Development of an observation method for assessing pain behaviors in children with juvenile rheumatoid arthritis

Objective. To develop an observation method for assessing pain behaviors in children with juvenile rheumatoid arthritis (JRA). Methods. Thirty children with JRA performed a standardized sequence of activities for video recording, and correlations between the pain behaviors observed on the videotapes and established measures of pain, depression, and functional disability were determined. Results. Pain behaviors were reliably observed (kappa coefficients 0.53-0.79). Total pain behaviors were significantly correlated with subjective reports of pain (r = 0.50) and disability levels (r = 0.64). These behaviors were not significantly associated with children's depression ratings (r = 23). Conclusion. The results indicate that the behavioral observation method provides a reliable and valid measure of pain associated with JRA. Measurement of pain behaviors may be especially useful in treatment outcome studies because these behaviors are relatively independent of depression.     

Pain coping strategies in children with juvenile primary fibromyalgia syndrome: Correlation with pain,physical function,and psychological distress

Objectives . The purpose of this study was twofold: (1) to describe the coping strategies used by children with juvenile primary fibromyalgia syndrome (JPFS), and (2) to examine how pain coping relates to measures of pain, disability/function, psychological distress, and pain behavior. Methods . Sixteen children with JPFS completed the Child Version of the Coping Strategies Questionnaire (CSQ-C), the visual analog scale for pain, the McGill Pain Questionnaire, the Fibromyalgia Impact Questionnaire modified for children, the Arthritis Impact Measurement Scales 2, and the Symptom Checklist-90-Revised. Subjects also underwent pain behavior observation. Pearson's product moment correlations were conducted to examine the relationship of coping to measures of pain and disability. Results . The Pain Control and Rational Thinking composite factor score on the CSQ-C correlated with measures of pain severity, functional disability, and psychological distress. Results supported the internal reliability of the CSQ-C in assessing pain coping. Conclusions . These results suggest that the CSQ-C may provide a reliable measure for assessing variations in pain coping in JPFS patients. Behavioral interventions aimed at increasing the perception of pain control may be beneficial in treating JPFS.     

Evaluation of a psychological treatment package for treating pain in juvenile rheumatoid arthritis

We examined the utility of psychological treatment procedures for children with high levels of pain associated with juvenile rheumatoid arthritis (JRA). By the use of a multiple baseline across subjects design, four children were assigned to an immediate treatment group, and four children to a delayed treatment group. The six-session treatment included relaxation training, electromyogram, and thermal biofeedback for the child; mothers were trained in the use of behavioral techniques for managing physical therapy and school attendance. Visual inspection of the data indicates small changes on children's self-reported pain diary scores for mean pain and ratings of high (greater than 5 on a 10-point visual analogue scale) pain periods, with 50% to 62% showing at least a 25% reduction in pain immediately after treatment, and 62% to 88% showing a 25% reduction by 6-month follow-up. Maternal reports of changes paralleled those of the children. Comparisons of Mann-Whitney U-tests conducted pre- and posttreatment indicated no differences for children's ratings of mean pain or + 5 pain ratings between the immediate and delayed treatment groups; greater improvement for the immediate treatment group was noted on maternal reports of both mean pain (p < 0.05) and +5 pain (p < 0.5) ratings. The reduction of pain reports from pretreatment to follow-up was significant for children's mean pain (p = 0.02), +5 pain ratings (p = 0.02), and mother's reports of mean pain (p = 0.03) and +5 pain periods (p = 0.01). Maternal reports of the number of pain-related behaviors that the child exhibited also declined (p < 0.05). No reduction in physical therapist's ratings of pain during evaluation were noted. No increases in maternal reports of child's psychological adjustment problems were reported following treatment. Results provide modest support for the use of psychological interventions with patients with JRA.     

