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1.
Psychoneuroendocrinology ; 168: 107117, 2024 Jun 28.
Article in English | MEDLINE | ID: mdl-38986244

ABSTRACT

BACKGROUND: In patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), momentary cortisol concentrations in blood, urine, and saliva are lower compared to healthy controls. Long-term cortisol concentration can be assessed through hair, but it is unclear whether these concentrations are also lower. Additionally, it is unknown if lower cortisol extends to other patients suffering from persistent fatigue and how hair cortisol concentration (HCC) relates to fatigue levels. Therefore, this study examines HCC in fatigued patients with ME/CFS, Q fever Fatigue Syndrome (QFS), Post-COVID-19 condition (PCC), and Juvenile Idiopathic Arthritis (JIA). METHODS: Adolescent and young adult patients with ME/CFS (n=12), QFS (n=20), PCC (n=8), JIA (n=19), and controls (n=57) were included. Patients participated in a randomized cross-over trial (RCT) targeting fatigue through lifestyle and dietary self-management strategies. HCC was measured pre-post RCT in patients and once in controls, quantified using a LC-MS/MS-based method. Fatigue severity was measured with the Checklist Individual Strength-8. HCC was compared between groups with ANOVAs. Relations between HCC, fatigue severity, and other variables were investigated using linear regression analyses. RESULTS: The ME/CFS (p=.009) and QFS (p=.047) groups had lower HCC compared to controls. Overall, HCC was negatively associated with the presence of symptoms related to chronic fatigue syndromes (e.g., sleeping issues, often feeling tired, trouble thinking clearly; ß=-0.018, p=.035), except in the QFS group (ß=.063, p<.001). Baseline HCC did not predict fatigue improvement during the RCT (p=.449), and HCC increased during the trial (Mdif=.076, p=.021) regardless of clinically relevant fatigue improvement (p=.658). CONCLUSION: Lower cortisol concentration can also be observed in the long-term. Lower HCC is not limited to ME/CFS, as it was also observed in QFS. The role of cortisol may differ between these diagnoses and appears to be unrelated to fatigue levels.

2.
Games Health J ; 2024 Jun 20.
Article in English | MEDLINE | ID: mdl-38900649

ABSTRACT

This systematic review primarily aims to provide a summary of the game mechanics implemented in eHealth tools supporting young people's self-management of their chronic diseases. This review secondarily investigates the rationale for implementing game mechanics and the effects of these tools. A systematic search was conducted in Embase, Medline, PsycINFO, and Web of Science, from inception until August 30, 2022. Studies were eligible if focus was on the utilization of gamification in eHealth self-management interventions for young people (age = 10-25 years) with chronic diseases. Primary quantitative, qualitative, and mixed-method studies written in English were included. We identified 34 eHealth tools, of which 20 (59%) were gamified tools and 14 (41%) were serious games. We found that 55 unique game mechanics were implemented. The most commonly used were rewards (50%), score (44%), creative control (41%), and social interaction (32%). In comparison with gamified tools, the number and diversity of game mechanics applied were higher in serious games. For most tools (85%), a general rationale was provided for utilizing gamification, which often was to promote engaging experiences. A rationale for using specific game mechanics was less commonly provided (only for 45% of the game mechanics). The limited availability of experimental research precludes to test the effectiveness of using gamification in eHealth to support self-management in young people with chronic diseases. In this study, we highlight the importance of reporting the rationale for utilizing specific game mechanics in eHealth tools to ensure a proper alignment with evidence-based practice and the need of conducting experimental research. PROSPERO: CRD42021293037.

