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  • 1
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    Online Resource
    The impact of chronic fatigue syndrome on cognitive functioning in adolescents
    Springer Science and Business Media LLC ; 2016
    In:  European Journal of Pediatrics Vol. 175, No. 2 ( 2016-2), p. 245-252
    Details
    In: European Journal of Pediatrics, Springer Science and Business Media LLC, Vol. 175, No. 2 ( 2016-2), p. 245-252
    Type of Medium: Online Resource
    ISSN: 0340-6199 , 1432-1076
    URL: Article
    DOI: 10.1007/s00431-015-2626-1
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2016
    detail.hit.zdb_id: 2647723-3
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  • 2
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    Severe Fatigue Is Common Among Pediatric Patients with Primary Immunodeficiency and Is Not Related to Disease Activity
    Springer Science and Business Media LLC ; 2021
    In:  Journal of Clinical Immunology Vol. 41, No. 6 ( 2021-08), p. 1198-1207
    Details
    In: Journal of Clinical Immunology, Springer Science and Business Media LLC, Vol. 41, No. 6 ( 2021-08), p. 1198-1207
    Abstract: Fatigue is a distressing symptom commonly reported among pediatric patients with primary immunodeficiency (PID). However, the relationship between fatigue and disease activity is currently unknown. Methods In this cross-sectional study, we examined the prevalence of severe fatigue, the effect of fatigue on health-related quality of life (HRQoL), and the effects of disease activity and comorbidity on fatigue severity among pediatric patients 2–18 years of age with PID. Fatigue and HRQoL were assessed using the pediatric quality of life inventory multidimensional fatigue scale (PedsQL MFS) and generic core scales (PedsQL GCS), respectively. Linear regression analyses and an analysis of covariance were used to compare the fatigue scores with the scores obtained from a healthy control group. Data were adjusted for age and sex. Results Of the 91 eligible patients, 79 were assessed (87% participation rate), with a mean age of 10.4 ± 4.4 years. Pediatric patients with PID reported significantly higher fatigue levels compared to healthy peers, with an 18.9% prevalence of severe fatigue. Moreover, higher fatigue levels were inversely associated with HRQoL in all domains and directly associated with school absences. We found that severe fatigue was comparable between common variable immunodeficiency (CVID), combined immunodeficiency (CID), and selective immunoglobulin A deficiency (SIgAD) patients, but was not reported in the X-linked agammaglobulinemia (XLA) patients studied. Finally, fatigue severity was not significantly associated with disease activity or comorbidity. Conclusions Nearly 20% of pediatric patients with PID reported experiencing severe fatigue, and fatigue was reported among a wide range of PID subcategories. In addition, severe fatigue negatively affected the patient’s quality of life and daily functioning, but was not associated with disease activity or comorbidity. Thus, targeting severe fatigue might be a promising strategy for improving the overall well-being and quality of life of pediatric patients with PID.
    Type of Medium: Online Resource
    ISSN: 0271-9142 , 1573-2592
    URL: Article
    DOI: 10.1007/s10875-021-01013-7
    RVK:
    XA 10000
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2016755-6
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  • 3
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    Effectiveness of Internet-Based Cognitive Behavior Therapy (Fatigue in Teenagers on the Internet) for Adolescents With Chronic Fatigue Syndrome in Routine Clinical Care: Observational Study
    JMIR Publications Inc. ; 2021
    In:  Journal of Medical Internet Research Vol. 23, No. 8 ( 2021-8-13), p. e24839-
    Details
    In: Journal of Medical Internet Research, JMIR Publications Inc., Vol. 23, No. 8 ( 2021-8-13), p. e24839-
    Abstract: Internet-based cognitive behavior therapy (I-CBT) for adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been shown to be effective in a randomized controlled trial (RCT; Fatigue in Teenagers on the Internet [FITNET]). FITNET can cause a significant reduction in fatigue and disability. Objective We aimed to investigate whether FITNET treatment implemented in routine clinical care (IMP-FITNET) was as effective, using the outcomes of the FITNET RCT as the benchmark. Methods Outcomes of CFS/ME adolescents who started IMP-FITNET between October 2012 and March 2018 as part of routine clinical care were compared to the outcomes in the FITNET RCT. The primary outcome was fatigue severity assessed posttreatment. The secondary outcomes were self-reported physical functioning, school attendance, and recovery rates. Clinically relevant deterioration was assessed posttreatment, and for this outcome, a face-to-face CBT trial was used as the benchmark. The attitude of therapists toward the usability of IMP-FITNET was assessed through semistructured interviews. The number of face-to-face consultations during IMP-FITNET was registered. Results Of the 384 referred adolescents with CFS/ME, 244 (63.5%) started IMP-FITNET, 84 (21.9%) started face-to-face CBT, and 56 (14.6%) were not eligible for CBT. Posttreatment scores for fatigue severity (mean 26.0, SD 13.8), physical functioning (mean 88.2, SD 15.0), and full school attendance (mean 84.3, SD 26.5) fell within the 95% CIs of the FITNET RCT. Deterioration of fatigue and physical functioning after IMP-FITNET was observed at rates of 1.2% (n=3) and 4.1% (n=10), respectively, which is comparable to a waiting list condition (fatigue: 1.2% vs 5.7%, χ21=3.5, P=.06; physical functioning: 4.1% vs 11.4%, χ21=3.3, P=.07). Moreover, 41 (16.8%) IMP-FITNET patients made use of face-to-face consultations. Conclusions IMP-FITNET is an effective and safe treatment for adolescents with CFS/ME in routine clinical care.
