Real-time personalized feedback in mHealth for adolescents

Mobile Health (mHealth) interventions have the potential to improve early identification, prevention, and treatment of mental health problems. Grow It! is a multiplayer smartphone app designed for youth aged 12–25, allowing them to monitor their emotions and engage in daily challenges based on Cognitive Behavioral Therapy (CBT) principles. Recently, a personalized mood profile was added to improve the app. We investigated whether real-time personalized feedback on mood enhances app engagement, user experience, and the effects on affective and cognitive well-being. Sample A (N = 1269, age = 18.60 SD = 3.39, 80.6% girls, 95.4% Dutch) played the original app without feedback on their mood, and an independent Sample B (N = 386, age = 16.04 SD = 3.21, 67.6% girls, 82.9% Dutch) received the renewed version with personalized real-time feedback on their mood. Participants who received personal feedback did not have higher app engagement (t(1750,400) = 1.39, P =.206, d = 0.07; t(692,905) = 0.36, P =.971, d = 0.0) nor higher user experience (t(177,596) = 0.21, P =.831, d = 0.02; (t(794) = 1.28, P =.202, d = 0.12; χ2 (659,141) = 2.83, P =.091). Players of the renewed version (Sample B) experienced significant improvements in affective (t(175) = 3.01, P =.003, d = 0.23) and cognitive well-being (t(175) = 3.48, P = &lt;.001, d = 0.26) over the course of three weeks. The renewed version Grow It! has the potential to enhance youths’ affective and cognitive well-being. However, adding real-time insights did not seem to affect app engagement nor user experience.</p

Real-time personalized feedback in mHealth for adolescents

Mobile Health (mHealth) interventions have the potential to improve early identification, prevention, and treatment of mental health problems. Grow It! is a multiplayer smartphone app designed for youth aged 12–25, allowing them to monitor their emotions and engage in daily challenges based on Cognitive Behavioral Therapy (CBT) principles. Recently, a personalized mood profile was added to improve the app. We investigated whether real-time personalized feedback on mood enhances app engagement, user experience, and the effects on affective and cognitive well-being. Sample A (N = 1269, age = 18.60 SD = 3.39, 80.6% girls, 95.4% Dutch) played the original app without feedback on their mood, and an independent Sample B (N = 386, age = 16.04 SD = 3.21, 67.6% girls, 82.9% Dutch) received the renewed version with personalized real-time feedback on their mood. Participants who received personal feedback did not have higher app engagement (t(1750,400) = 1.39, P =.206, d = 0.07; t(692,905) = 0.36, P =.971, d = 0.0) nor higher user experience (t(177,596) = 0.21, P =.831, d = 0.02; (t(794) = 1.28, P =.202, d = 0.12; χ2 (659,141) = 2.83, P =.091). Players of the renewed version (Sample B) experienced significant improvements in affective (t(175) = 3.01, P =.003, d = 0.23) and cognitive well-being (t(175) = 3.48, P = &lt;.001, d = 0.26) over the course of three weeks. The renewed version Grow It! has the potential to enhance youths’ affective and cognitive well-being. However, adding real-time insights did not seem to affect app engagement nor user experience.</p

A Smartphone Serious Game for Adolescents (Grow It! App):Development, Feasibility, and Acceptance Study

BACKGROUND: Anxiety and mood problems in adolescents often go unnoticed and may therefore remain untreated. Identifying and preventing the development of emotional problems requires monitoring and effective tools to strengthen adolescents' resilience, for example, by enhancing coping skills. OBJECTIVE: This study describes the developmental process, feasibility, and acceptance of Grow It!, a multiplayer serious game app for adolescents aged 12-25 years. The app consists of the experience sampling method (ESM) to monitor thoughts, behaviors, and emotions in daily life to enhance self-insight and daily cognitive behavioral therapy–based challenges to promote adaptive coping. METHODS: Our approach entails an iterative game design process combined with an agile method to develop the smartphone app. The incorporated game features (ie, challenges, chat functionality, and visual representation) in the Grow It! app were co-designed with adolescent end users to increase participant engagement and adherence. RESULTS: The Grow It! app was delivered for Android and iOS in May 2020. Grow It! was offered to adolescents during the COVID-19 crisis between May and December 2020. Participants of the Grow It! COVID-19 study (sample 1: N=685; mean age 16.19, SD 3.11 years; 193/685, 28.2% boys; sample 2: N=1035; mean age 18.78, SD 3.51 years; 193/1035, 18.64% boys) completed 31.5% (13.2/42) to 49.5% (10.4/21) of challenges. Compliance of ESM was suboptimal (35.1/210, 16.7% to 32.5/105, 30.9%). Follow-up questionnaires indicated an overall score of the app of 7.1 out of 10. Moreover, 72.6% (278/383) to 75.6% (487/644) would recommend the app to friends. CONCLUSIONS: To our knowledge, Grow It! is the first gamified ESM app that both measures individual differences in emotional dynamics and offers an integrated cognitive behavioral therapy–based intervention. Our findings support the feasibility and acceptance, and therefore applicability, of the Grow It! app in adolescents. Further iterations of this serious game app will focus on the increase of compliance and on providing participants feedback through their personal mood profiles

