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PARENTAL SLEEP, DISTRESS AND QUALITY OF LIFE IN CHILDHOOD ACUTE LYMPHOBLASTIC LEUKEMIA: A LONGITUDINAL REPORT FROM DIAGNOSIS TO ONE YEAR AFTER END OF TREATMENT.
- Niki Rensen, Netherlands
- Lindsay M. Steur, Netherlands
- Martha A. Grootenhuis, Netherlands
- Natasha Van Eijkelenburg, Netherlands
- Inge M. Van der Sluis, Netherlands
- Natasja Dors, Netherlands
- Cor Van den Bos, Netherlands
- Wim J. Tissing, Netherlands
- Gertjan Kaspers, Netherlands
- Raphaële R. Van Litsenburg, Netherlands
Abstract
Background and Aims
Parents of children with cancer are at risk for sleep problems and ongoing distress, which are closely related and may negatively impact quality of life (QoL). This study aims to assess the longitudinal course and interrelationships of sleep, distress and QoL in parents of children with acute lymphoblastic leukemia (ALL), from diagnosis to three years later.
Methods
The Dutch longitudinal, multicenter SLAAP [SLEEP]-study is an add-on study to the ALL11 treatment protocol and included patients (2-18 years) and their parents. Parents completed the MOS Sleep Scale, Distress Thermometer for Parents and SF-12 (QoL) at four time points after diagnosis: four-five months (T0); one year (T1); two years (T2); three years (T3). The course of parental outcomes was assessed with linear mixed-models. Impact of clinically relevant sleep problems (score >1SD above reference’s mean) and/or clinical distress (score ≥4) on QoL impairment (<1SD below reference’s mean) over time was assessed with generalized estimating equations.
Results
Parents (81% mothers) of 139 patients (60% males; 74% medium risk ALL) participated. Distress and mental QoL scores gradually improved to normal levels from T0 to T3 (physical QoL was never impaired). Sleep problems only improved significantly from T1 to T2 and were still elevated at T3. At T3, one year after their child’s end of treatment for most parents, 32% reported clinically relevant sleep problems, of which 55% in concurrence with clinical distress. Over time, presence of either sleep problems or distress led to an increased risk of mental QoL impairment (OR 3.9 and 7.1, respectively). Presence of both led to a cumulatively increased risk (OR 25.3).
Conclusions
Parental well-being improves over time, yet sleep problems persist. Since parental and child functioning are closely related, attention to parents benefits the whole family. Special attention should be given to sleep in combination with ongoing distress, since this significantly impacts QoL.
AGE-ASSOCIATED LEUKOENCEPHALOPATHY AND ITS ACUTE NEUROLOGICAL IMPACT IN ALL PATIENTS
Abstract
Background and Aims
CNS-directed and intravenous chemotherapy such as high-dose methotrexate (MTX) are associated with leukoencephalopathy in childhood ALL. Patient- and treatment-related risk factors for such lesions remain inconclusive. Previous studies reported visual ratings on MR scans, which were often acquired in case of neurological symptoms. However, volumetric estimations can provide quantitative information. Hence, treatment-associated lesion burden and its potential risk factors were explored in standardized scans of patients with ALL.
Methods
171 children treated for ALL/NHL according to the EORTC 58951 and 58081 protocols between 2001 and 2018, were scanned in the University Hospital of Leuven. Clinical FLAIR scans were acquired at the end of treatment. White matter lesions were manually delineated by 3 raters, based on which intersection lesions were created (i.e. >2raters signifying the voxel as lesion). Lesion sizes (relative to intracranial volume) and their overlap with the periventricular, deep white matter and juxtacortical areas, were predicted by the following clinical parameters (after log-transformation). Clinical values of acute neurological symptoms during treatment, age at diagnosis, (low, average, high) ALL risk group, gender, CNS invasion were recorded. To predict lesion presence and lesion size by these predictors, logistic and linear regression models were used, respectively. 42 patients were excluded from analyses due to insufficient image quality (n=27), a pre-existing neurological condition or therapy-related intracranial thrombosis (n=15).
Results
Out of 129 patients, 70 patients showed leukoencephalopathy. Larger size and higher frequency of lesions were associated with younger age (p<.05). No associations were encountered with gender, risk group or CNS invasion. Patients with a neurological event demonstrated a higher ratio of lesions (n=11/13) than asymptomatic patients (n=59/116).
