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Background: An increase in self-management skills for adolescent thoracic transplant recipients may improve health outcomes and facilitate a successful transition to adulthood. The iPeer2Peer© program is an online peer mentorship program that has been successfully implemented as a self-management intervention in multiple chronic disease populations. This study aimed to determine the implementation and effectiveness outcomes of the iPeer2Peer program for adolescent thoracic transplant recipients., Methods: A type III, hybrid implementation-effectiveness pilot study that comprised a quasi-experimental single-arm pre-post design was used to evaluate the iPeer2Peer program. Participant mentees, ages 12 to 17, were recruited from two large Canadian transplant centres. Peer mentors, ages 18 to 25, were thoracic transplant recipients who had successfully transitioned to adult care and self-manage their condition. A mixed methods approach for data collection was used, including interviews, focus groups, and standardized questionnaires., Results: Twenty mentees (median 15.0 years, IQR 3.3 years; 65% female) completed the iPeer2Peer program with nine young adult mentors (median 21.0 years, IQR 3.0 years; 78% female). Implementation outcomes indicated that the iPeer2Peer intervention was perceived as feasible, adoptable, acceptable, and appropriate for adolescent thoracic transplant recipients. Significant findings were noted in mentees for increased self-management and a decrease in overall depression and anxiety symptoms., Conclusions: The successful implementation of the pilot iPeer2Peer program offers support to evaluate the scalability, sustainability, and cost-effectiveness of the program for adolescents with chronic illness, specifically thoracic transplant recipients. Changes to the iPeer2Peer program that facilitate a flexible delivery may help implementation and acceptance., (Copyright © 2024. Published by Elsevier Inc.)

Improving cognitive sequelae in children treated for brain tumours (CTBT) requires accessible interventions. While instructor-led exercise in a hospital setting is efficacious, it is not extended to communities., Objectives: We aimed to (i) develop a website with educational resources/tools for community health and fitness professionals (HFP) to deliver exercise for CTBT in community settings to improve cognition and (ii) assess its usability by community HFP. It was hypothesized that the website would be learnable, clear, satisfactory and efficient to deliver exercise., Methods: A scoping review determined the state of eHealth resources to support exercise for CTBT and identified knowledge and resource gaps. Three focus groups with HFP who served cancer survivors in hospital or community settings ( n  = 13) identified user needs; content analysis identified themes. Gaps from the scoping review and themes from focus groups informed website content. A questionnaire assessed its usability by community HFP ( n  = 4). Descriptive statistics inferred the website's learnability, clarity, satisfaction and efficiency. Open-ended responses identified issues., Results: The scoping review revealed a lack of eHealth resources supporting exercise to improve cognition in CTBT and education for HFP to deliver exercise. Six themes were identified in the focus groups. HFP rated the website as sufficiently learnable, clear, satisfactory and efficient. Two minor issues were reported and addressed., Conclusion: The website marks one of the first eHealth resources to increase accessibility of intervention to improve cognitive sequelae and ultimately quality of life in CTBT. HFP also gain access to education and tools to deliver exercise in community settings., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

Background and Objectives: Care plans summarize a child with medical complexity's (CMC) medical history and ongoing care needs. Often, the health care team controls the care plan content, limiting caregivers' ability to edit the document in real time and potentially compromising accuracy and utility. With this study, we aimed to provide caregivers of CMC with online access and shared editing control of their child's care plan and to explore the experiences of caregivers and care team members (CTMs) after using an online collaborative care plan (OCCP)., Methods: Caregivers of CMC were recruited from a tertiary complex care program to use an online, patient-facing platform for 6 months, which included the ability to edit and share their child's care plan. Caregivers and CTMs participated in semi-structured interviews to explore their experiences in using the OCCP. Consistent with grounded theory methodology, a constant comparative analysis was used, which allowed for theoretical sampling and theory generation., Results: A total of 15 caregivers and 20 CTMs completed interviews. Interviews revealed 3 major themes and 9 subthemes, including (1) the navigation of uncharted roles (trust, responsibility), (2) the requirements for success (electronic medical record integration, online access, collaborative care plan review), and (3) cohesive care (accessibility and convenience, being on the same page, autonomy). Themes informed the creation of a theoretical model for the implementation and utility of OCCPs., Conclusions: Online, collaborative care plans, when implemented safely and thoughtfully, promote shared understanding, improve caregiver autonomy, and increase the accessibility of health information. Together, these benefits facilitate cohesive care and authentic partnership between caregivers and CTMs in the care of CMC., (Copyright © 2024 by the American Academy of Pediatrics.)

Abstract: Although survivors of childhood cancer are at an increased risk, little is known about the prevalence of chronic pain, associated interference, and daily pain experiences. Survivors (N = 233; mean age = 40.8 years, range 22-64 years; mean time since diagnosis = 32.7 years) from the Childhood Cancer Survivor Study completed pain and psychosocial measures. Survivors with chronic pain completed 2-week, daily measures assessing pain and psychological symptoms using mHealth-based ecological momentary assessment. Multivariable-modified Poisson and linear regression models estimated prevalence ratio estimates (PR) and mean effects with 95% confidence intervals (CI) for associations of key risk factors with chronic pain and pain interference, respectively. Multilevel mixed models examined outcomes of daily pain and pain interference with prior day symptoms. Ninety-six survivors (41%) reported chronic pain, of whom 23 (24%) had severe interference. Chronic pain was associated with previous intravenous methotrexate treatment (PR = 1.6, 95% CI 1.1-2.3), respiratory (PR = 1.8, 95% CI 1.2-2.5), gastrointestinal (PR = 1.6, 95% CI 11.0-2.3), and neurological (PR = 1.5, 95% CI 1.0-2.1) chronic health conditions, unemployment (PR = 1.4, 95% CI 1.0-1.9) and clinically significant depression and anxiety (PR = 2.9, 95% CI 2.0-4.2), as well as a diagnosis of childhood Ewing sarcoma or osteosarcoma (PR = 1.9, 95% CI 1.0-3.5). Higher pain interference was associated with cardiovascular and neurological conditions, unemployment and clinical levels of depression and/or anxiety, and fear of cancer recurrence. For male, but not female survivors, low sleep quality, elevated anxiety, and elevated depression predicted high pain intensity and interference the next day. A substantial proportion of childhood cancer survivors experience chronic pain and significant associated interference. Chronic pain should be routinely evaluated, and interventions are needed., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the International Association for the Study of Pain.)

Background: Most children and adolescents with cancer experience acute pain, and many experience longer-lasting chronic pain, negatively impacting health-related quality of life and resulting in long-term morbidity. Digital apps can aid in enhancing pain assessment and management by offering children and adolescents with cancer an accessible tool to describe their pain as a multifaceted biopsychosocial construct. Pain Squad is a useable, acceptable, and psychometrically sound multidimensional cancer pain assessment app for children and adolescents with cancer. This project aimed to evaluate the capacity to implement Pain Squad into routine pediatric oncology practice. Method: Nurse champions were asked to prescribe the Pain Squad app to patients over a 6-month implementation period. After the implementation period, we conducted audiorecorded, semistructured interviews with nurse champions to investigate the facilitators and barriers related to nurses' experiences with implementing Pain Squad. Results: The facilitators and barriers to Pain Squad implementation were organized into four overarching Consolidated Framework for Implementation Research (CFIR)-related themes: (a) characteristics of the Pain Squad app; (b) clinic setting and its context; (c) nurse implementation champions; and (d) the process of implementing Pain Squad into clinical practice. Conclusions: Interviewed nurses believed Pain Squad had the potential to improve child cancer pain care, but barriers to everyday use were evident, described in relation to the internal setting, especially the lack of compatibility between app prescription and current nurse workflows. The use of CFIR to map identified implementation facilitators and barriers can formally support the recognition of factors that may boost the chances of successful uptake., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Age and sex differences may exist in the frequency (incidence, prevalence) or symptoms of neuropathic pain (NP) and complex regional pain syndrome (CRPS) due to biopsychosocial factors (eg, neurodevelopment, physiological and hormonal changes, psychosocial differences) that evolve through childhood and adolescence. Age and sex differences may have implications for evaluating screening and diagnostic tools and treatment interventions., Objective: To map the existing literature on pediatric NP and CRPS with respect to age and sex distributions, and age and sex differences in symptomology and frequency., Methods: A scoping literature review was conducted. Databases were searched from inception to January 2023. Data were collected on study design, setting, demographics, and age and sex differences in frequency and symptoms., Results: Eighty-seven studies were included. Distribution of participants with CRPS (n=37 studies) was predominantly early adolescence (10 to 14 y) and female sex, while NP (n=42 studies) was most commonly reported throughout adolescence (10 to 19 y) in both sexes. Forty-one studies examined age and sex differences in frequency; 6 studies reported higher frequency in adolescence. Very few studies (n=11) examined differences in symptomology., Discussion: Large epidemiological studies are required to further understand age and sex differences in frequency of pediatric NP and CRPS. Age and sex differences must be considered when evaluating screening and diagnostic tools and treatment interventions to ensure relevance and validity to both sexes and across ages. Validated tools will improve understanding of age-dependent and sex-dependent differences in symptoms, pathophysiology, and psychosocial impact of pediatric NP and CRPS., Competing Interests: The authors declare no conflict of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Pain is common in paediatric populations and is best treated with a multi-disciplinary approach. Art therapy interventions are gaining popularity in paediatrics; however, there is limited evidence on its impact on pain outcomes in children and adolescents. The objective of this scoping review is to map current research on art therapy's impact as an intervention in paediatric populations experiencing any type of pain (i.e., acute, recurrent, and chronic). Electronic searches were conducted by a medical librarian to identify studies that used art therapy interventions in paediatric populations with pain as an outcome measure. Four reviewers independently screened and selected articles for extraction using Covidence and data were extracted from articles using study objectives. There were five studies that met the inclusion criteria. Four of the five studies reported on pain intensity and all studies reported on emotional functioning. Findings suggest art therapy interventions can be helpful for reducing pain, anxiety, stress, and fear associated with treatment. Further, there is emerging evidence that art therapy can support the management of acute and procedural pain in children. Future research should examine the impacts of integrating art therapy interventions into the multidisciplinary management of paediatric pain.

