Mental health, pain and likelihood of opioid misuse among adults with sickle cell disease.

Depressive symptoms are prevalent in individuals living with sickle cell disease (SCD) and may exacerbate pain. This study examines whether higher depressive symptoms are associated with pain outcomes, pain catastrophizing, interference and potential opioid misuse in a large cohort of adults with SCD. The study utilized baseline data from the 'CaRISMA' trial, which involved 357 SCD adults with chronic pain. Baseline assessments included pain intensity, daily mood, the Patient Health Questionnaire (PHQ), the Generalized Anxiety Disorders scale, PROMIS Pain Interference, Pain Catastrophizing Scale, the Adult Sickle Cell Quality of Life Measurement Information System and the Current Opioid Misuse Measure. Participants were categorized into 'high' or 'low' depression groups based on PHQ scores. Higher depressive symptoms were significantly associated with increased daily pain intensity, negative daily mood, higher pain interference and catastrophizing, poorer quality of life and a higher likelihood of opioid misuse (all p < 0.01). SCD patients with more severe depressive symptoms experienced poorer pain outcomes, lower quality of life and increased risk of opioid misuse. Longitudinal data from this trial will determine whether addressing depressive symptoms may potentially reduce pain frequency and severity in SCD.

Mitochondrial Health, Physical Functioning, and Daily Affect: Bioenergetic Mechanisms of Dementia Caregiver Well-Being.

OBJECTIVE: Chronic stress adversely affects mental and physical well-being. However, health outcomes vary among people experiencing the same stressor. Individual differences in physical and emotional well-being may depend on mitochondrial biology, as energy production is crucial for stress regulation. This study investigated whether mitochondrial respiratory capacity corresponds to individual differences in dementia spousal caregivers' mental and physical health. METHODS: Spousal caregivers of individuals with Alzheimer's disease and related dementias ( N = 102, mean age = 71, 78% female, 83% White) provided peripheral blood samples and completed self-report questionnaires on quality of life, caregiver burden, and a 7-day affect scale. Multiple and mixed linear regressions were used to test the relationship between mitochondrial biology and well-being. RESULTS: Spare respiratory capacity ( b = 12.76, confidence interval [CI] = 5.23-20.28, p = .001), maximum respiratory capacity ( b = 8.45, CI = 4.54-12.35, p < .0001), and ATP-linked respiration ( b = 10.11, CI = 5.05-15.18, p = .0001) were positively associated with physical functioning. At average ( b = -2.23, CI = -3.64 to -0.82, p = .002) and below average ( b = -4.96, CI = -7.22 to 2.70, p < .0001) levels of spare respiratory capacity, caregiver burden was negatively associated with daily positive affect. At above average levels of spare respiratory capacity, caregiver burden was not associated with positive affect ( p = .65). CONCLUSIONS: Findings suggest that higher mitochondrial respiratory capacity is associated with better psychological and physical health-a pattern consistent with related research. These findings provide some of the earliest evidence that cellular bioenergetics are related to well-being.

Age-related effects on the anterior and posterior hippocampal volumes in 6-21 year olds: A model selection approach.

Although recent studies support significant differences in intrinsic structure, function, and connectivity along the longitudinal axis of the hippocampus, few studies have investigated the normative development of this dimension. In addition, factors known to influence hippocampal structure, such as sex or puberty, have yet to be characterized when assessing age-related effects on its subregions. This study addresses this gap by investigating the relationship of the anterior (antHC) and posterior (postHC) hippocampus volumes with age, and how these are moderated by sex or puberty, in structural magnetic resonance imaging scans from 183 typically developing participants aged 6-21 years. Based on previous literature, we first anticipated that non-linear models would best represent the relationship between age and the antHC and postHC volumes. We found that age-related effects are region-specific, such that the antHC volume remains stable with increasing age, while the postHC shows a cubic function characterized by overall volume increase with age but a slower rate during adolescence. Second, we hypothesized that models, which include biological sex or pubertal status would best describe these relationships. Contrary to expectation, models comprising either biological sex or pubertal status did not significantly improve model performance. Further longitudinal research is needed to evaluate their effects on the antHC and postHC development.

Non-pharmacological pain interventions for sickle cell crisis in pediatrics: A scoping review.

