 3.24) 0.007 1.98 (1.04, 3.75) 0.04 Married 0.91 (0.53, 1.58) 0.75 0.59 (0.33, 1.05) 0.07 0.85 (0.40, 1.79) 0.67 Household factors Sibling with chronic condition 2.35 (1.49, 3.70) 0.0002 1.44 (0.88, 2.37) 0.15 1.88 (1.02, 3.46) 0.04 Annual household income X$60 000 0.89 (0.58, 1.37) 0.59 0.70 (0.43, 1.15) 0.16 0.68 (0.37, 1.25) 0.21 Adjusted household income per $100 000 1.00 (0.88, 1.14) 0.97 0.90 (0.77, 1.04) 0.15 0.95 (0.79, 1.14) 0.57 Savings X$10 000 0.98 (0.63, 1.53) 0.93 0.63 (0.38, 1.06) 0.08 0.78 (0.41, 1.46) 0.44 a b CI¼ confidence interval; OR¼ odds ratio. Mean summary scores are presented in the Results. Low is defined as p2 s.d. below the mean for a general paediatric population (see Methods). Table 5 Multiple logistic regression for low physical, emotional and social sibling chronic condition on the child’s QoL was consistent among a,b summary scores the different analyses. More specifically, those with a sibling with a chronic condition had particularly poor physical and social QoL. c a Variable OR (95% CI) P-value Others have shown that parents with poor physical or psychosocial health have children with poorer QoL in several different Physical summary score conditions (Silver et al, 1998; Waters et al, 2000; Wagner et al, Diagnosis of not acute lymphoblastic leukemia 2.67 (1.67, 4.28) o0.0001 2003; Williams et al, 2003). A study in paediatric cancer also found Intensive chemotherapy treatment 2.34 (1.42, 3.85) 0.0008 an association between maternal depression and child self- Sibling with chronic condition 2.53 (1.54, 4.15) 0.0002 reported poor QoL (Vance et al, 2001). We were not able to identify literature that specifically examined sibling chronic Emotional summary score Prognosis of not very good or excellent 2.66 (1.39, 5.11) 0.003 conditions and paediatric cancer QoL, and thus our finding is Intensive chemotherapy treatment 4.90 (2.78, 8.64) o0.0001 unique. Less than $10 000 of savings 1.77 (1.00, 3.12) 0.0496 Several possibilities may explain these associations. First, there may be a biological explanation; the chronic conditions Social summary score may be heritable, and thus may be causative in the child Child female 2.27 (1.22, 4.23) 0.01 with cancer’s poor QoL. However, this hypothesis is not supported Sibling with chronic condition 2.12 (1.13, 3.96) 0.02 by our data as we did not find an association between the OR¼ odds ratio; CI¼ confidence interval. Mean summary scores are presented in child with cancer having a chronic condition and worse QoL. the Results. Low is defined as p2 s.d. below the mean for a general paediatric Second, it is possible that parents who perceive their own health or population (see Methods). potential predictors shown in terms of factors associated the health of their other children as worse may also perceive that with worse quality of life (e.g., in this table, female child gender is shown rather than the child with cancer has worse QoL. Finally, it is possible that male child gender). having a sibling with a chronic condition is somehow causative in poor physical and social QoL related to effects on the home environment. Our finding that children with ALL had better physical function A limitation of our study is that we used only parent-reported than children with other types of cancers is not surprising and is QoL. Parent and child report are known to differ, especially for the consistent with other reports (Meeske et al, 2004; Varni et al, psychosocial domains of health (Eiser and Morse, 2001a). 2007a). It also is clinically intuitive that more intensive However, in our study, proxy report was necessary as a large chemotherapy treatment would be associated with worse physical proportion of the sample were too young to provide self-report and emotional functions. data. In addition, others have noted that the multiple different We also found that chronic diseases in the sibling and parent perspectives of QoL including the parent perspective are all were associated with the child’s QoL. This influence of parent and important and contribute to our understanding of child health British Journal of Cancer (2009) 100(1), 82 – 88 & 2009 Cancer Research UK Quality of life in paediatric cancer L Sung et al Table 6 Comparison of PedsQL acute cancer module items hypothesised to be different between those predicted to be at high and low risk for poor physical, emotional and social functionings a b Variable High risk group Median (IQR) Low risk group Median (IQR) P-value Physical summary score N¼ 19 N¼ 357 0.037 Pain and hurt 50.0 (37.5, 62.5) 62.5 (50.0, 75.0) Emotional summary score N¼ 8 N¼ 368 Pain and hurt 25.0 (18.8, 56.3) 62.5 (50.0, 75.0) 0.01 Nausea 25.0 (12.5, 37.5) 55.0 (40.0, 75.0) 0.0003 Anxiety 29.2 (12.5, 37.5) 50.0 ( 25.0, 75.0) 0.08 Worry 50.0 (29.2, 50.0) 75.0 (50.0, 100.0 ) 0.01 Cognition 43.3 (17.5, 50.0) 68.8 (50.0, 87.5) o0.0001 Social summary score N¼ 41 N¼ 335 Communication 50.0 (33.3, 75.0) 75.0 (50.0, 91.7) 0.0005 Cognition 55.0 (41.7, 65.0 70.0 (50.0, 87.5) 0.0002 IQR¼ interquartile range; PedsQL¼ paediatric quality of life inventory. Predicted high-risk group defined as those with attributes identified as independently associated with poor functioning in logistic multiple regression (from Table 5). P-value for comparison between high- and low-risk groups using Wilcoxon rank-sum test. (Pickard et al, 2004). Nonetheless, future research should focus on to try and capture in a summary form the effects of these different child self-report to understand whether such an approach results phases of symptoms. However, future research within specific in fundamentally different high-risk groups compared with parent diagnostic subgroups will be able to better define the contribution of proxy respondents. Second, we modelled several different out- specific chemotherapy protocols and agents to QoL. comes, and therefore there is a possibility of chance findings. The strengths of our study include that we sampled paediatric These analyses were all conducted as secondary objectives, and cancer patients from multiple centers, and thus have data that are therefore these results must be considered hypothesis generating. generalisable. In addition, we have one of the largest cohorts in Third, we developed the prognosis and intensity of therapy scales which sufficient clinical covariates were obtained such that we for this study, and therefore there are no reported data on their were able to built prediction models of the child’s QoL. To the best reliability or validity. Finally, as with any study that attempts to of our knowledge, this is the first description of defining children build a prediction model, similar studies in different populations at risk for particularly poor QoL. of children on active treatment for cancer will be critical to This information may be used in different ways. First, we will be examine model validation and to determine the best variables to able to use the information on predictors to target specific groups delineate a high-risk population at risk for poor QoL. for interventional supportive care trials. For example, we could The results of this study are important as the majority of QoL target children receiving more aggressive chemotherapy