The comfort ability program for adolescents with sickle cell pain: Evaluating feasibility and acceptability of an inpatient group-based clinical implementation.

BACKGROUND: Integration of nonpharmacological therapies, such as cognitive and behavioral pain management strategies, is recommended to support comprehensive disease and pain management among children and adolescents with sickle cell disease (SCD). The Comfort Ability Program for Sickle Cell Pain (CAP for SCP) introduces psychological and biobehavioral pain management strategies to children and adolescents with SCD. This study aimed to pilot the implementation of the CAP for SCP in a group setting to children and adolescents hospitalized for SCD pain examining feasibility, acceptability, and preliminary effectiveness on improving pain knowledge and coping efficacy. METHOD: Adaptation of CAP for SCP into a three-session group format was guided by four phases of the Dynamic Adaptation Process model: Exploration, Preparation, Implementation, and Sustainment. Youth with SCD (n = 57) hospitalized for pain participated in at least one session and completed self-report of knowledge of pain management skills, pain coping efficacy, and treatment acceptance. Completion rates of sessions and qualitative feedback were gathered to evaluate feasibility and acceptability. RESULTS: Feasibility of conducting inpatient group sessions was suboptimal; however, patients and medical providers reported moderate to high levels of treatment acceptance. Patients also reported significant improvements in knowledge of pain management skills following session 1. CONCLUSIONS: CAP for SCP is a patient-centered first-line psychoeducational intervention that can be integrated into clinical practice settings to introduce youth to cognitive and behavioral pain management strategies to support SCD pain management.

The Critical Role of Parents in Pediatric Cancer-Related Pain Management: a Review and Call to Action.

PURPOSE OF REVIEW: Even with optimized medical management, pain remains an inevitable part of pediatric cancer care. The most effective interventions for nonpharmacologic pain management within pediatric psychology include parent skills training. This review specifically explored the role of parents in cancer-related pain management with the goal of defining a set of evidence-based skills that could translate to improved pediatric cancer pain management. RECENT FINDINGS: Pain is now widely understood to be both a sensory and emotional experience. As a result, within pediatric non-cancer pain management there is increasing application of the biopsychosocial model for pain management, inclusive of evidence-based psychological intervention. This review, specifically focusing on the role of parent training in cancer-related pain management, finds few interventions that systematically included parents. There is a need for continued evidence-based innovation and knowledge dissemination in this area of care. This paper highlights a critical gap in translational science within pediatric cancer pain management, namely, that parents who have a child with cancer are not reliably gaining access to well-established, evidence-based psychological skills training that can help to mitigate pain and pain-related stress. Based on the literature, the authors provide recommendations for generating adaptable, evidence-informed interventions that support and empower parents to help their child with pain management through all phases of cancer treatment.

The Comfort Ability Pain Management Workshop: A Preliminary, Nonrandomized Investigation of a Brief, Cognitive, Biobehavioral, and Parent Training Intervention for Pediatric Chronic Pain.

Objective: Psychological intervention is widely recognized as an integral part of the recovery process from pediatric chronic pain, but service acquisition is often limited by resource barriers. The aim of this study was to assess the feasibility, acceptability, and satisfaction of a brief, structured, skills-based, group intervention designed expressly to address gaps in service delivery. Exploratory outcomes were also assessed. Method: Adolescents with chronic pain (n = 102; ages 10-17 years) and their mothers (n = 105) completed self-report questionnaires at baseline, 1-week, 1-month, and 3-month posttreatment. Results: This study demonstrated feasibility, and overall high acceptability and satisfaction among adolescents and parents. Exploratory analyses within this nonrandomized design suggest that adolescents demonstrate improvement in functionality (p = .0012), depression symptoms (p < .0001), and pain catastrophizing (p < .0001) by 1-month posttreatment and continued making gains over time. Parents made significant changes in parenting practices (p-values < .01) and in their beliefs about their adolescent's ability to manage pain (p < .001) by 1-week posttreatment and continued making gains over time. Conclusions: This brief intervention is both feasible and acceptable. Although small effect sizes were found for all outcome measures, parents and adolescents made significant gains postintervention. In the absence of a direct comparison group, we cannot determine if these improvements are exclusively attributable to the intervention. Future research will be needed to understand the degree to which this brief intervention may effectively enhance the attainment of evidence-based psychoeducation and cognitive behavioral skills that are known to foster adaptive parent and adolescent responses to chronic pain.