PROBLEM: Sickle cell crises (SCC) are recurrent, severe pain episodes experienced by people living with sickle cell disease (SCD). Non-pharmacological interventions have been recommended for SCC pain management however, little is known about the impact of these interventions on SCC pain. This scoping review aims to systematically identify evidence on the use and effectiveness of non-pharmacological interventions for pain management during SCC in the pediatric population. ELIGIBILITY CRITERIA: Studies were eligible if they are published in English and focusing on the use of any non-pharmacological interventions on pain during SCC in pediatric patients. Nine databases were searched including Medline, CINAHL and PsychInfo. Also, the reference lists of relevant studies were searched. SAMPLE: The database searching yielded 1517 studies. After the title and abstract screening, 1348 studies were excluded, and 169 full texts were retrieved and screened. One study was identified through handsearching. Finally, 27 articles were included in this scoping review. RESULTS: Across all studies, 27 different non-pharmacological interventions were identified. There were inconsistent results regarding the effectiveness of virtual reality, guided imagery, and cognitive-behavioral interventions in experimental studies. The most common interventions used at home were prayer, massage, and distraction. The main interventions used in hospitals were prayer and fluid intake, but this was explored by a few studies. CONCLUSION: Pediatric SCD patients use numerous non-pharmacological interventions to manage pain during SCC. However, the impact of many interventions on SCC pain has not been empirically investigated. IMPLICATIONS: Further research is necessary to establish the effectiveness of non-pharmacological interventions on SCC pain.

Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial.

BACKGROUND: Sickle cell disease (SCD) is characterized by severe acute pain episodes as well as risk for chronic pain. Digital delivery of SCD pain self-management support may enhance pain self-management skills and accessibility for youth. However, little is known about how youth with SCD and their caregivers engage with digital health programs. iCanCope with pain is a digital pain self-management platform adapted for youth with SCD and caregivers through a user-centered design approach. The program was delivered via a website (separate versions for youth and caregiver) and mobile app (youth only). OBJECTIVE: We aimed to characterize patterns of user engagement with the iCanCope with SCD program among youth with SCD and their caregivers. METHODS: A randomized controlled trial was completed across multiple North American SCD clinics. Eligible youth were aged 12-18 years, diagnosed with SCD, English-speaking, and experiencing moderate-to-severe pain interference. Eligible caregivers were English-speaking with a child enrolled in the study. Dyads were randomized to receive the iCanCope intervention or attention-control education for 8-12 weeks. This report focused on engagement among dyads who received the intervention. User-level analytics were captured. Individual interviews were conducted with 20% of dyads. Descriptive statistics characterized quantitative engagement. Content analysis summarized qualitative interview data. Exploratory analysis tested the hypothesis that caregiver engagement would be positively associated with child engagement. RESULTS: The cohort included primarily female (60% [34/57] of youth; 91% [49/56] of caregivers) and Black (>90% of youth [53/57] and caregivers [50/56]) participants. Among 56 dyads given program access, differential usage patterns were observed: both the youth and caregiver engaged (16/56, 29%), only the youth engaged (24/56, 43%), only the caregiver engaged (1/56, 2%), and neither individual engaged (16/56, 29%). While most youth engaged with the program (40/57, 70%), most caregivers did not (39/56, 70%). Youth were more likely to engage with the app than the website (85% [34/57] versus 68% [23/57]), and the most popular content categories were goal setting, program introduction, and symptom history. Among caregivers, program introduction, behavioral plans, and goal setting were the most popular content areas. As hypothesized, there was a moderate positive association between caregiver and child engagement (χ21=6.6; P=.01; ϕ=0.34). Interviews revealed that most dyads would continue to use the program (11/12, 92%) and recommend it to others (10/12, 83%). The reasons for app versus website preference among youth were ease of use, acceptable time commitment, and interactivity. Barriers to caregiver engagement included high time burden and limited perceived relevance of content. CONCLUSIONS: This is one of the first studies to apply digital health analytics to characterize patterns of engagement with SCD self-management among youth and caregivers. The findings will be used to optimize the iCanCope with SCD program prior to release. TRIAL REGISTRATION: ClinicalTrials.gov NCT03201874; https://clinicaltrials.gov/ct2/show/NCT03201874.

Partnering with Youth and Parents for the Greatest Impact of Top Patient-Oriented Priorities in Pediatric Chronic Pain Research, Care and Policy.