treat- research in paediatric cancer has focused on late effects of cancer ments for interventions to improve their physical and emotional therapy, or examined both children on and off treatment rather health. Second, these associations raise new hypotheses about than during active therapy. However, QoL during active treatment contributors to the health of children with cancer. For example, the also is important to study and will influence the experiences of the associations between chronic conditions in the parent and siblings child and family. We would expect that QoL should be very raise the possibility that health of the family may affect the health different between children receiving active treatment vs those who of the child with cancer. have completed treatment, as the treatment period is predomi- In summary, physical, emotional and social QoL are influenced nated by toxicities of therapy and often radical changes in normal by demographic, diagnosis, and treatment variables. In addition, day-to-day routines for the child and family. Conversely, QoL in characteristics of the sibling and household are associated with survivors would be expected to be mostly influenced by sequelae of QoL. This information can be used to identify children at higher therapy. Both of these perspectives are important and improve- risk of poor QoL during active treatment for cancer. ment in QoL during both periods should be a priority. Our report is valuable as it is the largest study to our knowledge focused on ACKNOWLEDGEMENTS QoL in children receiving active treatment for cancer. One of the difficulties with trying to measure QoL in children LS was supported by a Career Development Award with the receiving active treatment for cancer is that symptoms during Canadian Child Health Clinician Scientist Training Programme, a chemotherapy often fluctuate greatly depending on when QoL is strategic training programme with the Canadian Institutes of assessed relative to when chemotherapy is administered, as well as Health Research. AK was supported by a New Investigator Award the specific treatments provided. This issue is most relevant for with the Canadian Institutes of Health Research. The project was aggressive chemotherapy that is typically administered in cycles supported by an Operating Grant from the Canadian Cancer every 2–4 weeks. Our use of a 1-month recall period was an attempt Society. REFERENCES Carson J (2002) Family spending power. Stat Can 3: 5–13 Guyatt GH, Feeny DH, Patrick DL (1993) Measuring health-related quality Eiser C, Jenney M (2007) Measuring quality of life. Arch Dis Child 92: of life. Ann Intern Med 118: 622–629 348–350 Klassen AF, Klaassen R, Dix D, Pritchard S, Yanofsky R, O’Donnell M, Eiser C, Morse R (2001a) Can parents rate their child’s health- Scott A, Sung L (2008) Impact of caring for a child with cancer on related quality of life? Results of a systematic review. Qual Life Res 10: parent’s health-related quality of life. J Clin Oncol 24 November 2008 347–357 [E-pub ahead of print] Eiser C, Morse R (2001b) Quality-of-life measures in chronic diseases of Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK (2004) Assess- childhood. Health Technol Assess 5: 1 –157 ment of health-related quality of life in children: a review of & 2009 Cancer Research UK British Journal of Cancer (2009) 100(1), 82 – 88 Clinical Studies Clinical Studies Quality of life in paediatric cancer L Sung et al conceptual, methodological, and regulatory issues. Value Health 7: Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM 79–92 (1998b) The Pediatric Cancer Quality of Life Inventory (PCQL). I. Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JW (2004) Parent Instrument development, descriptive statistics, and cross-informant proxy-reported health-related quality of life and fatigue in pediatric variance. J Behav Med 21: 179– 204 patients diagnosed with brain tumors and acute lymphoblastic leukemia. Varni JW, Limbers CA, Burwinkle TM (2007a) Impaired health-related Cancer 101: 2116–2125 quality of life in children and adolescents with chronic conditions: a Nathan PC, Furlong W, Barr RD (2004) Challenges to the measurement of comparative analysis of 10 disease clusters and 33 disease categories/ health-related quality of life in children receiving cancer therapy. Pediatr severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Blood Cancer 43: 215–223 Outcomes 5: 43 Pickard AS, Topfer LA, Feeny DH (2004) A structured review of studies on Varni JW, Limbers CA, Burwinkle TM (2007b) Parent proxy-report of their health-related quality of life and economic evaluation in pediatric acute children’s health-related quality of life: an analysis of 13,878 parents’ lymphoblastic leukemia. J Natl Cancer Inst Monogr 33: 102–125 reliability and validity across age subgroups using the PedsQL 4.0 Silver EJ, Westbrook LE, Stein RE (1998) Relationship of parental Generic Core Scales. Health Qual Life Outcomes 5: 2 psychological distress to consequences of chronic health conditions in Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, children. J Pediatr Psychol 23: 5–15 Quiggins DJ (1999a) The Pediatric Cancer Quality of Life Inventory-32 Spieth LE, Harris CV (1996) Assessment of health-related quality of life in (PCQL-32). II. Feasibility and range of measurement. J Behav Med 22: children and adolescents: an integrative review. JPediatr Psychol 21: 175–193 397–406 Statistics Canada (2002) National longitudinal survey of children and youth: Cycle 5 Varni JW, Seid M, Kurtin PS (2001) PedsQL 4.0: reliability and validity of Survey Instruments 2002/2003 Book 1 – Parent, Child and Youth. Ottawa, Canada the Pediatric Quality of Life Inventory version 4.0 generic core scales in Vance YH, Morse RC, Jenney ME, Eiser C (2001) Issues in measuring healthy and patient populations. Med Care 39: 800 –812 quality of life in childhood cancer: measures, proxies, and parental Varni JW, Seid M, Rode CA (1999b) The PedsQL: measurement model for mental health. J Child Psychol Psychiatry 42: 661– 667 the pediatric quality of life inventory. Med Care 37: 126–139 Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) The Wagner JL, Chaney JM, Hommel KA, Page MC, Mullins LL, White MM, PedsQL in pediatric cancer: Reliability and validity of the peditric quality Jarvis JN (2003) The influence of parental distress on child depressive of life inventory generic core scales, multidimensional fatigue scale and symptoms in juvenile rheumatic diseases: the moderating effect of illness cancer module. Cancer 94: 2090 –2106 intrusiveness. J Pediatr Psychol 28: 453–462 Varni JW, Burwinkle TM, Seid M, Skarr D (2003) The PedsQL 4.0 as a Waters E, Doyle J, Wolfe R, Wright M, Wake M, Salmon L (2000) Influence pediatric population health measure: feasibility, reliability, and validity. of parental gender and self-reported health and illness on parent- Ambul Pediatr 3: 329– 341 reported child health. Pediatrics 106: 1422 –1428 Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A (1998a) The Williams J, Steel C, Sharp GB, DelosReyes E, Phillips T, Bates S, Lange B, pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and Griebel ML (2003) Parental anxiety and quality of life in children with validity. Cancer 82: 1184 –1196 epilepsy. Epilepsy Behav 4: 483–486 British Journal of Cancer (2009) 100(1), 82 – 88 & 2009 Cancer Research UK http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png British Journal of Cancer Springer Journals