3.
J Psychosom Res ; 181: 111668, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38640771

ABSTRACT

OBJECTIVE: In this study, we examined the extent to which parents and their children with a chronic condition communicate their stress to one another and whether stress communication is associated with different forms of dyadic coping. METHODS: In a sample of 239 parent-child dyads, self-reported stress communication and different forms of perceived dyadic coping (i.e., emotion-oriented, problem-oriented, and negative dyadic coping) were assessed using a cross-sectional design. RESULTS: We first found that children's stress communication was positively associated with more positive (r = 0.28, p < .001) and less negative dyadic coping responses by children (r = -0.22, p < .001). Children's stress communication was also associated with more positive (r = 0.52, r = 0.45, p's < 0.001), and less negative dyadic coping responses by parents (r = -0.19, p < .001). Using dyadic data of children with a chronic condition and their parents, we found that more stress communication of children was associated with healthier coping responses of both children (perceived emotion-oriented dyadic coping: ß = 0.23, p < .001) and parents (perceived emotion-oriented dyadic coping: ß = 0.33, p < .001; perceived problem-oriented dyadic coping: ß = 0.22, p < .001). CONCLUSION: This underscores the importance of communication and adaptive coping strategies of parents and children in the context of a child's chronic condition. These findings may help us find ways to support children and their parents to optimally communicate about and deal with their stress.


Subject(s)
Adaptation, Psychological , Parent-Child Relations , Stress, Psychological , Humans , Male , Female , Child , Chronic Disease/psychology , Cross-Sectional Studies , Stress, Psychological/psychology , Adult , Parents/psychology , Emotions , Communication , Adolescent
4.
Br J Health Psychol ; 2024 Mar 26.
Article in English | MEDLINE | ID: mdl-38531612

ABSTRACT

OBJECTIVE: To examine individual outcomes after tailored lifestyle (PROfeel) or generic dietary advice as self-management intervention for persistent fatigue in adolescents and young adults with a chronic condition, to compare participants who did and did not benefit and to explore changes to factors in the biopsychosocial model of fatigue after PROfeel. METHOD: A multiple single-case AB-phase design was embedded in a randomized crossover trial (N = 45). Intensive longitudinal data (ILD) on outcomes 'fatigue severity', 'self-efficacy' and 'quality of life' (QoL) were collected through weekly smartphone measurement for 20 weeks. ILD on biopsychosocial factors were collected through experience sampling methodology for 28 days pre-post first intervention. Baseline characteristics were compared with t-tests and chi-square tests. Permutation distancing tests were used to assess change over time in all ILD. RESULTS: Regarding weekly measurements, nineteen participants (42.22%) showed small to large positive outcomes (drange = .05 to 2.59), mostly after PROfeel. Eleven participants (24.44%) showed small to moderate negative outcomes (drange = -.02 to -2.46), mostly after dietary advice. Fatigue severity improved most, followed by self-efficacy. Participants who benefitted showed higher QoL levels and lower fatigue and pain levels compared with others at baseline (all p < .02). When positive outcomes were observed after PROfeel, typically ≥1 biopsychosocial factor had been targeted successfully. CONCLUSION: Self-management advice has more potential when tailored to individual characteristics, including the biopsychosocial model of fatigue. PROfeel appears particularly useful as fatigue intervention for individuals with relatively less severe symptoms.

5.
Behav Res Methods ; 56(3): 2569-2580, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37528291

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.


Subject(s)
Monte Carlo Method , Humans , Computer Simulation
6.
Pediatr Res ; 95(4): 887-900, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38062256

ABSTRACT

BACKGROUND: With the Experience Sampling Method (ESM) participants are asked to provide self-reports of their symptoms, feelings, thoughts and behaviours in daily life. This preregistered systematic review assessed how ESM is being used to monitor emotional well-being, somatic health, fatigue and pain in children and adolescents with a chronic somatic illness. METHODS: Databases were searched from inception. Studies were selected if they included children or adolescents aged 0-25 years with a chronic somatic illness and used ESM focussing on mental health or psychosocial wellbeing, biopsychosocial factors and/or somatic health. Two reviewers extracted data of the final 47 papers, describing 48 studies. RESULTS: Most studies evaluated what factors influence medical or psychological symptoms and how symptoms influence each other. Another common purpose was to study the feasibility of ESM or ESM as part of an app or intervention. Study methods were heterogeneous and most studies lack adequate reporting of ESM applications and results. CONCLUSIONS: While ESM holds great potential for providing results and feedback to patients and caregivers, little use is being made of this option. Future studies should consider what they report in their studies, conduct a priori power analyses and how ESM can be embedded in clinical practice. IMPACT: While ESM has many clinical applications, it is currently mostly used for research purposes. Current studies using ESM are heterogeneous and lack consistent, high-quality reporting. There is great potential in ESM for providing patients and parents with personalised feedback.