The Pivotal Role of Pediatric Psychology in Chronic Pain: Opportunities for Informing and Promoting New Research and Intervention in a Shifting Healthcare Landscape.

PURPOSE OF REVIEW: In the context of new efforts to formulate more comprehensive diagnostic and treatment processes for chronic pain conditions, this review aims to provide an overview of some of the most salient developments in the diagnosis and clinical treatment of pediatric chronic pain and to delineate the current and future role of clinical pediatric psychologists in these efforts. RECENT FINDINGS: The acceptance and promotion of the multidisciplinary approach to pediatric pain management has had an especially significant impact on the field of pediatric psychology. Though chronic pain was historically conceptualized as a biomedical problem, psychology is increasingly viewed as a routine, integral, and component part of treatment. With this evolving biopsychosocial paradigm, pediatric psychology is poised to help shape the development of this field, contributing to emerging conceptual and diagnostic frameworks via consultation, research, clinical care, and education. This review discusses the role of pediatric psychologists as collaborators in emerging diagnostic and assessment frameworks, leaders in pain-related research, drivers of clinical care, and educators for providers, patients, and the lay public. With increased opportunities to enhance the conceptualization and treatment of pediatric pain, pediatric psychologists have an important role to play in reducing the prevalence and persistence of pediatric pain.

Rapid Mobilization of an Evidence-Based Psychological Intervention for Pediatric Pain during COVID-19: The Development and Deployment of the Comfort Ability® Program Virtual Intervention (CAP-V).

BACKGROUND: The gold standard of treatment for chronic pain is a multidisciplinary approach in which psychology plays a leading role, but many children and caregivers do not gain access to this treatment. The Comfort Ability® Program (CAP) developed a CBT-oriented group intervention for adolescents and caregivers designed expressly to address access to evidence-based psychological care for pediatric chronic pain. Before the COVID-19 disruption of in-person services, the CAP workshop had been disseminated to a network of 21 children's hospitals across three countries. In March 2020, a virtual (telehealth) format was needed to ensure that children with chronic pain could continue to access this clinical service throughout the CAP Network. METHODS: A model of knowledge mobilization was used to adapt the CAP workshop to a virtual format (CAP-V) and disseminate it to network sites. A pilot study assessing participant and clinician perceptions of acceptability, feasibility, and treatment satisfaction included baseline, post-sessions, and post-program questionnaires. RESULTS: A knowledge mobilization framework informed the rapid development, refinement, and mobilization of CAP-V. Data from a pilot study demonstrated feasibility and high acceptability across participants and clinicians. CONCLUSIONS: A knowledge mobilizationframework provided a roadmap to successfully develop and deploy a virtual behavioral health intervention for adolescents with chronic pain and their caregivers during a worldwide pandemic. While CAP-V has demonstrated preliminary clinical feasibility and acceptability at the CAP hub, ongoing research is needed.

Family functioning and posttraumatic stress symptoms in youth and their parents after unintentional pediatric injury.

This study examined the association between family functioning and the development of posttraumatic stress symptoms (PTSS) in youth and parents following an unintentional traumatic injury of a child. Fifty-one parent-child dyads completed questionnaires and a structured interview assessing PTSS and family functioning. Multiple regression analyses were applied to evaluate the contribution of family functioning to the development of PTSS after controlling for demographic characteristics and known predictors. Family functioning had both direct and moderating influences on the development of PTSS in parents. We were unable to demonstrate a systematic impact of family functioning on the development of PTSS in children from the same families.

Mobilizing the psychology evidence base for the treatment of pediatric chronic pain: The development, implementation, and impact of the Comfort Ability Program.

Over the past 20 years, our knowledge regarding evidence-based psychological interventions for pediatric chronic pain has dramatically increased. Unfortunately, access to evidence-based pain management interventions remains a challenge for many children and adolescents who suffer with persistent pain. Reducing patient burden and system-level barriers to care are a central target of clinical innovations in pain treatment intervention. Psychological interventions are also increasingly focused on reducing biomedical biases that may inhibit attainment of services. While there are many new psychological interventions across an array of delivery platforms, few interventions have been systematically disseminated. This paper will highlight the translational research procedures that have informed the development and dissemination of the Comfort Ability Program (CAP), an interactive group-based intervention teaching adolescents and their parents evidence-based strategies to manage chronic or persistent pain. Now in its fifth year of dissemination, CAP has a demonstrated record of success with cross-institutional implementation and sustainability at 18 hospitals across three countries. This paper reviews six dynamic and iterative phases of development, based on the Graham et al knowledge-to-action cycle (2006), that have guided the implementation and dissemination research for this program. The phases of CAP development include the following: (a) identifying knowledge and clinical gaps in care, (b) generating knowledge assets and implementation procedures, (c) evaluating clinical outcomes and system-level processes, (d) developing and testing dissemination procedures, (e) expanding partnerships and monitoring knowledge use, and (f) sustaining knowledge use and continued innovation. This paper targets primarily health professionals and administrators and secondarily caregivers and the public at large.