Since it emerged in the early 2000's, intensive education about 'how pain works', widely known as pain neuroscience education or explaining pain, has evolved into a new educational approach, with new content and new strategies. The substantial differences from the original have led the PETAL collaboration to call the current iteration 'Pain Science Education'. This review presents a brief historical context for Pain Science Education, the clinical trials, consumer perspective, and real-world clinical data that have pushed the field to update both content and method. We describe the key role of educational psychology in driving this change, the central role of constructivism, and the constructivist learning frameworks around which Pain Science Education is now planned and delivered. We integrate terminology and concepts from the learning frameworks currently being used across the PETAL collaboration in both research and practice-the Interactive, Constructive, Active, Passive framework, transformative learning theory, and dynamic model of conceptual change. We then discuss strategies that are being used to enhance learning within clinical encounters, which focus on the skill, will, and thrill of learning. Finally, we provide practical examples of these strategies so as to assist the reader to drive their own patient pain education offerings towards more effective learning. PERSPECTIVE: Rapid progress in several fields and research groups has led to the emergence 'Pain Science Education'. This PETAL review describes challenges that have spurred the field forward, the learning frameworks and educational strategies that are addressing those challenges, and some easy wins to implement and mistakes to avoid., (Crown Copyright © 2024. Published by Elsevier Inc. All rights reserved.)

Background: Digital interventions are increasingly popular for the provision of nonpharmacological pain interventions, but few exist for adolescents with menstrual pain. User-centered design involves incorporating users across phases of digital health intervention design, development, and implementation and leads to improved user engagement and outcomes. A needs assessment is the first step of this approach., Objective: The goal of this study was to conduct a needs assessment to understand menstrual pain management needs and preferences and mindfulness experiences, preferences, and knowledge of adolescents with menstrual pain to inform the future development of an app for managing menstrual pain., Methods: We used an explanatory sequential mixed method design that included a survey followed by focus groups. Adolescents aged 13-17 years completed a survey (n=111) and participated in focus groups (n=16). Data were analyzed using descriptive statistics and thematic content analysis and synthesized to provide specific recommendations based on adolescent responses., Results: Adolescents (n=111) who completed the survey reported a moderate understanding of mindfulness and menstrual pain. Over three-quarters (n=87, 78%) of participants practiced some form of mindfulness and 87% (n=97) of survey participants used nonpharmacological pain management strategies. Teens had a moderate perception that mindfulness could help their menstrual pain (mean 4.51/10, SD 2.45, with higher scores suggesting more interest). Themes were generated related to mindfulness experiences, menstrual pain knowledge and experiences, and app functionality. These themes underscored adolescents' need for continued support and flexible access to mindfulness activities; their awareness of multiple influences to pain, with potential for further education in this area; and the need for menstrual pain-specific content, along with content relevant to typical day-to-day experiences of adolescents., Conclusions: Adolescents with menstrual pain have an interest in using a mindfulness app for pain but have unique needs that need to be addressed to ensure app engagement and relevance for this population. Concrete recommendations for future app development are provided., (©Michelle M Gagnon, Alexandra R Brilz, Nicole M Alberts, Jennifer L Gordon, Tracie L Risling, Jennifer N Stinson. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 08.04.2024.)

Abstract: Juvenile fibromyalgia (JFM) is a chronic condition characterized by symptoms of pain and fatigue and is associated with sedentary behavior and functional disability. Adults with fibromyalgia exhibit deficits in physical fitness as evidenced by lower aerobic capacity and physical endurance, but it is unknown whether these impairments are apparent in adolescents with JFM. Furthermore, the extent to which functional disability and pain interference relate to measures of physical fitness has not been investigated in a pediatric pain population. During a baseline assessment for a clinical trial, 321 adolescents with juvenile fibromyalgia (M age = 15.14, 85.2% female) completed measures of pain intensity, fatigue, JFM symptom severity, functional disability, and pain interference. They also completed 2 validated fitness tasks: (1) the Harvard step test, which assesses aerobic fitness, and (2) the 6-minute walk test, a simple submaximal test of endurance. We examined associations among self-report measures and fitness assessments using bivariate correlations. We then employed hierarchical regression analyses to determine the unique contributions of physical fitness assessments to self-reported functional disability and pain interference. Results indicated that youth with JFM exhibited deficits in aerobic capacity and physical endurance. However, physical fitness explained negligible variance in functional disability and pain interference beyond that accounted for by pain, fatigue, and JFM symptom severity. Scores on available functional disability measures may reflect perceived difficulties in coping with symptoms during physical tasks rather than actual physical capability. Rigorous and sensitive assessments of physical fitness and endurance are needed to determine whether rehabilitation interventions for pediatric pain improve physical functioning., (Copyright © 2023 International Association for the Study of Pain.)

Abstract: Severe acute and chronic pain are the most common complications of sickle cell disease (SCD). Pain results in disability, psychosocial distress, repeated clinic visits/hospitalizations, and significant healthcare costs. Psychosocial pain interventions that teach cognitive and behavioral strategies for managing pain have been effective in other adolescent populations when delivered in person or through digital technologies. Our aim was to conduct a multisite, randomized, controlled trial to improve pain and coping in youth aged 12 to 18 years with SCD using a digital cognitive-behavioral therapy program (iCanCope with Sickle Cell Disease; iCC-SCD) vs Education control. We enrolled 137 participants (ages 12-18 years, 59% female) and analyzed 111 adolescents (107 caregivers), 54 randomized to Education control and 57 randomized to iCC-SCD. Ninety-two percent of youth completed posttreatment assessments and 88% completed 6-month follow-up. There was a significant effect of treatment group (iCC-SCD vs Education) on reduction in average pain intensity from baseline to 6-month follow-up (b = -1.32, P = 0.009, 95% CI [-2.29, -0.34], d = 0.50), and for the number of days with pain, adolescents in the iCC-SCD group demonstrated fewer pain days compared with the Education group at 6-month follow-up (incident rate ratio = 0.63, P = 0.006, 95% CI [0.30, 0.95], d = 0.53). Treatment effects were also found for coping attempts, momentary mood, and fatigue. Several secondary outcomes did not change with intervention, including anxiety, depression, pain interference, and global impression of change. Future studies are needed to identify effective implementation strategies to bring evidence-based cognitive-behavioral therapy for sickle cell pain to SCD clinics and communities., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the International Association for the Study of Pain.)

