Use of Smartphones to Prospectively Evaluate Predictors and Outcomes of Caregiver Responses to Pain in Youth with Chronic Disease.

This study examined outcomes and predictors of different types of responses to child pain used by caregivers of youth with chronic disease. Sixty-six children and adolescents (ages 7-18) with juvenile idiopathic arthritis answered questions about pain, pain interference in activities, and mood on a smartphone three times per day for one month, while a caregiver contemporaneously answered questions about their own mood and use of protecting, monitoring, minimizing, or distracting responses to their child's pain. Multilevel models were used to evaluate (a) how a child's pain and pain interference changes after a caregiver uses different types of pain responses; (b) the extent to which caregiver responses to pain vary across days; and (c) whether variability in caregiver responses to pain is predicted by changes in child pain characteristics, child mood, and/or caregiver mood. Results showed that children's pain intensity and pain interference increased following moments when caregivers used more protective responses, whereas children's pain interference decreased following times when caregivers responded with minimizing responses. Caregiver pain responses varied considerably across days, with caregivers responding with more protecting and monitoring responses and fewer minimizing responses at moments when their child reported high levels of pain unpleasantness and pain interference. Caregivers also were found to respond with fewer protective responses at moments when they themselves were in a more positive mood. Implications for clinical recommendations and future studies are discussed.

Prospective Mediation Models of Sleep, Pain, and Daily Function in Children With Arthritis Using Ecological Momentary Assessment.

OBJECTIVES: Sleep is an emerging area of concern in children with juvenile idiopathic arthritis (JIA). Research shows the presence of poor sleep quality and related adverse outcomes in pediatric pain populations, including JIA, but few studies have examined the prospective patterns of association between sleep and associated outcomes. This prospective study evaluated the direction and magnitude of associations between subjective sleep characteristics (sleep quality, difficulty initiating sleep, and sleep duration), pain intensity, and functional limitations in children with JIA. We hypothesized that pain intensity would partially mediate the relationship between sleep and functional limitations. METHODS: Children and adolescents with JIA (n=59; age range, 8 to 18 y) recruited during clinic visits, completed smartphone-based diaries for 1 month. Subjective sleep characteristics were reported each morning; pain and functioning were assessed 3 times daily. RESULTS: As hypothesized, the associations between sleep quality and functional limitations and between difficulty initiating sleep and functional limitations were partially mediated by pain intensity, at any given moment (z=-3.27, P=0.001, z=2.70, P<0.05). Mediation was not detected in a model testing the association between sleep duration, pain intensity, and functional limitations (z=-0.58, P=0.56). DISCUSSION: Results suggest that sleep is integral to understanding the momentary association between pain intensity and functioning in children with JIA.

Self-reported pain and disease symptoms persist in juvenile idiopathic arthritis despite treatment advances: an electronic diary study.

OBJECTIVE: To use electronic diaries (e-diaries) to determine whether pain, stiffness, and fatigue continue to be common, disabling symptoms in children with juvenile idiopathic arthritis (JIA) despite the use of aggressive treatments in contemporary medical management. METHODS: Fifty-nine children with JIA (ages 8-18 years) provided ratings of pain, stiffness, and fatigue intensity and functional limitations using a smartphone e-diary 3 times each day for 1 month. Medication information was collected via parent report and checked for accuracy by chart review. Descriptive analyses were conducted to determine typical symptom intensity, frequency, and variability. Multilevel modeling was used to analyze associations between symptoms and functional outcomes and between medication use and symptom intensity. RESULTS: Children reported moments of pain in 66% of e-diary entries. No children were entirely pain-free across the reporting period. In 31% of all e-diary entries the visual analog scale score for pain was >40 (high pain intensity), with 86% of children reporting a high level of pain at least once during the study period. The mean ratings of pain, stiffness, and fatigue intensity were in the mild-to-moderate range. Medication class was not a reliable predictor of differences in symptom intensity, even though 79% of children were prescribed a disease-modifying antirheumatic drug and 47% were prescribed a biologic agent. Moments of higher pain intensity and higher stiffness intensity were each uniquely predictive of higher concurrent functional limitations. CONCLUSION: Self-reported pain, stiffness, and fatigue continue to be common in children with JIA, despite contemporary advances in treatment strategies, including use of biologic agents. These findings are surprisingly consistent with previous results from research using daily paper diaries in the pre-biologics era. There remains a pressing and ongoing need to optimize pain and symptom management in JIA.

