Compliance with treatment regimens for pediatric rheumatic diseases.

Children with pediatric rheumatic diseases (PRDs) are required to comply with long-term treatment regimens that may not have immediate beneficial effects or may be required primarily to prevent further morbidity. As with other chronic disease regimens, compliance can be a significant problem that interferes with treatment efficacy and adequate clinical outcomes. This paper reviews (1) the prevalence and types of compliance problems in the management of PRDs; (2) patient/family, disease, and regimen factors that may be associated with treatment noncompliance; and (3) strategies for improving compliance with regimens for PRDs.

The validity and reliability of parental ratings of disease activity in juvenile rheumatoid arthritis.

This study assessed the validity and reliability of parental ratings of morning stiffness, activity limitations, and pain complaints on a sample of 31 patients with juvenile rheumatoid arthritis (JRA). Parental ratings were found to be significant predictors of active joint counts, accounting for 40% of the variance in joint counts. Internal consistency reliability was moderately high (0.819), but test-retest reliability was moderate to low; this is not unexpected given the fluctuations in symptoms of JRA over time. The results suggest that parental ratings are valid and moderately reliable measures of disease activity in JRA. Regular monitoring of symptoms by parents could be a useful source of information for health care providers in making treatment decisions and can increase parental and patient involvement in the treatment process.

Improving compliance with prednisone therapy in pediatric patients with rheumatic disease.

Compliance with regimens for pediatric rheumatic diseases is often poor, and few studies have evaluated strategies for improving compliance. This study utilized relatively simple behavioral and educational strategies to improve compliance with prednisone for three patients with pediatric rheumatic diseases (systemic lupus erthematosus and dermatomyositis). These strategies were implemented in a pediatric rheumatology setting and resulted in improved compliance that was maintained at 6- and 12-month follow-up. During baseline, patients were found to be overmedicating as well as undermedicating. This study is a systematic replication of an earlier study that demonstrated that behavioral and educational strategies can improve compliance with medications for juvenile rheumatoid arthritis. It also raises the possibility of overmedicating as a compliance problem to be managed.

Relationship between pain severity and serum beta-endorphin levels in postoperative patients.

STUDY OBJECTIVE: To examine the relationship among postoperative pain severity, serum beta-endorphin level, and serum morphine level in pediatric patients after posterior spinal fusion with instrumentation. DESIGN: A prospective study. SETTING: University-based medical center. PATIENTS: Ten patients age 13-17 years admitted for posterior spinal fusion with instrumentation. INTERVENTIONS: Each subject was administered an initial dose of intravenous morphine 100 micrograms/kg, followed by a constant infusion of 50 micrograms/kg/hour. The primary physician was allowed to titrate the dosage as required to meet the patient's requirement for analgesia. Whole blood was obtained for the analysis of serum morphine and beta-endorphin levels preoperatively, after the initial morphine dose, 24 hours after initiation of the infusion, and before any change in dosage. At each blood sampling time, pain severity ratings were obtained from the subject, nurse, and parent using a 10-point linear scale. MEASUREMENTS AND MAIN RESULTS: No statistical difference between serum beta-endorphin values preoperatively and after the initial dose of morphine was observed; mean values were 68 and 60 pg/ml, respectively. The relationships between serum beta-endorphin level and pain scores were statistically significant only for self (subject) pain scores (p = 0.014, r = 0.30). Mean serum morphine level was 21.9 ng/ml for patients with self pain scores of 4 or less. CONCLUSION: The clinical usefulness of serum beta-endorphin as a measure of pain severity was not established under the experimental conditions of this study.

Chronic pain and emotional distress in children and adolescents.

Pediatric chronic pain continues to be relatively underinvestigated and undertreated. The objective of the present cross-sectional study was to investigate the emotional distress hypothesized to be concurrently associated with the chronic pain experience in children and adolescents. One hundred and sixty children and adolescents with chronic pain and their parents completed standardized assessment instruments measuring pain intensity, depressive symptoms, state anxiety, trait anxiety, general self-esteem, and internalizing and externalizing behavior problems. Consistent with the a priori Biobehavioral Model of Pediatric Pain, higher patient-perceived pain intensity was associated with higher depressive and anxious symptoms, lower general self-esteem, and higher behavior problems. The results are discussed in regard to preventing and treating pain and suffering in children and adolescents with chronic pain.

Improving adherence to medication regimens for children with asthma and its effect on clinical outcome.

We examined the effects of a combined education and token system intervention to improve adherence to inhaled corticosteroids for an 8-year-old girl and a 10-year-old boy with asthma. Adherence was measured by an electronic chronolog monitor, and disease outcome was assessed by repeated pulmonary function testing. A withdrawal design demonstrated improved adherence and, for 1 child, an associated improvement in pulmonary function occurred. Methodological and clinical implications are discussed, including variables other than adherence that may affect disease outcome.