Subject(s)
Ecological Momentary Assessment , Emotions , Adolescent , Humans , Child , Mental Health , Self Report , Delivery of Health Care
7.
Br J Health Psychol ; 2023 Dec 10.
Article in English | MEDLINE | ID: mdl-38072649

ABSTRACT

OBJECTIVES: To evaluate the use of two self-management intervention strategies for persistent fatigue in adolescents and young adults with a fatigue syndrome or rheumatic condition. DESIGN: A randomized crossover trial administering tailored lifestyle advice and generic dietary advice, each 12 weeks, with a four-week washout period between. METHODS: Sixty participants (aged 12-29) were included. Tailoring was achieved through the PROfeel method. Dietary guidelines were conceptualized by the Netherlands Nutrition Centre. Questionnaires were used pre-post-interventions to measure primary outcome 'fatigue severity' (Checklist Individual Strength-8) and secondary outcomes 'self-efficacy' (Self-Efficacy Scale-28) and 'quality of life' (QoL) (Paediatric Quality of Life Inventory 4.0). Feasibility and adherence were self-rated on a scale of 1 to 10 (low to high). Linear mixed modelling was used to assess change over time, compare strategy effectiveness and study the impact of intervention order. RESULTS: Fatigue severity, self-efficacy and QoL regarding 'physical' and 'emotional' functioning improved significantly over time (all p < .015). The average improvement of the two QoL subscales was clinically relevant, as was the fatigue improvement in 20 out of 46 participants who completed the trial and 5 dropouts. The interventions were equally effective, and intervention order did not impact the improvement level (prange = .242-.984). The self-management strategies received similar feasibility (M = 6.45, SD = 1.91) and adherence (M = 7.67, SD = 1.67) ratings. CONCLUSIONS: As small to clinically relevant improvements were observed, self-management strategies might be particularly useful to bridge waiting time for guided treatments such as Cognitive Behavioural Therapy.

8.
Acta Oncol ; 62(10): 1309-1321, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37676687

ABSTRACT

BACKGROUND: Fatigue is a distressing and prevalent long-term sequela of treatment for childhood cancer, and there is a need for longitudinal studies to investigate the development of fatigue over time. The objective of this study was to calculate growth-curves for the longitudinal development of fatigue after treatment for childhood cancer, and to investigate the effects of biopsychosocial predictors. MATERIALS AND METHODS: Participants were recruited from a patient monitoring program and data extracted from medical records. Parent-proxy and self-report versions of PedsQLTM Multidimensional Fatigue Scale were used to repeatedly assess fatigue up to 5 years after the end of treatment for childhood cancer. Fatigue was assessed 2440 times for 761 participants (median:3) with proxy-reports (age 2-8 years) and 2657 times for 990 participants with self-reports (above 8 years) (median:2). Mixed models were used to establish growth-curves and to analyze the effect of predictors separately for participants with solid tumors (ST), hemato-oncological malignancies and central nervous system-tumors (CNS). RESULTS: CNS-tumors were associated with more cognitive fatigue than ST at the end of treatment, for both proxy-reports (-11.30, p<.001) and self-reports (-6.78, p=.002), and for proxy-reports of general fatigue (-6.78, p=.002). The only significant difference in change over time was for self-reports of sleep-rest fatigue. The raw scores for the CNS-group decreased with -0.87 per year (95% CI -1.64; -0.81, p=.031) compared to the ST-group. Parental distress was overall the variable most associated with increased fatigue, while immunotherapy was the most frequent medical predictor. National centralization of childhood cancer care decreased fatigue for the CNS-group, but not for other diagnoses. DISCUSSION: Children and adolescents treated for CNS-tumors reported more fatigue than other participants after the end of treatment, and this difference remained over time. Results from this study may help to facilitate the early recognition of children with insufficient recovery of fatigue symptoms.


