Interim guidelines for the assessment and treatment of pain in children with multiple sclerosis

IntroductionPain in multiple sclerosis (MS) is common, but literature on pain in children with MS remains scarce. Pain has physical, psychological, and social implications in MS, and both comprehensive assessment and interdisciplinary management approaches are needed. We sought to develop an interdisciplinary interim guideline for the assessment and management of pain in children with MS.Methods and materialsWe convened a modified Delphi panel composed of 13 experts in pediatric and adult MS neurology, physiotherapy, pain, patient lived-experience, advanced practice nursing, psychology, physiatry, and MS research. A survey was sent to panelists for anonymous completion. The panel discussed survey themes extracted by the panel chair. The process was repeated twice.ResultsThirteen assessment and treatment recommendations were produced regarding pain in children with MS.DiscussionFuture studies will assess implementation of these pain assessment and treatment guidelines in the clinical setting

Conceptualizing pain-related stigma in adolescent chronic pain: a literature review and preliminary focus group findings

Abstract. Introduction:. Chronic pain in adolescents is a significant medical condition, affecting the physical and psychological well-being of youth and their families. Pain-related stigma is a significant psychosocial factor in adolescents with chronic pain that has been understudied, despite its implications for negative health outcomes, poor quality of life, and increased healthcare utilization. Objectives:. To examine pain-related stigma in the literature documenting pediatric and adult health-related stigma and present preliminary findings from a focus group of adolescents with chronic pain. Methods:. In this narrative review, we explored pain-related stigma research and conceptualized the literature to address pain-related stigma among adolescents with chronic pain. Additionally, we conducted a focus group of four adolescent females with chronic pain and using content analyses, coded the data for preliminary themes. Results:. We propose a pain-related stigma model and framework based on our review and the findings from our focus group. Findings suggest that medical providers, school personnel (ie, teachers and school nurses), peers and even family members enact pain-related stigma toward adolescents with chronic pain. Conclusions:. Based on this narrative review, there is preliminary evidence of pain-related stigma among adolescents with chronic pain and future research is warranted to better understand the nature and extent of this stigma within this population

A Systematic Approach to Developing Virtual Patient Vignettes for Pediatric Health Equity Research

Objective: The aim of this study was to describe a systematic approach to developing virtual patient (VP) vignettes for health equity research in pediatric pain care. Methods: VPs were initially developed to depict the body posture and movements of actual children experiencing pain. Researchers and clinicians with expertise in pediatric pain worked closely with a professional animator to portray empirically supported pain expression in four, full-motion, virtual male characters of two races (i.e., White and Black). Through an iterative process, VPs were refined to (1) appear realistic in a clinical setting and (2) display archetypal pain behavior and expression during a 1-min video clip without sound. Text vignettes were developed with consultation from experts in pain care and presented alongside VPs to assess clinical decision-making. VP vignettes were piloted in a sample of pediatric providers (N=13). Results: Informed by the literature and expertise of stakeholders, several revisions were made to improve VPs' facial grimacing and realism before piloting. VPs appeared to accurately capture important aspects of pain expression and behavior common among pediatric patients with pain disorders. Additional refinements to the text vignettes were made based on provider feedback to improve clarity and clinical relevance. Conclusions: This article presents a working framework to facilitate a systematic approach to developing VP vignettes. This framework is a first step toward advancing health equity research by isolating psychosocial and interpersonal factors affecting provider behavior and decision-making. Future research is needed to validate the use of VP vignettes for assessing provider behavior contributing to health inequities for youth with pain disorders

Daily Changes in Pain, Mood and Physical Function in Youth Hospitalized for Sickle Cell Disease Pain

BACKGROUND: Youth with sickle cell disease (SCD) are commonly hospitalized for treatment of painful vaso-occlusive episodes (VOE). However, limited data are available concerning the course of hospitalization for these children and adolescents and, in particular, whether daily changes occur in pain, emotional status and physical function

Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF)

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

Management of pain and distress due to medical procedures

Sponsored by the Society of Pediatric Psychology, this handbook is recognized as the definitive reference in the field

Retrospective evaluation of pain assessment and treatment for acute vasoocclusive episodes in children with sickle cell disease.

BACKGROUND: This study was conducted to assess the care of pediatric patients hospitalized for sickle cell disease-related vasoocclusive episodes (VOE). The aim of this research was to illustrate the course of pain scores and methods of therapeutic intervention during hospitalization. PROCEDURE: Retrospective medical chart reviews were conducted to collect pain assessment and management data about children hospitalized during a 2-year period at an urban children\u27s hospital. T tests and Chi-square analyses were used to identify differences in demographic variables, pain scores and opiate utilization. RESULTS: There were 59 children with 134 hospitalizations for VOE in a 2-year period. 50.8% of the patients were male; the mean age was 11.5 +/- 4.9 years. The average length of hospitalization was 4.6 +/- 2.7 days (range 1-19 days). Older patients stayed in the hospital significantly longer than younger patients (P = 0.002). Pain scores remained in the moderate to severe range (\u3e or =5 out of 10) for many days in the majority of patients. Results failed to reveal significant differences in pain scores and opiate utilization between patients who had short versus extended hospitalizations, and for those patients with frequent versus infrequent hospitalizations for pain. CONCLUSIONS: Despite opiate dosing within recommended guidelines, mean pain scores remain in the moderate to severe range for several days following hospitalization for VOE. Future research should explore the factors which influence pain scores, as well as improved pain assessment and management techniques