Health related quality of life in the first year after diagnosis in children with brain tumours compared with matched healthy controls; a prospective longitudinal study

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Abstract

This paper compares parent- and self-report health-related quality of life (HRQL) in children aged 2–16 years with brain tumours, one, six and twelve months after diagnosis with matched normal controls. HRQL was assessed using the PedsQL generic core scales. 37 tumour patients and 42 controls were included in analysis of parent-report, and 27 patients and 31 controls in self-report HRQL. Parent-report scores were significantly lower in patients than controls for all PedsQL scores at all time points (max p = 0.002). Differences in self-report PedsQL between patients and controls were variable. The relationship between self- and parent-report in patients and controls was inconsistent; varied over time; and did not consistently correlate with parental depressive symptoms, suggesting parents and their children do not regard HRQL in a similar way. Prospective, longitudinal assessment of HRQL is important, but should be supplemented with other outcome measures such as health status and behaviour in this population.

Introduction

Brain tumours are the second most common form of childhood cancer, accounting for over 20% of all cases in European children.1 Prognosis for many childhood brain tumours has improved over the past two decades, with approximately 65% of all children treated for brain tumour now achieving long-term survival.2

Treatment, recovery and rehabilitation of children with cancer may be lengthy, and they may have difficulties re-integrating into normal life, maintaining peer relationships and attaining normal academic milestones.3, 4, 5, 6, 7 This is particularly true for survivors of childhood brain tumours.8, 9, 10 Measurement of quality of life (QOL) and more specifically Health-Related Quality of Life (HRQL) have therefore become increasingly important in quantifying morbidity in paediatric oncology.

HRQL has been described as a multidimensional construct that incorporates both objective and subjective data. It includes, but is not limited to, the social, physical and emotional functioning of the child/ adolescent, and where indicated their family. HRQL must be sensitive to changes occurring throughout development.11

Research into QOL in childhood cancer has primarily focused on defining QOL in long-term survivors.12, 13, 14, 15, 16 Studies of long-term survivors of childhood brain tumours have shown their QOL to be lower than that observed in normal peers and other childhood cancer survivors.17, 18, 19, 20, 21

To date there is only one study that assessed HRQL in children with cancer prospectively, at six weeks and one year after diagnosis. Patients had deficits in both physical and emotional HRQL at both time points, with significant improvements in HRQL over time. All tumour types were included, so findings may not represent the paediatric brain tumour population.22 There are currently no published longitudinal data on HRQL in children with brain tumours. Measurement of HRQL early after diagnosis with childhood brain tumour may be important in predicting which children and families could benefit most from interventions aimed at improving both early and long-term outcome.

It is often stated that HRQL, being a subjective measure, is best reported by the individuals themselves. However, this may not be possible in children with brain tumours, where the tumour and its treatment may impair their ability to respond competently to questioning. Some authors have suggested that self-scored HRQL be used only as a secondary outcome measure in younger children due to lack of reliability.23 It is also usually the parent’s perception of their children’s HRQL that determines health care utilization.24, 25 Others feel that any comprehensive assessment of HRQL should try to include information from both child and care-giver, as both views may provide valid results.13, 26 Parents of healthy children tend to overestimate, and parents of children with cancer tend to underestimate their children’s HRQL in relation to self-report, further complicating analysis.27, 28

In view of the paucity of published data on this subject, we aimed to measure HRQL in children with brain tumours one, six and twelve months after diagnosis, and compare HRQL with “normal” matched controls. In addition, we sought to assess the relationship between parent and self-report HRQL for patients and controls. As parental mental health may influence their rating of their child’s health/ HRQL,29, 30 we also aimed to explore the relationship between parental depression and differences in parent- and self-report HRQL.

Section snippets

Patients and methods

This was a longitudinal prospective cohort study using matched controls. Ethical approval for the study was gained from Central and South Bristol Research Ethics Committee.

Participants

Of the 48 patients eligible for the study, 3 declined to participate. Seven patients died before T12 assessment, and one patient was too young for any HRQL assessment. Two patients withdrew following T1 assessment. Controls were successfully recruited for all but two patients in the study. Four controls having consented to the study declined further follow-up. Table 1 provides details about the patient population and reasons for missing data.

26 patients were included in the analysis of

Discussion

This is the first time that HRQL has been measured prospectively in children with brain tumours and controls over the first year after diagnosis. The study demonstrates the feasibility of engaging children with brain tumours, and their families, in longitudinal studies of quality of life soon after diagnosis.

Our data are generally in keeping with retrospective studies of more long-term survivors of childhood brain tumours, showing that parents report their child’s HRQL, as lower than that in

Conflict of interest statement

None declared.

Acknowledgement

We acknowledge the financial support from the CLIC Sargent Child Cancer Foundation, and the Bowles Bequest. We acknowledge the advice and support of Professor Peter Cooper, Consultant Paediatrician, Department of Paediatrics, University of the Witwatersrand.

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