Identification of paediatric cancer patients with poor quality of life

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Springer Journals
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Copyright © 2009 by The Author(s)
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Biomedicine; Biomedicine, general; Cancer Research; Epidemiology; Molecular Medicine; Oncology; Drug Resistance
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0007-0920
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1532-1827
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10.1038/sj.bjc.6604826
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Clinical Studies British Journal of Cancer (2009) 100, 82 – 88 & 2009 Cancer Research UK All rights reserved 0007 – 0920/09 $32.00 www.bjcancer.com ,1,6 2 3,4 3,4 5 6 6 7 L Sung , RJ Klaassen , D Dix , S Pritchard , R Yanofsky , B Dzolganovski , R Almeida and A Klassen 1 2 Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada; Department of Pediatrics, Children’s Hospital of Eastern Ontario, 401 Smyth, Ottawa, ON, K1H 8L1, Canada; Department of Pediatrics, University of British Columbia, A119D, 4480 Oak Street, Vancouver, BC, V6H 4C9, Canada; Department of Pediatrics, University of British Columbia, A123D, 4480 Oak Street, Vancouver, BC, V6H 3V4, Canada; Department of Pediatrics and Child Health, University of Manitoba, 675 McDermot Avenue, Winnipeg, MB, R3E 0V9, 6 7 Canada; Child Health Evaluation Sciences, The Hospital for Sick Children, 424, 123 Edward Street, Toronto, ON, M5G 1E2, Canada; Department of Pediatrics, McMaster University, HSC 3N27, 1200 Main Street West, Hamilton, ON, L8S 4J9, Canada The primary objective was to describe predictors of physical, emotional and social quality of life (QoL) in children receiving active treatment for cancer. This Canadian multi-institutional cross-sectional study included children with cancer receiving any type of active treatment. The primary caregiver provided information on child physical, emotional and social QoL according to the PedsQL 4.0 Generic Core scales. Between November 2004 and February 2007, 376 families provided the data. In multiple regression, children with acute lymphoblastic leukemia had better physical health (OR: 0.37, 95% CI 0.23, 0.60; Po0.0001) while intensive chemotherapy treatment (OR: 2.34, 95% CI: 1.42, 3.85; P¼ 0.0008) and having a sibling with a chronic condition (OR: 2.53, 95% CI: 1.54, 4.15; P¼ 0.0002) were associated with poor physical QoL. Better emotional health was associated with good prognosis, less intensive chemotherapy treatment and greater household savings, whereas female children and those with a sibling with a chronic condition had poor social QoL. Physical, emotional and social QoL are influenced by demographic, diagnostic and treatment variables. Sibling and household characteristics are associated with QoL. This information will help to identify children at higher risk of poor QoL during treatment for cancer. British Journal of Cancer (2009) 100, 82–88. doi:10.1038/sj.bjc.6604826 www.bjcancer.com Published online 9 December 2008 & 2009 Cancer Research UK Keywords: quality of life; children; chemotherapy Measurement of quality of life (QoL) in paediatric cancer patients Paediatric cancer patients are often very young, which emphasises is becoming increasingly emphasized in clinical trials. This difficulty with self-report. Proxies, usually the parent, may need to outcome is important as it provides a measure of well-being from provide information on their behalf (Matza et al, 2004; Eiser and the perspective of the parent or child. To date, most QoL research Jenney, 2007). Eiser and Morse (Eiser and Morse, 2001a, b) have in paediatric cancer has been directed towards the development of systematically reviewed parent proxy and child self-report of QoL reliable and valid instruments and describing expected QoL in this and found that parents and children typically agreed upon more population. Ultimately, better understanding of QoL in children observable phenomenon, such as the level of physical activity, with cancer may be useful for several reasons. This knowledge may functioning and symptoms. Conversely, poor agreement was seen help parents and children anticipate the expected course of events in more subjective areas, such as social or emotional functioning during treatment. In addition, measurement of QoL may help (Eiser and Morse, 2001a, b). Although parent and child responses families and healthcare professionals choose specific treatment may differ, others have emphasised that parent perspectives are strategies, if these strategies are associated with similar survival important and valid perspectives of the child’s QoL (Matza et al, rates but different expected QoL. Another goal, though, may be to 2004; Pickard et al, 2004; Eiser and Jenney, 2007). As parents are identify a group of children with expected poor QoL such that they often the primary reporters of symptoms and are the main could be targeted for supportive care interventions to improve decision-makers on behalf of their child, their evaluation of QoL is their health. clinically relevant, when used in a complementary manner to child There are many challenges to measuring QoL in children. First is self-report when obtainable (Matza et al, 2004; Pickard et al, 2004; the issue of self-report vs proxy report. Although self-report is the Eiser and Jenney, 2007). usual method for assessing QoL, this method is not always feasible Second, choosing a specific instrument to measure QoL in a or possible for children with health conditions who may be too ill, study is challenging. In general, generic and disease-specific unwilling or lacking the necessary language skills, attention span instruments are available (Guyatt et al, 1993). Disease-specific or cognitive abilities to complete questionnaires themselves. measures may be most useful when responsiveness and sensitivity are important. However, generic instruments also are important as *Correspondence: Dr L Sung; E-mail: Lillian.sung@sickkids.ca there are normative reference data and their use permits compa- Received 30 May 2008; revised 11 November 2008; accepted 21 rison across different patient populations (Spieth and Harris, 1996). November 2008; published online 9 December 2008 For our purpose, the PedsQL generic module represented a Quality of life in paediatric cancer L Sung et al particularly attractive generic measure as it has been widely used in economy of multiple individuals living in a single household children with cancer and there are enough normative data and compared with per capita income (Carson, 2002). previous experience to allow us to delineate a group with particularly In addition to the data provided by parents, diagnosis and poor QoL. treatment information were abstracted from hospital charts by Most of the literature attempting to predict QoL in children with institutional clinical research