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- Martha A. Grootenhuis (Netherlands)
- Sasja Schepers (Netherlands)
Introduction
- Sasja Schepers (Netherlands)
- Martha A. Grootenhuis (Netherlands)
HEALTH-RELATED QUALITY OF LIFE IN CHILDHOOD ACUTE LYMPHOBLASTIC LEUKEMIA: A COHORT SINGLE CENTER STUDY
- Braghmandita W. Indraswari (Indonesia)
Abstract
Background and Aims
Children with acute lymphoblastic leukemia (ALL) and their families are at risk for poor Health-Related Quality of Life (HRQOL) due to physical, emotional, social and school problems. Only few studies assessing HRQOL during multiple treatment phases have been conducted, particularly in resource poor countries. This study presents a serial measurement of HRQOL of children with ALL and their parents during cancer treatment and investigates socio-demographic and clinical factors related to HRQOL.
Methods
A prospective HRQOL cohort study of children with ALL and their parents was conducted at an academic hospital in Indonesia. HRQOL was measured using PedsQL™️ 4.0 Generic Core Scale and PedsQL™️ 3.0 Cancer Module at three different treatment phases: induction phase (T1), consolidation phase (T2), and mid of maintenance phase (T3). Parents of all eligible children and patients aged 5-18 years were requested to complete both questionnaires.
Results
In total, 113 children aged 2-18 years and 221 guardians participated in this study. Of all children, 51% were diagnosed with standard risk ALL and 49% with high risk ALL. HRQOL improved during the course of treatment according to both proxy- and self-reports. Children (2-9 years) had a lower total HRQOL score than adolescents (10-18 years) throughout all three treatment phases of cancer treatment. Subscales of physical health, social functioning, school functioning, treatment anxiety and communication were significantly lower in children compared to adolescents based on proxy-reports. High risk ALL patients had a significantly lower score for physical health compared to standard risk patients during T2 and T3 measurements.
Conclusions
HRQOL improved during the course of cancer treatment. For young children interventions to reduce treatment anxiety and to guide physical, social, school and communication problems are required. More attention is needed for the physical health of high risk ALL patients during consolidation and maintenance.
AN HONEST LOOK IN THE MIRROR: PATIENT-REPORTED OUTCOME MEASUREMENTS ARE RARELY USED IN PAEDIATRIC CANCER CLINICAL TRIALS - A SYSTEMATIC REVIEW OF CLINICAL TRIAL REGISTRIES
- Maria Rothmund (Austria)
Abstract
Background and Aims
Patient-reported outcomes (PROs) are the gold standard to assess patients’ subjective health-status. Both the Food and Drug Administration (FDA) and the European Medicines Agency (EMA) recommend their use as endpoints in paediatric clinical trials to support claims for medical product labelling. The aim of this study was to assess the actual use of PRO instruments in childhood cancer clinical trials.
Methods
In June 2020 ClinicalTrials and EudraCT were systematically searched for all trials registered since 2007 investigating anti-cancer treatments in children and adolescents (≤21 years). To investigate which trial characteristics are associated with the use of PROs, Chi-Square or Fisher exact tests and a multivariate binary logistic regression were calculated.
Results
Of 4789 identified trials, 711 were included. The most frequent reason for exclusion was an upper age limit >21 years. Of all included trials, only 8.2% used PROs as endpoints and only 0.6% as primary endpoint. The most commonly used questionnaire was the PedsQLTM (32.8%), followed by PROMIS scales (12.1%). Another 24.1% reported measuring quality of life without specifying the tool. In 19.0% only pain or acceptability was assessed. No association was observed between the use of PROs and trial region, number of centres, trial phase, or intervention type (all p>.05). PRO implementation did not substantially increase over time. Only 20.3% of closed studies had published results.