Parental coping,depressive symptoms,and children's asthma control and school attendance in low-income,racially, and ethnically diverse urban families

Objective: Low-income urban children of color are at elevated risk for poor asthma control. This cross-sectional study examined associations among parents' coping (primary control, secondary control, and disengagement), parental depressive symptoms, and children's asthma outcomes (asthma control and school attendance) in a predominantly low-income, racially/ethnically diverse sample of families. Methods: Parents (N = 78; 90% female) of children (33% female; 46% Black; 38% Latino) aged 5–17 years (M = 9.5 years) reported on their own coping and depressive symptoms, their child's asthma control, and full and partial days of school missed due to asthma. Results: Parents' secondary control coping (i.e., coping efforts to accommodate/adapt to asthma-related stressors) was negatively correlated, and disengagement coping (i.e. coping efforts to avoid/detach from stressors) was positively correlated, with their depressive symptoms. Secondary control coping was also correlated with fewer partial days of school missed. Primary control coping (i.e., coping efforts to change stressors) was not associated with depressive symptoms or asthma outcomes. Parents' depressive symptoms were also positively correlated with poorer asthma control and partial days of school missed. Regression models showed direct and indirect effects of secondary control and disengagement coping on asthma outcomes via depressive symptoms, after controlling for demographic factors. Conclusions: Parents' secondary control and disengagement coping are related to children's asthma outcomes. Secondary control coping may support parents' mental health and children's asthma control in low-income urban families.     

An educational needs assessment of children with juvenile rheumatoid arthritis

Objective. Our objective is to describe the use of the PRECEDE model (predisposing, reinforcing, and enabling causes in educational diagnosis and evaluation) to organize needs assessment data in order to define self-management behaviors and plan an educational intervention for children with juvenile rheumatoid arthritis (JRA) and their famihies. Methods. Analysis was done of needs assessment data collected from several sources: 1) literature review, 2) survey of parents of 51 children with JRA, 3) group interview of seven parents of children with JRA, 4) results of pilot programs, and 5) clinical experience of an interdisciplinary pediatric rheumatology team. Results. Two sets of interrelated behavioral factors were identified through the needs assessment: 1) those related to managing the school environment to facilitate optimal participation and to minimize schoolrelated disability, and 2) those related to treating pain and stiffness, intervening in the disease process, and preserving joint function. Conclusion. Both of these sets of behavioral factors may be related to the optimization of children's mobility, joint function, and autonomy of activities of daily living and should be targets of an educational intervention.     

A family retreat as a comprehensive intervention for children with arthritis and their families

Objective . Family resources and coping skills are important to adaptation to pediatric chronic illness. Psychological and educational interventions have been found to enhance the coping skills of children with juvenile rheumatic disease (JRD) and their families. We examined the efficacy of a 3-day family retreat as a multidisciplinary, comprehensive treatment. Methods . Children with JRD and their caregivers completed questionnaires assessing the children's behavioral and emotional functioning, pain, strain on caregivers' work and leisure activities, and caregivers' psychological distress before and 6 months after the family retreat. Principal caregivers were both parents for 16 children, mothers only for 10 children, and an aunt for 1 child. Results . Improvements were found in children's emotional functioning, strain on caregivers' work, and strain on caregivers' leisure activities. Reductions in reported pain were not consistently revealed. Conclusions . Family retreats are an efficacious, multidisciplinary approach to helping families of children with JRD cope with the disease and its manifestations. Importantly, retreats offer a comprehensive intervention package that might not be available to families on an individual basis.     

Measurement of health status in children with juvenile rheumatoid arthritis

Objective. To develop and validate a self- or parent-administered instrument for measuring functional status in children with juvenile rheumatoid arthritis (JRA). Methods. We adapted the Stanford Health Assessment Questionnaire (HAQ) for use in children ages 1–19 years, by adding several new questions, such that for each functional area, there was at least 1 question relevant to children of all ages. The face validity of the instrument was evaluated by a group of 20 health professionals and parents of 22 healthy children. The questionnaire was then administered to parents of 72 JRA patients (mean age 9.1 years, onset type systemic in 16, polyarticular in 21, pauciarticular in 35). Results. The instrument showed excellent internal reliability (Cronbach's α = 0.94), with a mean inter-item correlation of 0.6. The convergent validity was demonstrated by strong correlations of the Disability Index (average of scores on all functional areas) with Steinbrocker functional class (Kendall's tau b = 0.77, P < 0.0001), number of involved joints (Kendall's tau b = 0.67, P < 0.0001), and morning stiffness (Kendall's tau b = 0.54, P < 0.0001). Spearman's correlation coefficient between Disability Index scores from questionnaires administered to parents and those from questionnaires administered to older children (>8 years) was 0.84 (n = 29; P < 0.001), showing that parents can accurately report for their children. The test–retest reliability, studied at a 2-week interval, revealed virtually identical Disability Index scores measured on the 2 occasions (0.96 versus 0.96; P > 0.9 by paired t-test; Spearman's correlation coefficient = 0.8, P < 0.002). Conclusion. The Childhood HAQ, which takes less than 10 minutes to complete, is a valid, reliable, and sensitive instrument for measuring functional status in children with JRA.     