Subject(s)
Neoplasms , Adolescent , Humans , Child , Child, Preschool , Neoplasms/therapy , Cohort Studies , Quality of Life , Self Report , Longitudinal Studies
9.
Pediatr Blood Cancer ; 70(10): e30594, 2023 10.
Article in English | MEDLINE | ID: mdl-37540035

ABSTRACT

BACKGROUND/OBJECTIVES: 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 [ß]: 0.27, p < .001), which was mediated by fatigue (ß = 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.


Subject(s)
Neoplasms , Quality of Life , Humans , Child , Adolescent , Quality of Life/psychology , Fatigue/etiology , Fatigue/epidemiology , Cognition , Emotions , Peer Group , Neoplasms/complications , Neoplasms/therapy , Neoplasms/psychology
10.
ERJ Open Res ; 9(3)2023 May.
Article in English | MEDLINE | ID: mdl-37313395

ABSTRACT

Introduction: For people with cystic fibrosis (CF), gaining access to elexacaftor/tezacaftor/ivacaftor (ETI) therapy, a new modulator drug combination, is perceived as a positive life event. ETI leads to a strong improvement of disease symptoms. However, some people with CF experience a deterioration in mental wellbeing after starting ETI therapy. The primary objective of this study is to investigate if and in which direction mental wellbeing of people with CF changes after starting ETI therapy. Our secondary objectives include, among others, investigation of underlying biological and psychosocial factors associated with a change in mental wellbeing of people with CF after starting ETI therapy. Methods and analysis: The Resilience lmpacted by Positive Stressful Events (RISE) study is a single-arm, observational, prospective longitudinal cohort. It has a timeframe of 60 weeks: 12 weeks before, 12 weeks after, 24 weeks after and 48 weeks after the start of ETI therapy. The primary outcome is mental well-being, measured at each of these four time points. Patients aged ≥12 years at the University Medical Center Utrecht qualifying for ETI therapy based on their CF mutation are eligible. Data will be analysed using a covariance pattern model with a general variance covariance matrix. Ethics: The RISE study was classified by the institutional review board as exempt from the Medical Research Involving Human Subjects Act. Informed consent was obtained by both the children (12-16 years) and their caregivers, or only provided by the participants themselves when aged ≥16 years.

11.
Advers Resil Sci ; 4(2): 105-123, 2023.
Article in English | MEDLINE | ID: mdl-37139096

ABSTRACT

More than 25% of all children grow up with a chronic disease. They are at higher risk for developmental and psychosocial problems. However, children who function resiliently manage to adapt positively to these challenges. We aim to systematically review how resilience is defined and measured in children with a chronic disease. A search of PubMed, Cochrane, Embase, and PsycINFO was performed on December 9, 2022, using resilience, disease, and child/adolescent as search terms. Two reviewers independently screened articles for inclusion according to predefined criteria. Extraction domains included study characteristics, definition, and instruments assessing resilience outcomes, and resilience factors. Fifty-five out of 8766 articles were identified as relevant. In general, resilience was characterized as positive adaptation to adversity. The included studies assessed resilience by the outcomes of positive adaptation, or by resilience factors, or both. We categorized the assessed resilience outcomes into three groups: personal traits, psychosocial functioning, and disease-related outcomes. Moreover, myriad of resilience factors were measured, which were grouped into internal resilience factors (cognitive, social, and emotional competence factors), disease-related factors, and external factors (caregiver factors, social factors, and contextual factors). Our scoping review provides insight into the definitions and instruments used to measure resilience in children with a chronic disease. More knowledge is needed on which resilience factors are related to positive adaptation in specific illness-related challenges, which underlying mechanisms are responsible for this positive adaptation, and how these underlying mechanisms interact with one another. Supplementary Information: The online version contains supplementary material available at 10.1007/s42844-023-00092-2.

