A cognitive-behavioral digital health intervention for sickle cell disease pain in adolescents: a randomized, controlled, multicenter trial.

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.

Perspectives of Healthcare Providers to Inform the Design of an AI-Enhanced Social Robot in the Pediatric Emergency Department.

Children commonly experience pain and distress in healthcare settings related to medical procedures such as blood tests and intravenous insertions (IVIs). Inadequately addressed pain and distress can result in both short- and long-term negative consequences. The use of socially assistive robotics (SARs) to reduce procedure-related distress and pain in children's healthcare settings has shown promise; however, the current options lack autonomous adaptability. This study presents a descriptive qualitative needs assessment of healthcare providers (HCPs) in two Canadian pediatric emergency departments (ED) to inform the design an artificial intelligence (AI)-enhanced social robot to be used as a distraction tool in the ED to facilitate IVIs. Semi-structured virtual individual and focus group interviews were conducted with eleven HCPs. Four main themes were identified: (1) common challenges during IVIs (i.e., child distress and resource limitations), (2) available tools for pain and distress management during IVIs (i.e., pharmacological and non-pharmacological), (3) response to SAR appearance and functionality (i.e., personalized emotional support, adaptive distraction based on child's preferences, and positive reinforcement), and (4) anticipated benefits and challenges of SAR in the ED (i.e., ensuring developmentally appropriate interactions and space limitations). HCPs perceive AI-enhanced social robots as a promising tool for distraction during IVIs in the ED.

Exploring the needs of children and caregivers to inform design of an artificial intelligence-enhanced social robot in the pediatric emergency department.

Background & Objective: Socially assistive robots (SARs) are a promising tool to manage children's pain and distress related to medical procedures, but current options lack autonomous adaptability. The aim of this study was to understand children's and caregivers' perceptions surrounding the use of an artificial intelligence (AI)-enhanced SAR to provide personalized procedural support to children during intravenous insertion (IVI) to inform the design of such a system following a user-centric approach. Methods: This study presents a descriptive qualitative needs assessment of children and caregivers. Data were collected via semi-structured individual interviews and focus groups. Participants were recruited from two Canadian pediatric emergency departments (EDs) between April 2021 and January 2022. Results: Eleven caregivers and 19 children completed 27 individual interviews and one focus group. Three main themes were identified: A. Experience in the clinical setting, B. Acceptance of and concerns surrounding SARs, and C. Features that support child engagement with SARs. Most participants expressed comfort with robot technology, however, concerns were raised about sharing personal information, photographing/videotaping, and the possibility of technical failure. Suggestions for feature enhancements included increasing movement to engage a child's attention and tailoring language to developmental age. To enhance the overall ED experience, participants also identified a role for the SAR in the waiting room. Conclusion: Artificial intelligence-enhanced SARs were perceived by children and caregivers as a promising tool for distraction during IVIs and to enhance the overall ED experience. Insights collected will be used to inform the design of an AI-enhanced SAR.

"We survived the pandemic together": The impact of the COVID-19 pandemic on Canadian families living with chronic pain.

Introduction: Pediatric chronic pain is a significant problem in Canada, affecting one in five youth. This study describes the impact of the pandemic on the experiences of Canadian families living with chronic pain through interviews with youth living with chronic pain, parents, and siblings. Methods: Employing a qualitative descriptive design, in-depth semistructured interviews were completed with Canadian youth living with pain, as well as parents and siblings. Participants were not required to be related. Interviews were analyzed using a reflexive thematic analysis approach. Results: Forty-four interviews were completed with 14 parents, 19 youth with chronic pain, and 11 siblings from across the country. Three key themes were developed: (1) absorbing and shifting: the toll of the pandemic on the family system (e.g., loss of coping mechanisms, shifting roles to respond to the pandemic), (2) social ambiguity and abandonment (e.g., social sacrifice and abandonment by the health care system), and (3) building community resilience: familial adaptation to the pandemic (e.g., family cohesion, confidence, and self-management). Discussion/Conclusions: Youth, parents, and siblings reported that the pandemic impacted coping strategies across the family system. These results outline the challenges youth experienced managing their pain and overall health throughout the pandemic and the resilience built within families during this time. Going forward, it would be relevant to examine how racialized and structurally marginalized youth with chronic pain and their families experienced the pandemic. Future research should examine how unexpected benefits of the pandemic (e.g., increased confidence and self-management) may be sustained into the future.