The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis

OBJECTIVES: To investigate the relationship between health-related quality of life (HRQL), experience of pain and pain coping strategies in children with juvenile idiopathic arthritis (JIA). To compare reports describing these variables obtained from children and their parents. METHODS: Participants were 59 children aged 8 to 18 yr with JIA and their parents. Parents and children completed the PedsQL generic core scales and arthritis module, the visual analogue scale of the Varni-Thompson Pediatric Pain Questionnaire, and the Waldron/Varni Pediatric Pain Coping Inventory. Parents rated children's functional disability using the Childhood Health Assessment Questionnaire. RESULTS: Parents reported significantly lower scores (indicating worse HRQL) than children on five of the eight PedsQL scales rating children's HRQL. Parents and children reported a significant negative relationship between pain levels and the PedsQL scores assessing children's physical, emotional and social functioning. They also reported a significant negative relationship between scores on several pain coping scales and scores on the PedsQL scales. However, the pattern of these relationships varied for reports from parents and children. CONCLUSIONS: Pain intensity and pain coping strategies have a significant and independent relationship with several domains that comprise the HRQL of children with JIA. However, parents and children have differing perceptions of the nature of these relationships. The differences emphasize the importance of clinicians obtaining information about children's HRQL, pain levels and pain coping strategies from both parents and children.     

Parental factors associated with obesity in children with disability: a systematic review

The current literature on obesity in typically developing children shows that the family context, and specifically the way parents parent their children are major determinants of childhood obesity. The influence of these factors on obesity in children with disability, however, remains unclear. A systematic review of the literature was undertaken to identify the parental and parenting risk factors associated with obesity in children and adolescents with disability. Articles were identified through Medline, Academic Search Complete, PsycINFO, ProQuest, ISI, CINAHL, Cochrane and Scopus databases. There was no restriction on publication dates. The inclusion criteria were empirical papers that tested associations between parental and parenting risk factors and obesity in children and adolescents with intellectual and other developmental disabilities. Only 11 studies met the selection criteria and subsequently included in this review. Results suggest that obesity in children and adolescents with disability may be associated with socioeconomic status; parents' body mass index, perception and attitude towards their children's weight and physical activity; and levels of activity in both parents and children. Firm conclusions about these associations cannot be reached, however, due to mixed findings and methodological limitations of the studies. Recommendations for future research are provided.     

New-onset juvenile dermatomyositis. Comparisons with a healthy cohort and children with juvenile rheumatoid arthritis

Objective. To determine, in a case-control study, if patients with new-onset juvenile dermatomyositis (juvenile DM) have increased symptoms prior to onset, exposure to certain environmental conditions, frequency of familial autoimmune diseases, or antibody titers, compared with 2 control groups. Methods. A structured interview with the families of 80 children with juvenile DM, 40 children with juvenile rheumatoid arthritis (JRA), or 23 healthy children, from the same geographic area as the children with juvenile DM, was conducted. All children's sera were tested for antibody to Toxoplasma gondii, herpes simplex virus (HSV), or coxsackievirus B (CVB). Results. A high proportion of children with juvenile DM had constitutional symptoms 3 months before the disease-onset date (P = 0.013 versus control children). Children with JRA had more relatives with rheumatoid arthritis (P = 0.0001) and pernicious anemia (P = 0.003) than did children with juvenile DM or healthy children. Among children ⩽7 years of age, elevated enteroviral titers were more frequent in those with juvenile DM (81%) and in healthy controls (90%) than in those with JRA (64%), suggesting a common environmental exposure. Titers to T gondii, HSV, or CVB 1-6 were normal. Conclusion. Frequencies of familial autoimmune disease, exposure to environmental factors, or elevated antibody titers to T gondii, HSV, or CVB are not increased in juvenile DM. Children with juvenile DM do have symptoms of illness 3 months before the disease-onset date, and young patients have elevated enteroviral titers, as do young geographic controls.     