associates. Institutional research cancer has focused on late effects of cancer. However, QoL during ethics approval was obtained from each of the participating centers active treatment also is important to children and their families. and written informed consent was obtained from all participants. Studies of children receiving active treatment primarily have consisted of small studies that did not identify those at high risk of Outcomes poor outcomes (Nathan et al, 2004). Consequently, the primary objective of this report was to describe predictors of physical, The PedsQL is a multidimensional instrument that is reliable and emotional and social QoL in children receiving chemotherapy for valid in healthy populations and in children with cancer (Varni. cancer. The secondary objective was to identify children at risk for et al, 1998a, b, 1999a, b, 2001, 2002). This instrument is composed particularly poor QoL as defined as physical, emotional and social of a 23-item PedsQL 4.0 Generic Core scale that reflects four QoL that was at least two standard deviations below the mean for a dimensions, namely physical, emotional, social and school general paediatric population. functionings. In general, the summary scores available from the PedsQL are psychosocial and physical scores, with psychosocial scores consisting of emotional, social and school dimensions. MATERIALS AND METHODS Because children on cancer chemotherapy often do not attend school, we could not assess the school domain for the majority of Patients children, and consequently, we did not determine the psychosocial summary score. Thus, the outcomes for this study were the This study was a subset of a larger study designed to evaluate physical, emotional and social summary scores of the PedsQL 4.0 psychosocial health in parents of children receiving chemotherapy Generic Core Scales. A 1-month recall period was used. for cancer (Klassen et al, 2008). Children were eligible for inclusion We examined dimension scores in two ways. First, to determine if they were receiving treatment for any type of malignancy, if they what factors were associated with the three dimension scores, we were initially diagnosed more than 2 months before enrollment on examined the scores as continuous variables, which maximized the this study, and if they were not considered palliative as defined as ability to identify predictors of these outcomes assuming that the no reasonable chance for cure by their healthcare team. In relationship between the predictors and outcomes was linear. We addition, children were only eligible if the parent respondent was presented these associations as b-coefficients with their standard the person most responsible for the day-to-day decision-making errors as derived from linear regression. Positive b-coefficients for that child for the past year and the parent respondent could meant that the predictor (or increasing values of the predictor) was read English. Children were enrolled from five tertiary care associated with better QoL, whereas negative b-coefficients Canadian paediatric cancer centres as follows: BC’s Children’s suggested that the predictor (or increasing values of the predictor) Hospital (Vancouver), CancerCare Manitoba (Winnipeg), Chil- was associated with worse QoL. Second, we also wanted to dren’s Hospital of Eastern Ontario (Ottawa), The Hospital for Sick determine predictors of clinically significant impairment of Children (Toronto) and McMaster Children’s Hospital (Hamilton). physical, emotional and social QoL. Varni et al (2003) previously explored the cutoff points for ‘at-risk status’ for impaired QoL and Methods determined in a large paediatric population, that one standard deviation below the mean of the total population sample was a Patients were approached for participation either in the in-patient clinically meaningful measure of impaired QoL as it represented or outpatient settings in a consecutive fashion. The family was scores similar to children with severe chronic health condition. given a booklet to complete in which questions about the child’s However, because our population consisted of children with a QoL were asked (see Outcomes below). The booklet also contained chronic health condition (namely cancer), we defined low QoL as a questions about child, parent and family characteristics. The score of two standard deviations below the population mean; completed booklet was returned to the team in person or by mail. (Varni et al, 2003); these values were derived using data from a Child variables included demographic information, and informa- PedsQL database (Varni et al, 2007b). tion on diagnosis, treatment and parent-reported prognosis (very To see whether the model could distinguish between children good or excellent vs good, fair or poor). We asked parents about with and without poor physical, emotion and social QoL, we the intensity of treatment, which was scored on a 5-point rating compared items from the PedsQL 3.0 Acute Cancer Module for scale (more intensive (4 or 5) vs less intensive (1–3)). Both the these 2 groups and based on clinical experience, hypothesized that prognosis and intensity of treatment scales were developed for this those who were at high risk for poor physical health should have study. We also asked whether the child had a chronic condition worse pain and hurt scores, those at high risk for poor emotional other than cancer. Parent variables included demographics, health should have worse pain and hurt, nausea, anxiety, worry highest education of the primary caregiver and their spouse, and cognition scores and those at high risk for poor social health employment and marital status and whether the primary caregiver should have worse scores on the communication and cognition had a chronic condition. Family variables included whether a domains. sibling had a chronic condition, household income and savings. Categorisation for chronic conditions in children and adults was derived from those used in the National Longitudinal Survey of Statistics Children and Youth (NLSCY; Statistics Canada, 2002). The NLSCY is a long-term study conducted by Statistics Canada, which follows Potential predictors of physical, emotional and social scores were the development and well-being of Canadian children from birth to determined using univariate linear or logistic regression analyses early adulthood. Household income was recoded into above and depending on whether the outcome was QoL as a continuous or below $60 000 annually (approximate median value in this sample). dichotomous variable. For multiple regression modelling, factors We also computed adjusted family income, a measure of income that were associated with QoL at Po0.1 were entered into a that adjusts for family size and composition that accounts for the forward selection model. All statistical analyses were performed benefits of multiple wage earners in the family as well as the using the SAS statistical program (SAS-PC, version 9.1; SAS & 2009 Cancer Research UK British Journal of Cancer (2009) 100(1), 82 – 88 Clinical Studies Clinical Studies Quality of life in paediatric cancer L Sung et al Institute Inc., Cary, NC). All tests of significance were two-sided, (62/376; 