Our original patient-oriented research project identified the top 10 priorities for pediatric chronic pain research and care in Canada from the perspective of people with lived experience (patients), their family members and healthcare professionals through a modified James Lind Alliance Priority Setting Partnership. We undertook subsequent knowledge translation activities with youth, families, healthcare professionals, decision makers and researchers to (1) generate awareness and interest in the top 10 priorities and our partnership process, (2) facilitate collaborative dialogue and open innovation and (3) integrate and adopt the top 10 priorities into stakeholder activities. This paper describes our knowledge translation activities, outcomes and impact.

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain.

Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.

The iCanCope pain self-management application for adolescents with juvenile idiopathic arthritis: a pilot randomized controlled trial.

OBJECTIVES: To evaluate the feasibility and preliminary effectiveness of iCanCope with Pain (iCanCope), a smartphone-based pain self-management program, in adolescents with JIA. iCanCope featured symptom tracking, goal-setting, pain coping skills and social support. METHODS: A two-arm pilot randomized controlled trial was used to evaluate the iCanCope app compared with a version with symptom tracking only. Primary (feasibility) outcomes were: participant accrual/attrition rates, success of app deployment, acceptability and adherence. Secondary (preliminary effectiveness) outcomes were: pain intensity, pain-related activity limitations and health-related quality of life. Outcomes were assessed at baseline and 8 weeks. Adherence was defined as the proportion of completed symptom reports: 'low' (≤24%); 'low-moderate' (25-49%); 'high-moderate' (50-75%); or 'high' (76-100%). Linear mixed models were applied for preliminary effectiveness analyses as per intention-to-treat. RESULTS: Adolescents (N = 60) were recruited from three paediatric rheumatology centres. Rates of accrual and attrition were 82 and 13%, respectively. Both apps were deployed with high success (over 85%) and were rated as highly acceptable. Adherence was similar for both groups, with most participants demonstrating moderate-to-high adherence. Both groups exhibited a clinically meaningful reduction in pain intensity (≥1 point) that did not statistically differ between groups. There were no significant changes in activity limitations or health-related quality of life. CONCLUSION: The iCanCope pilot randomized controlled trial was feasible to implement in a paediatric rheumatology setting. Both apps were deployed successfully, with high acceptability, and were associated with moderate-to-high adherence. Preliminary reductions in pain intensity warrant a future trial to evaluate effectiveness of iCanCope in improving health outcomes in adolescents with JIA. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02764346.

Exploring the potential for online peer support mentorship: Perspectives of pediatric solid organ transplant patients.

OBJECTIVE: Self-management for patients who have undergone solid organ transplantation is demanding and a challenge for adolescents transitioning into adult-oriented healthcare systems. This study explores whether adolescent and young adult solid organ transplant patients support the use of online peer support programs that encourage peer mentorship as an approach to improve disease self-management. METHODS: A qualitative descriptive design comprised of semi-structured interviews with adolescent and young adult transplant patients. Individual interviews were audio-recorded, transcribed verbatim, and subject to content analysis. Emergent categories and themes were refined through member checking and team consensus following saturation. RESULTS: Interviews were conducted across organ groups with 15 participants (60% female) ages 14 to 22 years. Participants expressed unanimous support for an online peer support mentorship program to aid disease self-management in the pediatric transplant patient population. Three themes emerged from the interviews: (a) self-management care can be "taxing"; (b) there would be value in peer mentorship for adolescent transplant patients; and (c) online peer mentorship is the "best" option but still requires relationship building. Logistical preferences of an online peer mentorship program were solicited. The preferred peer "match" was someone of the same organ transplant group and gender who was able to have weekly contact via texting. CONCLUSIONS: Creating tailored, online peer mentorship programs is gaining evidence to justify further development. Findings from this study will support program modifications for adolescent and young adult solid organ transplant patients. Next steps will involve usability and feasibility testing of an adapted online program for this patient group.

Patient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description.

PURPOSE: Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric clinical settings has gained increasing importance as health services prioritize patient-centred pediatric care. This study explores the perspectives of pediatric solid organ transplant patients, caregivers, and healthcare practitioners (HCPs) on implementing PROMs into clinical practice. METHODS: Qualitative description methods were used to elicit stakeholder perspectives. Semi-structured interviews were conducted across five Canadian transplant centres. Purposive sampling was used to obtain maximum variation across age, gender, and transplant program for all participants, as well as discipline for HCPs. RESULTS: The study included a total of 63 participants [patients (n = 20), caregivers (n = 22) and HCPs (n = 21)]. Nearly all participants endorsed the implementation of PROMs to enhance pediatric transplant clinical care. Three primary roles for PROMs emerged: (1) to bring a transplant patient's overall well-being into the clinical care conversation; (2) to improve patient communication and engagement; and, (3) to inform the practice of clinical pediatric transplant care. Insights for effective implementation included completing electronic PROMs remotely and prior to clinical appointments by patients who are eight to 10 years of age or older. CONCLUSIONS: This study contributes to current research that supports the use of PROMs in clinical pediatric care and guides their effective implementation into practice. Future directions include the development, usability testing, and evaluation of a proposed electronic PROM platform that will inform future research initiatives.

