K. Barnett

Quality of life and emotional functioning in youth with chronic migraine and juvenile fibromyalgia.

Summary:Chronic pain in children is associated with significant negative impact on social, emotional, and school functioning. Previous studies on the impact of pain on children’s functioning have primarily used mixed samples of pain conditions or single pain conditions (eg, headache and abdominal pain) with relatively small sample sizes. As a result, the similarities and differences in the impact of pain in subgroups of children with chronic pain have not been closely examined. Objective:To compare pain characteristics, quality of life, and emotional functioning among youth with pediatric chronic migraine (CM) and juvenile fibromyalgia (JFM). Methods:We combined data obtained during screening of patients for 2 relatively large intervention studies of youth (age range, 10 to 18 y) with CM (N=153) and JFM (N=151). Measures of pain intensity, quality of life (Pediatric Quality of Life; PedsQL, child and parent-proxy), depressive symptoms (Children’s Depression Inventory), and anxiety symptoms (Adolescent Symptom Inventory-4—Anxiety subscale) were completed by youth and their parent. A multivariate analysis of covariance controlling for effects of age and sex was performed to examine differences in quality of life and emotional functioning between the CM and JFM groups. Results:Youth with JFM had significantly higher anxiety and depressive symptoms, and lower quality of life in all domains. Among children with CM, overall functioning was higher but school functioning was a specific area of concern. Discussion:Results indicate important differences in subgroups of pediatric pain patients and point to the need for more intensive multidisciplinary intervention for JFM patients.

Childhood Abuse in Pediatric Patients With Chronic Daily Headache

Recent studies have raised significant concern about the high prevalence of childhood abuse in adults with chronic daily headache (CDH). In a survey of 1348 adult migraine patients,1 it was found that 21% of patients reported a history of childhood physical abuse and 25% reported a history of sexual abuse. Data from the ACE (Adverse Childhood Experiences) study and other studies have also found that childhood physical abuse and other forms of maltreatment were significantly associated with migraine headache.2–4 Although retrospective studies seem to provide strong evidence for an association between childhood abuse and CDH, one prospective longitudinal study did not find a difference between those with and without a documented history of childhood abuse in terms of their risk for chronic pain in adulthood.2 These inconsistent results may be a result of varying methodologies, the effects of recall bias or because the connection between childhood abuse and pain in adulthood may be more complex. More prospective research is needed to investigate the connection between childhood abuse and CDH. Children with CDH form a significant proportion of patients seen in pediatric neurology clinics, accounting for up to one third of newly referred patients.5 There is little research examining the prevalence of childhood physical and sexual abuse in pediatric headache patients, and the impact of an early abuse history in terms of clinical presentation of pediatric CDH patients (headache frequency, severity, disability, and quality of life) is not known. As part of the screening process for a large treatment study for pediatric CDH, our research team gathered comprehensive clinical data, including data on exposure to trauma among the patients. The objectives of this investigation were to 1) specifically examine the prevalence of physical and sexual abuse in these clinically referred children and adolescents with CDH and 2) to compare headache characteristics, headache-related disability, depressive symptoms, and quality of life between those who reported a history of abuse and those who did not. Based on the adult literature, we hypothesized that we would find a higher rate of childhood abuse in CDH than in the general population and a rate similar to what has been reported in the adult literature (ie, approximately 20%). Also, we hypothesized that CDH patients with a positive history of abuse would have higher levels of headache-related disability, more depressive symptoms, and lower quality of life than those without a history of abuse.

Child pain catastrophizing mediates the relation between parent responses to pain and disability in youth with functional abdominal pain.

