Pediatric Chronic Pain Clinic Research Articles

"Making Data the Drug": A Pragmatic Pilot Feasibility Randomized Crossover Trial of Data Visualization as an Intervention for Pediatric Chronic Pain.

Data tracking is a common feature of pain e-health applications, however, viewing visualizations of this data has not been investigated for its potential as an intervention itself. We conducted a pilot feasibility parallel randomized cross-over trial, 1:1 allocation ratio. Participants were youth age 12-18 years recruited from a tertiary-level pediatric chronic pain clinic in Western Canada. Participants completed two weeks of Ecological Momentary Assessment (EMA) data collection, one of which also included access to a data visualization platform to view their results. Order of weeks was randomized, participants were not masked to group assignment. Objectives were to establish feasibility related to recruitment, retention, and participant experience. Of 146 youth approached, 48 were eligible and consented to participation, two actively withdrew prior to the EMA. Most participants reported satisfaction with the process and provided feedback on additional variables of interest. Technical issues with the data collection platform impacted participant experience and data analysis, and only 48% viewed the visualizations. Four youth reported adverse events not related to visualizations. Data visualization offers a promising clinical tool, and patient experience feedback is critical to modifying the platform and addressing technical issues to prepare for deployment in a larger trial.

A Parent-Targeted Group Intervention for Pediatric Pain Delivered In-Person or Virtually: Feasibility, Acceptability, and Effectiveness.

Parents play integral roles in their youth's chronic pain and can experience elevated distress related to caregiving. This study examined a cognitive-behavior therapy-based parent-targeted group intervention, including understudied/novel resilience/risk (eg, distress, parenting self-regulation), and compared the effect of in-person versus virtual delivery format. (1) Adequate feasibility and acceptability (enrolment>33%, attendance >60%, attrition <25%, satisfaction ratings >90%), with higher indicators of feasibility in the virtual groups; (2) Significant improvements in parent psychological flexibility, protectiveness, distress, and parenting self-regulation at posttreatment that were maintained at follow-up, with no difference between delivery type. Parents were enroled from an outpatient pediatric chronic pain clinic and participated in the group intervention in-person or virtually; questionnaires were completed at baseline, posttreatment, and 3-month follow-up. Enrolment (55% in-person, 65% virtual) and attendance (86% in-person, 93% virtual) were higher, and attrition was lower than expected (4% in-person, 7% virtual). Satisfaction was high (4.95/5 in-person, 4.85/5 virtual); on written feedback, parents enjoyed connecting with other parents (27/56, 48%) the most. The least preferred were the virtual format (5/36, 14%) and timing of the group (6/52, 12%). There were no differences between delivery formats in feasibility/acceptability. The intervention significantly improved parents' psychological flexibility, protectiveness, distress, and parenting self-regulation over time. A small group difference favored the in-person format for psychological flexibility, and an interaction effect for parenting self-regulation was found. This standalone parent-targeted group intervention had positive effects on parent outcomes delivered either in-person or virtually.

Pain Widespreadedness, and Not Primary Pain Location, is Associated With Comorbid Symptoms in Children With Chronic Pain

Pediatric chronic pain represents heterogeneous diagnoses; often, primary pain location informs research classifications and treatment. In contrast, recent research has highlighted the role of widespread pain and this perspective has been adopted in assessments in specialty pediatric pain clinics. The lack of direct comparison between these 2 methods of categorizing pediatric chronic pain may hinder the adoption of evidence-based practices across the spectrum of care. Therefore, this study aimed to compare whether primary pain location or pain widespreadedness is more informative for pain-related symptoms in pediatric chronic pain. Youth (n=223) between the ages of 8 to 23 years (M=15.93, SD=2.11, 83% female) completed surveys upon intake at the pediatric chronic pain clinic. Free-text entries of primary pain location were coded into categories: headache, abdominal pain, and musculoskeletal pain. Additional domains assessed included widespread pain, pain interference, kinesiophobia, catastrophizing, anxiety, depression, sleep, and fatigue. Differences based on primary pain location only emerged for kinesiophobia, F(2150)=8.20, P<0.001, with the highest scores among those with musculoskeletal pain. In contrast, controlling for sex, age, and pain intensity, pain widespreadedness was associated with pain interference, pain catastrophizing, fatigue, anxiety, and depression (P<0.05). Pain widespreadedness was more consistently associated with pain-related outcomes among pediatric chronic pain patients than primary pain location, and body maps may be useful in determining a nociplastic pain mechanism to inform treatment. Improved assessment of pediatric pain mechanisms may help advance more precise treatment delivery.