The health education for lupus study: a randomized controlled cognitive-behavioral intervention targeting psychosocial adjustment and quality of life in adolescent females with systemic lupus erythematosus.

INTRODUCTION: To examine in a randomize controlled feasibility clinical trial the efficacy of a cognitive-behavioral intervention designed to manage pain, enhance disease adjustment and adaptation and improve quality of life among female adolescents with systemic lupus erythematosus. METHODS: Female adolescents (n = 53) ranging in age from 12 to 18 years were randomly assigned to 1 of 3 groups including a cognitive-behavioral intervention, an education-only arm and a no-contact control group. Participants were assessed at baseline, postintervention and at 3- and 6-month intervals after completion of the intervention. RESULTS: No significant differences were revealed among the 3 treatment arms for any of the dependent measures at any of the assessment points. For the mediator variables, a posthoc secondary analysis did reveal increases in coping skills from baseline to postintervention among the participants in the cognitive-behavioral intervention group compared with both the no-contact control group and the education-only group. CONCLUSION: Although no differences were detected in the primary outcome, a possible effect on coping of female adolescents with systemic lupus erythematosus was detected in this feasibility study. Whether the impact of training in the area of coping was of sufficient magnitude to generalize to other areas of functioning, such as adjustment and adaptation, is unclear. Future phase III randomized trials will be needed to assess additional coping models and to evaluate the dose of training and its influence on pain management, adjustment and health-related quality of life.

Parent perceptions of child vulnerability are associated with functioning and health care use in children with chronic pain.

CONTEXT: The extent to which parent variables are associated with the level of disability experienced by children with persistent pain has been an area of increasing research. OBJECTIVES: To evaluate the extent to which parent perceptions of their child's vulnerability are associated with functioning and health care utilization among children with persistent pain. We also evaluated whether perceptions of child vulnerability contribute to an indirect relationship between parent distress and child functioning and/or child health care utilization. METHODS: The study sample comprised 87 patients aged 6-18 years and a parent attending a chronic pain clinic. Children completed questionnaires on functional limitations, and parents completed questionnaires on parent distress, perceptions of child vulnerability, and extent of the child's pain-related health care utilization. Hierarchical regression and bootstrapping mediation analyses were used to test study hypotheses. RESULTS: Perceptions of child vulnerability were found to be clinically elevated in nearly half (46%) of parents/caregivers, and average child functional ability for the sample was substantially lower than healthy norms. Parent perceptions of greater child vulnerability were significantly associated with poorer child functioning and more child pain-related health care utilization regardless of child age, sex, and duration of persistent pain. Parent distress was found to be indirectly related to child health care utilization through parent perceptions of child vulnerability but directly related to child functioning. CONCLUSION: Parent perceptions of child vulnerability appear important for understanding levels of child functional limitations and health care utilization among children with chronic pain.

Emotion regulation predicts pain and functioning in children with juvenile idiopathic arthritis: an electronic diary study.

OBJECTIVES: This study utilized e-diaries to evaluate whether components of emotion regulation predict daily pain and function in children with juvenile idiopathic arthritis (JIA). METHODS: 43 children ages 8-17 years and their caregivers provided baseline reports of child emotion regulation. Children then completed thrice daily e-diary assessments of emotion, pain, and activity involvement for 28 days. E-diary ratings of negative and positive emotions were used to calculate emotion variability and to infer adaptive emotion modulation following periods of high or low emotion intensity. Hierarchical linear models were used to evaluate how emotion regulation related to pain and function. RESULTS: The attenuation of negative emotion following a period of high negative emotion predicted reduced pain; greater variability of negative emotion predicted higher pain and increased activity limitation. Indices of positive emotion regulation also significantly predicted pain. CONCLUSIONS: Components of emotion regulation as captured by e-diaries predict important health outcomes in children with JIA.