Differences Between Mothers' and Fathers' Perception of Their Adolescents' Pain Before and After Parent Training Through The Comfort Ability Pain Management Program.

OBJECTIVE: To evaluate differences in how mothers and fathers perceive and respond to their adolescents' chronic pain before and after The Comfort Ability Program (CAP), a 1-day cognitive-behavioral intervention, and to compare outcomes between mother-father dyads and mothers who attended the intervention alone. METHODS: Parents completed the Pain Catastrophizing Scale (PCS) and Helping for Health Inventory (HHI) at baseline (preintervention) and at 1 week, 1 month, and 3 months after intervention. Confirmatory factor analyses evaluated construct validity and invariances of the scales. Paired t tests compared scores between mothers and fathers. Unpaired t tests compared mother-father dyads (n = 33) and mothers who attended the intervention alone (n = 73). RESULTS: PCS baseline showed significant construct instability between maternal and paternal interpretations. However, 1 week after intervention, construct stability improved between parents. On the PCS and HHI, in which lower scores represent more adaptive parenting behaviors, fathers scored significantly lower than mothers at baseline (PCS: 22.6 [7.7] vs 28.0 [11.4], p value = 0.033; HHI: 16.0 [8.1] vs 20.6 [9.6], p value = 0.029). At 3 months after intervention, PCS scores for both mothers and fathers significantly decreased from baseline (mothers: p value = 0.009; fathers: p value = 0.052) and converged (mothers: 18.6 [11.2] vs fathers: 18.3 [13.2]; p value = 0.786). Mother and father HHI scores were significantly lower at 3 months than baseline (mothers: 13.2 [9.5], p value = 0.005; fathers: 15.0 [12.7], p value = 0.017), although improvement of construct stability between parents was less evident. CONCLUSION: Findings suggest that mothers and fathers may differentially perceive and respond to their adolescents' pain and that CAP parent-training intervention may help align their thinking. The results further demonstrate that both parents make adaptive changes after intervention, reinforcing the value of including both parents in pediatric treatment for chronic pain.

The role of emotion regulation in chronic pain: A systematic literature review.

OBJECTIVE: Emotion regulation (ER) includes a set of cognitive and attentional processes used to change or maintain emotional state. A small but growing body of research suggests that maladaptive ER might be a risk factor for the development of chronic pain. This review aims to summarize existing literature on the association between ER and chronic pain, and to determine whether the construct of ER may further enhance our understanding of the risk and protective factors that may contribute to the onset and maintenance of chronic pain. METHODS: A systematic search was conducted using the search terms "chronic pain" and "emotion regulation." Studies that measured both constructs across all age groups were included. RESULTS: We found 15 studies that met our inclusion criteria. Nine studies were completed within the last five years, suggesting that the evaluation of ER as it relates to pain is a new line of research. Studies that measured "response-focused" ER found associations between maladaptive ER and pain. Studies that measured "antecedent-focused" ER strategies were less likely to show a direct association with pain. CONCLUSION: Maladaptive response-focused ER may be an important risk factor in the development and maintenance of chronic pain, as it is associated with pain and psychological comorbidities. Adding ER to chronic pain investigations may help to further explain individual differences in the risk and protective mechanisms that are known to influence chronic pain. Importantly, this line of research has potential to directly inform future interventions for patients with chronic pain.

Chronic pain in the classroom: teachers' attributions about the causes of chronic pain.