Demographics, Diagnoses, Drugs, and Adjuvants in Patients on Chronic Opioid Therapy vs. Intermittent Use in a Tertiary Pediatric Chronic Pain Clinic.

Anywhere from 11.6% to 20% of pediatric and adolescent patients treated for chronic pain are prescribed opioids, but little is known about these patients. The purpose of this study was to determine the characteristics of patients on chronic opioid therapy (COT) and what therapies had been utilized prior to or in conjunction with COT. The study was a retrospective chart review of all chronic pain patients seen during 2020 with those patients on COT separated for analysis. A total of 346 unique patients were seen of which 257 were female (74.3%). The average age was 15.5 years. A total of 48 patients (13.9%) were identified as being on COT with an average age of 18.1 years. Of these, 23 (47.9%) were male which was significantly more than expected. The most common reason for patients to be receiving COT was palliative (13/48), and the second most common was sickle cell anemia (10/48). Patients on COT were significantly more likely to be male, be older, and to be concurrently prescribed benzodiazepines. Concurrent opioid and benzodiazepine therapy is a risk factor for respiratory depression and overdose. Further investigation into the increased proportion of males and benzodiazepine usage in patients on COT is warranted.

Synthetic Cannabinoid for the Treatment of Severe Chronic Noncancer Pain in Children and Adolescents

Background The prevalence of chronic pain in children and adolescents is high. In some patients, it can be severe and refractory to conventional treatment options. There is increasing interest in the use of cannabinoids for therapeutic purposes in children and adolescents. Nabilone, a synthetic cannabinoid, is approved in Canada for the treatment of nausea and vomiting associated with chemotherapy. It can also be used off label for treatment of chronic pain. Aims This study aims to characterize the use of nabilone for severe chronic pain in a pediatric population. Methods This is a retrospective cohort study of patients 18 years or younger who were prescribed nabilone for chronic pain in a tertiary multidisciplinary pediatric chronic pain clinic between July 1, 2013 and June 30, 2017. Results During the four-year study period, we screened the charts of 507 patients and identified a total of 28 patients (5.5%) who were treated with nabilone as part of their chronic pain treatment. Common indications for nabilone treatment include mixed neuropathic/nociceptive pain, abdominal pain, neuropathic pain, and spasticity. In all patients, nabilone was prescribed as an adjunctive treatment. 7 patients (25%) reported a slight improvement in pain symptoms. Side effects were reported by 21.4% of patients. The most common reported side effects were sedation and cognitive slowing. Conclusions Adjunctive treatment with nabilone may improve pain symptoms in a subset of pediatric chronic pain patients. Further research investigating the long-term safety and efficacy of nabilone in the treatment of chronic pain in children is needed.

Pediatric Chronic Pain, Resilience and Psychiatric Comorbidity in Canada: A Retrospective, Comparative Analysis.

Chronic pain compromises child and adolescent well-being and development. This study aimed to identify risk factors for chronic pain and exploration of how young people negotiate such risks and express resilience. We hypothesized children and youth with chronic pain would report greater prevalence of mental health disorders than the general population; and those demonstrating greater resilience would demonstrate less psychiatric comorbidity. A retrospective chart review was conducted for all patients (ages 7-17) attending the sole pediatric chronic pain clinic in Manitoba, from 2015 to 2019 (N = 116). Patients' demographic information and psychiatric illness burden were compared to provincial epidemiological data using Chi-Square tests. Pain sites, family history, psychiatric illness, psychosocial functioning, treatment history and treatment recommendations were explored. The sample was predominantly female (74%; N = 114). Sixty-eight percent of patients reported a family history of chronic pain. Thirty-seven percent of the patients (vs. 14.0% anticipated; N = 326 260) reported comorbid psychiatric disorder, X2 (1, N = 114) = 53.00, p < 0.001. Thirty-two percent reported diagnosis of mood and/or anxiety disorder (vs. 7.3%), X2 (1, N = 114) = 99.34, p < 0.001. Children and youth demonstrating resilience through engagement in more prosocial behaviors reported fewer psychiatric symptoms (rs = -0.292, N = 114, p = 0.002, Spearman's correlation). Female sex, family history, and lower socioeconomic status were associated with chronic pain. Psychiatric conditions were more prevalent in chronic pain patients than in the general population. Approaching chronic pain from a mind-body perspective, while building on patients' strengths, is central to informing treatment.