Medically Related Post-traumatic Stress in Children and Adolescents with Congenital Heart Defects

Children and adolescents with a congenital heart defect (ConHD) frequently undergo painful or frightening medical procedures and hospitalizations. They often need multiple invasive procedures at a very young age and require regular checkups during their entire life. From other pediatric populations, it is known that these kinds of experiences can result in acute stress reactions and even in post-traumatic stress disorder (PTSD) in the long-term. PTSD and also subthreshold PTSD can lead to serious (psychosocial) impairment. However, limited information is available about PTSD in children with ConHD. Therefore, the aim of this review is to provide a summary of the current literature on post-traumatic stress (PTS) in children and adolescents with ConHD describing the prevalence of PTSD and its predictors/correlates. This review indicates that a range of 12-31% of children undergoing cardiac surgery develop PTSD. A range of 12-14% shows elevated post-traumatic stress symptoms (PTSS). These findings are comparable to those of hospitalized children without ConHD. Noteworthy, most studies used varying self-report questionnaires to measure PTSD and only one study used a semistructured interview. Although all studies point in the same direction of elevated PTSD and PTSS, systematic research is necessary to be able to draw firm conclusions. At present, as far as we know, in most clinics treating patients with ConHD, there is no regular screening for PTS in children with ConHD. In the reviewed literature, there is strong consensus that screening for PTSS and (preventive) psychological care for children and adolescents with ConHD is urgently neede

Physical symptoms and brain morphology:a population neuroimaging study in 12,286 pre-adolescents

Physical symptoms, also known as somatic symptoms, are those for which medical examinations do not reveal a sufficient underlying root cause (e.g., pain and fatigue). The extant literature of the neurobiological underpinnings of physical symptoms is largely inconsistent and primarily comprises of (clinical) case-control studies with small sample sizes. In this cross-sectional study, we studied the association between dimensionally measured physical symptoms and brain morphology in pre-adolescents from two population-based cohorts; the Generation R Study (n = 2649, 10.1 ± 0.6 years old) and ABCD Study (n = 9637, 9.9 ± 0.6 years old). Physical symptoms were evaluated using continuous scores from the somatic complaints syndrome scale from the parent-reported Child Behavior Checklist (CBCL). High‐resolution structural magnetic resonance imaging (MRI) was collected using 3-Tesla MRI systems. Linear regression models were fitted for global brain metrics (cortical and subcortical grey matter and total white matter volume) and surface-based vertex-wise measures (surface area and cortical thickness). Results were meta-analysed. Symptoms of anxiety/depression were studied as a contrasting comorbidity. In the meta-analyses across cohorts, we found negative associations between physical symptoms and surface area in the (i) left hemisphere; in the lateral orbitofrontal cortex and pars triangularis and (ii) right hemisphere; in the pars triangularis, the pars orbitalis, insula, middle temporal gyrus and caudal anterior cingulate cortex. However, only a subset of regions (left lateral orbitofrontal cortex and right pars triangularis) were specifically associated with physical symptoms, while others were also related to symptoms of anxiety/depression. No significant associations were observed for cortical thickness. This study in preadolescents, the most representative and well-powered to date, showed that more physical symptoms are modestly related to less surface area of the prefrontal cortex mostly. While these effects are subtle, future prospective research is warranted to understand the longitudinal relationship of physical symptoms and brain changes over time. Particularly, to elucidate whether physical symptoms are a potential cause or consequence of distinct neurodevelopmental trajectories.</p

Applications of the experience sampling method (ESM) in paediatric healthcare:a systematic review

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.</p

Life expectancy and end-of-life communication in adult patients with congenital heart disease, 40-53 years after surgery