BACKGROUND: School absenteeism and other impairments in school function are significant problems among children with chronic pain syndromes; yet, little is known about how chronic pain is perceived in the school setting. The purpose of this study was to examine teachers' attributions about the causes of chronic pain in adolescent students. METHODS: Classroom teachers (n = 260) read vignettes describing a hypothetical student with limb pain. They were presented with a list of possible physical and psychological causes for the pain and asked to identify the causes to which they attributed the pain. Vignettes varied by the presence or absence of (1) documented medical evidence for the pain and (2) communication from the medical team. Teachers also responded to questions assessing their responses to the student in terms of support for academic accommodations and sympathy for the student. RESULTS: Teachers tended to endorse a dualistic (ie, either physical or psychological) model for pain rather than a biopsychosocial model. Documented medical evidence supporting the pain was the most influential factor affecting teachers' attributions about chronic pain. Teachers who attributed the pain to physical causes-either in isolation or in combination with psychological causes-responded more positively toward the student. CONCLUSIONS: Many teachers lack a biopsychosocial framework through which to understand chronic pain syndromes in students. How chronic pain is described to school personnel may affect how teachers understand the pain and respond to it.

Evidence-Based Psychological Interventions for the Management of Pediatric Chronic Pain: New Directions in Research and Clinical Practice.

Over the past 20 years our knowledge about evidence-based psychological interventions for pediatric chronic pain has dramatically increased. Overall, the evidence in support of psychological interventions for pediatric chronic pain is strong, demonstrating positive psychological and behavioral effects for a variety of children with a range of pain conditions. However, wide scale access to effective psychologically-based pain management treatments remains a challenge for many children who suffer with pain. Increasing access to care and reducing persistent biomedical biases that inhibit attainment of psychological services are a central focus of current pain treatment interventions. Additionally, as the number of evidence-based treatments increase, tailoring treatments to a child or family's particular needs is increasingly possible. This article will (1) discuss the theoretical frameworks as well as the specific psychological skills and strategies that currently hold promise as effective agents of change; (2) review and summarize trends in the development of well-researched outpatient interventions over the past ten years; and (3) discuss future directions for intervention research on pediatric chronic pain.

Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions.

Research on the adjustment of families of children with spina bifida is reviewed, with a focus on delineating the impact of spina bifida on family functioning, the strengths and weaknesses of past research, and the needs for future evidence-based research on family interventions with this population. PsychINFO and MEDLINE literature searches were used to identify studies of family functioning and family-based interventions for children with spina bifida. Identified studies were empirically evaluated for the presence or absence of key methodological or analytic criteria. Thirty-two studies of family functioning were identified from 25 separate research groups; most studies displayed significant methodological limitations. No published studies of interventions to promote adaptive family functioning were identified. Methodologically sound, longitudinal, and theory-driven studies of family functioning are needed, as are randomized family-based intervention trials to promote adaptive functioning and better psychosocial outcomes in families of children with spina bifida. Specific recommendations for future work as well as clinical implications are noted.

Pediatric Pain Screening Tool: rapid identification of risk in youth with pain complaints.

Moderate to severe chronic pain is a problem for 1.7 million children, costing $19.5 billion dollars annually in the United States alone. Risk-stratified care is known to improve outcomes in adults with chronic pain. However, no tool exists to stratify youth who present with pain complaints to appropriate interventions. The Pediatric Pain Screening Tool (PPST) presented here assesses prognostic factors associated with adverse outcomes among youth and defines risk groups to inform efficient treatment decision making. Youth (n = 321, ages 8-18, 90.0% Caucasian, 74.8% female) presenting for multidisciplinary pain clinic evaluation at a tertiary care center participated. Of these, 195 (61.1%) participated at 4-month follow-up. Participants completed the 9-item PPST in addition to measures of functional disability, pain catastrophizing, fear of pain, anxiety, and depressive symptoms. Sensitivity and specificity for the PPST ranged from adequate to excellent, with regard to significant disability (78%, 68%) and high emotional distress (81%, 63%). Participants were classified into low- (11%), medium- (32%), and high- (57%) risk groups. Risk groups did not significantly differ by pain diagnosis, location, or duration. Only 2% to 7% of patients who met reference standard case status for disability and emotional distress at 4-month follow-up were classified as low risk at baseline, whereas 71% to 79% of patients who met reference standard case status at follow-up were classified as high risk at baseline. A 9-item screening tool identifying factors associated with adverse outcomes among youth who present with pain complaints seems valid and provides risk stratification that can potentially guide effective pain treatment recommendations in the clinic setting.

Mediator and moderator effects in developmental and behavioral pediatric research.