Introduction: Neuropathic pain (NP) arises from nerve damage or disease, and when not defined, it can impair function and quality of life. Early detection allows for interventions that can enhance outcomes. Diagnosis of NP can be difficult if not properly evaluated. PainDETECT is a NP screening tool developed and successfully used in adults., Objectives: We evaluated the validity of painDETECT in a pediatric population., Methods: Adolescents and young adults (10-19 years old) completed painDETECT and quantitative sensory testing (QST), which assessed mechanical allodynia and hyperalgesia, common symptoms of NP. Pain diagnoses, including neuropathic pain (n = 10), were collected through documentation in the medical chart. Descriptive statistics were used to examine age, gender, pain diagnoses, and painDETECT scores. Kruskal-Wallis H tests were conducted to examine differences in QST results across painDETECT categorizations., Results: Youth with chronic pain (N = 110, M age = 15.08 ± 2.4 years, N female = 88) and peers without pain (N = 55, M age = 15.84 ± 3.9 years, N female = 39) completed the painDETECT. The painDETECT scores for youth with pain (M = 12.7 ± 6.76) were significantly higher than those for peers without pain (M = 2.05 ± 2.41). PainDETECT demonstrated 80% sensitivity and 33% specificity in a pediatric population. Individuals who screened positively on the PainDETECT had significantly higher mechanical allodynia (M = 0.640 ± 0.994) compared with those who screened negatively (M = 0.186 ± 0.499; P = 0.016)., Conclusion: PainDETECT demonstrated the ability to screen for NP, and QST mechanical allodynia results were consistent with a positive NP screen. Results of the study offer preliminary support for the ongoing assessment of the painDETECT as a brief, inexpensive, and simple-to-use screening tool for pediatric patients with primary pain complaints., Competing Interests: The authors have no conflict of interest to declare., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of The International Association for the Study of Pain.)

Pediatric Pain Measurement, Assessment, and Evaluation: Renee C.B. Manworren, Jennifer Stinson Seminars in Pediatric Neurology Volume 23, Issue 3, August 2016, Pages 189-200 Assessment provides the foundation for diagnosis, selection of treatments, and evaluation of treatment effectiveness for pediatric patients with acute, recurrent, and chronic pain. Extensive research has resulted in the availability of a number of valid, reliable, and recommended tools for assessing children's pain. Yet, evidence suggests children's pain is still not optimally measured or treated. In this article, we provide an overview of pain evaluation for premature neonates to adolescents. The difference between pain assessment and measurement is highlighted; and the key steps to follow are identified. Information about self report and behavioral pain assessment tools appropriate for children are provided; and fac tors to be considered when choosing a specific 1 are outlined. Finally, we preview future approaches to personalized pain medicine in pediatrics that include harnessing the use of potential digital health technologies and genomics., Competing Interests: Declaration of Competing Interest All authors have no conflicts of interest to disclose. Manworren's ML model and AI work is supported by a Perinatal Origins of Disease Grant from Stanley Manne Children's Research Institute and the National Science Foundation., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: Juvenile fibromyalgia (JFM) is a complex chronic pain condition that remains poorly understood. The study aimed to expand the clinical characterization of JFM in a large representative sample of adolescents with JFM and identify psychological factors that predict pain interference., Methods: Participants were 203 adolescents (ages 12-17 years) who completed baseline assessments for the multisite Fibromyalgia Integrative Training for Teens (FIT Teens) randomized control trial. Participants completed the Pain and Symptom Assessment Tool, which includes a Widespread Pain Index (WPI; 0-18 pain locations) and Symptom Severity checklist of associated somatic symptoms (SS; 0-12) based on the 2010 American College of Rheumatology criteria for fibromyalgia. Participants also completed self-report measures of pain intensity, functional impairment, and psychological functioning., Results: Participants endorsed a median of 11 painful body sites (WPI score) and had a median SS score of 9. Fatigue and nonrestorative sleep were prominent features and rated as moderate to severe by 85% of participants. Additionally, neurologic, autonomic, gastroenterologic, and psychological symptoms were frequently endorsed. The WPI score was significantly correlated with pain intensity and catastrophizing, while SS scores were associated with pain intensity and all domains of physical and psychological functioning. Depressive symptoms, fatigue, and pain catastrophizing predicted severity of pain impairment., Conclusion: JFM is characterized by chronic widespread pain with fatigue, nonrestorative sleep, and other somatic symptoms. However, how diffusely pain is distributed appears less important to clinical outcomes and impairment than other somatic and psychological factors, highlighting the need for a broader approach to the assessment and treatment of JFM., (© 2022 American College of Rheumatology.)

Background: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families' decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs., Methods: We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8-18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis., Results: A total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families' values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied., Conclusions: Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes., (© 2023. The Author(s).)

Introduction: Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic condition in which chronic pain is a predominant issue. Given the rarity of the disease, there are limited psychosocial treatments for individuals with NF1 suffering with chronic pain. Using mobile applications can facilitate psychosocial treatments; however, there are consistent issues with engagement. Utilizing a mixed methodology, the current study evaluated the customized iCanCope mobile application for NF1 on increasing engagement through the usage of contingency management., Methods: A mixed methods study from a subset of data coming from a randomized clinical trial that occurred from January 2021 to August 2022 was undertaken. Two groups (iCC and iCC + CM) were exposed to the customized iCanCope mobile application in which engagement data were captured in real-time with daily check-ins for interference, sleep, mood, physical activity, energy levels, goal setting, and accessing article content (coping strategies). Additionally, semi-structured interviews were conducted to gain insight into the participants' experience at the end of the trial., Results: Adults (N = 72) were recruited via NF patient advocacy groups. Significant differences were noted between the groups in total articles read ( p = 0.002), goals achieved ( p = 0.017), and goals created ( p = 008). Additionally, there were significant differences observed between user-generated goals and those that were app recommended ( p < 0.001). Both groups qualitatively reported positive feedback on the customized mobile application, indicating that continued usage and engagement of the mobile application were acceptable., Conclusions: Employing customized mobile applications for adults with NF1 along with contingency management can leverage self-managed pain treatments while providing auxiliary resources to this population.

Background: Pain is one of the most frequently reported experiences amongst children with Juvenile Idiopathic Arthritis (JIA); however, the management of JIA pain remains challenging. As pain is a multidimensional experience that is influenced by biological, psychological, and social factors, the key to effective pain management lies in understanding these complex relationships. The objective of this study is to systematically review the literature on psychosocial factors of children with JIA and their caregivers 1) associated with and 2) predictive of later JIA pain intensity, frequency, and sensitivity in children 0-17 years of age., Methods: The Joanna Briggs Institute methodology for etiology and risk and Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement guided the conduct and reporting of this review. Terms related to pain and JIA were searched in English without date restrictions across various databases (PubMed, CINAHL, PsycINFO, Embase, Scopus, and the Cochrane Central Register of Controlled Trials) in September 2021. Two independent reviewers identified, extracted data from, and critically appraised the included studies. Conflicts were resolved via consensus., Results: Of the 9,929 unique studies identified, 61 were included in this review and reported on 516 associations. Results were heterogeneous, likely due to methodological differences and moderate study quality. Results identified predominantly significant associations between pain and primary and secondary appraisals (e.g., more child pain beliefs, lower parent/child self-efficacy, lower child social functioning), parent/child internalizing symptoms, and lower child well-being and health-related quality of life. Prognostically, studies had 1-to-60-month follow-up periods. Fewer beliefs of harm, disability, and no control were associated with lower pain at follow-up, whereas internalizing symptoms and lower well-being were predictive of higher pain at follow-up (bidirectional relationships were also identified)., Conclusions: Despite the heterogeneous results, this review highlights important associations between psychosocial factors and JIA pain. Clinically, this information supports an interdisciplinary approach to pain management, informs the role of psychosocial supports, and provides information to better optimize JIA pain assessments and interventions. It also identifies a need for high quality studies with larger samples and more complex and longitudinal analyses to understand factors that impact the pain experience in children with JIA., Trial Registration: PROSPERO CRD42021266716., (© 2023. The Author(s).)

