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Parental functioning during maintenance treatment for childhood acute lymphoblastic leukemia: Effects of treatment
Niki Rensen1,2, Lindsay M H Steur2, Martha A Grootenhuis1
1Princess Máxima Center for Pediatric Oncology, Utrecht, Netherlands.
Insights
Parents of children with acute lymphoblastic leukemia (ALL) experience significant sleep disturbances and distress. Medium-risk ALL patients’ parents reported higher distress than standard-risk parents, regardless of dexamethasone treatment.
Area of Science:
- Pediatric Oncology
- Psychosocial Oncology
Background:
- Acute lymphoblastic leukemia (ALL) treatment involves chemotherapy and dexamethasone, impacting children's sleep and behavior.
- Stratified therapy effects on parents' well-being are not well understood.
- Dexamethasone's impact on pediatric ALL patients and their parents requires further investigation.
Purpose of the Study:
- To compare parental sleep, distress, and quality of life (QoL) in medium-risk (MR) and standard-risk (SR) pediatric ALL patients.
- To assess the impact of dexamethasone on parental well-being within the MR group.
- To compare parental outcomes to the general population.
Main Methods:
- Parents of MR and SR ALL patients completed validated questionnaires (MOS sleep, distress thermometer, SF-12) at one year post-diagnosis.
- MR parents completed assessments both on and off cyclic dexamethasone.
- Parental outcomes were compared to reference values and between MR and SR groups using multilevel regression analysis.
Main Results:
- Parents of ALL patients reported more sleep disturbances, higher distress, and lower mental QoL compared to reference values.
- MR parents reported significantly higher distress levels than SR parents (mean 4.8 vs 3.5).
- Parental sleep, distress, and QoL did not significantly differ within the MR group, regardless of dexamethasone use.
Conclusions:
- Parents of pediatric ALL patients experience substantial psychosocial burden, including sleep problems and distress.
- MR parents exhibit higher distress than SR parents, potentially due to treatment intensity and prognostic factors.
- Psychosocial support is crucial for parents throughout ALL treatment, irrespective of risk stratification.
Background:
During maintenance treatment, Dutch pediatric patients with medium-risk (MR) acute lymphoblastic leukemia (ALL) receive intravenous chemotherapy and cyclic dexamethasone. Dexamethasone affects child's sleep and behavior. Standard-risk (SR) patients only receive oral chemotherapy, without dexamethasone. Effects of stratified therapy on parents are not well known. This study compares parental sleep, distress and quality of life (QoL) with the general population, between MR and SR groups, and on- and off-dexamethasone (MR group).
Procedure:
One year after diagnosis, parents of MR patients completed the Medical Outcomes Study (MOS) sleep, distress thermometer for parents and Short Form-12 (SF-12) twice; once on-dexamethasone and once off-dexamethasone. SR parents completed one measurement. Sleep problems, distress and QoL scores (off-dexamethasone) were compared to reference values and between MR and SR. Score differences on- and off-dexamethasone were assessed by multilevel regression analysis.
Results:
Parents (80% mothers) of 121 patients (57% males; 75% MR, 25% SR) completed 191 measurements. Compared to reference values, parents reported more sleep disturbances, higher distress, and lower mental QoL. Additionally, MR parents reported clinical distress (score ≥ 4), whereas SR parents (on average) did not (mean 4.8 ± 2.4 vs 3.5 ± 2.4, P = .02). Within the MR group, outcomes did not significantly differ on- and off-dexamethasone.
Conclusions:
Parents of ALL patients report sleep problems, high distress, and QoL impairment. Within the MR group, parental functioning did not differ on- and off-dexamethasone. However, MR parents reported clinical distress more often than SR parents, possibly reflecting differences in prognostic estimates and treatment burden. This perhaps includes the overall strain of cyclic dexamethasone. This study highlights the need for psychosocial support throughout treatment, regardless of risk stratification.
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