Perspectives on team communication challenges in caring for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs - hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care. METHODS: This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis. RESULTS: Thirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care). CONCLUSION: Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.

A Clinical Communication Tool (Loop) for Team-Based Care in Pediatric and Adult Care Settings: Hybrid Mixed Methods Implementation Study.

BACKGROUND: Communication within the circle of care is central to coordinated, safe, and effective care; yet patients, caregivers, and health care providers often experience poor communication and fragmented care. Through a sequential program of research, the Loop Research Collaborative developed a web-based, asynchronous clinical communication system for team-based care. Loop assembles the circle of care centered on a patient, in private networking spaces called Patient Loops. The patient, their caregiver, or both are part of the Patient Loop. The communication is threaded, it can be filtered and sorted in multiple ways, it is securely stored, and can be exported for upload to a medical record. OBJECTIVE: The objective of this study was to implement and evaluate Loop. The study reporting adheres to the Standards for Reporting Implementation Research. METHODS: The study was a hybrid type II mixed methods design to simultaneously evaluate Loop's clinical and implementation effectiveness, and implementation barriers and facilitators in 6 health care sites. Data included monthly user check-in interviews and bimonthly surveys to capture patient or caregiver experience of continuity of care, in-depth interviews to explore barriers and facilitators based on the Consolidated Framework for Implementation Research (CFIR), and Loop usage extracted directly from the Loop system. RESULTS: We recruited 25 initiating health care providers across 6 sites who then identified patients or caregivers for recruitment. Of 147 patient or caregiver participants who were assessed and met screening criteria, 57 consented and 52 were enrolled on Loop, creating 52 Patient Loops. Across all Patient Loops, 96 additional health care providers consented to join the Loop teams. Loop usage was followed for up to 8 months. The median number of messages exchanged per team was 1 (range 0-28). The monthly check-in and CFIR interviews showed that although participants acknowledged that Loop could potentially fill a gap, existing modes of communication, workflows, incentives, and the lack of integration with the hospital electronic medical records and patient portals were barriers to its adoption. While participants acknowledged Loop's potential value for engaging the patient and caregiver, and for improving communication within the patient's circle of care, Loop's relative advantage was not realized during the study and there was insufficient tension for change. Missing data limited the analysis of continuity of care. CONCLUSIONS: Fundamental structural and implementation challenges persist toward realizing Loop's potential as a shared system of asynchronous communication. Barriers include health information system integration; system, organizational, and individual tension for change; and a fee structure for health care provider compensation for asynchronous communication.

Leveraging Virtual Reality and Augmented Reality to Combat Chronic Pain in Youth: Position Paper From the Interdisciplinary Network on Virtual and Augmented Technologies for Pain Management.

BACKGROUND: Virtual reality (VR) and augmented reality (AR) interventions are emerging as promising tools in the treatment of pediatric chronic pain conditions. However, in this young field, there is little consensus to guide the process of engaging in the development and evaluation of targeted VR-based interventions. OBJECTIVE: The INOVATE-Pain (Interdisciplinary Network on Virtual and Augmented Technologies for Pain management) consortium aims to advance the field of VR for pediatric chronic pain rehabilitation by providing guidance for best practices in the design, evaluation, and dissemination of VR-based interventions targeting this population. METHODS: An interdisciplinary meeting of 16 academics, clinicians, industry partners, and philanthropy partners was held in January 2020. RESULTS: Reviewing the state of the field, the consortium identified important directions for research-driven innovation in VR and AR clinical care, highlighted key opportunities and challenges facing the field, and established a consensus on best methodological practices to adopt in future efforts to advance the research and practice of VR and AR in pediatric pain. The consortium also identified important next steps to undertake to continue to advance the work in this promising new area of digital health pain interventions. CONCLUSIONS: To realize the promise of this realm of innovation, key ingredients for success include productive partnerships among industry, academic, and clinical stakeholders; a uniform set of outcome domains and measures for standardized evaluation; and widespread access to the latest opportunities, tools, and resources. The INOVATE-Pain collaborative hopes to promote the creation, rigorous yet efficient evaluation, and dissemination of innovative VR-based interventions to reduce pain and improve quality of life for children.