16.5%) and depression (57/376; 15.2%). The most and statistical significance was defined as Po0.05. common chronic conditions reported for siblings were non-food allergies (35/376; 9.3%), mental handicap (13/376; 3.5%) and heart problems (10/376; 2.7%). The mean summary score for physical function was 54.9 (95% RESULTS CI: 9.4, 96.9; N¼ 374), which was 28.4 points lower than the mean Subjects were enrolled between November 2004 and February physical function score of 83.3 found in a large statewide pediatric 2007. A total of 513 parents were asked to participate in this study survey in which QoL was assessed in 10 241 families (Varni et al, and 501 agreed. We received completed questionnaires back from 2003). Similarly, the mean summary scores for emotional QoL was 412 parents, giving an overall response rate of 80.3%. We excluded 61.1 (95% CI: 25, 95; N¼ 376), which was 19.2 points lower than data for one parent who answered the questionnaire retro- the mean emotional score of 80.3 in the statewide survey (Varni spectively, leaving a sample size of 411. Of these 411, 376 had et al, 2003), and the mean summary scores for social QoL was 69.7 children who were at least 2 years of age and could complete the (95% CI: 35, 100; N¼ 372), which was 12.5 points lower than the PedsQL assessment. Parent and child characteristics appear in mean social score of 82.2 in the statewide survey (Varni et al, Table 1. Of the 376 children, 275 (73.1%) had leukemia or 2003). In our study, poor QoL was defined as QoL that was at least lymphoma and most children had acute lymphoblastic leukemia two standard deviations below the mean for a general paediatric (ALL; 214/376, 56.9%). The remaining children had a solid tumour population. Two standard deviations below the population mean (55/376, 14.6%) or a brain tumour (35/376, 9.3%). Disseminated varied by child age, but this value ranged from 36.82 to 61.59 for disease was present in 27/376 (7.2%) of the entire cohort and was physical function, whereas the value ranged from 41.42 to 56.82 for present in 17/55 (30.9%) of those with solid tumours. The majority emotional scores and 32.07 to 60.63 for social scores (Varni et al, of parents rated their child’s prognosis as very good or excellent 2007b). The number of children with particularly poor physical, (293/376; 77.9%). The most common chronic conditions reported emotion and social QoL as defined as scores at least two standard for parents were anxiety (65/376; 17.3%), respiratory allergies deviations below the population mean were 143/374 (38.2%), 94/ 376 (25%) and 51/372 (13.7%), respectively. Table 1 Demographics of study population Table 2 illustrates that the child factors associated with better physical health were younger child age, ALL, better parent-rated Variable N Value prognosis, absence of radiotherapy or surgery to remove cancer, less intensive chemotherapy treatment and absence of other child Child factors chronic conditions. Parent factors that were associated with better Age, no. (%) 376 child physical health were younger parent age, and the absence of a 2 – 4 years 110 (29.3) chronic condition in the parent. Finally, if the sibling had a chronic 5 – 7 years 87 (23.1) condition, then the child’s physical health was worse. Tables 2 also 8 – 12 years 84 (22.3) illustrates the factors that were associated with emotional and X13 years 95 (25.3) Median years since diagnosis (IQR) 376 0.6 (0.3, 1.3) social QoL in univariate linear regression. Male (%) 376 215 (57.2) In examining multiple regression models, only child age was Cancer diagnosis, no. (%) 376 included if both child age and parent age met criteria for inclusion Leukemia 233 (62.0) into the model because they were highly correlated (Spearman Lymphoma 42 (11.2) r¼ 0.61; Po0.0001). Similarly, if both ALL and any surgery to Neuroblastoma 19 (5.1) remove cancer met criteria for inclusion in the multiple regression Sarcoma 36 (9.6) model, only ALL was included because they were highly negatively Brain 35 (9.3) correlated (Spearman r¼0.61; Po0.0001). Finally, in terms of Other 11 (2.9) No. acute lymphoblastic leukemia (%) 375 214 (57.1) family factors, if both adjusted income and savings of at least No. acute myeloid leukemia (%) 376 13 (3.5) $10 000 both met criteria to be included in multiple regression, No. relapse (%) 376 31 (8.2) only adjusted income was used as they were highly correlated No. prognosis of very good or excellent (%) 363 293 (80.7) (Spearman r¼ 0.52; Po0.0001). No. received radiation (%) 376 82 (21.8) Variables that were independently associated with physical, No. received any surgery to remove 376 79 (21.0) emotional and social QoL appear in Table 3. Older child age and cancer (%) more intensive chemotherapy treatment both were independently No. received SCT (%) 376 30 (8.0) associated with worse physical, emotional and social functions. No. intensive chemotherapy treatment (%) 370 110 (29.7) Interestingly, if the child’s parents reported that the sibling or No. received alternative treatment (%) 374 32 (8.6) parent had a chronic condition, this occurrence was associated Parent factors with worse function in the child with cancer; those with a parent Median parent age in years (range) 368 39.1 (20.2, 75.9) with a chronic condition has worse physical and emotional No. male (%) 375 47 (12.5) functions, whereas those with a sibling with a chronic condition No. first parenting experience (%) 369 168 (45.5) had worse physical and social functions. No. smoke (%) 376 67 (17.8) Tables 4 and 5 illustrate logistic regression analyses to examine No. university degree (%) 376 120 (31.9) predictors of poor physical, emotional and social QoL as defined as No. working (%) 371 163 (43.9) having a score less than two standard deviations below the No. chronic condition (%) 376 215 (57.2) population mean. In multiple logistic regression analyses, a No. married (%) 376 311 (82.7) diagnosis of ALL independently predicted for better physical Household factors function, whereas those receiving intensive chemotherapy treat- No. sibling with chronic condition (%) 376 110 (29.3) ment as perceived by the parent, and those with a sibling with a No. annual household income X$60 000 (%) 354 182 (51.4) chronic condition had a two- to three-fold increased odds for poor Median adjusted household income in 349 28 846 (17 500, 42 500) physical QoL (Table 5). In terms of emotional QoL, those with a dollars (IQR) parent-rated prognosis of very good or excellent and those with No. savings X$10 000 (%) 330 164 (49.7) savings of at least $10 000 had better emotional function, whereas IQR¼ interquartile range. The total sample size of 376; some respondents did not those receiving intensive chemotherapy treatment were at an complete all questions. almost five-fold increased odds of poor emotional function. British Journal of Cancer (2009) 100(1), 82 – 88 & 2009 Cancer Research UK Quality of life in paediatric cancer L Sung et al Table 2 Univariate predictors of summary physical, emotional and social dimension scores Physical summary score Emotional summary score Social summary scores b b b ± ± ± Variable b s.e. P-value b s.e. P-value b s.e. P-value Child factors ± ± ± Age in years 1.74 0.26 o0.0001 0.85 0.21 o0.0001 0.91 0.22 o0.0001 ± ± ± Time since diagnosis 0.70 0.98 0.48 0. 