    Type of Medium: Online Resource
    ISSN: 1438-8871
    URL: Article
    DOI: 10.2196/24839
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2028830-X
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  • 4
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    Prevalence of Severe Fatigue Among Adolescents With Pediatric Rheumatic Diseases
    Wiley ; 2016
    In:  Arthritis Care & Research Vol. 68, No. 1 ( 2016-01), p. 108-114
    Details
    In: Arthritis Care & Research, Wiley, Vol. 68, No. 1 ( 2016-01), p. 108-114
    Abstract: To determine the prevalence of severe fatigue and fatigue‐related limitations among adolescents with juvenile idiopathic arthritis (JIA) and other pediatric rheumatic diseases (PRDs). In addition, we assessed the effect of disease activity and pain on the severity of fatigue. Methods This cross‐sectional study included 175 patients (ages 10–18 years) who visited the pediatric rheumatology and immunology outpatient clinic at Wilhelmina Children's Hospital from April through July 2013. Patients completed validated questionnaires regarding fatigue, physical functioning, and school attendance. Disease activity in JIA patients was measured using the Juvenile Arthritis Disease Activity Score including 27 joints. The results were compared against a healthy control group. Results The prevalence of severe fatigue among patients with PRDs was 25.1%, which was significantly higher than among the healthy control group ( P 〈 0.001). Fatigued patients had significantly lower levels of physical functioning compared to nonfatigued patients (62.1% versus 89.0%, respectively; P 〈 0.001) and a significantly higher percentage of school absences (21.2% versus 11.6%, respectively; P  = 0.005). Among JIA patients, the level of pain was significantly correlated with fatigue. Finally, disease activity was not a predictor for fatigue. Conclusion Fatigue is a common problem among teenagers with PRDs, with a higher prevalence among these patients than in the general population. Severe fatigue leads to significant impairments, including increased school absences and decreased physical functioning. Interestingly, fatigue was associated with pain, but not with the disease activity. Therefore, in this patient population, fatigue may be a promising therapeutic target for improving functioning, school attendance, and possibly pain as well.
    Type of Medium: Online Resource
    ISSN: 2151-464X , 2151-4658
    URL: Issue
    URL: Article
    DOI: 10.1002/acr.v68.1
    DOI: 10.1002/acr.22710
    RVK:
    XA 30325
    Language: English
    Publisher: Wiley
    Publication Date: 2016
    detail.hit.zdb_id: 2016713-1
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  • 5
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    Non-pharmacological options for managing chronic musculoskeletal pain in children with pediatric rheumatic disease: a systematic review
    Springer Science and Business Media LLC ; 2018
    In:  Rheumatology International Vol. 38, No. 11 ( 2018-11), p. 2015-2025
    Details
    In: Rheumatology International, Springer Science and Business Media LLC, Vol. 38, No. 11 ( 2018-11), p. 2015-2025
    Type of Medium: Online Resource
    ISSN: 0172-8172 , 1437-160X
    URL: Article
    DOI: 10.1007/s00296-018-4136-8
    RVK:
    XA 10000
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2018
    detail.hit.zdb_id: 1464208-6
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  • 6
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    The Permutation Distancing Test for dependent single-case observational AB-phase design data: A Monte Carlo simulation study
    Springer Science and Business Media LLC ; 2023
    In:  Behavior Research Methods
    Details
    In: Behavior Research Methods, Springer Science and Business Media LLC
    Abstract: The Permutation Distancing Test (PDT) is a nonparametric test for evaluating treatment effects in dependent single-case observational design (SCOD) AB-phase data without linear trends. Monte Carlo methods were used to estimate the PDT power and type I error rate, and to compare them to those of the Single-Case Randomization Test (SCRT) assuming a randomly determined intervention point and the traditional permutation test assuming full exchangeability. Data were simulated without linear trends for five treatment effect levels (– 2, – 1, 0, 1, 2), five autocorrelation levels (0, .15, .30, .45, .60), and four observation number levels (30, 60, 90, 120). The power was calculated multiple times for all combinations of factor levels each generating 1000 replications. With 30 observations, the PDT showed sufficient power (≥ 80%) to detect medium treatment effects up to autocorrelation ≤ .45. Using 60 observations, the PDT showed sufficient power to detect medium treatment effects regardless of autocorrelation. With ≥ 90 observations, the PDT could also detect small treatment effects up to autocorrelation ≤ .30. With 30 observations, the type I error rate was 5–7%. With 60 observations and more, the type I error rate was ≤ 5% with autocorrelation 〈 .60. The PDT outperformed the SCRT regarding power, particularly with a small number of observations. The PDT outperformed the traditional permutation test regarding type I error rate control, especially when autocorrelation increased. In conclusion, the PDT is a useful and promising nonparametric test to evaluate treatment effects in dependent SCOD AB-phase data without linear trends.
