Anne M. Lynch-Jordan

Objective: Juvenile fibromyalgia (JFM) is a complex chronic pain condition that remains poorly understood. The study aimed to expand the clinical characterization of JFM in a large representative sample of adolescents with JFM and identify psychological factors that predict pain interference.Methods: Participants were 203 adolescents (ages 12–17 years) who completed baseline assessments for the multisite Fibromyalgia Integrative Training for Teens (FIT Teens) randomized control trial. Participants completed the Pain and Symptom Assessment Tool, which includes a Widespread Pain Index (WPI; 0–18 pain locations) and Symptom Severity checklist of associated somatic symptoms (SS; 0–12) based on the 2010 American College of Rheumatology criteria for fibromyalgia. Participants also completed self‐report measures of pain intensity, functional impairment, and psychological functioning.Results: Participants endorsed a median of 11 painful body sites (WPI score) and had a median SS score of 9. Fatigue and nonrestorative sleep were prominent features and rated as moderate to severe by 85% of participants. Additionally, neurologic, autonomic, gastroenterologic, and psychological symptoms were frequently endorsed. The WPI score was significantly correlated with pain intensity and catastrophizing, while SS scores were associated with pain intensity and all domains of physical and psychological functioning. Depressive symptoms, fatigue, and pain catastrophizing predicted severity of pain impairment.Conclusion: JFM is characterized by chronic widespread pain with fatigue, nonrestorative sleep, and other somatic symptoms. However, how diffusely pain is distributed appears less important to clinical outcomes and impairment than other somatic and psychological factors, highlighting the need for a broader approach to the assessment and treatment of JFM.

Inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB. The process was begun at the request of Dystrophic Epidermolysis Bullosa Research Association International (DEBRA International), an organization dedicated to improvement of care, research and dissemination of knowledge for EB patients worldwide. An international panel of experts in pain and palliative care who have extensive experience caring for patients with EB was assembled. Literature was reviewed and systematically evaluated. For areas of care without direct evidence, clinically relevant literature was assessed, and rounds of consensus building were conducted. The process involved a face-to-face consensus meeting that involved a family representative and methodologist, as well as the panel of clinical experts. During development, EB family input was obtained and the document was reviewed by a wide variety of experts representing several disciplines related to the care of patients with EB. The first evidence-based care guidelines for the care of pain in EB were produced. The guidelines are clinically relevant for care of patients of all subtypes and ages, and apply to practitioners of all disciplines involved in the care of patients with EB. When the evidence suggests that the diagnosis or treatment of painful conditions differs between adults and children, it will be so noted. Evidence-based care guidelines are a means of standardizing optimal care for EB patients, whose disease is often times horrific in its effects on quality of life, and whose care is resource-intensive and difficult. The guideline development process also highlighted areas for research in order to improve further the evidence base for future care.

Patients presenting for treatment of chronic pain often believe that pain reduction must be achieved before returning to normal functioning. However, treatment programs for chronic pain typically take a rehabilitative approach, emphasizing decreasing pain-related disability first with the expectation that pain reduction will follow. This information is routinely provided to patients, yet no studies have systematically examined the actual trajectories of pain and disability in a clinical care setting. In this study of youth with chronic pain (N=94, 8 to 18 years), it was hypothesized that 1) functional disability and pain would decrease over the course of psychological treatment for chronic pain and 2) functional disability would decrease more quickly than pain intensity. Participants received cognitive behavioral therapy (CBT) for pain management (M=5.6 sessions) plus standard medical care. The Functional Disability Inventory and a Numeric Rating Scale of average pain intensity were completed by the child at every CBT session. Hierarchical linear modeling was conducted to examine the longitudinal trajectories of disability and pain. Standardized estimates of the slopes of change were obtained to test differences in rates of change between pain and disability. Results showed an overall significant decline in functional disability over time. Although pain scores reduced slightly from pretreatment to posttreatment, the longitudinal decline over treatment was not statistically significant. As expected, the rate of change of disability was significantly more rapid than pain. Evidence for variability in treatment response was noted, suggesting the need for additional research into individual trajectories of change in pediatric pain treatment.

Objectives: Catastrophizing is a coping style linked to poorer patient outcomes. Little attention has focused on the parent-adolescent dyad and catastrophizing as a shared coping style. The purpose of this study was to: (1) examine the effects of adolescent and parent pain catastrophizing on adolescent functioning and (2) explore concordance in catastrophizing in parent-adolescent dyads, with equal interest in outcomes of dyads with discordant coping styles. Methods: Pain intensity, catastrophizing, depressive symptoms, quality of life, and pain behaviors were assessed in adolescents (ages 11 to 17) presenting to a pediatric chronic pain clinic (N=240). Results: Significant correlations between (1) parent and adolescent catastrophizing; (2) catastrophizing and pain behaviors; and (3) catastrophizing and adolescent outcomes were found. Parents and adolescents were classified into concordant or discordant dyads based on catastrophizing with a majority of dyads (>70%) showing concordant coping styles. Among discordant dyads, functional disability and depressive symptoms were significantly higher in a dyad with a high catastrophizing adolescent and low catastrophizing parent. Discussion: Results provide further support for catastrophizing being a maladaptive coping strategy for adolescents with pain and their parents. Greater adolescent catastrophizing was related to increased pain behaviors and poorer adolescent functioning. Parent catastrophizing also seems related to poorer adolescent outcomes, and most parent-adolescent dyads showed concordance in use of catastrophizing, which may suggest a shared tendency for adaptive or maladaptive styles of coping with pain. Future research should investigate pain coping at a dyadic or family level to explore how family coping styles magnify distress and disability or buffer adolescents from such problems.

Pain behaviors provide meaningful information about adolescents in chronic pain, enhancing their verbal report of pain intensity with information about the global pain experience. Caregivers likely consider these expressions when making judgments about their adolescents' medical or emotional needs. Current validated measures of pain behavior target acute or procedural pain and young or non-verbal children, while observation systems may be too cumbersome for clinical practice. The objective of this research was to design and evaluate the Adolescent Pain Behavior Questionnaire (APBQ), a parent-report measure of adolescent (11-19 years) pain expressions. This paper provides preliminary results on reliability and validity of the APBQ. Parent-adolescent dyads (N=138) seen in a multidisciplinary pain management clinic completed the APBQ and questionnaires assessing pain characteristics, quality of life, functional disability, depressive symptoms, and pain catastrophizing. Principal components analysis of the APBQ supported a single component structure. The final APBQ scale contained 23 items with high internal consistency (α=0.93). No relationship was found between parent-reported pain behaviors and adolescent-reported pain intensity. However, significant correlations were found between parent-reported pain behaviors and parent- and adolescent-reported functional disability, pain catastrophizing, depressive symptoms, and poorer quality of life. The assessment of pain behaviors provides qualitatively different information than solely recording pain intensity and disability. It has clinical utility for use in behavioral treatments seeking to reduce disability, poor coping, and distress.