00 0.80 1.00 2.53 0.83 0.003 ± ± ± Male 3.75 2.66 0.16 3.80 2.09 0.07 5.14 2.14 0.02 ± ± ± Acute lymphoblastic leukemia 13.28 2.57 o0.0001 5.83 2.08 0.005 5. 66 2.15 0.009 ± ± ± Relapse 5.03 4.70 0.29 1.73 3.78 0.65 10.35 3.89 0.008 ± ± ± Prognosis of very good or excellent 10.73 3.36 0.002 10.73 2.63 o0.0001 10.10 2.70 0.0002 ± ± ± Radiation 9.41 3.15 0.003 4.02 2.51 0.11 4.42 2.60 0.09 ± ± ± Surgery to remove cancer 14.61 3.14 o0.0001 3.84 2.55 0.13 7.01 2.60 0.008 ± ± ± Stem cell transplant 7.57 4.83 0.12 0.83 3.84 0.83 6.25 3.92 0.11 ± ± ± Intensive chemotherapy treatment 15.06 2.79 o0.0001 12.96 2.18 o0.0001 7.65 2.32 0.001 ± ± ± Alternative treatment 3.55 4.63 0.44 7.90 3.72 0.03 7.23 3.79 0.06 ± ± ± Other chronic condition 9.46 3.44 0.006 6.72 2.73 0.01 3.27 2.81 0.25 Parent factors ± ± ± Age in years 0.66 0.19 0.0006 0.16 0.15 0.31 0.19 0.16 0.23 ± ± ± Male 3.00 3.98 0.45 7.02 3.13 0.03 2.68 3.22 0.41 ± ± ± Smoke 4.67 3.45 0.18 4.20 2.71 0.12 4.21 2.79 0.13 ± ± ± University Education 4.37 2.81 0.12 1.63 2.23 0.47 4.55 2.28 0.05 ± ± ± Working 4. 23 2.67 0.11 4. 32 2.10 0.04 5.63 2.15 0.009 ± ± ± Chronic condition 10.14 2.61 0.0001 9.13 2.05 o0.0001 8.68 2.11 o0.0001 ± ± ± Married 6.02 3.46 0.08 5. 84 2.74 0.03 7.14 2.79 0.01 Household factors ± ± ± Sibling with chronic condition 11.30 2.83 o0.0001 4.19 2.28 0.07 8.57 2.32 0.0002 ± ± ± Annual household income X$60 000 2.18 2.69 0.42 1.25 2.13 0.56 5.24 2.20 0.02 ± ± ± Adjusted household income 0.00 0.00 0.30 0.00 0.00 0.86 0.00 0.00 0.006 ± ± ± Savings X$10 000 1.11 2.78 0.69 0.83 2.17 0.70 4.30 2.20 0.05 a b s.e.¼ standard error. Mean summary scores are presented in the Results. b-Coefficient from univariate linear regression. Positive b-coefficients meant that the predictor (or increasing values of the predictor) was associated with better quality of life, whereas negative b-coefficients suggested that the predictor (or increasing values of the predictor) was associated with worse quality of life. Table 3 Multiple linear regression for physical, emotional and social Finally, female children and having a sibling with a chronic summary scores condition increased the odds of poor social function (Table 5). Table 6 shows that groups predicted to be at high risk for poor Variable b s.e. P-value physical, emotional and social QoL according to the multiple regression models had worse scores on the PedsQL acute cancer Physical summary score module domains hypothesized to be associated with physical, Age of the child 1.37 0.26 o0.0001 emotion and social health. Acute lymphoblastic leukemia 5.93 2.50 0.02 Intensive chemotherapy treatment 6.12 0.90 o0.0001 Parent with chronic condition 5.45 2.40 0.02 Sibling with chronic condition 8.52 2.56 0.001 DISCUSSION Emotional summary score We determined variables independently associated with physical, Age of the child 0.68 0.19 0.0005 emotional and social QoL in children receiving active treatment for Male child 3.80 1.88 0.04 ± cancer. In addition, we were able to delineate a group of children at Prognosis of very good or excellent 7.84 2.38 0.001 Intensive chemotherapy treatment 5.47 0.72 o0.0001 particularly high risk of poor QoL as defined as two standard Male parent 6.17 2.82 0.03 deviations below the mean score for healthy children. As expected, Married 4.96 2.50 0.05 when QoL was examined as a continuous (rather than dichot- Parent with chronic condition 5.29 1.94 0.007 omous) variable, regression analyses yielded a greater number of significant predictors of QoL. This information is helpful for Social summary score gaining insight into what factors impact on QoL for children with Age of the child 0.94 0.22 o0.0001 cancer. Time since diagnosis 3.52 0.94 0.0004 However, predicting low QoL probably is clinically more Male child 5.14 2.07 0.01 ± relevant to identify high-risk children who may be targeted for Intensive chemotherapy treatment 3.93 0.81 o0.0001 Parent working 5.72 2.11 0.01 future supportive care interventions. We found that children with Sibling with chronic condition 5.90 2.22 0.02 ALL had better physical function, whereas those whose parents Household adjusted income 0.00 0.00 0.004 reported more intensive chemotherapy treatment and those with a siblings with a chronic condition had poorer physical QoL. Parent s.e.¼ standard error. Mean summary scores are presented in the Results. self-reported worse prognosis, more intensive chemotherapy b-coefficient from univariate linear regression, Positive b-coefficients meant that treatment and smaller household savings all predicted worse the predictor (or increasing values of the predictor) was associated with better quality emotional function. Finally, being female and having a sibling with of life, whereas negative b-coefficients suggested that the predictor (or increasing values of the predictor) was associated with worse quality of life. a chronic condition predicted for poor social function. & 2009 Cancer Research UK British Journal of Cancer (2009) 100(1), 82 – 88 Clinical Studies Clinical Studies Quality of life in paediatric cancer L Sung et al a,b Table 4 Predictors of low physical, emotional and social summary scores Physical summary score Emotional summary score Social summary score Variable OR (95% CI) P-value OR (95% CI) P-value OR (95% CI) P-value Child factors Age in years 1.07 (1.02, 1.12) 0.003 0.99 (0.95, 1.04) 0.80 0.99 (0.93, 1.05) 0.77 Time since diagnosis 0.98 (0.84, 1.15) 0.79 0.92 (0.75, 1.12) 0.39 1.16 (0.96, 1.41) 0.12 Male 0.70 (0.46, 1.06) 0.09 1.08 (0.67, 1.73) 0.76 0.44 (0.24, 0.80) 0.008 Acute lymphoblastic leukemia 0.35 (0.23, 0.53) o0.0001 0.77 (0.48, 1.22) 0.26 0.99 (0.54, 1.79) 0.97 Relapse 1.12 (0.53, 2.34) 0.75 0.70 (0.28, 1.77) 0.45 2.06 (0.84, 5.09) 0.12 Prognosis of very good or excellent 0.48 (0.28, 0.82) 0.007 0.34 (0.20, 0.60) 0.0001 0.59 (0.29 1.19) 0.14 Radiation 1.44 (0.88, 2.37) 0.15 1.13 (0.65, 1.97) 0.67 0.76 (0.35, 1.62) 0.47 Any surgery to remove cancer 3.04 (1.83, 5.07) o0.0001 0.78 (0.43, 1.42) 0.42 1.35 (0.68, 2.68) 0.39 Stem cell transplantation 2.26 (1.06, 4.81) 0.03 1.32 (0.58, 2.98) 0.51 1.29 (0.47, 3.53) 0.62 Intensive chemotherapy treatment 2.59 (1.64, 4.10) o0.0001 4.09 (2.49, 6.72) o0.0001 1.76 (0.95, 3.25) 0.07 Alternative treatment 1.20 (0.58, 2.48) 0.62 1.90 (0.89, 4.06) 0.10 1.92 (0.78, 4.71) 0.15 Other chronic condition 1.87 (1.09, 3.20) 0.02 1.18 (0.65, 2.16) 0.58 0.59 (0.24, 1.45) 0.25 Parent factors Age in years 1.02 (0.99, 1.06) 0.099 0.98 (0.95, 1.02) 0.28 0.97 (0.92, 1.01) 0.14 Male 0.73 (0.38, 1.39) 0.33 0.68 (0.31, 1.46) 0.32 0.39 (0.12, 1.31) 0.13 Smoke 1.44 (0.84, 2.46) 0.18 1.48 (0.83, 2.63) 0.19 0.99 (0.46, 2.15) 0.98 University Education 0.73 (0.47, 1.16) 0.18 0.77 (0.46, 1.28) 0.31 0.97 (0.51, 1.83) 0.92 Working 0.66 (0.43, 1.01) 0.06 0.70 (0.43, 1.14) 0.15 0.50 (0.26, 0.94) 0.03 Chronic condition 1.83 (1.19, 2.82) 0.008 1.97 (1.20, 3.24) 0.007 1.98 (1.04, 3.75) 0.04 Married 0.91 (0.53, 1.58) 0.75 0.59 (0.33, 1.05) 0.07 0.85 (0.40, 1.79) 0.67 Household factors Sibling with chronic condition 2.35 (1.49, 3.70) 0.0002 1.44 (0.88, 2.37) 0.15 1.88 (1.02, 3.46) 0.04 Annual household income X$60 000 0.89 (0.58, 1.37) 