12.
Front Public Health ; 11: 1128156, 2023.
Article in English | MEDLINE | ID: mdl-37139357

ABSTRACT

Background: Adolescents growing up with a chronic condition might experience more social vulnerabilities compared to their healthy peers as an indirect result of their conditions. This can lead to a relatedness need frustration for these adolescents. Consequently, they might spend more time playing video games compared to their peers. Research shows that both social vulnerability and gaming intensity are predictors for problematic gaming. Therefore, we investigated if social vulnerability and gaming intensity are more pronounced in adolescents that have a chronic condition compared to the general population; and if these levels reflect the levels of a clinical group being treated for Internet Gaming Disorder (IGD). Methods: Data on peer problems and gaming intensity were compared from three separate samples: a national representative sample of adolescents, a clinical sample of adolescents that are undergoing treatment for IGD, and a sample of adolescents diagnosed with a chronic condition. Results: No differences were found on either peer problems or gaming intensity between the group of adolescents that have chronic conditions and the national representative group. The group with chronic conditions scored significantly lower on gaming intensity than the clinical group. No significant differences were found between these groups on peer problems. We repeated the analyses for boys only. Similar results were found for the group with chronic conditions compared to the national representative group. The group with chronic conditions now scored significantly lower on both peer problems and gaming intensity than the clinical group. Conclusion: Adolescents growing up with a chronic condition appear similar in their gaming intensity and peer problems compared to their healthy peers.


Subject(s)
Behavior, Addictive , Video Games , Male , Humans , Adolescent , Cross-Sectional Studies , Social Vulnerability , Chronic Disease
13.
Eur J Pediatr ; 182(7): 3139-3146, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37099091

ABSTRACT

To assess self-reported quantity and quality of sleep in Dutch children with a chronic condition compared to healthy controls and to the recommended hours of sleep for youth. Sleep quantity and quality were analyzed in children with a chronic condition (cystic fibrosis, chronic kidney disease, congenital heart disease, (auto-)immune disease, and medically unexplained symptoms (MUS); n = 291; 15 ± 3.1 years, 63% female. A subset of 171 children with a chronic condition were matched to healthy controls using Propensity Score matching, based on age and sex, ratio 1:4. Self-reported sleep quantity and quality were assessed with established questionnaires. Children with MUS were analyzed separately to distinguish between chronic conditions with and without an identified pathophysiological cause. Generally, children with a chronic condition met the recommended amount of sleep, however 22% reported poor sleep quality. No significant differences in sleep quantity and quality were found between the diagnosis groups. Children with a chronic condition and with MUS slept significantly more than healthy controls at ages 13, 15, and 16. Both at primary and secondary school, poor sleep quality was least frequent reported in children with a chronic condition and most often reported in children with MUS.  Conclusion: Overall, children with chronic conditions, including MUS, met the recommended hours of sleep for youth, and slept more than healthy controls. However, it is important to obtain a better understanding of why a substantial subset of children with chronic conditions, mostly children with MUS, still perceived their sleep quality as poor. What is Known: • According to the Consensus statement of the American Academy of Sleep medicine, typically developing children (6 to 12 years) should sleep 9 to 12 h per night, and adolescents (13 to 18 years) should sleep 8 to 10 h per night. • Literature on the optimal quantity and quality of sleep in children with a chronic condition is very limited. What is New: Our findings are important and provide novel insights: • In general, children with a chronic condition sleep according to the recommended hours of sleep. • A substantial subset of children with chronic conditions, perceived their sleep quality as poor. Although this was reported mostly by children with medically unexplained symptoms (MUS), the found poor sleep quality was independent of specific diagnosis.


Subject(s)
Medically Unexplained Symptoms , Sleep Quality , Humans , Adolescent , Child , Female , Male , Self Report , Sleep , Chronic Disease
14.
Behav Cogn Psychother ; 51(3): 259-264, 2023 May.
Article in English | MEDLINE | ID: mdl-36788703

ABSTRACT

BACKGROUND: 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.