Identification and Characteristics of the Three Subgroups of Pain in Chinese Children and Adolescents with Cancer.

PURPOSE: Pain is a distressing symptom for children and adolescents with cancer and is experienced by individuals differently. This study sought to determine subgroups according to their pain experiences, and how demographic, clinical, and quality of life (QOL)-related characteristics might differ across subgroups. DESIGN AND METHODS: This cross-sectional study recruited 187 pediatric patients with cancer aged 8 to 17 years old and asked them to complete measures of pain intensity, pain duration, pain interference and pain control using the Chinese translation of the validated questionnaire from the Pain Squad app, as well as 7 PROMIS measures assessing QOL-related outcomes. Latent profile analysis (LPA) was used to identify latent subgroups. RESULTS: Three subgroups of children were identified: low-pain/low-duration (69.5%), moderate-pain/high-duration (19.8%), and high-pain/moderate-duration (10.7%). Hospitalized children were more likely to be in the moderate-pain/high-duration subgroup. Children in the high-pain/moderate-duration subgroup were more likely to be cared for by unemployed caregivers. Scores on depressive symptoms (p = 0.002), anger (p < 0.001), anxiety (p = 0.045), fatigue (p = 0.044), and mobility (p = 0.008) questionnaire were significantly worse in the high-pain/moderate-duration subgroup than the other two subgroup. PRACTICE IMPLICATIONS: This study provides a scientific foundation for further studies exploring predictive factors related to pain experiences. More targeted treatment strategies targeting the specific characteristics of each subgroup will help improve patients' QOL and use of medical resources. CONCLUSIONS: The 3 identified pain subgroups demonstrate the heterogeneity in pain experiences among pediatric patients with cancer. Knowledge of these subgroups can assist clinicians in better identifying and targeting pain treatment for children with cancer.

An apparent new syndrome of extreme short stature, microcephaly, dysmorphic faces, intellectual disability, and a bone dysplasia of unknown etiology.

We report on a 26-year-old male with extreme short stature, microcephaly, macroglossia, other dysmorphic features, severe intellectual disability, and a bone dysplasia. The patient had an extensive genetic and biochemical evaluation that was all normal or noninformative. Recently, the proband died following a period of not eating. He likely had a previously undescribed syndrome of unknown etiology.

Health-related quality of life in adolescents with persistent pain and the mediating role of self-efficacy: a cross-sectional study.

BACKGROUND: Persistent pain has a high prevalence among adolescents. Pain has been shown to reduce all aspects of the adolescent's health-related quality of life (HRQOL). In adult patients with pain, self-efficacy has been shown to mediate the relationship between pain intensity, disability and depression. However, little is known about whether self-efficacy acts as a mediating variable in the relationship between persistent pain and HRQOL sub-scale scores in a school-based population of adolescents. OBJECTIVES: To describe the experience of pain, HRQOL and self-efficacy, and to explore the association between pain intensity, general self-efficacy and HRQOL in adolescents with persistent pain by testing self-efficacy as a possible mediator. METHODS: The study participants were 78 adolescents with persistent pain, aged 16-19 years, who were recruited from five high schools in southern Norway. All participants completed an electronic survey consisting of the Lubeck Pain Questionnaire, which included a visual analogue scale (VAS) measuring pain intensity, the General Self-Efficacy Scale (GSE) and the KIDSCREEN-52 Questionnaire measuring HRQOL. Statistical analyses were conducted using the PROCESS macro for SPSS developed by Andrew Hayes. RESULTS: All participants reported pain in multiple locations, of which the head was most common (88.5%). Mean (SD) pain intensity score of the participants was 5.4 (1.8). The study sample had poor HRQOL, with mean (SD) scores for several sub-scales ranging from 45.2 (21.0) to 91.0 (13.3) on a 0-100 scale. The associations between pain intensity and the HRQOL sub-scales of physical well-being, psychological well-being, mood, self-perception, autonomy and school environment were mediated by self-efficacy. The highest degree of mediation and, thus, the largest indirect effect was estimated for the HRQOL sub-scale physical well-being (67.2%). CONCLUSIONS: This school-based sample of adolescents with persistent pain had impaired HRQOL. Up to 67% of the reduction in the HRQOL sub-scale scores for physical well-being, psychological well-being, mood, self-perception, autonomy and school environment could be explained by the mediating variable self-efficacy. Thus, future pain-management interventions that aim to increase HRQOL in school-based populations of adolescents with persistent pain should consider promoting self-efficacy and providing more targeted interventions. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT03551977.