Examining Parent Adverse Childhood Experiences as a Distal Risk Factor in Pediatric Chronic Pain.

Objectives:Adverse childhood experiences (ACEs; ie, exposure to abuse, neglect, household dysfunction in childhood) are associated with poor mental and physical health outcomes across the lifespan. Emerging research suggests parent ACEs also confer risk for poor child outcomes. The relation between parent ACEs and child pain in youth with chronic pain has not yet been examined. The aim of the current longitudinal study was to examine the associations among parent ACEs, parent health, and child pain, in a clinical sample of youth with chronic pain.Methods:In total, 192 youth (75.5% female, 10 to 18 y old) and one of their parents (92.2% female) were recruited from tertiary pediatric chronic pain clinics in Canada. At baseline, parents completed self-report measures of ACEs, chronic pain status, anxiety and depressive symptoms, and posttraumatic stress disorder symptoms. At a 3-month follow-up, youth completed self-report measures of pain intensity and pain interference.Results:Regression and mediation analyses revealed that parent ACEs significantly predicted parent chronic pain status and depressive symptoms, but not parent anxiety or posttraumatic stress disorder symptoms. Moreover, parent ACEs were not significantly related to youth pain, either directly or indirectly through parent health variables.Discussion:Findings suggest that an intergenerational cascade from parent ACEs to parent health to child pain was not present in the current sample. Further research that examines the role of parent ACEs in the development of child chronic pain, as well as other risk and resiliency factors that may mediate or moderate the association between parent ACEs and child chronic pain, is needed.

Cross-Sectional Associations among Components of Injustice Appraisals and Functioning in Adolescents With Chronic Pain.

Pain-related appraisals, including pain-related injustice, impact the development and maintenance of chronic pain. This cross-sectional study aimed to examine the relationship between the cognitive-emotional components of pain-related injustice-blame/unfairness and severity/irreparability of loss-and functioning in a mixed sample of adolescents with chronic pain. Pediatric patients age 11-18 years (N = 408) completed forms assessing pain-related injustice, pain intensity, and physical and psychosocial functioning as part of their routine assessment in a pediatric chronic pain clinic between January 2014 and January 2019. A series of hierarchical regressions were used to evaluate the relationships among the separate components of pain-related injustice appraisals and functioning. Pain intensity and blame/unfairness appraisals were significantly associated with emotional functioning with blame/unfairness being the stronger association (β = -.27). Blame/unfairness appraisals, severity/irreparability appraisals, and pain intensity were significantly associated with physical functioning with pain intensity being the strongest association (β = .36). Pain intensity, blame/unfairness appraisals, and severity/irreparability appraisals were significantly associated with social functioning with blame/unfairness being the strongest association (β = -.34). Pain intensity and severity/irreparability appraisals were significantly associated with school functioning with severity/irreparability being the stronger association (β = -.19). These results lend further support to incorporating pain-related injustice appraisals in standard clinical pain assessments. Treatment practices should target the specific injustice appraisals and domains of functioning impacted for each pediatric patient with chronic pain.

ICD-11 Classification of Pediatric Chronic Pain Referrals in Ireland, with Secondary Analysis of Primary vs Secondary Pain Conditions.

ObjectiveTo classify pediatric chronic pain referrals in Ireland according to the classification system of the 11th version of the International Classification of Diseases (ICD-11). In addition, differences between primary and secondary pain groups were assessed.MethodsRetrospective review of complex pain assessment forms completed at the time of initial attendance at pediatric chronic pain clinics in Dublin, Ireland. Patients were classified as having a chronic primary (CPP) or chronic secondary (CSP) pain condition as per ICD-11 classification. Secondary analysis of between-group and within-group differences between primary and secondary pain conditions was undertaken.ResultsOf 285 patients coded, 123 patients were designated as having a CPP condition (77% of whom were assigned an adjunct parent code) and 162 patients as having a CSP condition (61% of whom were assigned an adjunct parent code). Between-group comparisons found that the lowest reported pain scores were higher in CPP than in CSP conditions. There were stronger correlations between parental pain catastrophizing and pain intensity, school attendance, and pain interference with social activities in the CSP group than in the CPP group.ConclusionsThe majority of children with both CPP and CSP were assigned multiple parent codes. There appears to be a gradient in the differences in biopsychosocial profile between CPP and CSP conditions. Additional field testing of the ICD-11 classification in pediatric chronic pain will be required.