    Type of Medium: Online Resource
    ISSN: 1554-3528
    URL: Article
    DOI: 10.3758/s13428-023-02167-5
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2212635-1
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  • 7
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    Daily life participation in childhood chronic disease: a qualitative study on the child’s and parent’s perspective
    BMJ ; 2021
    In:  BMJ Paediatrics Open Vol. 5, No. 1 ( 2021-05), p. e001057-
    Details
    In: BMJ Paediatrics Open, BMJ, Vol. 5, No. 1 ( 2021-05), p. e001057-
    Abstract: To understand how a child with a stable chronic disease and his/her parents shape his/her daily life participation, we assessed: (1) the parents’ goals regarding the child’s daily life participation, (2) parental strategies regarding the child’s participation and () how children and their parents interrelate when their goals regarding participation are not aligned. Methods This was a qualitative study design using a general inductive approach. Families of children 8–19 years with a stable chronic disease (cystic fibrosis, autoimmune disease or postcancer treatment) were recruited from the PROactive study. Simultaneous in-depth interviews were conducted separately with the child and parent(s). Analyses included constant comparison, coding and categorisation. Results Thirty-one of the 57 invited families (54%) participated. We found that parents predominantly focus on securing their child’s well-being, using participation as a means to achieve well-being. Moreover, parents used different strategies to either support participation consistent with the child’s healthy peers or support participation with a focus on physical well-being. The degree of friction between parents and their child was based on the level of agreement on who takes the lead regarding the child’s participation. Conclusions Interestingly, parents described participation as primarily a means to achieve the child’s well-being, whereas children described participation as more of a goal in itself. Understanding the child’s and parent’s perspective can help children, parents and healthcare professionals start a dialogue on participation and establish mutual goals. This may help parents and children find ways to interrelate while allowing the child to develop his/her autonomy.
    Type of Medium: Online Resource
    ISSN: 2399-9772
    URL: Article
    DOI: 10.1136/bmjpo-2021-001057
    Language: English
    Publisher: BMJ
    Publication Date: 2021
    detail.hit.zdb_id: 2895377-0
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  • 8
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    Internet-delivered cognitive behavioural therapy for chronic fatigue among adolescents with a chronic medical condition: a single case study
    Cambridge University Press (CUP) ; 2023
    In:  Behavioural and Cognitive Psychotherapy Vol. 51, No. 3 ( 2023-05), p. 259-264
    Details
    In: Behavioural and Cognitive Psychotherapy, Cambridge University Press (CUP), Vol. 51, No. 3 ( 2023-05), p. 259-264
    Abstract: Severe fatigue is a prominent symptom among adolescents with a chronic medical condition, with major impact on their well-being and daily functioning. Internet-based cognitive behavioural therapy (I-CBT) is a promising treatment for severe fatigue among adolescents with a chronic medical condition, but its effectiveness has not been studied. Aims: We developed an I-CBT intervention for disabling fatigue in a chronic medical condition and tested its feasibility and effectiveness in an adolescent with an immune dysregulation disorder (IDD), namely juvenile idiopathic arthritis (JIA). Method: The application of I-CBT is illustrated through a clinical case study of a 15-year-old girl with JIA and chronic severe fatigue. An A-B single case experimental design was used with randomization of the waiting period prior to start of the intervention. Outcomes were weekly measures of fatigue severity, physical functioning, school absence and pain severity. Results: Fatigue severity significantly decreased following I-CBT. Improvements were observed towards increased school attendance and improved physical functioning following the intervention, but these effects were too small to become significant. Conclusions: The study provides preliminary support for the feasibility and effectiveness of the application of I-CBT for severe fatigue in adolescents with a long-term medical condition.