Introduction: Geriatric assessment (GA) provides information on key health domains of older adults and is recommended to help inform cancer treatment decisions and cancer care. However, GA is not feasible in many health institutions due to lack of geriatric staff and/or resources. To increase accessibility to GA and improve treatment decision making for older adults with cancer (≥65 years), we developed a self-reported, electronic geriatric assessment tool: Comprehensive Assessment for My Plan (CHAMP)., Materials and Methods: Older adults with cancer were invited to join user-centered design sessions to develop the layout and content of the tool. Subsequently, they participated in usability testing to test the usability of the tool (ease of use, acceptability, etc.). Design sessions were also conducted with oncology clinicians (oncologists and nurses) to develop the tool's clinician interface. GA assessment questions and GA recommendations were guided by a systematic review and Delphi expert panel., Results: A total of seventeen older adults participated in the study. Participants were mainly males (82.4%) and 75% were aged 75 years and older. Nine oncology clinicians participated in design sessions. Older adults and clinicians agreed that the tool was user-friendly. Domains in the final CHAMP tool (with questions and recommendations) included functional status, falls risk, cognitive impairment, nutrition, medication review, social supports, depression, substance use disorder, and miscellaneous items., Discussion: CHAMP was designed for use by older adults and oncologists and may enhance access to GA for older adults with cancer. The next phase of the CHAMP study will involve field validation in oncology clinics., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Objective: Children with juvenile idiopathic arthritis (JIA) are faced with a complex medical journey requiring consistent adherence to treatments to achieve disease management. Parents are intimately involved in JIA treatments; however, little is known about their experiences in this role. This is relevant as many treatments necessitate procedural pain (e.g., self-injections) or side effects (e.g., nausea), which may impact a parents' ability to follow treatment plans. The objective of this study was to explore the lived experiences of parents who identified challenges with their child's JIA treatments., Methods: Parents of children with JIA who identified challenges with their child's treatments were invited to take part in semistructured interviews. Data were analyzed using interpretative phenomenological analysis., Results: Ten mothers of children with JIA (60% female with a mean age of 11.83 years [range 4-16 years]) participated. Four superordinate themes were present in mothers' experiences: 1) treatments altered mothers' roles within the family, increasing their caregiver burden and advocacy; 2) treatments positively and negatively impacted their relationships (e.g., increased support from others, decreased time with others); 3) treatments elicited various emotional responses (e.g., frustration, grief), which affected their well-being; and 4) treatments were at times a source of internal conflict, affecting mothers' actions and adherence., Conclusion: Mothers' experiences with their child's JIA treatments affects them in various ways that can subsequently impact treatment adherence. Results highlight the value of supporting parents through these complex treatment regimens and incorporating their experiences in treatment decisions to help promote optimal outcomes for children with JIA and their families., (© 2021 American College of Rheumatology.)

Purpose: Project Extension for Community Healthcare Outcomes (ECHO) is a hub-and-spoke tele-education model that aims to increase health care providers' access to evidence-based guidelines and enhance their capacity to care for complex patients in rural, remote, and underserved communities. The purpose of this scoping review was to examine evidence of the impact of Project ECHO programs on patient and community health outcomes., Method: The authors used Arksey and O'Malley's framework and subsequent revisions proposed by Levac and colleagues to guide their review. They searched MEDLINE, EMBASE, CINAHL Plus, and Web of Science for English-language, peer-reviewed articles published between January 2003 and June 2020. Included studies focused on Project ECHO programs and reported either patient or community health outcomes. The authors used a standardized data extraction form to document bibliographical information and study characteristics, including health outcome level(s), as articulated by Moore's evaluation framework for continuing medical education., Results: Of the 597 search results, the authors identified 15 studies describing Project ECHO programs. These programs were implemented in the United States and Australia and facilitated education sessions with health care providers caring for adult patients living with 1 of 7 medical conditions. Included study findings suggest Project ECHO programs significantly changed patient-level outcomes (n = 15) and to a lesser extent changed community-level outcomes (n = 1). Changes in care were observed at the individual patient level, at the practice level, and in objective clinical measures, including sustained virologic response and HbA1c., Conclusions: This review identified emerging evidence of the effectiveness of Project ECHO as a tele-education model that improves patient health outcomes and has the potential to positively impact community health. The small number of included studies suggests that additional evidence of patient- and community-level impact is required to support the continued adoption and implementation of this model., (Copyright © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Association of American Medical Colleges.)

Objective: Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1., Design: We conducted a series of online, audio-recorded focus groups that were then thematically analysed., Setting: Online focus groups with adults currently residing in the USA., Participants: Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups)., Results: Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another's experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals., Conclusions: Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users' specific needs., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Abstract: Cancer and its treatment can have lasting consequences on somatosensation, including pain, which is often underrecognized and undertreated. Research characterizing the impact of cancer on pain and sensory processing in survivors of childhood cancer is scarce. This study aimed to quantify generalized differences in pain and sensory processing in survivors of childhood cancer compared with reference data using a standardized thermal and mechanical quantitative sensory testing (QST) protocol. The association between demographic, clinical (eg, leukemia vs other cancers and treatment exposures), and psychosocial (eg, anxiety and pain catastrophizing) variables and sensitivity to pain and sensory stimuli were also evaluated. Participants were 56 survivors of various types of childhood cancer (52% male, Mage = 13.5 years, SD = 3.2, range = 8-17 years). On average, children were 7 years (SD = 4.1, range = 1.2-16.5) post treatment. Almost all participants (86%) had at least 1 abnormal QST parameter compared with age- and sex-matched reference data; however, few participants self-reported the presence of sensory abnormalities. Generally, participants exhibited reduced sensitivity across the QST parameters examined (Ps < 0.05, ds = 0.40-3.45). A significant minority (45%) also exhibited pain sensitization (P <0.001, d = 0.42). Several risk factors for changes in sensory processing were identified, including current age, history of leukemia, certain treatment exposures (eg, vincristine cumulative dose, major surgery, and bone marrow or stem cell transplant), time off treatment, and higher anxiety and pain catastrophizing scores. Overall, this study demonstrated that somatosensory changes are prevalent in survivors of childhood cancer years after the completion of treatment. Future research is needed to understand long-term implications of altered somatosensation in this complex population., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the International Association for the Study of Pain.)

Objectives: Chronic pain and mental illness in youth and parents are poised to reach new heights amidst the societal and healthcare impacts of the COVID-19 pandemic. Evidence from natural disasters (i.e., hurricanes) suggests that a degree of personal impact and individual personality may moderate the effects of high stress events, such as the COVID-19 pandemic, on mental health., Methods: In a pre-existing cohort of 84 youth with chronic pain ( M age = 14.39; 12-18 years; 67.8% female) and 90 parents (86.7% female), we examined changes in youth pain interference and youth and parent mental health (depression, anxiety) from before to during the first wave of the COVID-19 pandemic, and the influence of personal impact of the pandemic (i.e., financial, familial, health, social, occupational, and educational domains) and individual personality (neuroticism, conscientiousness, extroversion)., Results: Overall, youth reported significantly lower pain interference and anxiety as compared to pre-pandemic; however, those more personally impacted by the pandemic reported worsening pain interference and anxiety symptoms. Overall, parents reported greater depressive symptoms as compared to pre-pandemic; however, those more personally impacted by the pandemic reported increased anxiety symptoms. Personality traits (high neuroticism, and low conscientiousness and extroversion) predicted worsened pain and mental health, and exacerbated effects of COVID-19-related personal impact on youth and parent anxiety symptoms., Discussion: Identifying risk and resilience profiles in youth and parents at high risk for worsening pain and mental health may better inform matching interventions to individual need.

Objective: Since 2010, the rheumatology community has developed guidelines and tools to improve healthcare transition. In this study, we aimed to compare current transition practices and beliefs among Childhood Arthritis and Rheumatology Research Alliance (CARRA) rheumatology providers with transition practices from a provider survey published in 2010., Methods: In 2018, CARRA members completed a 25-item online survey about healthcare transition. Got Transition's Current Assessment of Health Care Transition Activities was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate analyses were used to compare 2010 and 2018 survey findings., Results: Over half of CARRA members completed the survey (202/396), including pediatric rheumatologists, adult- and pediatric-trained rheumatologists, pediatric rheumatology fellows, and advanced practice providers. The most common target age to begin transition planning was 15-17 years (49%). Most providers transferred patients prior to age 21 years (75%). Few providers used the American College of Rheumatology transition tools (31%) or have a dedicated transition clinic (23%). Only 17% had a transition policy in place, and 63% did not consistently address healthcare transition with patients. When compared to the 2010 survey, improvement was noted in 3 of 12 transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and pediatric staff transition knowledge and skills ( P < 0.001 for each). Nevertheless, the mean current assessment score was < 2 for each measurement., Conclusion: This study demonstrates improvement in certain transition barriers and practices since 2010, although implementation of structured transition processes remains inconsistent., (© 2021 by the Journal of Rheumatology.)

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., (©Deirdre E Logan, Laura E Simons, Thomas J Caruso, Jeffrey I Gold, Walter Greenleaf, Anya Griffin, Christopher D King, Maria Menendez, Vanessa A Olbrecht, Samuel Rodriguez, Megan Silvia, Jennifer N Stinson, Ellen Wang, Sara E Williams, Luke Wilson. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 26.04.2021.)