Conclusions
This study suggests that leukoencephalopathy frequently occurs in symptomatic, but also in asymptomatic ALL patients. Younger children might be at increased risk for developing such lesions. Hence, large-scale longitudinal screenings are recommended, investigating long-term neuropsychological follow-up of lesioned patients.
QUALITY OF LIFE AND PSYCHOSOCIAL FUNCTIONING IN CHILDREN DIAGNOSED WITH MEDULLOBLASTOMA: A REPORT FROM THE CHILDREN’S ONCOLOGY GROUP (COG)
- Leanne Embry, United States of America
- Kristina K. Hardy, United States of America
- Paul Colte, United States of America
- Jeff Michalski, United States of America
- Yimei Li, United States of America
- Yuanyuan Han, United States of America
- Ki Moore, United States of America
- Patricia Cullen, United States of America
Abstract
Background and Aims
Survivors of pediatric brain tumors are at increased risk for medical, cognitive, and psychosocial sequelae following treatment, particularly those treated with cranial irradiation. Because these late effects are associated with reduced likelihood of attaining milestones of independent living, it is critical to evaluate how QOL outcomes have changed in the context of modern treatment protocols. We examined longitudinal quality of life (QOL) and psychosocial functioning in children treated for medulloblastoma on COG protocol ACNS0331.
Methods
Parents of children diagnosed with medulloblastoma completed measures assessing their children’s social, emotional, and behavioral functioning and QOL three times over a 6-year period. These assessments were completed at approximately 9 (T1), 30 (T2), and 60 (T3) months post-diagnosis.
Results
Valid parent-report data was received within the assessment window for 284 patients at T1, 128 at T2, and 87 at T3. At T1 and T2, mean scores for overall QOL (54.81 and 65.55, respectively) and physical functioning (44.75 and 62.44) were significantly lower than norms for chronically ill children, and when compared to healthy children at all three timepoints (all ps<.001). In addition, the percentage of children exhibiting parent-reported clinically significant depressive symptoms at all three timepoints (13.3 to 14.9%) was nearly double the rate reported in the standardization sample. Furthermore, the percentage of parents reporting significant problems with children’s social skills increased over time from 10% at T1 to 16% at T3.
Conclusions
While there are improvements over time, general QOL and physical functioning scores remain lower than reported norms, even for chronically ill samples. Twice as many children as expected are reportedly exhibiting depressive symptoms based on available norms, even 5-6 years after diagnosis. Caregivers also reported increasing social skills problems over time. In contrast, other adaptive, behavioral and emotional functioning scores were generally within normal limits across timepoints.
VOICING MY CHOICES: THE REVISION OF AN ADVANCE CARE PLANNING GUIDE
Abstract
Background and Aims
Discussing end-of-life care is very challenging for adolescents and young adults (AYA) living with cancer. Based on a decade of research, Voicing My CHOiCESTM the first advance care planning (ACP) guide was created. Over the past 7 years, over 54,000 copies have been distributed worldwide and the guide has been translated into several languages. This study was carried out to determine whether the content within Voicing My CHOiCESTM needed revision.
Methods
100 AYA from 7 US cancer centers critically reviewed each page of the document and provided feedback on the content and format changes needed.
Results
Over 90% of participants found the document helpful to very helpful. Suggested content revision predominately focused on how life support options were presented, with recommended new content addressing how they would like to be remembered on social media, and thoughts about future decisions regarding fertility preservation. Additional feedback included the need to record passwords/pins, and for those who have a child(ren) of their own, a place to write letters and document how they want their child(ren) to be comforted. Revisions and additions to Voicing My CHOiCESTM has been revised based on extensive participant feedback.
Conclusions
VMC provides AYA a place to document how they want to be comforted, supported, treated, and remembered if treatment is no longer effective. Enhancement of the guide to cater towards AYA who live independent of their parents and/or are parents themselves was considered essential. Designing a developmentally appropriate ACP guide can facilitate EoL discussions where AYA are able to communicate their preferences for care thereby helping their families, friends and health care team make informed decisions, avoid decisional regret, and improve the patient’s quality of life by respecting their spiritual, cultural, and personal values.
PARENTS’ EXPECTATIONS AND EXPERIENCES OF A PRECISION MEDICINE TRIAL FOR HIGH-RISK PAEDIATRIC CANCER
Abstract
Background and Aims
Precision medicine uses novel technologies and genomic testing to recommend personalised treatments for patients. We examined parents’ expectations and experiences after enrolling their child in a precision medicine trial for high-risk paediatric cancer.