Introduction: La douleur chronique pédiatrique est un problème important au Canada, qui touche un jeune sur cinq. Cette étude décrit les répercussions de la pandémie sur les expériences des familles canadiennes vivant avec la douleur chronique par des entrevues avec des jeunes vivant avec une douleur chronique, des parents et des frères et sœurs.Méthodes: À l'aide d'un devis descriptif qualitatif, des entretiens semi-structurés approfondis ont été réalisés auprès de jeunes Canadiens vivant avec la douleur, leurs parents, et leurs frères et sœurs. Il n'était pas nécessaire que les participants aient un lien familial. Les entretiens ont été analysés à l'aide d'une approche d'analyse thématique réflexive.Résultats: Quarante-quatre entretiens ont été réalisés auprès de 14 parents, 19 jeunes souffrant de douleur chronique et 11 frères et sœurs de tout le pays. Trois thèmes clés ont été abordés : (1) l'absorption et le changement : le coût de la pandémie pour le système familial (p. ex., perte de mécanismes d'adaptation, changement de rôles pour réagir à la pandémie), (2) l'ambiguïté sociale et l'abandon (p. ex., le sacrifice social et l'abandon par le système de soins de santé), et (3) le renforcement de la résilience communautaire : adaptation familiale à la pandémie (p. ex., cohésion familiale, confiance et auto-prise en charge).Discussion/Conclusions: Les jeunes, les parents et les frères et sœurs ont signalé que la pandémie avait eu des répercussions sur les stratégies d'adaptation dans l'ensemble du système familial. Ces résultats décrivent les défis rencontrés par les jeunes pour prendre en charge leur douleur et leur santé globale tout au long de la pandémie, ainsi que la résilience démontrée par les familles pendant cette période. À l'avenir, il serait pertinent d'examiner comment les personnes racialisées et les jeunes structurellement marginalisés souffrant de douleur chronique et leurs familles ont vécu la pandémie.Les recherches futures devraient examiner comment les avantages inattendus de la pandémie (par exemple, une confiance accrue et l'auto-prise en charge) peuvent être maintenus à l'avenir.

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

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

A Pilot Randomized Control Trial of Teens Taking Charge: A Web-based Self-management Program for Adolescents with Cancer.

Background: There is a lack of self-management tools for adolescents with cancer (AWC). This study evaluated the feasibility of Teens Taking Charge Cancer, a web-based self-management program. Methods: A pilot randomized control trial (RCT) was conducted across 4 pediatric oncology clinics. AWC (12-18 years) and their caregivers were randomized to either the intervention or control group. All were asked to complete 12 website modules over 12 weeks (at their own pace) and received monthly calls from health coaches. The intervention website was based on cognitive behavioral principals, designed as an interactive self-guided online program, while the control consisted of education and included links to 12 general cancer websites. Outcome assessments occurred at enrollment and 12 weeks post-intervention. The primary outcomes included rate of accrual and retention, adherence to the protocol, acceptability and satisfaction with intervention using questionnaire and semi-structured interviews, adverse events and engagement with the intervention. Results: Eighty-one teen-caregiver dyads were enrolled with a retention rate of 33%. In the intervention group 46% (n = 18) logged in at least once over the 12-week period. A mean of 2.4 of 12 modules (SD 3.0) were completed; and no one completed the program. Thirty-three percent of caregivers in the intervention logged into the website at least once and none completed the full program. Discussion: The results from this pilot study suggest that the current design of the Teens Taking Charge Cancer RCT lacks feasiblity. Future web-based interventions for this group should include additional features to promote uptake and engagement with the program.

Continuity of primary care and prenatal care adequacy among women with disabilities in Ontario: A population-based cohort study.