    Type of Medium: Online Resource
    ISSN: 1352-4658 , 1469-1833
    URL: Article
    DOI: 10.1017/S1352465822000716
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2023
    detail.hit.zdb_id: 1499945-6
    SSG: 5,2
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  • 9
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    Daily life participation in childhood chronic disease: a qualitative study
    BMJ ; 2020
    In:  Archives of Disease in Childhood Vol. 105, No. 5 ( 2020-05), p. 463-469
    Details
    In: Archives of Disease in Childhood, BMJ, Vol. 105, No. 5 ( 2020-05), p. 463-469
    Abstract: Opportunities to participate in daily life have improved considerably for children with chronic disease. Nevertheless, they still face challenges associated with their ever-present illness affecting every aspect of their lives. To best help these children, we aimed to assess the child’s own perspective on participation and the main considerations that affect participation in a stable phase of disease. Methods Qualitative study design was applied. Semistructured, indepth interviews were conducted and analysed by a general inductive approach using constant comparison, coding and categorisation. Children 8–18 years old with a chronic disease were recruited from a cohort study involving cystic fibrosis, autoimmune disease and post-treatment paediatric cancer. Results 31 of the 56 (55%) invited patients participated. From the perspective of children with chronic disease, participation is considered more than merely engaging in activities; rather, they view having a sense of belonging, the ability to affect social interactions and the capacity to keep up with peers as key elements of full participation. Some children typically placed a higher priority on participation, whereas other children typically placed a higher priority on their current and/or future needs, both weighing the costs and benefits of their choices and using disclosure as a strategy. Conclusions Enabling full participation from the child’s perspective will help realise patient-centred care, ultimately helping children self-manage their participation. Caregivers can stimulate this participation by evaluating with children how to achieve a sense of belonging, active involvement and a role within a peer group. This requires active collaboration between children, healthcare providers and caregivers.
    Type of Medium: Online Resource
    ISSN: 0003-9888 , 1468-2044
    URL: Article
    DOI: 10.1136/archdischild-2019-318062
    Language: English
    Publisher: BMJ
    Publication Date: 2020
    detail.hit.zdb_id: 1481191-1
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  • 10
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    Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity
    American Academy of Pediatrics (AAP) ; 2011
    In:  Pediatrics Vol. 127, No. 5 ( 2011-05-01), p. e1169-e1175
    Details
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 127, No. 5 ( 2011-05-01), p. e1169-e1175
    Abstract: To determine nationwide general practitioner (GP)-diagnosed prevalence and pediatrician–diagnosed incidence rates of adolescent chronic fatigue syndrome (CFS), and to assess CFS morbidity. DESIGN AND SETTING: We collected data from a cross-sectional national sample among GPs and prospective registration of new patients with CFS in all pediatric hospital departments in the Netherlands. PATIENTS AND METHODS: Study participants were adolescents aged 10 to 18 years. A representative sample of GPs completed questionnaires on the prevalence of CFS in their adolescent patients. Pediatric hospital departments prospectively reported new cases of CFS in adolescent patients. For every new reported case, a questionnaire was sent to the reporting pediatrician and the reported patient to assess CFS morbidity. Prevalence was estimated through the data from GP questionnaires and incidence was estimated on the basis of cases newly reported by pediatricians from January to December 2008. RESULTS: Prevalence was calculated as 111 per 100 000 adolescents and incidence as 12 per 100 000 adolescents per year. Of newly reported patients with CFS, 91% scored at or above cutoff points for severe fatigue and 93% at or above the cutoff points for physical impairment. Forty-five percent of patients with CFS reported & gt;50% school absence during the previous 6 months. CONCLUSIONS: Clinically diagnosed incidence and prevalence rates show that adolescent CFS is uncommon compared with chronic fatigue. The primary adverse impact of CFS is extreme disability associated with considerable school absence.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    URL: Article
    DOI: 10.1542/peds.2010-1147
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2011
    detail.hit.zdb_id: 1477004-0
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