Objectives: Functional abdominal pain (FAP) in youth is associated with substantial impairment in functioning, and prior research has shown that overprotective parent responses can heighten impairment. Little is known about how a range of parental behaviors (overprotection, minimizing, and/or encouragement) in response to their childs pain interact with child coping characteristics (eg, catastrophizing) to influence functioning in youth with FAP. In this study, it was hypothesized that the relation between parenting factors and child disability would be mediated by childrens levels of maladaptive coping (ie, pain catastrophizing). Methods: Seventy-five patients with FAP presenting to a pediatric pain clinic and their caregivers participated in the study. Youth completed measures of pain intensity (Numeric Rating Scale), pain catastrophizing (Pain Catastrophizing Scale), and disability (Functional Disability Inventory). Caregivers completed measures of parent pain catastrophizing (Pain Catastrophizing Scale), and parent responses to child pain behaviors (Adult Responses to Child Symptoms: Protection, Minimizing, and Encouragement/Monitoring subscales). Results: Increased functional disability was significantly related to higher child pain intensity, increased child and parent pain catastrophizing, and higher levels of encouragement/monitoring and protection. Parent minimization was not related to disability. Child pain catastrophizing fully mediated the relation between parent encouragement/monitoring and disability and partially mediated the relation between parent protectiveness and disability. Conclusions: The impact of parenting behaviors in response to FAP on child disability is determined, in part, by the childs coping style. Findings highlight a more nuanced understanding of the parent–child interaction in determining pain-related disability levels, which should be taken into consideration in assessing and treating youth with FAP.

A Qualitative Examination of a New Combined Cognitive-Behavioral and Neuromuscular Training Intervention for Juvenile Fibromyalgia.

Objectives:Adolescents with juvenile fibromyalgia (JFM) are typically sedentary despite recommendations for physical exercise, a key component of pain management. Interventions such as cognitive-behavior therapy (CBT) are beneficial but do not improve exercise participation. The objective of this study was to obtain preliminary information about the feasibility, safety, and acceptability of a new intervention—Fibromyalgia Integrative Training for Teens (FIT Teens), which combines CBT with specialized neuromuscular exercise training modified from evidence-based injury prevention protocols. Materials and Methods:Participants were 17 adolescent females (aged 12 to 18 y) with JFM. Of these, 11 completed the 8-week (16 sessions) FIT Teens program in a small-group format with 3 to 4 patients per group. Patients provided detailed qualitative feedback via individual semistructured interviews after treatment. Interview content was coded using thematic analysis. Interventionist feedback about treatment implementation was also obtained. Results:The intervention was found to be feasible, well tolerated, and safe for JFM patients. Barriers to enrollment (50% of those approached) included difficulties with transportation or time conflicts. Treatment completers enjoyed the group format and reported increased self-efficacy, strength, and motivation to exercise. Participants also reported decreased pain and increased energy levels. Feedback from participants and interventionists was incorporated into a final treatment manual to be used in a future trial. Discussion:Results of this study provided initial support for the new FIT Teens program. An integrative strategy of combining pain coping skills via CBT enhanced with tailored exercise specifically designed to improve confidence in movement and improving activity participation holds promise in the management of JFM.

Qualitative Evaluation of Pediatric Pain Behavior, Quality, and Intensity Item Candidates and the PROMIS Pain Domain Framework in Children With Chronic Pain.

UNLABELLED As initial steps in a broader effort to develop and test pediatric pain behavior and pain quality item banks for the Patient-Reported Outcomes Measurement Information System (PROMIS), we used qualitative interview and item review methods to 1) evaluate the overall conceptual scope and content validity of the PROMIS pain domain framework among children with chronic/recurrent pain conditions, and 2) develop item candidates for further psychometric testing. To elicit the experiential and conceptual scope of pain outcomes across a variety of pediatric recurrent/chronic pain conditions, we conducted 32 semi-structured individual and 2 focus-group interviews with children and adolescents (8-17 years), and 32 individual and 2 focus-group interviews with parents of children with pain. Interviews with pain experts (10) explored the operational limits of pain measurement in children. For item bank development, we identified existing items from measures in the literature, grouped them by concept, removed redundancies, and modified the remaining items to match PROMIS formatting. New items were written as needed and cognitive debriefing was completed with the children and their parents, resulting in 98 pain behavior (47 self, 51 proxy), 54 quality, and 4 intensity items for further testing. Qualitative content analyses suggest that reportable pain outcomes that matter to children with pain are captured within and consistent with the pain domain framework in PROMIS. PERSPECTIVE PROMIS pediatric pain behavior, quality, and intensity items were developed based on a theoretical framework of pain that was evaluated by multiple stakeholders in the measurement of pediatric pain, including researchers, clinicians, and children with pain and their parents, and the appropriateness of the framework was verified.

Pressure Pain Threshold and Anxiety in Adolescent Females with and without Juvenile Fibromyalgia: A Pilot Study.