Objective: Juvenile-onset fibromyalgia (JFM) is a chronic debilitating pain condition that negatively impacts physical, social and academic functioning. Cognitive-behavioral therapy (CBT) is beneficial in reducing functional disability among adolescents with JFM but has only a modest impact on pain reduction and does not improve physical exercise participation. This randomized controlled trial (RCT) aims to test whether a novel intervention that combines CBT with specialized neuromuscular exercise training (the Fibromyalgia Integrative Training program for Teens "FIT Teens") is superior to CBT alone or a graded aerobic exercise (GAE) program., Design/methods: This 3-arm multi-site RCT will examine the efficacy of the FIT Teens intervention in reducing functional disability (primary outcome) and pain intensity (secondary outcome), relative to CBT or GAE. All interventions are 8-weeks (16 sessions) in duration and are delivered in small groups of 4-6 adolescents with JFM. A total of 420 participants are anticipated to be enrolled across seven sites with approximately equal allocation to each treatment arm. Functional disability and average pain intensity in the past week will be assessed at baseline, post-treatment and at 3-, 6-, 9- and 12-month follow-up. The 3-month follow-up is the primary endpoint to evaluate treatment efficacy; longitudinal assessments will determine maintenance of treatment gains. Changes in coping, fear of movement, biomechanical changes and physical fitness will also be evaluated., Conclusions: This multi-site RCT is designed to evaluate whether the combined FIT Teens intervention will have significantly greater effects on disability and pain reduction than CBT or GAE alone for youth with JFM. Clinical trials.gov registration: NCT03268421., (Copyright © 2021 Elsevier Inc. All rights reserved.)

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., (© The Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objectives: Health care providers (HCPs) require ongoing support to meet the evolving care needs of children with medical complexity (CMC). Project Extension for Community Healthcare Outcomes (ECHO) is a model for delivering technology-enabled medical education and cultivating a community of practice. In this study, we focused on developing, implementing, and evaluating the first ECHO program dedicated to the care of CMC. Specific objectives were to evaluate the program feasibility (participation and acceptability) and impact on perceived HCP knowledge, self-efficacy, and clinical practice after 6 months., Methods: A needs assessment was conducted to inform an interprofessional CMC curriculum. This curriculum was delivered through monthly virtual TeleECHO clinics (didactic and case-based learning) from January 2018 to 2020. The program was available at no cost to HCPs throughout Ontario. Surveys were distributed at baseline and 6 months to assess program acceptability, knowledge, self-efficacy, and practice impact by using 7-point Likert scales. Descriptive and inferential data analyses were conducted., Results: Twenty-four clinics were completed with a mean of 19 ± 6 attendees. Acceptability scores ( n = 27) ranged from 5.0 ± 1.1 to 6.4 ± 0.6. Participants reported an improvement in their knowledge and self-efficacy across all probed topics and skills ( P values ranged from <.001 to .006). These knowledge and self-efficacy scores related to "complex care support," "feeding support," and "respiratory support." The majority of participants reported positive or very positive practice impacts, including enhanced ability to provide quality care to CMC., Conclusions: Project ECHO is a feasible and acceptable model for virtual education of interprofessional HCPs in managing CMC. This program has the potential to increase system capacity to provide quality care to CMC close to home., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Background: The objective of this study was to evaluate the psychometric properties of the 17-item Tampa Scale for Kinesiophobia (TSK) in youth., Methods: Participants were 264 children and adolescents (58.7% female, M age  = 14.1 years, SD age  = 2.51) scheduled for major surgery who were assessed before surgery, while in hospital postoperatively, and at 6 and 12 months after surgery. Exploratory factor analyses (EFA) were conducted to determine the factor structure of pre-operative TSK scores. Reliability, and convergent, discriminant, and predictive validity were examined., Results: EFA on the 17-item TSK revealed a two-factor model distinguishing the 13 positively scored items from the 4 reverse scored items, but the fit was poor. A second EFA was conducted on the 13 positively scored items (TSK-13) revealing a three-factor model: Fear of injury, bodily vulnerability, and activity avoidance. The TSK-13 showed adequate internal consistency (Ω = 0.82) and weak convergent validity. The TSK-13 was not correlated with postoperative, in-hospital physical activity (actigraphy; r (179) = -0.10, p = 0.18) and showed adequate discriminant validity, that is correlations less than 0.70, with measures of depression (r (225) = 0.41, p < 0.001) and general anxiety (r (224)=0.35, p < 0.001). Predictive validity for pain-related disability at 12 months (r (70) = 0.34, p < 0.001) was adequate., Conclusions: The original TSK-17 does not appear to be a meaningful measure of kinesiophobia in youth after surgery possibly because of the syntactic structure of the reverse scored items. In contrast, a modified TSK-13, comprised of only the positively scored items, revealed a 3-factor structure that is reliable and demonstrates adequate convergent, discriminant, and predictive validity., Significance: Kinesiophobia is an important construct to evaluate in the transition from acute to chronic pain among children and adolescents. The 17 item Tampa Scale for Kinesiophobia (TSK) does not show adequate validity or reliability in youth undergoing major surgery, however, the psychometric properties of a 13-item modified scale (TSK-13) are promising., (© 2020 European Pain Federation - EFIC®.)

Purpose: Approximately 40% of childhood cancer survivors experience chronic pain, with many also reporting pain-related disability. Given associations established in the general population among respiration, anxiety, and pain, continuous tracking and feedback of respiration may help survivors manage pain., Methods: A feasibility, nonblinded, randomized controlled trial (RCT) comparing wearable respiratory monitoring with a control group examined feasibility, acceptability, and preliminary efficacy among survivors of childhood cancer with chronic pain who were ≥ 18 years of age, able to speak and read English, lived in the United States, and had access to a smartphone and the Internet. The primary outcomes were pain interference, pain severity, anxiety, negative affect, and perceived stress. The intervention group (n = 32) received a wearable respiratory monitor, used the device, and completed an in-application breathing exercise daily for 30 days. The control group (n = 33) received psychoeducation after completion of the study., Results: Almost all participants in the intervention group (n = 31 of 32) and control group (n = 32 of 33) completed the study. Of those who completed the intervention, 90.3% wore the device for ≥ 50% of the trial. Posttreatment improvement for negative affect (Cohen d = 0.59; 95% CI, 0.09 to 1.10) was significantly greater in the intervention group compared with the control group. A follow-up study (n = 24) examined acceptability and feasibility of a second-generation device among those who completed the RCT. Most survivors (81.0%) wore the device daily during the trial and 85.7% reported satisfaction with the device and the application., Conclusion: The results of this pilot study support the acceptability and feasibility of wearable respiratory monitoring among survivors of childhood cancer. Larger randomized trials are needed to assess efficacy and maintenance of this intervention for chronic pain.

Background: Carbohydrate counting is an important component of diabetes management, but it is challenging, often performed inaccurately, and can be a barrier to optimal diabetes management. iSpy is a novel mobile app that leverages machine learning to allow food identification through images and that was designed to assist youth with type 1 diabetes in counting carbohydrates., Objective: Our objective was to test the app's usability and potential impact on carbohydrate counting accuracy., Methods: Iterative usability testing (3 cycles) was conducted involving a total of 16 individuals aged 8.5-17.0 years with type 1 diabetes. Participants were provided a mobile device and asked to complete tasks using iSpy app features while thinking aloud. Errors were noted, acceptability was assessed, and refinement and retesting were performed across cycles. Subsequently, iSpy was evaluated in a pilot randomized controlled trial with 22 iSpy users and 22 usual care controls aged 10-17 years. Primary outcome was change in carbohydrate counting ability over 3 months. Secondary outcomes included levels of engagement and acceptability. Change in HbA 1c level was also assessed., Results: Use of iSpy was associated with improved carbohydrate counting accuracy (total grams per meal, P=.008), reduced frequency of individual counting errors greater than 10 g (P=.047), and lower HbA 1c levels (P=.03). Qualitative interviews and acceptability scale scores were positive. No major technical challenges were identified. Moreover, 43% (9/21) of iSpy participants were still engaged, with usage at least once every 2 weeks, at the end of the study., Conclusions: Our results provide evidence of efficacy and high acceptability of a novel carbohydrate counting app, supporting the advancement of digital health apps for diabetes care among youth with type 1 diabetes. Further testing is needed, but iSpy may be a useful adjunct to traditional diabetes management., Trial Registration: ClinicalTrials.gov NCT04354142; https://clinicaltrials.gov/ct2/show/NCT04354142., (©Jeffrey E Alfonsi, Elizabeth E Y Choi, Taha Arshad, Stacie-Ann S Sammott, Vanita Pais, Cynthia Nguyen, Bryan R Maguire, Jennifer N Stinson, Mark R Palmert. Originally published in JMIR mHealth and uHealth (http://mhealth.jmir.org), 28.10.2020.)

