A systematic review of self and observer assessment of pain and related functioning in youth with brain-based developmental disabilities.

ABSTRACT: Pain experiences of youth with brain-based developmental disabilities are often overlooked and/or misinterpreted, increasing the risk for poor or inadequate pain assessment and management. Ample measures exist to assess acute and chronic pain, yet their utility and frequency of use in youth with brain-based developmental disabilities is unclear and available measures do not have strong measurement properties for this diverse group. This systematic review identified the scope of self-reported and observer-reported pain assessment in studies of youth (aged 3-24 years) with brain-based developmental disabilities (phase 1) and summarized other measures of pain-related functioning for acute and chronic pain (ie, physical, emotional, social, sleep, and quality of life, within the subset of quantitative studies focused primarily on pain, phase 2). A comprehensive search for English-language studies was conducted in August 2022 in Web of Science, CINAHL, MEDLINE, Cochrane CENTRAL, EMBASE, and APA PsychINFO (PROSPERO registration: CRD42021237444). A total of 17,029 unique records were screened. Of the 707 articles included in phase 1, most assessed chronic pain (n = 314; 62.0%) and primarily used observer-report (n = 155; 31%) over self-report (n = 67; 13%). Of the 137 articles included in phase 2, other outcomes assessed alongside pain intensity included motor ability (16.8%), adaptive functioning (11%), quality of life (8%), pain interference (6.6%), mental health (5.8%), and communication ability (2.9%). Cerebral palsy was the most common population in both phase 1 (n = 343; 48.5%) and phase 2 (n = 83; 59.7%). This review provides a foundational understanding of pain assessment in brain-based developmental disabilities and highlights continued inequities in holistic pain assessment for this population.

Pain burden in children with cerebral palsy (CPPain) survey: Study protocol.

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

[Challenges in pain assessment and management among individuals with intellectual and developmental disabilities : German version]. / Herausforderungen der Schmerzerfassung und -therapie bei Personen mit Intelligenzminderung und Entwicklungsstörungen : Deutsche Fassung.

INTRODUCTION: Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life. OBJECTIVES: This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD. METHODS: This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice. RESULTS: The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report. CONCLUSION: Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.

A Randomized Controlled Trial Evaluating a Pain Training for Respite Workers Supporting Children With Disabilities Part Two: Training Evaluations and the Impact of Training on Knowledge Application.

Within a parallel-group randomized control trial, pain training's impact on Respite Workers' (RW) care approaches and training evaluations was explored. RW (n = 158) from 14 organizations received pain or control training following randomization. Researchers were blind until randomization; allocations were not shared explicitly with organizations/participants. Participants completed a strategy use questionnaire immediately before and an evaluation immediately after training completion. Four-to-6 weeks later, participants completed the strategy use questionnaire and semistructured focus groups. No differences in pain approaches were noted in strategy use questionnaires. Per focus groups, both groups acquired a "knowing" about pain and applied pain-related care approaches in similarly. Pain training participants identified need for "growing and strengthening" pain knowledge. Training endorsements were favorable. RW pain training has value and may impact practice.

A Randomized Controlled Trial Evaluating a Pain Assessment and Management Program for Respite Workers Supporting Children With Disabilities Part One: Pain-Related Knowledge and Perceptions.

This parallel group randomized controlled trial tested effectiveness of the Let's Talk About Pain training on respite workers' (RW) pain-related knowledge and feasibility-confidence-skill ratings using between-group and within-group analyses. Fourteen children's respite organizations were randomized to pain or control training. Participants (nintervention = 66; ncontrol = 92) underwent a 3-3.5 hour training and completed measures at pre-, post-, and 4-6 week follow-up. Intention-to-treat (nintervention = 65; ncontrol = 92) and per-protocol (nintervention = 26-38; ncontrol = 40-57) analyses were conducted. Pain training participants demonstrated significantly higher pain knowledge and feasibility-confidence-skill ratings post-follow-up versus control group and significant increases in knowledge from pre-post. Significant gains were maintained from post-follow-up. Results represent a promising step towards enhancing pain-related care for children with IDD.

The importance of feasible outcome evaluations: Developing stakeholder-informed outcomes in a randomized controlled trial for children's respite workers receiving pain training.

Objective: Pain is common for children with intellectual and developmental disabilities. It is critical that caregivers have adequate pain assessment and management knowledge. The Let's Talk About Pain program has shown promise to provide pain-related knowledge and skills to respite workers; however, more systematic evaluation of the program is needed. This study aims to support Let's Talk About Pain's RCT development by using stakeholder input to help determine a feasible approach for collecting behaviorally based outcomes. A secondary aim is to discuss relevant considerations and implications for others in the disability field conducting similar work. Methods/Design: Four employees in children's respite organizations completed telephone interviews lasting approximately fifteen minutes and a questionnaire about feasible data collection approaches. Results: The use of questionnaire and focus group methodology was determined to be the most feasible method to evaluate participants' pain-related approaches in practice. Conclusions: Special consideration should be made when making methodological-related choices during study development to help ensure study feasibility. The iterative approach described in this paper may also be helpful in clinical settings when designing program evaluations to enhance feasibility and suitability; it is particularly important for multifaceted organizations supporting individuals with complex needs including those with intellectual and developmental disabilities.