Experience of Botulinum Toxin A Injections for Chronic Migraine Headaches in a Pediatric Chronic Pain Clinic.

Prevalence of chronic migraine in children can reach 7.7%, causing decreased school performance, difficulty with extracurricular activities (including sports, theater, or music), and changes in sleep and mood. Many studies confirm that botulinum toxin type A injections effectively alleviate chronic migraines in adults; however, the literature regarding children is sparse. This study aims to analyze the safety and effectiveness of botulinum type A injections in a group of pediatric patients diagnosed with chronic migraines in a pediatric pain clinic. In this retrospective (2013-2018) study, the effects of botulinum toxin type A injections were analyzed using data from 65 pediatric patients diagnosed with chronic migraines. The study group ranged from 11 to 18 years of age. A pediatric pain management physician administered the botulinum using the Phase 3 Research Evaluating Migraine Prophylaxis Therapy program protocol and followed the pain pattern. Dosages, tolerance, and side effects were measured. In this study, 74% of the patients tried more than 6 medications before the injections. There was a decrease in the visual analog scale score of 5.2 ± 2.2 points upon 6-week follow-up. The mean amount of medication used was 173.2 ± 35 units, and patients received an average of 2.8 ± 1.1 units/kg. Adverse events include one patient who developed dizziness and another who had low-grade fevers with enlarged cervical lymph nodes; both resolved within few minutes. This study supports the use of botulinum type A for chronic migraines in pediatric patients. Multicentered, randomized studies with larger population are needed to evaluate the long-term safety and efficacy of this therapy.

Exploring physiotherapy practice within hospital-based interprofessional chronic pain clinics in Ontario

ABSTRACT Background: Chronic pain affects one in five persons and is a leading contributor to years lived with disability and high health care costs. In 2016, the government of Ontario increased public funding for pediatric and adult hospital-based interprofessional chronic pain clinics (HICPCs) in Ontario, Canada, expanding the role of physiotherapy in chronic pain management in the province. This role has yet to be described in the literature. Aim: The aim of this study was to explore physiotherapy practice within HICPCs in Ontario. Methods: We conducted an interpretive description qualitative study based on semistructured interviews with physiotherapists employed in pediatric and adult HICPCs in Ontario. Interviews were audio recorded, transcribed verbatim, and reviewed for accuracy. We analyzed interview data using thematic analysis. Results: Ten physiotherapists who practiced in pediatric and adult HICPCs (n = 4 pediatric; n = 6 adult) in Ontario were interviewed between February and April 2020. We constructed five themes related to physiotherapy practice in this setting. Themes included (1) contributing a functional lens to care; (2) empowering through pain education; (3) facilitating participation in physical activity and exercise; (4) supporting engagement in self-management strategies; and (5) implementing a collaborative approach to whole-person care. Conclusions: Our results illuminate how physiotherapy practice within HICPCs in Ontario focuses on providing a collaborative and whole-person approach to care, with an emphasis on supporting patients to increase their functional capacity by promoting engagement in active chronic pain management strategies.