Conclusions
Despite recommendations of regulatory agencies, PRO assessment is extremely rare in paediatric oncology clinical trials. The results shed light on the delay of progress in paediatric oncology due to its dependency from adult oncology. As research in adult cancer patients has already shown, PROMs are easily applicable and useful tools both for research and clinical practice. More efforts should be undertaken to facilitate implementation of PRO in paediatric trials to guarantee patient-centred research and treatments.
IMPAIRED HEALTH-RELATED QUALITY OF LIFE OF MALE AND FEMALE SURVIVORS OF CHILDHOOD CANCER: RESULTS FROM THE DCCSS-LATER 2 PSYCHO-ONCOLOGY STUDY
- Marloes Van Gorp (Netherlands)
Abstract
Background and Aims
With increased survival in pediatric oncology, long-term health-related quality of life (HRQoL) of childhood cancer survivors (CCS) is becoming even more relevant. Previous studies often disregarded differences in the impact of childhood cancer on HRQoL between sexes. Therefore, we aimed to compare HRQoL of Dutch male and female childhood cancer survivors (CCS) to the general population using the TNO-AZL Questionnaire for Adult’s HRQoL (TAAQoL).
Methods
As part of the Dutch Childhood Cancer Survivor Study LATER cohort (1963-2001) part 2, CCS (age ≥18 years, diagnosed ≤18, time since diagnosis ≥5 years) filled out the TAAQoL, including 12 domains of HRQoL. Dutch general population reference data were available (n=2476). Proportions of CCS with impaired HRQoL (score <25th percentile of general population scores) were compared to references using logistic regression analyses corrected for age and sex (p<0.004). Interactions of group with sex were evaluated and included to model separate odds ratios (ORs) if significant (p<0.05).
Results
Both male and female CCS (n=1766, mean age: 35.9 years [SD: 9.4], 51% male) had higher odds of impairment compared to references in the domains gross (OR male: 1.7, female: 2.3) and fine motor function (OR: 2.1), cognitive function (OR male: 2.7, female: 3.8), sleep (OR: 1.6), vitality (OR: 2.1) and depressive emotions (OR: 1.3). In addition, female CCS had higher odds of impairment in the domains pain (OR: 1.9), daily activities (OR: 1.9) and sexuality (OR: 1.4) and lower odds of high aggressive emotions (OR: 0.6). No differences compared to references were found for social function and positive emotions.
Conclusions
Dutch adult CCS more often have impaired HRQoL than the general population in several domains, most pronounced in cognitive function. Compared to male CCS, female CCS experience impairment in HRQoL more often and in more domains and accordingly may need more attention.
MEASURING FEAR OF CANCER RECURRENCE IN SURVIVORS OF CHILDHOOD CANCER: THE FEAR OF CANCER RECURRENCE INVENTORY – CHILD (FCRI-C)
- Perri R. Tutelman (Canada)
- Maya Stern (Canada)
Abstract
Background and Aims
Fear of cancer recurrence (FCR) is among the most common and distressing concerns after cancer. However, no validated measures exist to evaluate FCR in survivors of childhood cancer. The aim of this study was to adapt the Fear of Cancer Recurrence Inventory – Short Form (FCRI-SF), a widely used adult measure, for use with children ages 8-18 years.
Methods
The existing 9-item FCRI-SF was reviewed for relevance and language by a panel of eight experts (disciplines included pediatric oncology, psychology, nursing, child life, and patients). Cognitive interviews with survivors of childhood cancer (N=3) assessed the clarity and face validity of the adapted measure. 103 childhood cancer survivors (Mage=14.1, SD=3.0, 42.7% female) then completed the FCRI – Child version (FCRI-C). We examined the reliability, factor structure, and construct validity of the FCRI-C including associations with child current age, child sex, intolerance of uncertainty, body vigilance, and pain catastrophizing.