Challenges in pain assessment and management among individuals with intellectual and developmental disabilities.

INTRODUCTION: Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life. OBJECTIVES: This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD. METHODS: This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice. RESULTS: The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report. CONCLUSION: Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.

Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study.

BACKGROUND: For children with cancer in palliative care, pain and worry are common and frequently under-managed, which negatively impacts quality of life (QOL). Massage therapy (MT) can lead to reduced pain in children with chronic illnesses. Children with cancer have experienced lower anxiety after MT. No studies have examined the effects of MT in pediatric oncology patients receiving palliative care. OBJECTIVE: Conduct a MT intervention to determine intervention acceptability and initial effects on ratings of pain, worry reduction, and quality of life. DESIGN: Pre-post single group pilot study. SETTING/SUBJECTS: Eight children with cancer (age 10-17) and one of their parents were recruited from a palliative care service. PROCEDURE/MEASUREMENTS: Baseline (one week prior to intervention): demographics, MT expectations, QOL, and pain measures. Intervention (one month): MT was provided once per week, with children's pain and worry ratings occurring immediately before and after each MT session. Follow Up (4-6 weeks after baseline): QOL, pain, and MT/study acceptability questionnaires. RESULTS: Participants reported significant decreases in pain following two MT sessions, and worry following one session. No significant changes in pain symptoms and QOL were found between baseline and follow up. Participants positively endorsed the study and the MT intervention, and there were no adverse effects reported. CONCLUSIONS: MT may lead to immediate decreases in pain and worry in children with cancer who are receiving palliative care, however the effects may not be sustained long term. Difficulties regarding protocol feasibility including recruitment and study compliance remain important considerations for future work.

Study protocol for a multi-centre parallel two-group randomized controlled trial evaluating the effectiveness and impact of a pain assessment and management program for respite workers supporting children with disabilities.

Objective: Pain is common and complex for children with intellectual and developmental disabilities (I/DD). Secondary caregivers such as respite workers are lacking important pain-related information which can impact care. Here, we outline a randomized controlled trial (RCT) protocol testing the effectiveness of a pain training for respite workers supporting children with I/DD. Methods/design: Organizations enrolled in the RCT were randomly assigned to receive a 3-3.5 hours pain or family-centered care training. Data were collected immediately before, after, and 4-6 weeks following completion of the training. Outcomes are as follows: pain knowledge (primary), pain assessment and management perceptions (secondary), training evaluations (secondary), and use of pain assessment and management skills (tertiary). Both quantitative and qualitative methodologies are being used including questionnaires, rating scales, a standardized vignette, and focus groups. Conclusions: Results from this trial will be used to further understand the impact of the pain training and inform next steps related to implementation. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT03421795.

Pain in Children With Developmental Disabilities: Development and Preliminary Effectiveness of a Pain Training Workshop for Respite Workers.

INTRODUCTION: Pain in children with intellectual disabilities (ID) is common and complex, yet there is no standard pain training for their secondary caregivers (ie, respite staff). OBJECTIVES: Determine perceived pain training needs/preferences of children's respite staff (phase 1) and, use this information combined with extant research and guidelines to develop and pilot a training (phase 2). METHODS: In phase 1, 22 participants responded to questionnaires and engaged in individual interviews/focus groups about their experiences with pain in children with ID, and perceived training needs/preferences. In phase 2, 50 participants completed knowledge measures and rated the feasibility of, and their own confidence and skill in, pain assessment and management for children with ID immediately before and after completing a pain training. They also completed a training evaluation. RESULTS: Participants viewed pain training as beneficial. Their ideal training involved a half-day, multifaceted in-person program with a relatively small group of trainees incorporating a variety of learning activities, and an emphasis on active learning. Phase 2 results suggested that completion of the 3 to 3.5-hour pain training significantly increased respite workers' pain-related knowledge (effect sizes: r=0.81 to 0.88), as well as their ratings of the feasibility of, and their own confidence and skill in, pain assessment and management in children with ID (effect sizes: r=0.41 to 0.70). The training was rated favorably. DISCUSSION: Training can positively impact respite workers' knowledge and perceptions about pain assessment and management. As such, they may be better equipped to care for children with ID in this area.

Pain in children with intellectual disabilities: a randomized controlled trial evaluating caregiver knowledge measures.

Inadequate knowledge has contributed to inaccurate pain assessment and treatment for children with intellectual disabilities. AIM: Develop and evaluate pain knowledge measures and accompanying self-report ratings; determine their sensitivity to change. MATERIALS & METHODS: Young adults (n = 77; Mage = 18.89; standard deviation = 2.29; 67 females) were randomly assigned to one of two 'caring for children with intellectual disabilities' training programs (pain and visual supports). Participants completed pre-post-measures of pain knowledge and six self-report ratings of feasibility, confidence and perceived skill in pain assessment and treatment. RESULTS: After controlling for pretraining scores, pain knowledge and self-report ratings were significantly higher following pain training versus visual support training. CONCLUSION: These measures show promise for the evaluation of pain knowledge in secondary caregivers.