Subject(s)
Cognitive Behavioral Therapy , Fatigue Syndrome, Chronic , Female , Humans , Adolescent , Fatigue Syndrome, Chronic/therapy , Fatigue Syndrome, Chronic/psychology , Research Design , Internet , Treatment Outcome
15.
J Psychosom Res ; 167: 111195, 2023 04.
Article in English | MEDLINE | ID: mdl-36801659

ABSTRACT

OBJECTIVE: To evaluate associations between self-reported biopsychosocial factors and persistent fatigue with dynamic single-case networks. METHODS: 31 persistently fatigued adolescents and young adults with various chronic conditions (aged 12 to 29 years) completed 28 days of Experience Sampling Methodology (ESM) with five prompts per day. ESM surveys consisted of eight generic and up to seven personalized biopsychosocial factors. Residual Dynamic Structural Equation Modeling (RDSEM) was used to analyze the data and derive dynamic single-case networks, controlling for circadian cycle effects, weekend effects, and low-frequency trends. Networks included contemporaneous and cross-lagged associations between biopsychosocial factors and fatigue. Network associations were selected for evaluation if both significant (α < 0.025) and relevant (ß ≥ 0.20). RESULTS: Participants chose 42 different biopsychosocial factors as personalized ESM items. In total, 154 fatigue associations with biopsychosocial factors were found. Most associations were contemporaneous (67.5%). Between chronic condition groups, no significant differences were observed in the associations. There were large inter-individual differences in which biopsychosocial factors were associated with fatigue. Contemporaneous and cross-lagged associations with fatigue varied widely in direction and strength. CONCLUSIONS: The heterogeneity found in biopsychosocial factors associated with fatigue underlines that persistent fatigue stems from a complex interplay between biopsychosocial factors. The present findings support the need for personalized treatment of persistent fatigue. Discussing the dynamic networks with the participant can be a promising step towards tailored treatment. TRIAL REGISTRATION: No. NL8789 (http://www.trialregister.nl).


Subject(s)
Ecological Momentary Assessment , Fatigue , Adolescent , Young Adult , Humans , Fatigue/complications , Chronic Disease , Surveys and Questionnaires , Self Report
16.
J Psychosom Res ; 165: 111130, 2023 02.
Article in English | MEDLINE | ID: mdl-36608507

ABSTRACT

OBJECTIVE: To investigate whether a paediatric Short Fatigue Questionnaire (pSFQ) assesses a valid construct for subjective fatigue, to assess its psychometric properties and provide a cut-off score for severe fatigue in children. METHODS: The pSFQ consists of 4 items from the Checklist Individual Strength-8 (CIS-8). Data of previous studies using the CIS-8 were used to assess the pSFQ in healthy children (n = 316), children with chronic fatigue syndrome (n = 173), and children with a chronic disease (n = 442). All children were 12-18 years old. Confirmatory factor analysis (CFA) was performed, followed by Cronbach alpha's to investigate internal consistency, and Spearman's correlations to assess construct validity. With ROC analysis, we determined a cut-off score for severe fatigue and provide normative data on the pSFQ for children with and without a chronic disease. RESULTS: CFA confirmed a one-factor model in the pSFQ representing subjective fatigue. Cronbach's alpha ranged from good to excellent (0.84-0.94), as did construct validity (-0.76 and - 0.87 for correlation with two other fatigue measurements). ROC analysis delivered a cut-off score of ≥21, with a sensitivity of 93.9% and specificity of 96.2% for severe fatigue. Normative data for children with and without a chronic disease showed similar patterns compared to other fatigue questionnaires. CONCLUSION: The pSFQ is a practical and reliable screening instrument for severe fatigue in children with and without a chronic disease, and effectively reduces the questionnaire length with 50% compared to the conventional CIS-8.