Parent pain responses as predictors of daily activities and mood in children with juvenile idiopathic arthritis: the utility of electronic diaries.

The present study used electronic diaries to examine how parent responses to their child's pain predict daily adjustment of children with juvenile idiopathic arthritis (JIA). Nine school-aged children with JIA along with one of their parents completed thrice-daily assessments of pain-related variables, activity participation, and mood using handheld computers (Palm pilots) for 14 days, yielding a potential of 42 child and parent assessments for each dyad. Children provided information on current pain level, mood, and participation in social, physical, and school activities. Parents independently rated their own mood as well as their behavioral responses to their child's pain at the same time points using a separate handheld computer. Results of multilevel modeling analyses demonstrated that use of "protective" pain responses by parents significantly predicted decreases in child activity and positive mood, with an even stronger inverse relationship between protective pain response and positive mood observed in children with higher than average disease severity. Protective pain responses were not found to be significantly predictive of daily negative mood in children. The use of "distracting" responses by parents significantly predicted less child activity restrictions but only in children having higher disease severity. There also was an unexpected trend in which parent use of more distracting pain responses tended to be associated with lower child positive mood. These preliminary findings suggest the importance of the parent in influencing adjustment in children with JIA and lend support to the incorporation of parents into comprehensive pain management approaches. The potential benefits of using electronic daily diaries as a strategy to examine pain and adjustment in children with JIA pain are discussed.

Social functioning and facial expression recognition in survivors of pediatric brain tumors.

OBJECTIVE: To assess social functioning and facial expression recognition skill in survivors of pediatric brain tumors (BT) as compared to children with juvenile rheumatoid arthritis (JRA). METHODS: The social functioning of 51 survivors of BT and 31 children with JRA was assessed using a facial expression recognition task, questionnaire ratings of social functioning, and an IQ screener. RESULTS: After controlling for estimated IQ, survivors of BT made significantly more errors interpreting adult facial expressions as compared to children with JRA. Additionally, history of therapy and diagnosis age predicted performance on the child portion of the facial recognition task. Finally, survivors of BT demonstrated significantly impaired social functioning across multiple measures when compared to children with JRA. CONCLUSIONS: Survivors of pediatric BT showed significant deficits in social functioning as compared to an illness comparison group. Errors in facial expression recognition represent another method for evaluating deficits that contribute to social outcomes.

Assessment and management of pain syndromes and arthritis pain in children and adolescents.

Chronic musculoskeletal pain, whether it is idiopathic or disease-related, is common in childhood. Pediatric rheumatologists and other pediatric health care providers must understand the epidemiology of musculoskeletal pain as part of childhood, diagnose pain syndromes in children and rule out rheumatic disease, and be willing to initiate treatment of pain in children and adolescents. Practitioners' ability to carry out these tasks is enhanced by an awareness of the biopsychosocial model of pain, which integrates biologic, environmental, and cognitive behavioral mechanisms in describing the causes and maintenance of children's pain. A growing body of research in rheumatic diseases, such as JIA, and idiopathic musculoskeletal pain syndromes, such as JPFS, highlights the importance of environmental and cognitive behavioral influences in the pain experience of children in addition to the contribution of disease activity. These influences include factors innate in the child, such as emotional distress, daily stress, coping, and mood, and familial factors, such as parental psychologic health, parental pain history, and the nature of family interactions. Addressing these issues, while providing aggressive traditional medical management, optimizes pain treatment and improves overall quality of life for children who have musculoskeletal pain.

Pediatric pain syndromes and management of pain in children and adolescents with rheumatic disease.

This article introduces important issues related to pain in children with musculoskeletal pain syndromes and rheumatic disease, using juvenile primary fibromyalgia syndrome (JPFS) and juvenile idiopathic arthritis (JIA) as models. A brief summary of the prevalence of pain in healthy children is followed by a summary of existing pain-assessment techniques. The remainder of the article describes the pain experience of children with JPFS and JIA and discusses issues related to pain management.