Juvenile idiopathic arthritis: parent-child discrepancy on reports of pain and disability

OBJECTIVE: To examine the incidence and nature of disagreements about pain and functional disability between parents and their children with juvenile idiopathic arthritis (JIA) and to identify demographic and psychosocial predictors of parent-child disagreement about pain and functional disability. METHODS: Participants comprised 63 children 8-16 years of age (mean 12.36 +/- 2.61) and their parents, followed as part of a longitudinal study of pain in children. During routine rheumatology clinic visits, children and their parents completed validated measures of pain, depressive symptoms, and functional disability. RESULTS: Parents and children often disagreed as to the frequency and intensity of pain and to the degree of disability caused by arthritis. Child depressive symptoms (p < 0.01) and parental perceptions of child limitations (p < 0.02) predicted parent-child disagreement about the frequency of the child's pain. Parental perceptions of child limitations also predicted parent-child disagreement about the child's level of functional disability (p < 0.04). Those children who estimated their level of disability to be different than their parents' rating also were more depressed compared to children who agreed with their parents about their level of disability (p < 0.01). CONCLUSION: Discrepancy between parent and child reports of pain and disability in children with JIA is common. Findings suggest that such disagreements in reporting of pain and functional disability by parents and their children with JIA are associated with underlying depressive symptoms in children.     

Causes of pain in children with arthritis

Pain in children with juvenile rheumatoid arthritis (JRA) is often not fully recognized and is therefore incompletely treated. The use of pain assessment instruments developed specifically for children may enhance recognition by health care providers. Recent studies suggest that coping variables and disease severity are significant predictors of pain in children with JRA. Pain in children with JRA is a complex phenomenon, best managed using a multidisciplinary approach that includes aggressive traditional medical management and addresses psychosocial variables such as coping strategies and perceptions about disease.     

Fibromyalgia and headache: an epidemiological study supporting migraine as part of the fibromyalgia syndrome

Fibromyalgia is defined by widespread body pain, tenderness to palpation of tender point areas, and constitutional symptoms. The literature reports headache in about half of fibromyalgia patients. The current epidemiological study was designed to determine the prevalence and characteristics of headache in fibromyalgia patients. Treatment-seeking fibromyalgia patients were evaluated with measures for fibromyalgia, chronic headache, quality of life, and psychological distress. Multivariate analysis of variance (MANOVA) and t-tests were used to identify significant differences, as appropriate. A total of 100 fibromyalgia patients were screened (24 fibromyalgia without headache and 76 fibromyalgia with headache). International Headache Society diagnoses included: migraine alone (n=15 with aura, n=17 without aura), tension-type alone (n=18), combined migraine and tension-type (n=16), post-traumatic (n=4), and probable analgesic overuse headache (n=6). Fibromyalgia tender point scores and counts and most measures of pain severity, sleep disruption, or psychological distress were not significantly different between fibromyalgia patients with and without headache. As expected, the fibromyalgia patients with headache scored higher on the Headache Impact Test (HIT-6) (62.1±0.9 vs 48.3±1.6, p<0.001). HIT-6 scores were >60 in 80% of fibromyalgia plus headache patients, representing severe impact from headache, and 56–58 in 4%, representing substantial impact. In summary, chronic headache was endorsed by 76% of treatment-seeking fibromyalgia patients, with 84% reporting substantial or severe impact from their headaches. Migraine was diagnosed in 63% of fibromyalgia plus headache patients, with probable analgesic overuse headache in only 8%. General measures of pain, pain-related disability, sleep quality, and psychological distress were similar in fibromyalgia patients with and without headache. Therefore, fibromyalgia patients with headache do not appear to represent a significantly different subgroup compared to fibromyalgia patients without headache. The high prevalence and significant impact associated with chronic headache in fibromyalgia patients, however, warrants inclusion of a headache assessment as part of the routine evaluation of fibromyalgia patients.     