Subject(s)
Reproducibility of Results , Humans , Child , Adolescent , Surveys and Questionnaires , ROC Curve , Psychometrics , Chronic Disease
17.
BMJ Paediatr Open ; 6(1)2022 04.
Article in English | MEDLINE | ID: mdl-36053589

ABSTRACT

BACKGROUND: Children's views of health were explored in order to develop a health dialogue tool for children. METHODS: A qualitative research design was used as part of a codesign process. Based on semi-structured interviews with both healthy children and children with a chronic condition (aged 8-18). Two approaches were applied. The first was an open exploration of children's views on health, which was then thematically analysed. Subsequently, a framework was used, based on the six-dimensional My Positive Health (MPH) dialogue tool for adults, to guide the second part of the interviews, focusing on reviewing the children's view on health within the context of the framework. For the final draft of the dialogue tool, a framework analysis was conducted and then validated by members of the 'children's council' of the Wilhelmina Children's Hospital. RESULTS: We interviewed 65 children, 45 of whom had a chronic condition and 20 were healthy. The children described a broad concept of health with the central themes of 'feeling good about yourself' and 'being able to participate'. Based on the subsequent framework analysis, the wording of two of the six dimensions of the MPH dialogue tool was adjusted and the related aspects were adapted for better alignment with the children's concept of health. After these modifications, the tool fully matched the children's concept of health. CONCLUSION: The MPH dialogue tool for children was developed for children with and without a chronic condition, to help them open up about what they consider important for their health and well-being, and to improve directorship over decisions and actions that would affect their health. The MPH dialogue tool aims to support healthcare professionals in providing the type of care and treatment that is in line with the needs of their young patients/clients.


Subject(s)
Emotions , Chronic Disease , Humans , Qualitative Research
18.
BMJ Open ; 12(9): e059581, 2022 09 27.
Article in English | MEDLINE | ID: mdl-36167372

ABSTRACT

INTRODUCTION: Young people (aged 10-25 years) with chronic diseases are vulnerable to have reduced social participation and quality of life. It is important to empower young people to engage in their chronic diseases self-management. In comparison with traditional face-to-face care, interventions delivered through the internet and related technologies (eHealth) are less stigmatising and more accessible. Gamified eHealth self-management interventions may be particularly promising for young people. This systematic review aims at identifying (1) the game mechanics that have been implemented in eHealth interventions to support young people's self-management of their chronic (somatic or psychiatric) diseases, (2) the investigators' rationale for implementing such game mechanics and, if possible, (3) the effects of these interventions. METHODS AND ANALYSIS: The Preferred Reporting Items for Systematic reviews and Meta-Analysis statement guidelines will be followed. A systematic search of the literature will be conducted in Embase, Psycinfo and Web of Science from inception until 30 August 2022. Studies will be eligible if focused on (1) young people (aged 10-25 years) with chronic diseases and (2) describing gamified eHealth self-management interventions. When possible, the effects of the gamified interventions will be compared with non-gamified interventions or care-as-usual. Primary quantitative, qualitative or mixed-method studies written in English will be included. Two independent reviewers will (1) select studies, (2) extract and summarise the implemented game mechanics as well as the characteristics of the intervention and study, (3) evaluate their methodological quality and (4) synthesise the evidence. The reviewers will reach a consensus through discussion, and if required, a third researcher will be consulted. ETHICS AND DISSEMINATION: As systematic reviews use publicly available data, no formal ethical review and approval are needed. Findings will be published in peer-reviewed journals, presented at conferences and communicated to relevant stakeholders including patient organisations via the eHealth Junior Consortium. PROSPERO REGISTRATION NUMBER: CRD42021293037.