Aims: Although survival of patients with congenital heart disease (CHD) improved significantly over time, life expectancy is still not normal. We aimed to investigate how adult patients, their partners, and treating cardiologists estimated the individual life expectancy of CHD patients. Furthermore, preferences regarding end-of-life (EOL) communication were investigated. Methods and results: In this study, we included 202 patients (age: 50 ± 5) who were operated in childhood (&lt;15 years old) between 1968 and 1980 for one of the following diagnoses: atrial septal defect, ventricular septal defect, pulmonary stenosis, tetralogy of Fallot, or transposition of the great arteries. A specific questionnaire was administered to both the patients and their partners, exploring their perceived life expectancy and EOL wishes. Two cardiologists independently assessed the life expectancy of each patient. Most adults with CHD believed their life expectancy to be normal. However, significant differences were found between estimated life expectancy by the cardiologist and patients (female: P = 0.001, male: P = 0.002) with moderate/severe defects, as well as for males with mild defects (P = 0.011). Regarding EOL communication, 85.1% of the patients reported that they never discussed EOL with a healthcare professional. Compared with patients with mild CHD, significantly more patients with moderate/severe defect discussed EOL with a physician (P = 0.011). The wish to discuss EOL with the cardiologist was reported by 49.3% of the patients and 41.7% of their partners. Conclusion: Adult patients, especially with moderate/severe CHD, perceived their life expectancy as normal, whereas cardiologists had a more pessimistic view than their patients. Increased attention is warranted for discussions on life expectancy and EOL to improve patient-tailored care.</p

Applications of the experience sampling method (ESM) in paediatric healthcare: a systematic review

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

Autism Symptoms in Children and Young Adults With Fragile X Syndrome, Angelman Syndrome, Tuberous Sclerosis Complex, and Neurofibromatosis Type 1:A Cross-Syndrome Comparison

Objective: The etiology of autism spectrum disorder (ASD) remains unclear, due to genetic heterogeneity and heterogeneity in symptoms across individuals. This study compares ASD symptomatology between monogenetic syndromes with a high ASD prevalence, in order to reveal syndrome specific vulnerabilities and to clarify how genetic variations affect ASD symptom presentation. Methods: We assessed ASD symptom severity in children and young adults (aged 0-28 years) with Fragile X Syndrome (FXS, n = 60), Angelman Syndrome (AS, n = 91), Neurofibromatosis Type 1 (NF1, n = 279) and Tuberous Sclerosis Complex (TSC, n = 110), using the Autism Diagnostic Observation Schedule and Social Responsiveness Scale. Assessments were part of routine clinical care at the ENCORE expertise center in Rotterdam, the Netherlands. First, we compared the syndrome groups on the ASD classification prevalence and ASD severity scores. Then, we compared individuals in our syndrome groups with an ASD classification to a non-syndromic ASD group (nsASD, n = 335), on both ASD severity scores and ASD symptom profiles. Severity scores were compared using MANCOVAs with IQ and gender as covariates. Results: Overall, ASD severity scores were highest for the FXS group and lowest for the NF1 group. Compared to nsASD, individuals with an ASD classification in our syndrome groups showed less problems on the instruments' social domains. We found a relative strength in the AS group on the social cognition, communication and motivation domains and a relative challenge in creativity; a relative strength of the NF1 group on the restricted interests and repetitive behavior scale; and a relative challenge in the FXS and TSC groups on the restricted interests and repetitive behavior domain. Conclusion: The syndrome-specific strengths and challenges we found provide a frame of reference to evaluate an individual's symptoms relative to the larger syndromic population and to guide treatment decisions. Our findings support the need for personalized care and a dimensional, symptom-based diagnostic approach, in contrast to a dichotomous ASD diagnosis used as a prerequisite for access to healthcare services. Similarities in ASD symptom profiles between AS and FXS, and between NF1 and TSC may reflect similarities in their neurobiology. Deep phenotyping studies are required to link neurobiological markers to ASD symptomatology

Autism Spectrum Disorder in an Unselected Cohort of Children with Neurofibromatosis Type 1 (NF1)

In a non-selected sample of children with Neurofibromatosis type 1 (NF1) the prevalence rate of autism spectrum disorder (ASD) and predictive value of an observational (ADOS)—and questionnaire-based screening instrument were assessed. Complete data was available for 128 children. The prevalence rate for clinical ASD was 10.9%, which is clearly higher than in the general population. This prevalence rate is presumably more accurate than in previous studies that examined children with NF1 with an ASD presumption or solely based on screening instruments. The combined observational- and screening based classifications demonstrated the highest positive predictive value for DSM-IV diagnosis, highlighting the importance of using both instruments in children with NF1