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  • 1
    Online Resource
    Online Resource
    Fatigue trajectories during pediatric ALL therapy are associated with fatigue after treatment: a national longitudinal cohort study
    Springer Science and Business Media LLC ; 2023
    In:  Supportive Care in Cancer Vol. 31, No. 1 ( 2023-01)
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 31, No. 1 ( 2023-01)
    Abstract: Fatigue is one of the most prevalent and distressing symptoms reported by survivors of childhood cancer. There is currently a lack of longitudinal studies on cancer-related fatigue, and especially on the relationship between the course of fatigue during treatment and fatigue at follow-up. The purpose of the current study was therefore to investigate if the course of fatigue during treatment, treatment intensity, serious adverse events, sex, or age at diagnosis are associated with cancer-related fatigue after treatment. Methods Participants were 92 children and adolescents diagnosed with acute lymphoblastic leukemia (mean age at diagnosis was 6.26 years). Fatigue was measured with PedsQL multidimensional fatigue scale proxy reports 5 months after diagnosis, 12 months after diagnosis, 24 months after diagnosis, and at follow-up 12 months after end of treatment. The effect of patient and treatment characteristics on fatigue reported at follow-up was tested through logistic regression analyses. Results The course of fatigue during treatment significantly predicted fatigue reported at follow-up for general fatigue ( p  = .038, OR = 9.20), sleep/rest fatigue ( p  = .011, OR = 15.48), and cognitive fatigue ( p   〈  .001, OR = 10.78). None of the other variables were associated with fatigue at follow-up for any of the subscales. Conclusions The findings demonstrate that fatigue reported during treatment can predict fatigue at follow-up. These results stress the need for longitudinal assessments. Healthcare professionals need to be aware that pediatric patients who are fatigued during treatment need to receive additional attention and timely interventions since cancer-related fatigue will not resolve by itself in the first year after end of treatment.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-022-07456-x
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 1463166-0
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  • 2
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    Risk factors for steroid‐induced adverse psychological reactions and sleep problems in pediatric acute lymphoblastic leukemia: A systematic review
    Wiley ; 2021
    In:  Psycho-Oncology Vol. 30, No. 7 ( 2021-07), p. 1009-1028
    Details
    In: Psycho-Oncology, Wiley, Vol. 30, No. 7 ( 2021-07), p. 1009-1028
    Abstract: Steroids play an essential role in treating pediatric acute lymphoblastic leukemia (ALL). The downside is that these drugs can cause severe side effects, such as adverse psychological reactions (APRs) and sleep problems, which can compromise health‐related quality of life. This study aimed to systematically review literature to identify risk factors for steroid‐induced APRs and sleep problems in children with ALL. Methods A systematic search was performed in six databases. Titles/abstracts were independently screened by two researchers. Data from each included study was extracted based on predefined items. Risk of bias and level of evidence were assessed, using the Quality in Prognosis Studies tool and the Grading of Recommendations Assessment, Development and Evaluation tool, respectively. Results Twenty‐four articles were included. APR measurement ranged from validated questionnaires to retrospective record retrieval, sleep measurement included questionnaires or actigraphy. Overall, quality of evidence was very low. Current evidence suggests that type/dose of steroid is not related to APRs, but might be to sleep problems. Younger patients seem at risk for behavior problems and older patients for sleep problems. No studies describing parental stress or medical history were identified. Genetic susceptibility associations remain to be replicated. Conclusions Based on the current evidence, conclusions about risk factors for steroid‐induced adverse psychological reactions or sleep problems in children with ALL should be drawn cautiously, since quality of evidence is low and methods of measurement are largely heterogeneous. A standardized registration of steroid‐induced APRs/sleep problems and risk factors is warranted for further studies in children with ALL.