The terms mediation and moderation are defined and clarified with particular emphasis on the role of mediational and moderational analyses in developmental and behavioral pediatric research. The article highlights the applicability of mediational and moderational analyses to longitudinal, intervention, and risk and protective factor research, and it provides basic information about how these analyses might be conducted. Also included is a discussion of various ways that both mediator and moderator variables can be incorporated into a single model. The article concludes with extended examples of both types of analyses using a longitudinal pediatric study for illustration. The article provides recommendations for applying mediational and moderational research in clinical practice.

Teachers' perceptions of and responses to adolescents with chronic pain syndromes.

OBJECTIVE: To examine factors that influence teachers' perceptions of and responses to chronic pain in students. METHODS: Two-hundred and sixty classroom teachers responded to a vignette describing a student with limb pain. The 2 x 2 x 2 factorial design included conditions that varied by (a) the presence or absence of documented organic evidence for the pain, (b) cooperative vs. confrontational parent-teacher interactions, and (c) the presence or absence of communication from the medical team. Teachers rated pain severity and impairment, relief from classroom responsibilities, extent of accommodations the student would require in school, and sympathy for the student and family. RESULTS: Documented medical evidence supporting the pain was the most influential factor affecting teachers' responses to pain. Parental attitude also influenced responses. Communication from the medical team influenced teachers' decisions about relief from responsibilities but did not affect other reactions. CONCLUSIONS: Teachers' responses to students with pain are influenced by situational factors. Efforts to increase school functioning in youth with chronic pain should incorporate attempts to help teachers respond to pain adaptively.

Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis.

OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This prospective longitudinal study includes 68 families of children with spina bifida and 68 comparison families of healthy children. Multimethod, multiinformant data were evaluated via optimal data analysis (ODA) and classification tree analysis (CTA) techniques. RESULTS: Factors best predicting psychosocial adaptation in early adolescence included (a) intrinsic motivation, (b) estimated verbal IQ, (c) behavioral conduct, (d) coping style, and (e) physical appearance. There were no significant group (spina bifida vs. able-bodied) effects. CONCLUSIONS: The final classification model correctly classified 77.8% of the total sample, indicating that this model had significant predictive capabilities. Results suggested that processes leading to psychosocial adaptation may be similar for youth with and without chronic illness.

Condition-related knowledge among children with spina bifida: longitudinal changes and predictors.

OBJECTIVE: To examine changes in three domains of condition-related knowledge among youth with spina bifida and to examine the utility of youth cognitive ability level and condition severity as predictors of knowledge change. METHODS: Seventy preadolescents with spina bifida completed a 12-item questionnaire assessing knowledge of spina bifida at three time points during middle childhood and early adolescence. Specific domains of knowledge assessed included (a) etiology of spina bifida, (b) functional status, and (c) shunt functioning (completed by participants with shunted hydrocephalus only). RESULTS: Findings revealed gains in accuracy of knowledge on 6 of 12 items; however, neither children's cognitive ability level nor condition severity predicted changes in knowledge over time. Most condition domains were characterized by low-to-moderate levels of knowledge across time. CONCLUSIONS: Although significant gains were evident in children's condition-related knowledge, at Time 3, many participants still failed to understand basic information about the etiology of their condition or major functional issues associated with spina bifida. Additional education about catheterization and shunt malfunction are two domains that may be of particular clinical significance.

A longitudinal study of pubertal timing, parent-child conflict, and cohesion in families of young adolescents with spina bifida.

OBJECTIVE: To study longitudinal associations between perceived pubertal timing and family conflict and cohesion during the transition to adolescence in 68 families of children with spina bifida and 68 matched families with able-bodied children. Children were 8 or 9 years old at Time 1 and 10 or 11 years old at Time 2. METHODS: Family conflict and cohesion were assessed with observational data and maternal, paternal, and child reports on questionnaires. Perceived pubertal timing was assessed with maternal report. RESULTS: Consistent with the literature on typically developing young adolescents, prospective longitudinal analyses revealed that early maturity was associated with higher levels of conflict and decreases in cohesion in families with able-bodied children. Contrary to these findings, perceived pubertal timing had less of an impact (or the opposite impact) in families of children with spina bifida. Findings were robust across respondents and methods of data collection. CONCLUSIONS: Findings based on multimethod and multisource data suggest that familial response to developmental change differs across context (spina bifida vs. able-bodied). Possible reasons for differential responses to the adolescent transition are reviewed. Services are likely to be enhanced if health professionals routinely discuss adolescent developmental issues with parents and youths during clinic visits.