Background: Juvenile idiopathic arthritis (JIA) is a serious and potentially debilitating pediatric illness. Improved disease self-management may help to improve health outcomes., Objective: This study aimed to evaluate the effectiveness of the Teens Taking Charge Web-based self-management intervention in reducing symptoms and improving health-related quality of life (HRQL) in adolescents with JIA compared with a Web-based education control condition., Methods: Adolescents with JIA aged 12 to 18 years were recruited from 11 Canadian pediatric rheumatology centers. Caregivers were invited to participate along with their child. In addition to standard medical care, participants were randomized to receive either (1) the Teens Taking Charge self-management intervention or (2) a Web-based education control condition for a period of 12 weeks. Adolescents in the intervention group completed website modules addressing cognitive behavioral coping skills, stress management, and other self-management topics, while also receiving monthly telephone calls from a trained health coach. Adolescents in the education control group were instructed to view a series of preselected public JIA educational websites and received monthly calls from a coach who asked about their own best efforts at managing JIA. Caregivers in the intervention group completed website modules related to promoting independence and disease self-management in their child. Caregivers in the education control group were instructed to view a series of preselected public JIA educational websites. Outcome assessment occurred at baseline, 12 weeks (posttreatment), and at 6 and 12 months postrandomization. The primary outcomes were pain intensity, pain interference, and HRQL. Secondary outcomes were emotional symptoms, adherence, coping, knowledge, and self-efficacy., Results: In total, 333 adolescents and 306 caregivers were enrolled. Significant overall reductions in pain intensity (P=.02) and pain interference (P=.007) were observed for intervention group participants compared with those in the education control group, after adjusting for baseline levels. There was a significant overall improvement in HRQL related to problems with pain (P=.02) and problems with daily activities (P=.01). There was also a significant difference in the intervention group over time (P=.008) for HRQL related to treatment problems, with the intervention group participants demonstrating improved HRQL by 12 months compared with education control group participants. Both groups showed nonsignificant improvements compared with baseline in other primary outcomes. There were no significant differences between the groups in any secondary outcomes or caregiver-reported outcomes., Conclusions: The results of this randomized trial suggest that the Teens Taking Charge Web-based intervention is effective at reducing both pain intensity and pain interference, as well as improving HRQL in adolescents with JIA, compared with education control. These effects are sustained for up to 12 months following program completion. The Teens Taking Charge program is now publicly available at no cost., Trial Registration: ClinicalTrials.gov NCT01572896; https://clinicaltrials.gov/ct2/show/NCT01572896., (©Jennifer N Stinson, Chitra Lalloo, Amos S Hundert, Sarah Campillo, Tania Cellucci, Paul Dancey, Ciaran Duffy, Janet Ellsworth, Brian M Feldman, Adam M Huber, Nicole Johnson, Geert't Jong, Kiem Oen, Alan M Rosenberg, Natalie J Shiff, Lynn Spiegel, Shirley M L Tse, Lori Tucker, Joseph Charles Victor. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.07.2020.)

The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates patient partners throughout its governance and operations meaning that patient partners may contribute to research projects in ways that warrant scientific authorship as defined by the International Committee of Medical Journal Editors. The Network did a brief informal review of guidance on patient authorship in 2019, but could not find any practical documentation to guide its members on this topic. Note the term patient partner here refers to a patient (or caregiver or other person with lived experience) who is a partner or collaborator on a research team. This guidance does not address patients as participants in a research study. This guidance has been co-written by a group of researchers and patient partners of the Chronic Pain Network in an effort to address this gap. It is intended for both researchers and patient partner audiences. This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided. Teams that carry out patient-oriented research projects will require different preparation to empower all team members (researchers and patient partners) to discuss authorship and acknowledgement. To facilitate these conversations, we have included an overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship. Conversations about authorship can be difficult, even for established research teams. This guidance, and the resources discussed within it, are provided with the intention of making these conversations easier and more thoughtful., Competing Interests: Competing interestsDPR is a full-time employee of Five02 Labs, Inc., and is under contract to the Chronic Pain Network to help support its patient engagement efforts. All other authors declare that they have no competing interests., (© The Author(s) 2020.)

Background : Reviews in pediatric chronic pain often focus on only one intervention or population, making it difficult for policymakers and decision makers to quickly synthesize knowledge to inform larger-scale policy and funding priorities. Aims : The aims of this study were to (1) create an evidence and gap map of interventions for pediatric chronic pain and (2) identify gaps between existing evidence and recently identified patient-oriented research priorities. Methods : We performed a systematic review of English-language peer-reviewed systematic reviews or clinical practice guidelines of pediatric chronic pain intervention published in the past 20 years. Database searches of Medline, Embase, PsycINFO, Web of Science, CINAHL, and SCOPUS were conducted inclusive to June 3, 2019. Review quality was assessed using the AMSTAR-2. Results : Of 4168 unique abstracts, 50 systematic reviews (including 2 clinical practice guidelines) crossing diverse pediatric chronic pain populations and intervention settings were included. One third were rated high quality, with half rated low to critically low quality. The largest proportion of reviews addressed psychological and pharmacological interventions, followed by interdisciplinary, other (e.g., dietary), and physical interventions. Most common outcomes included pain, physical, emotional, and role functioning and quality of life. Treatment satisfaction and adverse events were less common, with minimal report of sleep or economic factors. Most patient-oriented research priorities had not been investigated. Conclusions : Sufficient quality evidence is available to guide evidence-informed policies in pediatric chronic pain, most notably regarding psychological and pharmacological interventions. Numerous evidence gaps in patient-oriented research priorities and treatment outcomes should guide prioritization of research funds, as well as study aims and design., Competing Interests: Kathryn A. Birnie does not have any conflicts of interest. Carley Ouellette does not have any conflicts of interest. Tamara Do Amaral does not have any conflicts of interest. Jennifer N. Stinson does not have any conflicts of interest., (© 2020 The Author(s). Published with license by Taylor & Francis Group, LLC.)

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., (©Lindsay A Jibb, James S Khan, Puneet Seth, Chitra Lalloo, Lauren Mulrooney, Kathryn Nicholson, Dominik A Nowak, Harneel Kaur, Alyssandra Chee-A-Tow, Joel Foster, Jennifer N Stinson. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 16.06.2020.)

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., (©Helen Slater, Jennifer N Stinson, Joanne E Jordan, Jason Chua, Ben Low, Chitra Lalloo, Quynh Pham, Joseph A Cafazzo, Andrew M Briggs. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 05.06.2020.)

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., (© 2019 The Authors. Pediatric Transplantation published by Wiley Periodicals, Inc.)

Twitter has the potential to optimize research conduct, but more research is needed around the nature of study-related tweets and strategies for optimizing reach. In the context of our caregiving study, we aimed to describe the nature and extent of study-related tweets, the extent to which they were shared by others, and their potential reach. To do so, we conducted a secondary analysis of our Twitter recruitment. We aggregated and categorized study-related tweets and analyzed the reach of the 10 most retweeted tweets. Results indicated that of 71 caregivers, 27 were recruited via Twitter. General recruitment tweets were most-shared by users. Tweet reach ranged from 5273 to 62,144 users. Twitter caregivers were demographically comparable to non-Twitter caregivers but had higher Internet proficiency and fewer children. Overall, using a personal Twitter account can expand the reach of study recruitment. Future research should compare different recruitment strategies and explore characteristics that may challenge the heterogeneity of Twitter samples.