Objectives: Reduced pain thresholds have been documented in adult fibromyalgia, but there are no quantitative studies of altered pain sensitivity in adolescents with juvenile fibromyalgia (JFM). The current study examined differences in pressure pain sensitivity between adolescent females with JFM and healthy controls. The relationship between levels of anxiety and pain were also examined. Methods: A total of 34 JFM (15.4±1.4 y old) and 31 controls (14.5±1.3 y old) completed self-report measures of pain and anxiety. Pressure pain threshold was assessed (palm and forehead sites) with a hand-held algometer. Participants indicated the first sensation of pain and then rated the intensity of pain on a Numerical Rating Scale. Results: Adolescents with JFM exhibited greater sensitivity to pressure pain compared with controls. While the difference between JFM and controls was only observed at the forehead, the intensity of pain produced by the pressure algometry at both sites was significantly higher in the JFM participants compared with controls. Correlations between clinical pain and anxiety were significant for the JFM group only. No relationships were observed between anxiety and pressure pain for either group. Discussion: This study is a first step toward investigating mechanisms of altered pain processing in adolescents with JFM. Adolescents with JFM were found be more sensitive to pressure pain than their healthy peers, which suggests a propensity for sensitization of peripheral and/or central nociceptive information often reported in adult fibromyalgia, and which does not appear to be affected by anxiety.

Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers

BackgroundPatient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change.MethodsWe identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent “just enough improvement to make a difference.”ResultsFor fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom.ConclusionsWe estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.

THU0342 Establishing Clinical Meaning and Severity Cut-Points of Patient Reported Outcome Measures Scores in Juvenile Idiopathic Arthritis

Background The Patient Reported Outcomes Measurement Information System (PROMIS) initiative uses a mixed methods approach, including item response theory to develop patient reported outcome measures (PROs) for self-assessment of physical, mental, and social health across disease conditions. Item level calibration allows for computer adaptive testing or use of brief “short forms” to reduce respondent burden. PROs are used increasingly in health care. A framework to interpret scores according to degree of clinical severity of a health condition would enhance their practical use. Use of PROs in evaluation of treatment effectiveness over time requires establishment of minimal important differences (MID) in change scores. Objectives To estimate clinically relevant cut-points for scores (none–mild-moderate - severe) and MIDs for PROMIS pediatric measures we previously examined in a validation study in a JIA cohort. Methods We identified clinical severity thresholds and MID for measures of mobility, upper extremity (UE) function, fatigue, and pain interference working with JIA patients, parents of JIA patients, and clinicians using standard setting methodology modified from educational testing. Data from PROMIS item bank longitudinal validation collected on 121 JIA patients was used to develop clinical vignettes across a range of symptom severity. Vignettes were created based on most likely item responses at different levels on the T score metric [mean =50; SD =10]. Vignettes were anchored at 5-point intervals (0.5 SDs). Parents, patients, and clinicians participated in separate one-day meetings. Vignettes were ordered and placed on cards. Panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut points (i.e., none /mild problems, mild/moderate, moderate/severe). Cut scores were defined as mean score for boundary vignettes. To define MIDs, panelists responded to items to represent “just enough improvement to make a difference”. Average change scores served as estimates of MID. Results For pain interference, mobility, and UE, patients set higher cut points for severity than parents, typically by 0.5 SD. For function measures cut points were concordant between patients and clinicians for moderate and severe categories, but clinicians saw mild disability where patients reported none. For fatigue and pain, clinicians rated cutoffs for severe were 0.5 SD below patient ratings. Size of MID varied according to severity classification of the symptom. Clinicians consistently estimated MIDs smaller than parents. Patient MID estimates varied in relation but tended to be between clinicians and parents estimates. MIDs estimated by the panelists were typically larger than the MIDs determined using statistical methods. Conclusions We used a modified educational standard setting method to estimate clinically relevant cut points to classify severity for PROMIS measures of mobility, UE, fatigue, and pain interference. Parallel exercises identified these cut points from the perspectives of JIA patients, parents and clinicians. We explored a novel means of determining MID from the patient/parent/clinician perspective for meaningful interpretation of PROMIS measures in a clinical setting. References Cook KF, Qual Life Res. 2014 Aug 23. Cella D, Qual Life Res. 2014 Dec;23(10):2651-61. Disclosure of Interest None declared