Subject(s)
Self-Management , Telemedicine , Adolescent , Chronic Disease , Humans , Meta-Analysis as Topic , Quality of Life , Research Design , Systematic Reviews as Topic , Telemedicine/methods
19.
Eur J Epidemiol ; 37(9): 993-1002, 2022 Sep.
Article in English | MEDLINE | ID: mdl-35980506

ABSTRACT

Children with a chronic condition face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. The PROactive cohort study identifies children with a chronic disease at high risk of debilitating fatigue, decreased daily life participation and psychosocial problems, as well as children who are resilient and thrive despite the challenges of growing up with a chronic condition. Both groups will teach us how we can best support children, adolescents and parents to adapt to and manage a disease, as well as tailor interventions to their specific needs.This cohort follows a continuous longitudinal design. It is based at the Wilhelmina Children's Hospital (WKZ) in the Netherlands and has been running since December 2016. Children with a chronic condition (e.g. cystic fibrosis, juvenile idiopathic arthritis, chronic kidney disease, or congenital heart disease) as well children with medically unexplained fatigue or pain in a broad age range (2-18 years) are included, as well as their parent(s). Data are collected from parents (of children between 2 and 18 years) and children (8-18 years), as well as data from their electronic health record (EHR). Primary outcome measures are fatigue, daily life participation, and psychosocial well-being, all assessed via patient- and proxy-reported outcome measures. Generic biological/lifestyle, psychological, and social factors were assessed using clinical assessment tools and questionnaires. In the PROactive cohort study the research assessment is an integrated part of clinical care. Children are included when they visit the outpatient clinic and are followed up annually.


Subject(s)
Health Status , Parents , Adolescent , Child , Child, Preschool , Chronic Disease , Cohort Studies , Fatigue , Humans , Parents/psychology , Quality of Life
20.
Trials ; 23(1): 683, 2022 Aug 19.
Article in English | MEDLINE | ID: mdl-35986408

ABSTRACT

BACKGROUND: Chronic fatigue with a debilitating effect on daily life is a frequently reported symptom among adolescents and young adults with a history of Q-fever infection (QFS). Persisting fatigue after infection may have a biological origin with psychological and social factors contributing to the disease phenotype. This is consistent with the biopsychosocial framework, which considers fatigue to be the result of a complex interaction between biological, psychological, and social factors. In line, similar manifestations of chronic fatigue are observed in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and juvenile idiopathic arthritis (JIA). Cognitive behavioral therapy is often recommended as treatment for chronic fatigue, considering its effectiveness on the group level. However, not everybody benefits on the individual level. More treatment success at the individual level might be achieved with patient-tailored treatments that incorporate the biopsychosocial framework. METHODS: In addition to biological assessments of blood, stool, saliva, and hair, the QFS-study consists of a randomized controlled trial (RCT) in which a single-subject experimental case series (N=1) design will be implemented using Experience Sampling Methodology in fatigued adolescents and young adults with QFS, CFS/ME, and JIA (aged 12-29). With the RCT design, the effectiveness of patient-tailored PROfeel lifestyle advices will be compared against generic dietary advices in reducing fatigue severity at the group level. Pre-post analyses will be conducted to determine relevance of intervention order. By means of the N=1 design, effectiveness of both advices will be measured at the individual level. DISCUSSION: The QFS-study is a comprehensive study exploring disrupted biological factors and patient-tailored lifestyle advices as intervention in adolescent and young adults with QFS and similar manifestations of chronic fatigue. Practical or operational issues are expected during the study, but can be overcome through innovative study design, statistical approaches, and recruitment strategies. Ultimately, the study aims to contribute to biological research and (personalized) treatment in QFS and similar manifestations of chronic fatigue. TRIAL REGISTRATION: Trial NL8789 . Registered July 21, 2020.


Subject(s)
Arthritis, Juvenile , Cognitive Behavioral Therapy , Fatigue Syndrome, Chronic , Q Fever , Arthritis, Juvenile/complications , Arthritis, Juvenile/diagnosis , Arthritis, Juvenile/therapy , Biological Factors , Cognitive Behavioral Therapy/methods , Fatigue Syndrome, Chronic/diagnosis , Fatigue Syndrome, Chronic/psychology , Fatigue Syndrome, Chronic/therapy , Humans , Q Fever/diagnosis , Randomized Controlled Trials as Topic
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