50 Bridging the gap between education and health: What youth need educators to know about chronic pain

Abstract Background Chronic pain is common and affects 20% of children and youth. Those with chronic pain often have a difficult time regularly attending school, with up to 50% of children and youth with chronic pain missing some school. Specific accommodations that benefit youth are unknown. Nearly half of parents of youth with chronic pain report their child’s grades dropped since pain onset. Both parents and youth report “moderate levels of interference” with learning. Most common accommodations include being sent to the nurse, being sent home and receiving extensions on assignments. While these strategies may be helpful for pain conditions expected to resolve, strategies that support staying in and succeeding at school are required for youth with chronic pain. Objectives This study aims to determine what educators need to know to best support youth with chronic pain in the academic setting. More specifically, 1) to determine what youth with chronic pain, parents of youth, educators, and healthcare professionals want educators to know about supporting students with chronic pain, and 2) to describe health professionals’ and educators’ attitudes and knowledge of pediatric chronic pain. Design/Methods Inclusion criteria include youth age 12-25 years with chronic pain and parents, health professionals and educators of youth with chronic pain. The recruitment strategy includes distribution of the survey via the Saskatchewan pediatric chronic pain clinic research contact lists, the Canadian Paediatric Society Section of Community Paediatrics listserve and social media. This online cross-sectional survey includes participant demographics and questions about accommodations noted to be helpful for youth with chronic pain. In addition, educator and health professional surveys include the 26-item Chronic Pain Myth Scale (CPMS). Results The study group includes 87 participants, 26 youth, 18 family/friends, 19 educators, and 24 health professionals. Some suggested school accommodations include: access to technology in class, teachers providing notes for students, education on chronic pain for teachers and students, and improved communication and collaboration between the youth, their healthcare team and educators. The majority of health professionals and educators report some knowledge, positive beliefs and attitudes towards people suffering from chronic pain (M=3.03, SD= .34). Conclusion Chronic pain is common and affects school attendance and achievement. Suggestions for accommodations to help those with chronic pain in the academic setting are made. Educators and health professionals indicated varying levels of knowledge, attitudes and beliefs, with some educators indicating they would like to receive education about chronic pain. Improved communication between school-based pupil support teams and health care teams is warranted.

Barriers to Outpatient Pediatric Chronic Pain Clinic Participation Among Referred Patients

Initial clinic evaluation among referred patients and factors limiting treatment initiation are not well characterized. We conducted a retrospective review of referrals to our outpatient pain clinic to identify intake visits and factors associated with treatment initiation among adolescents with chronic pain. We identified adolescents aged 13 to 18 years at the time of referral to clinic (2010-2016). Factors associated with completion of visits were evaluated using logistic regression. Patients who completed visits more frequently had private insurance than public or no insurance (P = .053). The most common reasons for caregiver decision not to attend the pain clinic included use of another pain clinic, that services were not wanted or no longer needed, and that their child was undergoing further testing. The current study demonstrated that patients with head pain were more likely to complete an intake visit, while there was a trend showing that lack of private insurance decreased this likelihood.

Clinical Features of Pediatric Complex Regional Pain Syndrome: A 5-Year Retrospective Chart Review.

Complex regional pain syndrome (CRPS) is a painful condition of a limb characterized by a constellation of symptoms. Little is known about the clinical features of pediatric CRPS, with fewer than a dozen studies published to date. The aim of this study was to explore the clinical course of pediatric CRPS, with emphasis on clinical features and disease outcomes. A secondary aim was to discern differences in clinical features of pediatric CRPS with and without related movement disorders, and between children who had a favorable and unfavorable outcome. We carried out a retrospective chart review of children with CRPS who presented to a pediatric Chronic Pain Clinic in Canada over a 5-year period (2012 to 2016). The study identified 59 children with CRPS (mean age: 12.7±2.5; 74.6% female; 72.9% lower extremity). In total, 87% (n=48) of children experienced complete resolution or significant improvement of CRPS, with a relapse rate of 15%. Overall, 25% (n=15) had a CRPS-related movement disorder. There were no differences in the clinical features of pediatric CRPS with or without related movement disorders. Children who experienced a favorable outcome had a significantly shorter symptom duration at the initial visit in comparison with children who experienced an unfavorable outcome. In this cohort, pediatric CRPS was most common in girls around the age of 12, usually in the lower extremity, and most experienced a favorable outcome. Further research is needed to better understand the prognosis and relapse rate of pediatric CRPS.

(143) Long Term Use of Intrathecal Bupivacaine for Treatment of “Failure to Thrive” in a Child

This 6-year-old female was diagnosed with failure to thrive at 4 months of age. She had multiple gastrointestinal interventions and tried multiple medications, including neuropathic medications. They made no significant difference in her feeding or pain status. By 18 months of age she was on total parenteral nutrition (TPN) and had had two infections. Due to her limited life expectancy, she was referred to the pediatric chronic pain clinic for any possible interventions. A celiac plexus block was performed on using 0.25% bupivaciane which resulted in 3 weeks of feeding through her GJ tube without significant pain when she was two years of age. After it wore off, a second block was performed with similar results the next month. An epidural trial of bupivicaine was successful for GJ feeding, so an intrathecal pump was implanted. Her oral baclofen dose and bupivacaine were infused through the pump. She has continued with intrathecal pumps over the last four years. Her growth went from 2% to 60% and her length increased in a similar fashion. Her bupivacaine dose has not changed. She had a small amount of morphine added after the first year of the pump, which has remained stable. She was able to decrease a number of oral medications, such as amitriptyline and lyrica. No increase in bupivacaine has been needed. No signs of tachyphylaxis has been seen. No neurologic issues other than with her GI tract, which has continue to have issues with functioning correctly, have been noted. Long term use of bupivacaine has not been previously reported. This pump is still working and she is still doing well.