    Type of Medium: Online Resource
    ISSN: 1057-9249 , 1099-1611
    URL: Issue
    URL: Article
    DOI: 10.1002/pon.v30.7
    DOI: 10.1002/pon.5654
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 1495115-0
    SSG: 5,2
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  • 3
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    Interactive Education on Sleep Hygiene with a Social Robot at a Pediatric Oncology Outpatient Clinic: Feasibility, Experiences, and Preliminary Effectiveness
    MDPI AG ; 2022
    In:  Cancers Vol. 14, No. 15 ( 2022-08-04), p. 3792-
    Details
    In: Cancers, MDPI AG, Vol. 14, No. 15 ( 2022-08-04), p. 3792-
    Abstract: Objectives: Children with cancer often experience sleep problems, which are associated with many negative physical and psychological health outcomes, as well as with a lower quality of life. Therefore, interventions are strongly required to improve sleep in this population. We evaluated interactive education with respect to sleep hygiene with a social robot at a pediatric oncology outpatient clinic regarding the feasibility, experiences, and preliminary effectiveness. Methods: Researchers approached children (8 to 12 years old) who were receiving anticancer treatment and who were visiting the outpatient clinic with their parents during the two-week study period. The researchers completed observation forms regarding feasibility, and parents completed the Children’s Sleep Hygiene Scale before and two weeks after the educational regimen. The experiences of children and parents were evaluated in semi-structured interviews. We analyzed open answers by labeling each answer with a topic reflecting the content and collapsed these topics into categories. We used descriptive statistics to describe the feasibility and experiences, and a dependent-samples t-test to evaluate the preliminary effectiveness. Results: Twenty-eight families participated (58% response rate) and all interactions with the robot were completed. The children and parents reported that they learned something new (75% and 50%, respectively), that they wanted to learn from the robot more often (83% and 75%, respectively), and that they applied the sleeping tips from the robot afterwards at home (54%). Regarding the preliminary effectiveness, children showed a statistically significant improvement in their sleep hygiene (p = 0.047, d = 0.39). Conclusions: Providing an educational regimen on sleep hygiene in a novel, interactive way by using a social robot at the outpatient clinic seemed feasible, and the children and parents mostly exhibited positive reactions. We found preliminary evidence that the sleep hygiene of children with cancer improved.
    Type of Medium: Online Resource
    ISSN: 2072-6694
    URL: Article
    DOI: 10.3390/cancers14153792
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2527080-1
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  • 4
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    Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): study protocol of a randomized controlled trial
    Springer Science and Business Media LLC ; 2021
    In:  Trials Vol. 22, No. 1 ( 2021-12)
    Details
    In: Trials, Springer Science and Business Media LLC, Vol. 22, No. 1 ( 2021-12)
    Abstract: Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26–29%) and negatively impacts quality of life, fatigue, pain, and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months ( n  = 70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12–30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive and anxiety symptoms, and intervention acceptability. Discussion Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration NL7220 (NTR7419; Netherlands Trial register). Registered on 2 August 2018
    Type of Medium: Online Resource
    ISSN: 1745-6215
    URL: Article
    DOI: 10.1186/s13063-021-05263-z
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2040523-6
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  • 5
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    Insomnia Symptoms and Daytime Fatigue Co-Occurrence in Adolescent and Young Adult Childhood Cancer Patients in Follow-Up after Treatment: Prevalence and Associated Risk Factors
    MDPI AG ; 2022
    In:  Cancers Vol. 14, No. 14 ( 2022-07-07), p. 3316-
    Details
    In: Cancers, MDPI AG, Vol. 14, No. 14 ( 2022-07-07), p. 3316-
    Abstract: Insomnia symptoms and daytime fatigue commonly occur in pediatric oncology, which significantly impact physical and psychosocial health. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia–daytime fatigue symptoms, and associated risk factors. Childhood cancer patients (n = 565, 12–26 years old, ≥6 months after treatment) participated in a national, cross-sectional questionnaire study, measuring insomnia symptoms (ISI; Insomnia Severity Index) and daytime fatigue (single item). Prevalence rates of insomnia and/or daytime fatigue subgroups and ISI severity ranges were calculated. Multinomial regression models were applied to assess risk factors. Most patients reported no insomnia symptoms or daytime fatigue (61.8%). In the 38.2% of patients who had symptoms, 48.1% reported insomnia and daytime fatigue, 34.7% insomnia only, and 17.1% daytime fatigue only. Insomnia scores were higher in patients with insomnia–daytime fatigue compared to insomnia only (p 〈 0.001). Risk factors that emerged were: female sex and co-morbidities (all), shorter time after treatment and bedtime gaming (insomnia only), young adulthood (insomnia–fatigue/fatigue only), needing someone else to fall asleep and inconsistent wake times (both insomnia groups), lower educational level and consistent bedtimes (insomnia–fatigue). Insomnia symptoms and daytime fatigue are common and often co-occur. While current fatigue guidelines do not include insomnia symptoms, healthcare providers should inquire about insomnia as this potentially provides additional options for treatment and prevention.