Results
All FCRI-SF items were retained for the FCRI-C but the language was simplified. The internal consistency of the FCRI-C was very good (α=.89). A one-factor structure was a good fit to the data, explaining 54.8% of the variance. Greater FCR was strongly associated with higher intolerance of uncertainty (r=.52, p<.001) and moderately associated with greater body vigilance (r=0.49, p<.001) and pain catastrophizing (r=.40, p<.001). Child sex and FCR were significantly correlated with girls reporting higher levels than boys (r=.20, p<.05). There was no relationship between FCR and child current age (p=.27).
Conclusions
This research describes the development and preliminary validation of a measure to assess FCR in survivors of childhood cancer. The FCRI-C demonstrated strong reliability and construct validity. Future studies will further examine the psychometric profile of the FCRI-C in a separate sample and its relationships with other health outcomes such as health-related quality of life and healthcare utilization after childhood cancer.
PARENTS’ EXPERIENCES WITH WHOLE-EXOME SEQUENCING IN PEDIATRIC RENAL CANCER
- Sebastian B. Bon (Netherlands)
Abstract
Background and Aims
In pediatric renal cancer, germline whole-exome sequencing (WES) contributes to the identification of predisposing factors, facilitating surveillance for second tumors and family counseling. Little is known about experiences and needs of parents of childhood cancer patients regarding WES. Our qualitative interview study explores these experiences and needs in order to improve counseling and support.
Methods
33 interviews were conducted with parents after they had been approached for a nationwide germline WES study in children with renal tumors. This comprised a cancer panel analysis and subsequent optional exome-wide trio-analysis in case of normal panel analysis. The interviews were analyzed using an inductive thematic approach.
Results
Parents reported both individual and altruistic motives for participating. Altruistic motives such as contributing to science and helping future patients appeared more important after the child’s treatment had been finished. Several families approached shortly after diagnosis reported feeling overwhelmed by the information. Parents often chose exome-wide (trio-)analysis over cancer panel analysis, although they had significant difficulties distinguishing between these approaches during the interviews. Families who received negative results felt relieved, but some worried about yet undiscovered factors. In families in which a predisposition was identified, parents did not experience significant distress although in some families distress from the predisposition seemed to add up to already existing emotional burden.
Conclusions
Families are generally positive about WES, however we identified several challenges pertaining to timing, consent and follow-up. We recommend approaching families during a relatively stable phase in their child’s treatment trajectory. Separating consent and counseling for panel analysis and exome-wide analysis might help parents to make a deliberate decision. Attention should be payed to families who already have a high emotional burden.
SUPPORT NEEDS OF DUTCH YOUNG ADULT CHILDHOOD CANCER SURVIVORS
- Loes Van Erp (Netherlands)
Abstract
Background and Aims
Studies about support needs of young adult childhood cancer survivors (YACCS) have previously focused mainly on information needs. This study assessed support needs and its determinants (socio-demographic, medical and psychosocial functioning) in Dutch YACCS.
Methods
YACCS (aged 18-30, diagnosed ≤18 years, time since diagnosis ≥5 years) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counselling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and the ‘Pediatric Quality of Life Inventory Young Adults, ‘Hospital Anxiety and Depression Scale, ‘Checklist Individual Strengths’(fatigue). Descriptive statistics were used to describe support needs. Linear regression analyses were used to identify characteristics associated with support needs.
Results
Most YACCS reported a need for support in one or more domains (88.0%). Over 50% of participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25-50% in the domains insurance and mortgages, future perspective, social-emotional consequences of childhood cancer. In the domains lifestyle, physical as well as emotional consequences of childhood cancer 25-50% reported a need for counselling. Overall need for support was positively associated with middle (β=.26, p=.024) and high (β=.35, p=.014) compared to low educational attainment and subclinical anxiety (β=.22, p=.017), and negatively associated with social functioning (β=-.37, p=.002).
Conclusions
YACCS report the strongest need for support, in particular for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of LTFU for YACCS, with screening for psychosocial problems, the provision of psycho-education and tailored interventions, and adequate referrals to more specialized care if necessary.