Methods
We recruited parents whose children were enrolled in PRISM (the Australian precision medicine trial for children with high-risk cancers). Parents completed surveys at PRISM enrolment (T0) and after their oncologist received test results and any resulting treatment recommendations (T1). We asked parents about the perceived benefit/burden of PRISM, willingness to recommend PRISM, satisfaction with participation, and expectations of enrolment.
Results
149 parents of 114 children completed T0 (63% mothers), with 63 parents of 51 children completing T1 (62% mothers). At T0, most parents (66%) believed that their child had a ≥50% likelihood of benefiting from PRISM, which did not change at T1. However, over time, parents were less likely to rate ‘their child’ as being most likely to benefit from PRISM (T0=39%, T1=20%, p=0.008), instead being more likely to rate ‘scientists’ as benefiting most (T0=15%, T1=34%, p=0.004). At T0, half of the parents reported that participating in PRISM, overall, had been beneficial. Overall benefit ratings did not change at T1, however, the number of parents reporting some burden from PRISM increased from 19% to 31% (p=0.021). While satisfaction ratings decreased over time (T0average=86%, T1average=76%, p=0.007), parents remained as likely to recommend PRISM to other families (T0recommend=79%, T1recommend=81%). Most parents expected to receive test results (95%) and treatment recommendations (70%). However, at T1, only 63% of parents recalled receiving results and 33% recalled receiving a treatment recommendation.
Conclusions
Our study highlights parents’ challenges when navigating a childhood cancer precision medicine trial. Parents’ perceived benefits of PRISM may not align with their experiences. Parents’ high expectations of PRISM may contribute towards increased perceived burden and reduced satisfaction.
PARENT LONGITUDINAL ADJUSTMENT FOLLOWING DISCLOSURE OF PEDIATRIC ONCOLOGY GENOMIC SEQUENCING RESULTS
- Katianne M. Howard Sharp, United States of America
- Chen Li, United States of America
- Zhaohua Lu, United States of America
- Niki Jurbergs, United States of America
- Annastasia Ouma, United States of America
- Lynn Harrison, United States of America
- Elsie Gerhardt, United States of America
- Leslie Taylor, United States of America
- Kayla Hamilton, United States of America
- Rose McGee, United States of America
- Regina Nuccio, United States of America
- Stacy Hines-Dowell, United States of America
- Jami Gattuso, United States of America
- Michele Pritchard, United States of America
- Belinda Mandrell, United States of America
- Kim Nichols, United States of America
- Liza-Marie Johnson, United States of America
Abstract
Background and Aims
Germline genomic testing is increasingly used to identify underlying predisposition in children with cancer. Understanding the psychosocial impact of results on parents is essential to identify targets for psychosocial screening and intervention. This study compared changes over time in parents’ sequencing-related adjustment across test results following disclosure of germline sequencing results.
Methods
Participants included 153 parents of children with cancer from a prospective study of tumor and germline sequencing at a pediatric oncology hospital. Parents completed questionnaires assessing sequencing-related distress and positive consequences (e.g., relief) on average 10- and 19-months post-disclosure of germline results. Mixed models compared mean scores across time and type of test result (pathogenic [P]/likely pathogenic [LP] variant, variant of uncertain significance [VUS], or no variant [negative]).
Results
There was a significant effect for result type on both initial distress (p<.001) and positive consequences (p=.002), with parents of children with a P/LP variant reporting significantly more sequencing-related distress (p<.001) and more positive consequences than parents of children with negative results (p<.001). No significant differences were found in the rate of distress (p=.415) or positive consequence score change across germline result type p=.372). Instead, positive consequences significantly decreased for all result types (p=.034), with no significant change in distress (p=.385).
Conclusions
Parents of children with cancer and a P/LP germline variant endorsed more distress than parents of children with negative results, but also more positive consequences. Findings suggest that parents may derive benefits to testing even in the context of worries or distress; however, these perceived benefits may wane with time. In contrast, sequencing-related distress did not significantly decrease, suggesting that families with elevated distress in the year following P/LP result disclosure may continue to experience elevated distress without intervention. Families may benefit from psychosocial screening and involvement of a psychosocial provider following disclosure of childhood cancer predisposition.