    Type of Medium: Online Resource
    ISSN: 2072-6694
    URL: Article
    DOI: 10.3390/cancers14143316
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2527080-1
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  • 6
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    The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study
    Springer Science and Business Media LLC ; 2023
    In:  BMC Cancer Vol. 23, No. 1 ( 2023-09-11)
    Details
    In: BMC Cancer, Springer Science and Business Media LLC, Vol. 23, No. 1 ( 2023-09-11)
    Abstract: Comprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer. Methods HRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2–7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were studied. Results Overall, HRQOL improved with time since diagnosis, mostly in the first years. The course of HRQOL differed between diagnostic groups. In children aged 2–7 years, children with a solid tumor had most favorable HRQOL. In children aged ≥ 8 years, those with a hematological malignancy had lower HRQOL around diagnosis, but stronger improvement over time than the other diagnostic groups. In both age-groups, the course of HRQOL of children with a CNS tumor showed little or no improvement. Small to moderate associations (β: 0.18 to 0.67, p 〈 0.05) with disease characteristics were found. Centralized care related to better HRQOL (β: 0.25 to 0.44, p 〈 0.05). Caregiver distress was most consistently associated with worse HRQOL (β: − 0.13 to − 0.48, p 〈 0.01). Conclusions The HRQOL course presented can aid in identifying children who have not fully recovered their HRQOL following cancer diagnosis, enabling early recognition of the issue. Future research should focus on ways to support children, especially those with a CNS tumor, for example by decreasing distress in their caregivers.
    Type of Medium: Online Resource
    ISSN: 1471-2407
    URL: Article
    DOI: 10.1186/s12885-023-11379-z
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2041352-X
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  • 7
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    High prevalence of parent‐reported sleep problems in pediatric patients with acute lymphoblastic leukemia after induction therapy
    Wiley ; 2020
    In:  Pediatric Blood & Cancer Vol. 67, No. 4 ( 2020-04)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 67, No. 4 ( 2020-04)
    Abstract: To assess sleep problems (prevalence and predictors) in pediatric patients with acute lymphoblastic leukemia (ALL) after the most intensive phase of therapy (induction). Methods Patients (≥2 years) treated according to the Dutch ALL‐11 protocol were included. Sleep was measured using parent‐reports and self‐reports (Children's Sleep Habits Questionnaire; CSHQ) and actigraphy. Parental sleep (Medical Outcome Study Sleep Scale) and distress and parenting problems (Distress Thermometer for Parents) were assessed with questionnaires. Z‐scores were calculated for total CSHQ scores using age‐appropriate scores of healthy Dutch children. The prevalence of sleep problems (defined as a Z ‐score  〉  1) in patients with ALL was compared to healthy children (chi‐square tests). Actigraphic sleep estimates were collected in healthy Dutch children (n = 86, 2‐18 years) for comparison with patients (linear regression). Determinants of parent‐reported child sleep (total CSHQ Z ‐score) were identified with regression models. Results Responses were collected for 124 patients (response rate 67%), comprising 123 parent‐reports, 34 self‐reports, and 69 actigraphy assessments. Parents reported sleep problems in 38.0% of the patients compared to 15.2% in healthy children ( P   〈  .001). Patients reported fewer sleep problems themselves: 12.1% compared to 15.8% in healthy children ( P  = .33). Total time in bed (B (95% CI): 22.89 (9.55‐36.22)) and total sleep time (B (95% CI):16.30 (1.40‐31.19)), as derived from actigraphy, were significantly longer in patients. More parent‐reported child sleep problems were predicted by parenting problems, more parental sleep problems, bedroom sharing, and child's sleep medication use (explained variance: 27.4%). Conclusions Systematic monitoring of child and parental sleep and implementation of effective interventions may be a gateway to improve quality of survival in pediatric ALL.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v67.4
    DOI: 10.1002/pbc.28165
    Language: English
    Publisher: Wiley
    Publication Date: 2020
    detail.hit.zdb_id: 2130978-4
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  • 8
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    Prevalence of Sleep Disorders, Risk Factors and Sleep Treatment Needs of Adolescents and Young Adult Childhood Cancer Patients in Follow-Up after Treatment
    MDPI AG ; 2022
    In:  Cancers Vol. 14, No. 4 ( 2022-02-13), p. 926-
    Details
    In: Cancers, MDPI AG, Vol. 14, No. 4 ( 2022-02-13), p. 926-
    Abstract: Background: Sleep disorders negatively impact adolescent and young adult childhood cancer patients’ physical and psychosocial health. Early recognition improves timely treatment. We therefore studied the prevalence of subjective sleep disorders, risk factors and sleep treatment needs after completion of childhood cancer treatment. Methods: Childhood cancer patients (12–26 years old), ≥6 months after treatment, were invited to fill out the Holland Sleep Disorders Questionnaire, which distinguishes six sleep disorders in substantial agreement with the International Classification of Sleep Disorders, second edition (ICSD-2). They additionally indicated sleep treatment needs. Prevalence rates and needs were displayed in percentages. Logistic regression models were used for risk factors. Results: 576 patients participated (response rate 55.8%)—49.5% females, mean age 17.0 years, 44.4% hemato-oncology, 31.9% solid tumors, 23.6% neuro-oncology. Prevalence rates were: insomnia (9.6%), circadian rhythm sleep disorder (CRSD; 8.1%), restless legs syndrome (7.6%), parasomnia (3.5%), hypersomnia (3.5%) and sleep-related breathing disorders (1.8%). Female sex, comorbid health conditions and young adulthood seem to be risk factors for sleep disorders, but cancer-related factors were not. Differing per sleep disorder, 42–72% wanted help, but only 0–5.6% received sleep treatment. Conclusions: Insomnia and CRSD were most prevalent. An unmet need for sleep treatment was reported by childhood cancer patients during follow-up. Screening for sleep disorders after cancer might improve access to treatment and patient wellbeing.