BACKGROUND: Women with disabilities experience elevated risks for pregnancy complications and report barriers accessing prenatal care. Emerging evidence highlights the significant role primary care providers play in promoting preventive services like prenatal care. OBJECTIVE: To examine the relationship between continuity of primary care (COC) and prenatal care adequacy among women with disabilities. METHODS: We conducted a population-based study using health administrative data in Ontario, Canada. The study population included 15- to 49-year-old women with physical (n = 106,555), sensory (n = 32,194), intellectual/developmental (n = 1515), and multiple (n = 6543) disabilities who had a singleton livebirth or stillbirth in 2003-2017 and ≥ 3 primary care visits < 2 years before conception. COC was measured using the Usual Provider of Care Index. Nominal logistic regression was used to compute adjusted odds ratios (aOR) for prenatal care adequacy, measured using the Revised-Graduated Prenatal Care Utilization Index, for women with low versus moderate/high COC, controlling for other social and medical characteristics. RESULTS: Women with disabilities with low COC, versus those with moderate/high COC, had increased odds of no (aOR 1.42, 95% CI 1.29-1.56), inadequate (aOR 1.19, 95% CI 1.16-1.23), and intensive prenatal care (aOR 1.22, 95% CI 1.19-1.25) versus adequate. In additional analyses, women with low COC and no/inadequate prenatal care were the most socially disadvantaged among the cohort, and those with low COC and intensive prenatal care had the greatest medical need. CONCLUSION: Improving primary care access for women with disabilities, particularly those experiencing social disadvantage, could lead to better prenatal care access.

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study.

Chronic pain affects 1 in 5 youth, many of whom manage their pain using a biopsychosocial approach. The COVID-19 pandemic has impacted the way that healthcare is delivered. As part of a larger program of research, this study aimed to understand the impact of the pandemic on pediatric chronic pain care delivery including impact on patients' outcomes, from the perspective of pediatric healthcare providers. A qualitative descriptive study design was used and 21 healthcare providers from various professional roles, clinical settings, and geographic locations across Canada were interviewed. Using a reflexive thematic analysis approach 3 themes were developed: (1) duality of pandemic impact on youth with chronic pain (i.e., how the pandemic influenced self-management while also exacerbating existing socioeconomic inequalities); (2) changes to the healthcare system and clinical practices (i.e., triaging and access to care); (3) shift to virtual care (i.e., role of institutions and hybrid models of care). These findings outline provider perspectives on the positive and negative impacts of the pandemic on youth with chronic pain and highlight the role of socioeconomic status and access to care in relation to chronic pain management during the pandemic in a high-income country with a publicly funded healthcare system.

Prenatal Care Adequacy Among Women With Disabilities: A Population-Based Study.

INTRODUCTION: This study examines prenatal care adequacy among women with physical, sensory, and intellectual/developmental disabilities, compared with that among women without disabilities. METHODS: A population-based cohort study using linked health administrative data in Ontario, Canada was completed. The study population comprised women with physical (n=83,752), sensory (n=25,685), intellectual/developmental (n=1,219), and multiple (n=4,966) disabilities and women without disabilities (n=953,766), with a birth in 2003-2017. Analyses were conducted in 2020. Women with disabilities were identified using algorithms applied to healthcare encounters before conception. The main outcome was prenatal care adequacy, measured using the Revised Graduated Prenatal Care Utilization Index. Multivariable nominal logistic regression was used to compute the AORs and 95% CIs for no, inadequate, and intensive (versus adequate) care comparing each disability group with women without disabilities, adjusting for sociodemographic and health characteristics. RESULTS: Women with physical disabilities, compared with those without disabilities, had increased odds of intensive prenatal care (AOR=1.22, 95% CI=1.19, 1.24) and decreased odds of no prenatal care (AOR=0.94, 95% CI=0.89, 0.99) versus adequate care. Women with sensory disabilities had increased odds of intensive (AOR=1.11, 95% CI=1.08, 1.14), inadequate (AOR=1.06, 95% CI=1.02, 1.09), and no (AOR=1.24, 95% CI=1.14, 1.35) prenatal care. Women with intellectual/developmental disabilities had increased odds of inadequate (AOR=1.25, 95% CI=1.08, 1.44) and no (AOR=1.64, 95% CI=1.16, 2.34) prenatal care. Women with multiple disabilities had increased odds of intensive (AOR=1.41, 95% CI=1.32, 1.51) and inadequate (AOR=1.14, 95% CI=1.05, 1.22) prenatal care. CONCLUSIONS: There are variations in prenatal care adequacy by maternal disability status. Disparities in prenatal care access for women with disabilities, particularly those with intellectual/developmental disabilities, need to be addressed.