Background: Chronic postsurgical pain (CPSP) is a surgical complication associated with increased functional disability, psychological distress, and economic costs. The aims of this paper were to prospectively: (1) examine the incidence of CPSP 6 and 12 months after pediatric major surgery; (2) identify pain intensity and pain unpleasantness trajectories before, and up to 12 months after, surgery; (3) identify pre-operative factors that predict pain trajectory group membership; and (4) identify predictors of 12-month functional disability., Methods: This study followed 265 children aged 8-17 years at four time points (pre-surgical [T0], in-hospital [T1], 6 [T2] and 12 [T3] months after surgery). Children and parents completed pain and psychological questionnaires. In-hospital physical activity was monitored using actigraphy., Results and Discussion: The incidence of moderate-to-severe CPSP at 6 and 12 months was 35% (95% CI 29.1% to 41.9%) and 38% (95% CI 32.4% to 45.1%), respectively. Three percent (95% CI 1.17% to 6.23%) and 4% (95% CI 1.45% to 6.55%) of children reported using opioids to manage pain at 6 and 12 months, respectively. Growth mixture modeling revealed a two-class trajectory model with a quadratic slope best fit the data for both pain intensity (Bayesian information criterion [BIC] = 3977.03) and pain unpleasantness (BIC = 3644.45) over the 12 months. Preoperative functional disability and cumulative in-hospital opioid consumption predicted pain intensity trajectories. Preoperative functional disability predicted pain unpleasantness trajectories. Preoperative functional disability (OR: 1.05, 95% CI: 1.01 to 1.09) and pain unpleasantness trajectories (OR: 2.59, 95% CI: 1.05 to 6.37) predicted 12-month moderate-to-severe functional disability., Conclusion: Pre-surgical functional disability is the only factor that predicts both 12-month functional disability and the course of pain intensity and pain unpleasantness ratings over the 12-month period., Competing Interests: Joel Katz is supported by the CIHR Canada Research Chair in Health Psychology at York University. Brittany Rosenbloom is supported by a CIHR Canada Graduate Scholarship (CGS) Doctoral Award in Honor of Nelson Mandala. M Gabrielle Pagé was supported by a CIHR Frederick Banting and Charles Best CGS Doctoral Award. The authors report no other conflicts of interest in this work., (© 2019 Rosenbloom et al.)

Background: The widespread adoption of digital health interventions for chronic disease self-management has catalyzed a paradigm shift in the selection of methodologies used to evidence them. Recently, the application of digital health research analytics has emerged as an efficient approach to evaluate these data-rich interventions. However, there is a growing mismatch between the promising evidence base emerging from analytics mediated trials and the complexity of introducing these novel research methods into evaluative practice., Objective: This study aimed to generate transferable insights into the process of implementing research analytics to evaluate digital health interventions. We sought to answer the following two research questions: (1) how should the service of research analytics be designed to optimize digital health evidence generation? and (2) what are the challenges and opportunities to scale, spread, and sustain this service in evaluative practice?, Methods: We conducted a qualitative multilevel embedded single case study of implementing research analytics in evaluative practice that comprised a review of the policy and regulatory climate in Ontario (macro level), a field study of introducing a digital health analytics platform into evaluative practice (meso level), and interviews with digital health innovators on their perceptions of analytics and evaluation (microlevel)., Results: The practice of research analytics is an efficient and effective means of supporting digital health evidence generation. The introduction of a research analytics platform to evaluate effective engagement with digital health interventions into a busy research lab was ultimately accepted by research staff, became routinized in their evaluative practice, and optimized their existing mechanisms of log data analysis and interpretation. The capacity for research analytics to optimize digital health evaluations is highest when there is (1) a collaborative working relationship between research client and analytics service provider, (2) a data-driven research agenda, (3) a robust data infrastructure with clear documentation of analytic tags, (4) in-house software development expertise, and (5) a collective tolerance for methodological change., Conclusions: Scientific methods and practices that can facilitate the agile trials needed to iterate and improve digital health interventions warrant continued implementation. The service of research analytics may help to accelerate the pace of digital health evidence generation and build a data-rich research infrastructure that enables continuous learning and evaluation., (©Quynh Pham, James Shaw, Plinio P Morita, Emily Seto, Jennifer N Stinson, Joseph A Cafazzo. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 11.11.2019.)

Objective: Given the high levels of pain and low rates of treatment adherence in children with juvenile idiopathic arthritis (JIA) and their families, this study sought to examine the relationship between parent pain cognitions (i.e., pain catastrophizing, fear of pain) and treatment adherence, and how barriers to treatment (e.g., forgetting treatments, children resisting injections) may be implicated in this relationship., Methods: Parents of children under 18 years of age who have been diagnosed with JIA were recruited to complete an online survey. In total, 221 parents (93% mothers) of children aged 2-17 years (M = 11.10, SD = 4.25) took part, completing questions regarding their pain cognitions, perceived barriers to treatment, and their child's arthritis treatment adherence ability., Results: Hierarchical regressions demonstrated that both pain cognitions (i.e., pain catastrophizing and fear of pain) were related to a decrease in parent-reported treatment adherence, however, pain catastrophizing was no longer significant when fear of pain was added to the model. The presence of treatment barriers partially mediated the relationship between fear of pain and treatment adherence, above and beyond the alternate model proposed., Conclusion: These results suggest that parent pain catastrophizing and fears of pain are related to a greater difficulty following treatment plans, possibly in part because of barriers parents experience that preclude adherence. Given these findings, the identification and management of parent pain cognitions is critical to improving treatment adherence and outcomes for children with JIA and their families., (© The Author(s) 2019. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Introduction: Inadequate knowledge and training of healthcare providers are obstacles to effective chronic pain management. ECHO (extension for community healthcare outcomes) uses case-based learning and videoconferencing to connect specialists with providers in underserved areas. ECHO aims to increase capacity in managing complex cases in areas with poor access to specialists., Methods: A pre-post study was conducted to evaluate the impact of ECHO on healthcare providers' self-efficacy, knowledge and satisfaction. Type of profession, presenting a case, and number of sessions attended were examined as potential factors that may influence the outcomes., Results: From June 2014 to March 2017, 296 primary care healthcare providers attended ECHO, 264 were eligible for the study, 170 (64%) completed the pre-ECHO questionnaire and 119 completed post-ECHO questionnaires. Participants were physicians (34%), nurse practitioners (21%), pharmacists (13%) and allied health professionals (32%). Participants attended a mean of 15 ± 9.19 sessions. There was a significant increase in self-efficacy ( p  < 0.0001) and knowledge ( p  < 0.0001). Self-efficacy improvement was significantly higher among physicians, physician assistants and nurse practitioners than the non-prescribers group ( p  = 0.03). On average, 96% of participants were satisfied with ECHO. Satisfaction was higher among those who presented cases and attended more sessions., Discussion: This study shows that ECHO improved providers' self-efficacy and knowledge. We evaluated outcomes from a multidisciplinary group of providers practicing in Ontario. This diversity supports the generalisability of our findings. Therefore, we suggest that this project may be used as a template for creating other educational programs on other medical topics.

Objective: Today, more than 80% of children diagnosed with cancer are expected to survive. Despite the high prevalence of pain associated with the diagnosis and treatment of childhood cancer, there is a limited understanding of how having cancer shapes children's experience and meaning of pain after treatment has ended. This study addresses this gap by exploring childhood cancer survivors' (CCS') experiences of pain from their perspective and the perspective of their parents., Methods: Twenty semi-structured interviews were completed with CCS (50% female; mean age = 13.20 y, range = 8-17 y) and their parents (90% mothers). Data were analyzed using interpretive phenomenological analysis., Results: Analyses revealed three superordinate themes present in the data: (a) pain is a changed experience after childhood cancer; (b) new or ambiguous pains may be interpreted by CCS and parents as a threat of disease recurrence, late effects, or a secondary cancer; and (c) pain interpretation occurs within the broader context of how CCS and parents appraise their cancer experience. Parents generally appraised their child's cancer and pain as more threatening and were influential in guiding their child's interpretations., Conclusions: The cancer experience played an important role in shaping CCS' and their parents' experience and interpretation of pain in survivorship. This study provides novel data to inform the development and refinement of new and existing conceptual models of pain and symptom perception after cancer. The results also point to key areas for future investigation and clinical intervention to address the issue of pain in cancer survivorship., (© 2019 John Wiley & Sons, Ltd.)

Background: Juvenile Dermatomyositis is a rare, potentially life-threatening condition with no known cure. There is no published literature capturing how children and young people feel about their condition, from their perspective. This study was therefore unique in that it asked children and young people what is it like to live with Juvenile Dermatomyositis., Methods: Data were obtained from fifteen young people with Juvenile Dermatomyositis, between eight and nineteen years of age from one Paediatric Rheumatology department using audio-recorded interpretive phenomenology interviews. Data were analyzed phenomenologically, using a process that derives narratives from transcripts resulting in a collective composite of participants shared experiences, called a 'phenomenon'., Results: The overarching metaphor of a rollercoaster captures the phenomenon of living with Juvenile Dermatomyositis as a young person, with the ups and downs at different time points clearly described by those interviewed. The five themes plotted on the rollercoaster, began with confusion; followed by feeling different, being sick, steroidal and scared from the medications; uncertainty; and then ended with acceptance of the disease over time., Conclusion: Young people were able to talk about their experiences about having Juvenile Dermatomyositis. Our findings will aid clinicians in their practice by gaining a deeper understanding of what daily life is like and highlighting ways to enhance psychosocial functioning. Hopefully, this study and any further resulting studies, will raise understanding of Juvenile Dermatomyositis worldwide and will encourage health care professionals to better assess psychosocial needs in the future.