Pain, disability, and pain/disability relationships in seven rheumatic disorders: a study of 1,522 patients.

We studied the pain, Stanford Health Assessment Questionnaire functional disability, pain/disability ratio, and psychological scores in 1,522 patients with rheumatic disease with 7 distinct disorders. Individual differences between patients were more striking than differences among diagnostic groups. Patients with rheumatoid arthritis (RA) had the greatest disability, least pain, lowest pain/disability ratio, and least abnormal psychological scores. Highest pain and psychological distress was noted in low back pain, neck pain, and fibromyalgia (axial disorders). Disability in activities of daily living was as high in fibromyalgia as in RA, but low in axial skeletal disorders. There appears to be a continuum for disability that begins with axial but not articular disease (neck and back pain) and ends with multiple articular and periarticular involvement (RA and fibromyalgia).     

The relation between tender points and fibromyalgia symptom variables: evidence that fibromyalgia is not a discrete disorder in the clinic

OBJECTIVE—To investigate the relation between measures of pain threshold and symptoms of distress to determine if fibromyalgia is a discrete construct/disorder in the clinic.
METHODS—627 patients seen at an outpatient rheumatology centre from 1993 to 1996 underwent tender point and dolorimetry examinations. All completed the assessment scales for fatigue, sleep disturbance, anxiety, depression, global severity, pain, functional disability, and a composite measure of distress constructed from scores of sleep disturbance, fatigue, anxiety, depression, and global severity—the rheumatology distress index (RDI).
RESULTS—In regression analyses, the RDI was linearly related to the count of tender points (r²=0.30). Lesser associations were found between the RDI and dolorimetry measurements (r²=0.08). The RDI was more strongly correlated with the two measures of pain threshold than any of the individual fibromyalgia symptom variables. In partial correlation analyses, all of the information relating to symptom variables was contained in the tender point count, and dolorimetry was not independently related to symptoms.
CONCLUSION—Tender points are linearly related to fibromyalgia variables and distress, and there is no discrete enhancement or perturbation of fibromyalgia or distress variables associated with very high levels of tender points. Although fibromyalgia is a recognisable clinical entity, there seems to be no rationale for treating fibromyalgia as a discrete disorder, and it would seem appropriate to consider the entire range of tenderness and distress in clinic patients as well as in research studies. The tender point count functions as a `sedimentation rate' for distress, and is a better measure than the dolorimetry score.

     

Relationship between fibromyalgia features and smoking

OBJECTIVE: The objective of this study was to examine a possible relationship between smoking and fibromyalgia features among 233 female patients with fibromyalgia syndrome. METHODS: Data on clinical and psychological features were collected by a protocol. Smoking status was evaluated by a question inquiring about the packs of cigarettes smoked per day. Differences between the smokers and non-smokers were tested by Mann Whitney U test. To adjust data for age and education, a partial correlation test was used. A p value of < or = 0.01 was accepted as the level of significance. RESULTS: Fifty-one patients (21.9%) smoked. After adjustment for age and education, significantly positive relationship was found between smoking and pain, patient global severity, functional disability, and numbness. There was no difference between smokers and non-smokers for fatigue, morning fatigue, sleep difficulties, tender points (TP), depression, anxiety and stress. CONCLUSIONS: Smokers reported significantly more pain, numbness, patient global severity, and functional difficulties than non-smokers. There was no significant difference between smokers and non-smokers for fatigue and TP.     