Caring for children with intellectual disabilities part 2: Detailed analyses of factors involved in respite workers' reported assessment and care decisions.

Respite workers (RW) commonly care for children with intellectual disabilities (ID), and pain is common for these children. Little is known about factors which inform RW pain assessment and management-related decisions. OBJECTIVES: To describe/determine the following in response to a series of pain-related scenarios (e.g., headache, falling): (1) factors considered important by RW when assessing children with ID's pain; (2) whether children's verbal ability impacts pain assessment factors considered; (3) RW assessment and management approach. PARTICIPANTS: Fifty-six RW (18-67 years, Mage=33.37, 46 female). PROCEDURE/MEASURES: In an online survey, participants read and responded to six vignettes manipulating child verbal ability (verbal, nonverbal) and pain source. RESULTS: The factors most frequently considered when assessing pain were child behavior (range: 20-57.4%), and history (e.g., pain, general; 3.7-38.9%). Factors did not vary by child's verbal ability. RW indicated varied assessment and management-related actions (range: 1-11) for each scenario. DISCUSSION: Findings suggest: a) factors informing pain assessment did not depend on whether or not the child was verbal and b) a degree of flexibility in RW response to pain across situations. While these findings are encouraging, ensuring RW have adequate pain assessment and management knowledge specific to children with ID is critical.

Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions.

Some children with intellectual disabilities (ID): experience pain more frequently than children without ID, express their pain differently, and are incapable of providing self-reports. No research has examined disability and pain-related beliefs of respite workers (RW) and their relations to pain assessment and management decisions for children with ID. OBJECTIVES: (1) compare disability and pain-related beliefs between RW and a sample with little experience in ID; (2) determine whether individuals' beliefs and personal characteristics are related to pain assessment and management decisions. PARTICIPANTS: Fifty-six RW (aged: 18-67 years, Mage=33.37, 46 female) and 141 emerging adults (aged: 18-31 years, Mage=19.67, 137 female). PROCEDURE/MEASURES: In an online survey, participants responded to six vignettes depicting pain in children with ID, and completed measures of pain and disability-related beliefs. RESULTS/DISCUSSION: Compared to those without experience, RW held more positive disability-related beliefs, t(192)=4.23, p<0.001. Participants' pain-related beliefs (e.g., sensitivity to pain) differed depending on severity of the child's ID and participant group. Participants' pain-related beliefs predicted care decisions. Results provide initial insight into RW pain-related beliefs about children with ID, and a basic understanding of the relations among pain beliefs, personal characteristics and pain-related decisions.

Cognitive Behavioral Therapy for Anxiety and Fear in Pediatric Pain Contexts.

Pain is a highly prevalent experience in pediatric medical populations, both in an acute form (e.g., iatrogenic pain from needle procedures) as well as in more chronic forms (e.g., as a result of arthritis, inflammatory bowel disease, or as a disease/disorder in and of itself). Guided by the biopsychosocial model, the overarching objective of this work is to examine cognitive behavioral treatment of anxiety in pain contexts. Specific aims are to (a) provide a brief overview of anxiety in youth with a high fear of needles and those experiencing chronic pain, (b) review the evidence base for cognitive behavioral therapy (CBT) for these populations, (c) outline considerations for implementing CBT-based approaches, and (d) provide two case examples which illustrate the application of CBT in these contexts. Brief concluding remarks include suggestions for future research such as improved screening and treatment of comorbid anxiety in the context of pain.

Observer perceptions of pain in children with cognitive impairments: vignette development and validation.

AIM: Develop vignettes depicting different pain types in verbal and nonverbal children with cognitive impairments that could help examine pain assessment and management decisions of secondary caregivers, and conduct initial convergent and divergent validity analyses. METHODS: For six vignettes, 76 undergraduate students (38 females, mean age = 19.55) rated (0-10): pain intensity, difficulty rating pain intensity, need for medical attention and need for other attention (e.g., physical comfort). RESULTS: Ratings significantly varied by pain source (e.g., headache was rated more painful than injections). Verbal ability did not impact ratings. CONCLUSION: Vignettes could serve as an alternative method to study pain decisions by caregivers of children with cognitive impairments when ethical barriers limit more naturalistic research.

Historical analysis in pediatric psychology: the influence of societal and professional conditions on two early pediatric psychology articles and the field's subsequent development.

The field of pediatric psychology arose in the 1960s in response to a variety of societal and professional needs. 2 seminal articles written during this time, by Jerome Kagan (1965) and Logan Wright (1967), played key roles in the field's development. However, their efficacy in galvanizing a response from medical professionals and psychologists had much to do with broad-ranging developments in pediatric public health, intraprofessional changes among medical specialties, and a growing preoccupation with "psychosocial" and parenting issues. The purpose of this paper is to situate Kagan's (1965) and Wright's (1967) contributions within their social and historical contexts, and thereby to elicit reflection on the field's subsequent and continued development.