Pain, stiffness, and fatigue in juvenile polyarticular arthritis: contemporaneous stressful events and mood as predictors.

OBJECTIVE: To analyze patterns of stress, mood, disease symptoms, and activity reduction in children with polyarticular arthritis, using a prospective daily diary method. METHODS: For a 2-month period, 51 children with polyarticular arthritis (mean age 12.4 years, 65% female) completed daily diaries that included measures of symptoms of pain, stiffness, and fatigue, as well as stress, mood, and activity reduction. Functional status and disease activity were assessed at the initial and followup evaluations with use of the Childhood Health Assessment Questionnaire, physician global assessment, joint count, and laboratory testing. RESULTS: Children reported having pain, stiffness, and fatigue on >70% of days, with significant variability in symptom levels. Results revealed significant same-day relationships between stress, mood, and disease symptoms, after controlling for covariates. Specifically, daily fluctuations in both stress and mood were predictive of increased pain, stiffness, and fatigue. Increases in daily stress, mood, and disease symptoms were also significantly related to decreased participation in social activities on a day-to-day basis. Only mood and stiffness were predictors of a cutback in school attendance. CONCLUSION: Stress and mood are important predictors of daily disease symptoms in children with polyarticular arthritis. Moreover, daily fluctuations in stress, mood, and disease symptoms are predictive of aspects of daily function, including participation in school and social activities. Thus, health care providers should solicit daily symptom reports when making decisions regarding clinical management. Nonpharmacologic interventions such as cognitive-behavioral therapy and stress management may be useful adjuvant therapy when treating the disease symptoms of children with polyarticular arthritis.

Daily pain and symptoms in children with polyarticular arthritis.

OBJECTIVE: To analyze patterns of daily pain, stiffness, and fatigue related to juvenile arthritis; to examine the relationships of demographics, disease severity, and psychological adjustment to daily disease symptoms; and to examine daily disease symptoms as predictors of reduced participation in school and social activity. METHODS: For a 2-month period, 41 children with polyarticular juvenile arthritis completed daily diaries that included measures of symptoms and function. Children also underwent an initial evaluation and 4 followup evaluations that included a joint count, laboratory testing, and completion of questionnaires assessing physical and psychosocial functioning. RESULTS: Children reported having pain an average of 73% of days, with the majority of children (76%) reporting pain on >60% of all days. On average, children described the intensity of their daily pain as being in the mild to moderate range; however, a significant subgroup (31%) reported pain in the severe range. Higher physician global assessment ratings, increased functional disability, and increased anxiety were significantly associated with increased daily pain and other daily symptoms. Multilevel random-effects analyses indicated that increased daily symptoms of pain, stiffness, and fatigue were significant predictors of reduced participation in school and social activities. CONCLUSION: Physicians should consider treating pain more aggressively in children with arthritis, in order to preserve function in school and social domains, as well as physical function. Moreover, optimal pain management in children with arthritis should include therapeutic regimens addressing anxiety as well as standard pharmacologic interventions.

Brief report: Parental perceptions of child vulnerability in children with chronic illness.

OBJECTIVE: To determine the extent to which parental perceptions of child vulnerability predict school and social adjustment in children with chronic illness. METHODS: Sixty-nine child-parent dyads were recruited from pediatric rheumatology and pulmonary clinics. Parents completed a self-report measure of parental perceptions of child vulnerability. Children completed measures of social adjustment. Parents also provided written permission to obtain school attendance records. Physicians provided a global assessment of children's disease severity. RESULTS: Increased parental perceptions of child vulnerability were related to increased social anxiety in children, even after controlling for child age and disease severity. Lower levels of parental education related to both increased perceptions of child vulnerability and increased school absences. CONCLUSIONS: Health providers should assess parental beliefs and parenting practices in assessing the adjustment of children with chronic illness. Moreover, interventions aimed at enhancing child adjustment to chronic illness might best target parents as well as children.