Trait Perfectionism and Psychosocial Outcomes in Adolescents With Inflammatory Bowel Disease.

OBJECTIVES: The aim of this prospective cross-sectional study was to examine perfectionism, disease self-management, and psychosocial outcomes in a sample of adolescents with inflammatory bowel disease (IBD). METHODS: Adolescent patients with IBD and caregivers were enrolled in the study. Patients completed the Child and Adolescent Perfectionism Scale, the Strengths and Difficulties Questionnaire (SDQ), and the TRANSITION-Q. Parents completed the Multidimensional Perfectionism Scale and the parent form of the SDQ. Health care providers reported on disease activity using the Pediatric Ulcerative Colitis Activity Index (PUCAI) and the Pediatric Crohn Disease Activity Index (PCDAI). RESULTS: Ninety adolescents (mean age 15.17 ±â€Š1.49, range = 12-18) with diagnosed IBD (51 CD, 37 UC, and 2 IBD-U) and 76 primary caregivers participated in the study. Results indicated high rates of self-oriented perfectionism in adolescents with IBD (59% of sample reported elevated rates; 33% of sample in the clinical range). After accounting for age, sex, and disease activity, self-oriented perfectionistic striving was associated with better disease self-management; nonetheless, adolescent and parent perfectionistic strivings were also related to higher adolescent internalizing symptoms (standardized beta = 0.22 and 0.29, respectively). Additionally, perfectionistic concerns (self-critical and socially prescribed perfectionism) were associated with higher rates of adolescent-reported externalizing symptoms (standardized beta 0.30 and 0.24). Further, multilevel mixed modelling found no differences within-dyad in relation to perfectionism, but documented that adolescents report higher levels of externalizing symptoms compared with parents. CONCLUSIONS: The present study explores the prevalence and presentation of perfectionism in a sample of adolescents with IBD. Results suggest dimensions of perfectionism are differentially associated with psychosocial and disease management outcomes, suggesting further evidence of the relationship between perfectionism, maladaptive coping, and subsequent influences on health outcomes in the context of pediatric chronic illness.

Assessing the acceptability and efficacy of teens taking charge: Transplant-A pilot randomized control trial.

BACKGROUND: Adolescents who have undergone SOT are at heightened risk for graft failure. This pilot randomized controlled trial aimed to determine the feasibility and obtain preliminary estimates of efficacy of the online TTC program. METHODS: TTC is a web-based self-management program for adolescent SOT patients. Participants-kidney or liver transplant candidates or recipients-were enrolled over a 2-year period and randomized to either an intervention group that accessed TTC or a control group that did not access the program. Outcome measures included feasibility, how much the program was utilized, and pre- and post-intervention health-related outcomes evaluating self-management, self-efficacy, mood, use of healthcare services, and knowledge. Semi-structured interviews were conducted with participants post-intervention. RESULTS: Forty-two participants were enrolled in the study. Participants in the intervention group expressed that they enjoyed learning about other teens' experiences, but reported barriers to accessing the site, such as being too busy, computer being too slow, and not being able to access the site on their mobile device. Time spent using the website was low for the majority of participants. Patients less than 1-year post-transplant accessed TTC more than patients who had their transplant for longer. No significant differences were found for health-related outcomes between groups. CONCLUSIONS: No differences in health-related outcomes were found between groups. Further studies that examine barriers to engagement with web-based education tools are warranted.

Electronic Data Capture Versus Conventional Data Collection Methods in Clinical Pain Studies: Systematic Review and Meta-Analysis.