Evidence of qualitatively altered nociception in patients with fibromyalgia

Objective. To investigate the perception of pain in tender muscles of patients with fibromyalgia. Methods. Twenty-five women with fibromyalgia and 25 healthy women were examined. Seven different pressure intensities were used to palpate a highly tender muscle and a largely normal muscle. Subjects then recorded their response to induced pain on a visual analog scale. The examiner was blinded to each subject's response. Results. The stimulus-response function for pressure versus pain recorded for normal muscle was well described by a power function. For highly tender muscle, the stimulus-response function was displaced toward lower pressures and, more importantly, it was linear, i.e., qualitatively different from that of normal muscle. Conclusion. This study demonstrates that nociception is qualitatively altered in patients with fibromyalgia, which is consistent with recent findings in other patients with tender muscles. The data strongly indicate that fibromyalgic pain, at least in part, is due to aberrant central pain mechanisms.     

Temperament and stress response in children with juvenile primary fibromyalgia syndrome

OBJECTIVE: To examine temperament, stress response, child psychological adjustment, family environment, pain sensitivity, and stress response differences between children and adolescents with juvenile primary fibromyalgia syndrome (JPFMS), children with arthritis, and healthy controls. Parental psychological adjustment was also measured. METHODS: Subjects included 16 children with JPFMS, 16 children with arthritis, and 16 healthy controls. Participants completed the Dimensions of Temperament Survey-Revised (DOTS-R), State-Trait Anxiety Inventory, Children's Depression Inventory, Family Environment Scale (FES), Sensitivity Temperament Inventory for Pain (STIP), and Youth Self-Report. Responsiveness to an acute stressor was assessed by measuring salivary cortisol levels before and after venipuncture. Parents were asked to complete the parent versions of the DOTS-R, FES, STIP, Child Behavior Checklist, and Symptom Checklist-90-Revised. RESULTS: Children and adolescents with JPFMS demonstrated more temperamental instability, increased levels of depression and anxiety, less family cohesion, and higher pain sensitivity compared with the other 2 groups. Parents of children with JPFMS, in rating themselves, also reported higher levels of anxiety and depression, and lower overall psychological adjustment compared with parents of children in the other groups. CONCLUSION: These results suggest that a psychobiologic perspective may contribute to an increased understanding of JPFMS in children and adolescents, facilitating an approach to investigating the interaction of factors that appear to place a child at risk for development of a pain syndrome. Because temperamental instability, sensitivity to pain, vulnerability to stress, psychological adjustment, family context, and parental psychopathology are individual risk factors, the interaction of these factors may explain the breadth of symptoms associated with this pain syndrome, as well as its severity.     

Pressure pain threshold in pain-free subjects,in patients with chronic regional pain syndromes,and in patients with fibromyalgia syndrome

Objective. We hypothesized that change in pain threshold to pressure reflects a generalized change in the pain system affecting both tender and control points. Methods. We assessed 18 tender points and 4 control points using an algometer in 60 patients with generalized fibromyalgia/fibrositis syndrome, 60 patients with localized chronic pain syndromes, and in 60 pain-free subjects. Results. A significant correlation was found between myalgia scores at tender points and control points in these subjects. Conclusion. These results suggest that there is a diffuse change in pain modulation in fibromyalgia, as hypothesized, but the tender point is still clinically useful.     

Children's and parents' opinions on the sport‐related food environment: a systematic review

Sport is a key setting for interventions to address child obesity given its obesogenic nature. Understanding children's and parents' opinions on the sport‐related food environment is critical in developing effective programmes and policies to improve children's health. This systematic review synthesizes quantitative and qualitative research examining children's and parents' opinions on the sport‐related food environment. During July 2016, a range of electronic databases of academic and grey literature were searched. Thirty‐two publications (11 including children, 17 parents and 4 both) were included for review. The publications were assessed using the Analysis Grid for Environments Linked to Obesity framework to categorize the sport‐related food environment into the physical, sociocultural, economic and political environments. The literature available investigating children's and parents' opinions of the sport‐related food environment suggests that many children and parents consider the environment neither conducive to nor supportive of children's healthy food behaviours or wider health and well‐being. Both groups would likely support actions to change and improve it. This systematic review found that original research specifically investigating children's and parents' perspectives on almost all aspects of the sport‐related food environment is limited. Thus, there is scope for further investigation into this important part of children's food environments.