0.59 0.70 (0.43, 1.15) 0.16 0.68 (0.37, 1.25) 0.21 Adjusted household income per $100 000 1.00 (0.88, 1.14) 0.97 0.90 (0.77, 1.04) 0.15 0.95 (0.79, 1.14) 0.57 Savings X$10 000 0.98 (0.63, 1.53) 0.93 0.63 (0.38, 1.06) 0.08 0.78 (0.41, 1.46) 0.44 a b CI¼ confidence interval; OR¼ odds ratio. Mean summary scores are presented in the Results. Low is defined as p2 s.d. below the mean for a general paediatric population (see Methods). Table 5 Multiple logistic regression for low physical, emotional and social sibling chronic condition on the child’s QoL was consistent among a,b summary scores the different analyses. More specifically, those with a sibling with a chronic condition had particularly poor physical and social QoL. c a Variable OR (95% CI) P-value Others have shown that parents with poor physical or psychosocial health have children with poorer QoL in several different Physical summary score conditions (Silver et al, 1998; Waters et al, 2000; Wagner et al, Diagnosis of not acute lymphoblastic leukemia 2.67 (1.67, 4.28) o0.0001 2003; Williams et al, 2003). A study in paediatric cancer also found Intensive chemotherapy treatment 2.34 (1.42, 3.85) 0.0008 an association between maternal depression and child self- Sibling with chronic condition 2.53 (1.54, 4.15) 0.0002 reported poor QoL (Vance et al, 2001). We were not able to identify literature that specifically examined sibling chronic Emotional summary score Prognosis of not very good or excellent 2.66 (1.39, 5.11) 0.003 conditions and paediatric cancer QoL, and thus our finding is Intensive chemotherapy treatment 4.90 (2.78, 8.64) o0.0001 unique. Less than $10 000 of savings 1.77 (1.00, 3.12) 0.0496 Several possibilities may explain these associations. First, there may be a biological explanation; the chronic conditions Social summary score may be heritable, and thus may be causative in the child Child female 2.27 (1.22, 4.23) 0.01 with cancer’s poor QoL. However, this hypothesis is not supported Sibling with chronic condition 2.12 (1.13, 3.96) 0.02 by our data as we did not find an association between the OR¼ odds ratio; CI¼ confidence interval. Mean summary scores are presented in child with cancer having a chronic condition and worse QoL. the Results. Low is defined as p2 s.d. below the mean for a general paediatric Second, it is possible that parents who perceive their own health or population (see Methods). potential predictors shown in terms of factors associated the health of their other children as worse may also perceive that with worse quality of life (e.g., in this table, female child gender is shown rather than the child with cancer has worse QoL. Finally, it is possible that male child gender). having a sibling with a chronic condition is somehow causative in poor physical and social QoL related to effects on the home environment. Our finding that children with ALL had better physical function A limitation of our study is that we used only parent-reported than children with other types of cancers is not surprising and is QoL. Parent and child report are known to differ, especially for the consistent with other reports (Meeske et al, 2004; Varni et al, psychosocial domains of health (Eiser and Morse, 2001a). 2007a). It also is clinically intuitive that more intensive However, in our study, proxy report was necessary as a large chemotherapy treatment would be associated with worse physical proportion of the sample were too young to provide self-report and emotional functions. data. In addition, others have noted that the multiple different We also found that chronic diseases in the sibling and parent perspectives of QoL including the parent perspective are all were associated with the child’s QoL. This influence of parent and important and contribute to our understanding of child health British Journal of Cancer (2009) 100(1), 82 – 88 & 2009 Cancer Research UK Quality of life in paediatric cancer L Sung et al Table 6 Comparison of PedsQL acute cancer module items hypothesised to be different between those predicted to be at high and low risk for poor physical, emotional and social functionings a b Variable High risk group Median (IQR) Low risk group Median (IQR) P-value Physical summary score N¼ 19 N¼ 357 0.037 Pain and hurt 50.0 (37.5, 62.5) 62.5 (50.0, 75.0) Emotional summary score N¼ 8 N¼ 368 Pain and hurt 25.0 (18.8, 56.3) 62.5 (50.0, 75.0) 0.01 Nausea 25.0 (12.5, 37.5) 55.0 (40.0, 75.0) 0.0003 Anxiety 29.2 (12.5, 37.5) 50.0 ( 25.0, 75.0) 0.08 Worry 50.0 (29.2, 50.0) 75.0 (50.0, 100.0 ) 0.01 Cognition 43.3 (17.5, 50.0) 68.8 (50.0, 87.5) o0.0001 Social summary score N¼ 41 N¼ 335 Communication 50.0 (33.3, 75.0) 75.0 (50.0, 91.7) 0.0005 Cognition 55.0 (41.7, 65.0 70.0 (50.0, 87.5) 0.0002 IQR¼ interquartile range; PedsQL¼ paediatric quality of life inventory. Predicted high-risk group defined as those with attributes identified as independently associated with poor functioning in logistic multiple regression (from Table 5). P-value for comparison between high- and low-risk groups using Wilcoxon rank-sum test. (Pickard et al, 2004). Nonetheless, future research should focus on to try and capture in a summary form the effects of these different child self-report to understand whether such an approach results phases of symptoms. However, future research within specific in fundamentally different high-risk groups compared with parent diagnostic subgroups will be able to better define the contribution of proxy respondents. Second, we modelled several different out- specific chemotherapy protocols and agents to QoL. comes, and therefore there is a possibility of chance findings. The strengths of our study include that we sampled paediatric These analyses were all conducted as secondary objectives, and cancer patients from multiple centers, and thus have data that are therefore these results must be considered hypothesis generating. generalisable. In addition, we have one of the largest cohorts in Third, we developed the prognosis and intensity of therapy scales which sufficient clinical covariates were obtained such that we for this study, and therefore there are no reported data on their were able to built prediction models of the child’s QoL. To the best reliability or validity. Finally, as with any study that attempts to of our knowledge, this is the first description of defining children build a prediction model, similar studies in different populations at risk for particularly poor QoL. of children on active treatment for cancer will be critical to This information may be used in different ways. First, we will be examine model validation and to determine the best variables to able to use the information on predictors to target specific groups delineate a high-risk population at risk for poor QoL. for interventional supportive care trials. For example, we could The results of this study are important as the majority of QoL target children receiving more aggressive chemotherapy treat- research in paediatric cancer has focused on late effects of cancer ments for interventions to improve their physical and emotional therapy, or examined both children on and off treatment rather health. Second, these associations raise new hypotheses about than during active