BACKGROUND: The most commonly used means to assess pain is by patient self-reported questionnaires. These questionnaires have traditionally been completed using paper-and-pencil, telephone, or in-person methods, which may limit the validity of the collected data. Electronic data capture methods represent a potential way to validly, reliably, and feasibly collect pain-related data from patients in both clinical and research settings. OBJECTIVE: The aim of this study was to conduct a systematic review and meta-analysis to compare electronic and conventional pain-related data collection methods with respect to pain score equivalence, data completeness, ease of use, efficiency, and acceptability between methods. METHODS: We searched the Medical Literature Analysis and Retrieval System Online (MEDLINE), Excerpta Medica Database (EMBASE), and Cochrane Central Register of Controlled Trials (CENTRAL) from database inception until November 2019. We included all peer-reviewed studies that compared electronic (any modality) and conventional (paper-, telephone-, or in-person-based) data capture methods for patient-reported pain data on one of the following outcomes: pain score equivalence, data completeness, ease of use, efficiency, and acceptability. We used random effects models to combine score equivalence data across studies that reported correlations or measures of agreement between electronic and conventional pain assessment methods. RESULTS: A total of 53 unique studies were included in this systematic review, of which 21 were included in the meta-analysis. Overall, the pain scores reported electronically were congruent with those reported using conventional modalities, with the majority of studies (36/44, 82%) that reported on pain scores demonstrating this relationship. The weighted summary correlation coefficient of pain score equivalence from our meta-analysis was 0.92 (95% CI 0.88-0.95). Studies on data completeness, patient- or provider-reported ease of use, and efficiency generally indicated that electronic data capture methods were equivalent or superior to conventional methods. Most (19/23, 83%) studies that directly surveyed patients reported that the electronic format was the preferred data collection method. CONCLUSIONS: Electronic pain-related data capture methods are comparable with conventional methods in terms of score equivalence, data completeness, ease, efficiency, and acceptability and, if the appropriate psychometric evaluations are in place, are a feasible means to collect pain data in clinical and research settings.

Evaluation of Digital Technologies Tailored to Support Young People's Self-Management of Musculoskeletal Pain: Mixed Methods Study.

BACKGROUND: Digital technologies connect young people with health services and resources that support their self-care. The lack of accessible, reliable digital resources tailored to young people with persistent musculoskeletal pain is a significant gap in the health services in Australia. Recognizing the intense resourcing required to develop and implement effective electronic health (eHealth) interventions, the adaptation of extant, proven digital technologies may improve access to pain care with cost and time efficiencies. OBJECTIVE: This study aimed to test the acceptability and need for adaptation of extant digital technologies, the painHEALTH website and the iCanCope with Pain app, for use by young Australians with musculoskeletal pain. METHODS: A 3-phased, mixed methods evaluation was undertaken from May 2019 to August 2019 in Australia. Young people aged 15 to 25 years with musculoskeletal pain for >3 months were recruited. Phases were sequential: (1) phase 1, participant testing (3 groups, each of n=5) of co-designed website prototypes compared with a control website (painHEALTH), with user tasks mapped to eHealth quality and engagement criteria; (2) phase 2, participants' week-long use of the iCanCope with Pain app with engagement data captured using a real-time analytic platform (daily check-ins for pain, interference, sleep, mood, physical activity, and energy levels; goal setting; and accessing resources); and (3) phase 3, semistructured interviews were conducted to gain insights into participants' experiences of using these digital technologies. RESULTS: Fifteen young people (12/15, 80% female; mean age 20.5 [SD 3.3] years; range 15-25 years) participated in all 3 phases. The phase 1 aggregated group data informed the recommendations used to guide 3 rapid cycles of prototype iteration. Adaptations included optimizing navigation, improving usability (functionality), and enhancing content to promote user engagement and acceptability. In phase 2, all participants checked in, with the highest frequency of full check-ins attributed to pain intensity (183/183, 100.0%), pain interference (175/183, 95.6%), and mood (152/183, 83.1%), respectively. Individual variability was evident for monitoring progress with the highest frequency of history views for pain intensity (51/183, 32.3%), followed by pain interference (24/183, 15.2%). For the goals set feature, 87% (13/15) of participants set a total of 42 goals covering 5 areas, most frequently for activity (35/42, 83%). For phase 3, metasynthesis of qualitative data highlighted that these digital tools were perceived as youth-focused and acceptable. A total of 4 metathemes emerged: (1) importance of user-centered design to leverage user engagement; (2) website design (features) promoting user acceptability and engagement; (3) app functionality supporting self-management; and (4) the role of wider promotion, health professional digital prescriptions, and strategies to ensure longer-term engagement. CONCLUSIONS: Leveraging extant digital tools, with appropriate user-informed adaptations, can help to build capacity tailored to support young people's self-management of musculoskeletal pain.