    Type of Medium: Online Resource
    ISSN: 2072-6694
    URL: Article
    DOI: 10.3390/cancers14040926
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2527080-1
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  • 9
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    Fatigue mediates the relationship between emotional and cognitive functioning in children post‐cancer treatment
    Wiley ; 2023
    In:  Pediatric Blood & Cancer Vol. 70, No. 10 ( 2023-10)
    Details
    In: Pediatric Blood & Cancer, Wiley, Vol. 70, No. 10 ( 2023-10)
    Abstract: Children treated for cancer are at risk to develop cognitive problems. Insight in underlying associations with emotional functioning and fatigue can be used to optimize interventions. We therefore aim to study emotional functioning, fatigue, and cognitive functioning in children postcancer treatment and investigate whether fatigue mediates the relationship between emotional and cognitive functioning. Design/methods Emotional functioning, fatigue, and cognitive functioning were assessed in children post‐cancer treatment using subscales of the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales, Multidimensional Fatigue Scale and Cognitive Functioning Scale. A one sample t ‐test was used to compare outcomes with general population peers and mediation analysis was used to address the effect of fatigue on the relationship between emotional and cognitive functioning. Results A total of 137 children (mean age: 13.6, SD ± 3.3 years; mean time since end of treatment: 7.1 months, SD ± 5.9) participated. Lower scores on emotional functioning (Cohen's d [ D ]: 0.4), fatigue ( D : 0.8) and cognitive functioning ( D : 0.6) were found ( p   〈  .001) in children post‐cancer treatment than in peers. A medium association was found between emotional and cognitive functioning (standardized regression coefficient [ β ]: 0.27, p   〈  .001), which was mediated by fatigue ( β  = 0.16). Conclusions Outcomes on emotional and cognitive functioning are decreased and fatigue is increased in children postcancer treatment. Fatigue mediates the relationship between emotional and cognitive functioning. Our results show the importance to focus on fatigue amongst stress as a target for intervention to improve cognitive functioning.
    Type of Medium: Online Resource
    ISSN: 1545-5009 , 1545-5017
    URL: Issue
    URL: Article
    DOI: 10.1002/pbc.v70.10
    DOI: 10.1002/pbc.30594
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2130978-4
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  • 10
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    From statistics to clinics: the visual feedback of PROMIS® CATs
    Springer Science and Business Media LLC ; 2021
    In:  Journal of Patient-Reported Outcomes Vol. 5, No. 1 ( 2021-12)
    Details
    In: Journal of Patient-Reported Outcomes, Springer Science and Business Media LLC, Vol. 5, No. 1 ( 2021-12)
    Abstract: To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendations for visual feedback options for PROMIS CATs on individual item and domain score level as an evidence-based feedback recommendation for PROMIS CATs is lacking. Methods Focus groups were held with clinicians who use the KLIK PROM portal. Literature-based feedback options were provided to initiate group discussion. Data was analyzed using thematic coding method. Additionally, a questionnaire was sent out to assess patients’ (12-18y) and parents’ (child 0-18y) preference for individual item feedback. Data was analyzed using descriptive statistics. Results Six focus groups were held ( N  = 28 clinicians). Regarding individual item feedback, showing the complete item bank, with only responses to administered items in traffic light colors was preferred. For domain scores, line graphs were preferred, including numerical (T-)scores, reference and cut-off lines, and traffic light colors. Separate graphs per domain, ranked in order of importance and harmonization of directionality (‘higher = better’) were considered important. Questionnaire results ( N  = 31 patients/ N  = 131 parents) showed that viewing their own item responses was preferred above receiving no item feedback by 58.1% of the patients and 77.1% of the parents. Conclusions Based on the outcomes and after discussion with the Dutch-Flemish PROMIS National Center, recommendations for PROMIS CAT feedback options were developed. PROMIS CATs can now be used in clinical practice to help clinicians monitor patient outcomes, while reducing the burden of completing PROMs for patients significantly.
    Type of Medium: Online Resource
    ISSN: 2509-8020
    URL: Article
    DOI: 10.1186/s41687-021-00324-y
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2906081-3
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