therapy. However, QoL during active treatment contributors to the health of children with cancer. For example, the also is important to study and will influence the experiences of the associations between chronic conditions in the parent and siblings child and family. We would expect that QoL should be very raise the possibility that health of the family may affect the health different between children receiving active treatment vs those who of the child with cancer. have completed treatment, as the treatment period is predomi- In summary, physical, emotional and social QoL are influenced nated by toxicities of therapy and often radical changes in normal by demographic, diagnosis, and treatment variables. In addition, day-to-day routines for the child and family. Conversely, QoL in characteristics of the sibling and household are associated with survivors would be expected to be mostly influenced by sequelae of QoL. This information can be used to identify children at higher therapy. Both of these perspectives are important and improve- risk of poor QoL during active treatment for cancer. ment in QoL during both periods should be a priority. Our report is valuable as it is the largest study to our knowledge focused on ACKNOWLEDGEMENTS QoL in children receiving active treatment for cancer. One of the difficulties with trying to measure QoL in children LS was supported by a Career Development Award with the receiving active treatment for cancer is that symptoms during Canadian Child Health Clinician Scientist Training Programme, a chemotherapy often fluctuate greatly depending on when QoL is strategic training programme with the Canadian Institutes of assessed relative to when chemotherapy is administered, as well as Health Research. AK was supported by a New Investigator Award the specific treatments provided. This issue is most relevant for with the Canadian Institutes of Health Research. The project was aggressive chemotherapy that is typically administered in cycles supported by an Operating Grant from the Canadian Cancer every 2–4 weeks. Our use of a 1-month recall period was an attempt Society. REFERENCES Carson J (2002) Family spending power. Stat Can 3: 5–13 Guyatt GH, Feeny DH, Patrick DL (1993) Measuring health-related quality Eiser C, Jenney M (2007) Measuring quality of life. Arch Dis Child 92: of life. Ann Intern Med 118: 622–629 348–350 Klassen AF, Klaassen R, Dix D, Pritchard S, Yanofsky R, O’Donnell M, Eiser C, Morse R (2001a) Can parents rate their child’s health- Scott A, Sung L (2008) Impact of caring for a child with cancer on related quality of life? Results of a systematic review. Qual Life Res 10: parent’s health-related quality of life. J Clin Oncol 24 November 2008 347–357 [E-pub ahead of print] Eiser C, Morse R (2001b) Quality-of-life measures in chronic diseases of Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK (2004) Assess- childhood. Health Technol Assess 5: 1 –157 ment of health-related quality of life in children: a review of & 2009 Cancer Research UK British Journal of Cancer (2009) 100(1), 82 – 88 Clinical Studies Clinical Studies Quality of life in paediatric cancer L Sung et al conceptual, methodological, and regulatory issues. Value Health 7: Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM 79–92 (1998b) The Pediatric Cancer Quality of Life Inventory (PCQL). I. Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JW (2004) Parent Instrument development, descriptive statistics, and cross-informant proxy-reported health-related quality of life and fatigue in pediatric variance. J Behav Med 21: 179– 204 patients diagnosed with brain tumors and acute lymphoblastic leukemia. Varni JW, Limbers CA, Burwinkle TM (2007a) Impaired health-related Cancer 101: 2116–2125 quality of life in children and adolescents with chronic conditions: a Nathan PC, Furlong W, Barr RD (2004) Challenges to the measurement of comparative analysis of 10 disease clusters and 33 disease categories/ health-related quality of life in children receiving cancer therapy. Pediatr severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Blood Cancer 43: 215–223 Outcomes 5: 43 Pickard AS, Topfer LA, Feeny DH (2004) A structured review of studies on Varni JW, Limbers CA, Burwinkle TM (2007b) Parent proxy-report of their health-related quality of life and economic evaluation in pediatric acute children’s health-related quality of life: an analysis of 13,878 parents’ lymphoblastic leukemia. J Natl Cancer Inst Monogr 33: 102–125 reliability and validity across age subgroups using the PedsQL 4.0 Silver EJ, Westbrook LE, Stein RE (1998) Relationship of parental Generic Core Scales. Health Qual Life Outcomes 5: 2 psychological distress to consequences of chronic health conditions in Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, children. J Pediatr Psychol 23: 5–15 Quiggins DJ (1999a) The Pediatric Cancer Quality of Life Inventory-32 Spieth LE, Harris CV (1996) Assessment of health-related quality of life in (PCQL-32). II. Feasibility and range of measurement. J Behav Med 22: children and adolescents: an integrative review. JPediatr Psychol 21: 175–193 397–406 Statistics Canada (2002) National longitudinal survey of children and youth: Cycle 5 Varni JW, Seid M, Kurtin PS (2001) PedsQL 4.0: reliability and validity of Survey Instruments 2002/2003 Book 1 – Parent, Child and Youth. Ottawa, Canada the Pediatric Quality of Life Inventory version 4.0 generic core scales in Vance YH, Morse RC, Jenney ME, Eiser C (2001) Issues in measuring healthy and patient populations. Med Care 39: 800 –812 quality of life in childhood cancer: measures, proxies, and parental Varni JW, Seid M, Rode CA (1999b) The PedsQL: measurement model for mental health. J Child Psychol Psychiatry 42: 661– 667 the pediatric quality of life inventory. Med Care 37: 126–139 Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) The Wagner JL, Chaney JM, Hommel KA, Page MC, Mullins LL, White MM, PedsQL in pediatric cancer: Reliability and validity of the peditric quality Jarvis JN (2003) The influence of parental distress on child depressive of life inventory generic core scales, multidimensional fatigue scale and symptoms in juvenile rheumatic diseases: the moderating effect of illness cancer module. Cancer 94: 2090 –2106 intrusiveness. J Pediatr Psychol 28: 453–462 Varni JW, Burwinkle TM, Seid M, Skarr D (2003) The PedsQL 4.0 as a Waters E, Doyle J, Wolfe R, Wright M, Wake M, Salmon L (2000) Influence pediatric population health measure: feasibility, reliability, and validity. of parental gender and self-reported health and illness on parent- Ambul Pediatr 3: 329– 341 reported child health. Pediatrics 106: 1422 –1428 Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A (1998a) The Williams J, Steel C, Sharp GB, DelosReyes E, Phillips T, Bates S, Lange B, pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and Griebel ML (2003) Parental anxiety and quality of life in children with validity. Cancer 82: 1184 –1196 epilepsy. Epilepsy Behav 4: 483–486 British Journal of Cancer (2009) 100(1), 82 – 88 & 2009 Cancer Research UK

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Published: Dec 9, 2008

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