Background : The 2018 Global Year for Excellence in Pain Education, an initiative of the International Association for the Study of Pain, brought worldwide attention to the need for education that crosses narrow disciplinary boundaries, addresses up-to-date research methods and findings, and encourages teamwork among trainees and mentors at different levels of training and with different perspectives. Aims : This commentary describes the development of Pain in Child Health (PICH), an interdisciplinary training program for researchers in pediatric pain at the undergraduate, graduate, and postdoctoral levels of training. Methods : Based on documentation of the structure, training processes, leadership, and membership of PICH, we outline its organization and its challenges and accomplishments over the first 12 years of its growth into a well-known international program. Results and Conclusions : Pain in Child Health began as a Strategic Training Initiative of the Canadian Institutes of Health Research in 2002 and developed into an international research training consortium featuring cross-site and cross-discipline mentorship and collaboration. PICH trainees and alumni have contributed extensively to the current scientific literature on children's pain. PICH could serve as a possible model for training and mentorship in other specialized health research domains within and outside thestudy of pain., Competing Interests: No potential conflict of interest was reported by the authors., (© 2019 The Author(s). Published with license by Taylor & Francis Group, LLC.)

Background: Pain in children and adolescents with cancer has been identified as an area where many healthcare professionals seek guidance. This protocol details a systematic review whose aim is to explore current knowledge regarding measurement instruments to assess pain (and pain-related distress) in children and adolescents with cancer. After completion of the review, the information will be used in the development of a clinical practice guideline., Methods: We will search four electronic databases (MEDLINE via PubMed, CINAHL, PsycINFO and HaPI). Additional relevant studies will be identified by reference checking and expert consultation. All citations will be screened independently by two reviewers in a three-step approach: first selection based on title, second selection based on abstract, third selection based on full-text. Studies in children and adolescents with cancer that aimed to evaluate the clinimetric properties of an existing pain measurement instrument or to develop a new pain measurement instrument and that include at least one relevant outcome (reliability, validity, responsiveness, interpretability, clinical utility) are eligible for inclusion. For all steps of evidence selection, a detailed list with eligibility criteria will be determined a priori. Data extraction and quality assessment of included studies (according to the COnsensus-based Standards for the selection of health Measurement INstruments, COSMIN criteria) will be conducted independently by two authors., Discussion: This systematic review will provide an overview of the current literature regarding measurement instruments to assess pain in children and adolescents with cancer. This knowledge synthesis will be used to formulate recommendations for clinical practice. Also, by synthesizing existing evidence, knowledge gaps will be identified., Systematic Review Registration: PROSPERO CRD42017072879.

Background: There is mixed evidence to support current ambitions for mobile health (mHealth) apps to improve chronic health and well-being. One proposed explanation for this variable effect is that users do not engage with apps as intended. The application of analytics, defined as the use of data to generate new insights, is an emerging approach to study and interpret engagement with mHealth interventions., Objective: This study aimed to consolidate how analytic indicators of engagement have previously been applied across clinical and technological contexts, to inform how they might be optimally applied in future evaluations., Methods: We conducted a scoping review to catalog the range of analytic indicators being used in evaluations of consumer mHealth apps for chronic conditions. We categorized studies according to app structure and application of engagement data and calculated descriptive data for each category. Chi-square and Fisher exact tests of independence were applied to calculate differences between coded variables., Results: A total of 41 studies met our inclusion criteria. The average mHealth evaluation included for review was a two-group pretest-posttest randomized controlled trial of a hybrid-structured app for mental health self-management, had 103 participants, lasted 5 months, did not provide access to health care provider services, measured 3 analytic indicators of engagement, segmented users based on engagement data, applied engagement data for descriptive analyses, and did not report on attrition. Across the reviewed studies, engagement was measured using the following 7 analytic indicators: the number of measures recorded (76%, 31/41), the frequency of interactions logged (73%, 30/41), the number of features accessed (49%, 20/41), the number of log-ins or sessions logged (46%, 19/41), the number of modules or lessons started or completed (29%, 12/41), time spent engaging with the app (27%, 11/41), and the number or content of pages accessed (17%, 7/41). Engagement with unstructured apps was mostly measured by the number of features accessed (8/10, P=.04), and engagement with hybrid apps was mostly measured by the number of measures recorded (21/24, P=.03). A total of 24 studies presented, described, or summarized the data generated from applying analytic indicators to measure engagement. The remaining 17 studies used or planned to use these data to infer a relationship between engagement patterns and intended outcomes., Conclusions: Although researchers measured on average 3 indicators in a single study, the majority reported findings descriptively and did not further investigate how engagement with an app contributed to its impact on health and well-being. Researchers are gaining nuanced insights into engagement but are not yet characterizing effective engagement for improved outcomes. Raising the standard of mHealth app efficacy through measuring analytic indicators of engagement may enable greater confidence in the causal impact of apps on improved chronic health and well-being., (©Quynh Pham, Gary Graham, Carme Carrion, Plinio P Morita, Emily Seto, Jennifer N Stinson, Joseph A Cafazzo. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 18.01.2019.)

In 2006, PAIN published a systematic review of the measurement properties of self-report pain intensity measures in children and adolescents (Stinson JN, Kavanagh T, Yamada J, Gill N, Stevens B. Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. PAIN 2006;125:143-57). Key developments in pediatric pain necessitate an update of this work, most notably growing use of the 11-point numeric rating scale (NRS-11). Our aim was to review the measurement properties of single-item self-report pain intensity measures in children 3 to 18 years old. A secondary aim was to develop evidence-based recommendations for measurement of child and adolescent self-report of acute, postoperative, and chronic pain. Methodological quality and sufficiency of measurement properties for reliability, validity, responsiveness, and interpretability was assessed by at least 2 investigators using COnsensus based Standards for the selection of health Measurement INstruments (COSMIN). Searches identified 60 unique self-report measures, of which 8 (reported in 80 papers) met inclusion criteria. Well-established measures included the NRS-11, Color Analogue Scale (CAS), Faces Pain Scale-Revised (FPS-R; and original FPS), Pieces of Hurt, Oucher-Photographic and Numeric scales, Visual Analogue Scale, and Wong-Baker FACES Pain Rating Scale (FACES). Quality of studies ranged from poor to excellent and generally reported sufficient criterion and construct validity, and responsiveness, with variable reliability. Content and cross-cultural validity were minimally assessed. Based on available evidence, the NRS-11, FPS-R, and CAS were strongly recommended for self-report of acute pain. Only weak recommendations could be made for self-report measures for postoperative and chronic pain. No measures were recommended for children younger than 6 years, identifying a need for further measurement refinement in this age range. Clinical practice and future research implications are discussed.

Background: Mobile health (mHealth) apps for pediatric chronic conditions are growing in availability and challenge investigators to conduct rigorous evaluations that keep pace with mHealth innovation. Traditional research methods are poorly suited to operationalize the agile, iterative trials required to evidence and optimize these digitally mediated interventions., Objective: We sought to contribute a resource to support the quantification, analysis, and visualization of analytic indicators of effective engagement with mHealth apps for chronic conditions., Methods: We applied user-centered design methods to design and develop an Analytics Platform to Evaluate Effective Engagement (APEEE) with consumer mHealth apps for chronic conditions and implemented the platform to analyze both retrospective and prospective data generated from a smartphone-based pain self-management app called iCanCope for young people with chronic pain., Results: Through APEEE, we were able to automate the process of defining, operationalizing, and evaluating effective engagement with iCanCope. Configuring the platform to integrate with the app was feasible and provided investigators with a resource to consolidate, analyze, and visualize engagement data generated by participants in real time. Preliminary efforts to evaluate APEEE showed that investigators perceived the platform to be an acceptable evaluative resource and were satisfied with its design, functionality, and performance. Investigators saw potential in APEEE to accelerate and augment evidence generation and expressed enthusiasm for adopting the platform to support their evaluative practice once fully implemented., Conclusions: Dynamic, real-time analytic platforms may provide investigators with a powerful means to characterize the breadth and depth of mHealth app engagement required to achieve intended health outcomes. Successful implementation of APEEE into evaluative practice may contribute to the realization of effective and evidence-based mHealth care., (©Quynh Pham, Gary Graham, Chitra Lalloo, Plinio P Morita, Emily Seto, Jennifer N Stinson, Joseph A Cafazzo. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 21.12.2018.)