Predictors of Referral to a Pediatric Outpatient Chronic Pain Clinic.

The main objectives of this study were to retrospectively characterize the rate of referrals to an outpatient chronic pain clinic among adolescents with chronic pain, and to identify factors associated with referral. Adolescents, 13 to 18 years of age seen in 2010 to 2015 at outpatient clinics associated with Nationwide Children's Hospital (NCH) and diagnosed with chronic pain were included if they lived near NCH and had not been previously referred to the NCH outpatient chronic pain clinic. Subsequent referrals to the pain clinic were tracked through December 2017 using a quality improvement database. Factors predicting referral were assessed at the initial encounter in another outpatient clinic and analyzed using multivariable logistic regression. The analysis included 778 patients (569 female; median age, 15 y), of whom 96 (12%) were subsequently referred to the chronic pain clinic, after a median period of 3 months. Generalized chronic pain (adjusted odds ratio, 1.8; 95% confidence interval, 1.1-3.1; P=0.023) and regional pain syndromes (adjusted odds ratio, 3.1; 95% confidence interval, 1.5-6.7; P=0.003) were associated with increased likelihood of referral. The referral was also more likely among female patients and among patients with a mental health comorbidity or recent surgery or hospitalization. Referrals to our chronic pain clinic were more likely for adolescents with generalized chronic pain, regional pain syndromes, and patients with mental health comorbidities. Recent hospitalization or surgery, but not recent emergency department visits, were associated with pain clinic referral. The multivariable analysis did not find disparities in referral by race or socioeconomic status.

Capturing Daily Disease Experiences of Adolescents With Chronic Pain: mHealth-Mediated Symptom Tracking.

BackgroundChronic pain is a common problem in adolescents that can negatively impact all aspects of their health-related quality of life. The developmental period of adolescence represents a critical window of opportunity to optimize and solidify positive health behaviors and minimize future pain-related disability and impaired work productivity. This research focuses on the development and evaluation of a smartphone-based pain self-management app for adolescents with chronic pain.ObjectiveThe objectives of this study were to characterize (1) the feasibility of deploying a mobile health (mHealth) app (iCanCope) to the personal smartphones of adolescent research participants; (2) adherence to daily symptom tracking over 55 consecutive days; (3) participant interaction with their symptom history; and (4) daily pain-related experiences of adolescents with chronic pain.MethodsWe recruited adolescents aged 15-18 years from 3 Canadian pediatric tertiary care chronic pain clinics. Participants received standardized instructions to download the iCanCope app and use it once a day for 55 days. Detailed app analytics were captured at the user level. Adherence was operationally defined as per the relative proportion of completed symptom reports. Linear mixed models were used to examine the trajectories of daily symptom reporting.ResultsWe recruited 60 participants between March 2017 and April 2018. The mean age of the participants was 16.4 (SD 0.9) years, and 88% (53/60) of them were female. The app was deployed to 98% (59/60) devices. Among the 59 participants, adherence was as follows: low (4, 7%), low-moderate (14, 24%), high-moderate (16, 27%), and high (25, 42%). Most (49/59, 83%) participants chose to view their historical symptom trends. Participants reported pain intensity and pain-related symptoms of moderate severity, and these ratings tended to be stable over time.ConclusionsThis study indicates that (1) the iCanCope app can be deployed to adolescents’ personal smartphones with high feasibility; (2) adolescents demonstrated moderate-to-high adherence over 55 days; (3) most participants chose to view their symptom history; and (4) adolescents with chronic pain experience stable symptomology of moderate severity.Trial RegistrationClinicalTrials.gov NCT02601755; https://clinicaltrials.gov/ct2/show/NCT02601755 (Archived by WebCite at http://www.webcitation.org/74F4SLnmc)

Parents’ experiences with pediatric chronic pain

ABSTRACT Introduction Pediatric chronic pain affects 15%–39% of children. Chronic pain can have significant negative effects on a child’s physical functioning, psychological and cognitive functioning, quality of life, and social functioning. Parents of children with chronic pain have reported being affected by their child’s condition. There have been few studies exploring the experiences of parents of children with chronic pain through a qualitative descriptive lens. Methods Thirteen parents from a pediatric chronic pain clinic participated in semistructured interviews. Concurrent data collection and analysis occurred to allow for follow-up of ideas that emerged during analysis. Three phases of analysis occurred: coding, categorizing, and developing themes. Results Three themes were developed: (1) Parents’ emotional journey; (2) chronic pain affects the entire family; and (3) social support is critical. Parents described emotions caused by the arduous process of obtaining a chronic pain diagnosis, followed by difficulties finding strategies to help their child manage the pain. Family life was affected because special accommodations often had to be made. Families were affected financially, incurring costs due to time off of work or additional therapies. Finally, parents stressed the importance of a strong social support network to provide assistance and flexibility for the changing needs of their child. Discussion This research identified a better understanding of the impact of pediatric chronic pain on parents. These findings can be used to provide and promote more effective treatments and education to improve the psychological, physical, and social well-being of children with pediatric chronic pain and their families.

Waiting for a Pediatric Chronic Pain Clinic Evaluation: A Prospective Study Characterizing Waiting Times and Symptom Trajectories

Chronic pain during childhood is prevalent and costly, but the access to interdisciplinary pain care is limited. Studies investigating adults waiting for pain clinic evaluation found that symptoms and quality of life deteriorate over the waiting period, but little is known about the experience of adolescents. Therefore, we aimed to determine wait list times and the longitudinal trends of pain and physical, mental, and social health over a 12-week period. In total, 97 adolescents, aged 10 to 18 years (M = 14.7 years, 82% female), waiting for evaluation at an interdisciplinary pediatric pain clinic completed assessments at enrollment and at 4-, 8-, and 12-week follow-up. We performed a review of the medical record of attendance patterns 12 months later. Twelve adolescents and their parents also completed qualitative interviews, describing their experience of waiting for evaluation. Wait times averaged 197.5 days (range = 69–758 days) from the time of referral to the first-attended appointment, and 86.6% of youths completed appointments. Longitudinal repeated measures analyses demonstrated little improvement in pain or other domains of functioning over the 12-week period. In qualitative interviews, families described anxious anticipation for the upcoming appointment, combined with frustration in waiting. Findings highlight the need to consider approaches to reduce wait times and provide early intervention for youths awaiting pain clinic evaluation.Perspective: This study extends the literature on the characteristics and symptom trajectories of adolescents during the wait period for interdisciplinary pain clinic evaluation, described previously only in adults with chronic pain. Findings demonstrated an average wait time of 6.5 months, during which youths’ pain and physical and social health remained impaired.

The association between pediatric chronic pain clinic attendance and health care utilization: A retrospective analysis

ABSTRACT Background Pediatric chronic pain is common, disabling, and costly. Children with chronic pain have high health care utilization in that they are seen by multiple health care providers, have frequent emergency room visits, and require many diagnostic tests. Pediatric health care utilization relating to direct health care services and associated costs of attendance at chronic pain clinics in Canada has not been well described. Aim The purpose of this project was to analyze the cost of physician services for individuals attending an interprofessional pediatric chronic pain clinic over an 8-year span including years before, during, and after treatment. Methods Physician claims were extracted from the Ontario Health Insurance Plan (OHIP) Claims History Database and retrospectively reviewed over 8 fiscal years for 100 new patients seen at the Chronic Pain Clinic at the Hospital for Sick Children. The utilization metrics analyzed included physician consultations and follow-up appointments, emergency room visits, lab tests, and diagnostic imaging. These data reflected 2 years prior to the first chronic pain clinic appointment, year of initial appointment, and five subsequent years. Results Health care utilization based on OHIP claims related to physician services and cost analysis showed an increase during the 2 years prior to first chronic pain clinic appointment, a decrease during the year of initial appointment, and a further decrease over the subsequent 5 years. Conclusions Further prospective research is required to establish whether attendance at the chronic pain clinic caused the reduction in health care services and costs and, if so, to identify the effective components of treatment.