Improving pediatric appointment keeping with reminders and reduced response requirement.

We evaluated the effectiveness of appointment reminders and a reduced response requirement for improving appointment keeping in a hospital ambulatory pediatric clinic. Participants received mailed and telephoned reminders along with a parking pass that reduced the time and effort required to attend the clinic. A multiple baseline analysis of 5,261 appointments over one fiscal year showed that the intervention increased the percentage of appointments kept and decreased the percentage of appointments broken in the continuity clinics of five pediatric health care providers. Social validation, consumer satisfaction, and cost-effectiveness measures, as well as an interrupted time-series analysis, all support the effectiveness of the intervention.

The pain puzzle: a visual and conceptual metaphor for understanding and treating pain in pediatric rheumatic disease.

Chronic pain is a primary clinical manifestation of pediatric rheumatic diseases that for some children persists into adulthood and is associated with increased disability. The "pain puzzle" is presented as a visual and conceptual metaphor for understanding and treating pediatric rheumatic disease related pain. This metaphor is consistent with a biobehavioral model of pain that focuses on the unique and interactive components of nociceptive activity, emotions, cognitions, and behavior in the experience of pain. We describe the parts of the pain puzzle and review the implications for treating pediatric rheumatic disease related pain.

Psychosocial aspects of pediatric rheumatic diseases.

Pediatric rheumatic diseases present psychosocial challenges for patients and their families. These include (1) adjusting and coping with disease symptoms and limitations; (2) adhering to complex and demanding medical regimens; and (3) coping with chronic pain. This article reviews recent studies on these psychosocial issues for children with pediatric rheumatic diseases. There is a paucity of empirical studies addressing these issues and a clear need for multisite collaborative studies to address the psychosocial needs of patients and families.

Suppression of self-injurious behaviour: determining the least restrictive alternative.

In keeping with recent ethical and legal guidelines regarding the use of aversive treatment procedures, a number of alternatives for the treatment of self-injury have been suggested. The present study provides an example of the determination of the least restrictive but most effective treatment with a case of self-injury. Employing a combination of multiple baseline and reversal designs, the effects of DRO, overcorrection, lemon juice, and aromatic ammonia on the rate of self-poking in a profoundly retarded child were examined. DRO and overcorrection were both ineffective. Although lemon juice suppressed and stabilised the rate of poking, aromatic ammonia produced greater suppression. Implications for the testing of treatments for SIB are discussed.

Parent perceptions of problems experienced by their children in complying with treatments for juvenile rheumatoid arthritis.

Parents of children with chronic diseases, such as juvenile rheumatoid arthritis (JRA), are responsible for insuring that their children comply with medical regimens. Assessing the perceptions parents have of problems their children experience in complying with treatment would be useful in advising them of how to help their children. In this study, a questionnaire assessing the frequency and type of problems children experienced in complying with treatments of JRA was completed by 37 parents. The parents reported more problems with range of motion exercises and splint wearing than with medications. The most common negative reactions exhibited by the children included complaining, crying, forgetting to do what was prescribed, and noncompliance. Additionally, nearly 50% of the parents relied on their child's report or were vague about how they assessed compliance. Suggestions for advising parents about how they can assess and improve compliance are offered in this report.

Educational and behavioral strategies for improving medication compliance in juvenile rheumatoid arthritis.

Compliance with regimens for chronic conditions such as juvenile rheumatoid arthritis (JRA) is often poor, and the potential benefits of therapy are thus compromised. In this study a compliance intervention involving educational and behavioral strategies was shown effective in improving medication compliance for two of three patients with JRA. The intervention was introduced in a time-lagged fashion (multiple baseline design) with repeated measures of compliance. The strategies were less complex than other compliance interventions, such as token reinforcement strategies, and therefore would be more practical in pediatric outpatient settings.

Long-term follow-up of relaxation training for pediatric headache disorders.

The long-term effects of relaxation training for pediatric headache disorders was determined for 17 of 20 original participants from a prospective control-group experimental design study with random assignment to autogenic relaxation, progressive relaxation, autogenic plus progressive relaxation, or waiting list control groups. Long-term follow-up data were obtained at an average of 51 months post-treatment. All participants reported some increases in headache activity. Participants in the three relaxation treatment groups, however, had significantly more headache-free days and less severe headaches compared to the control group. There were no significant effects of treatment for headache duration, medication intake and rest time due to headache. Twelve of the 13 treated participants indicated relaxation training was effective in relieving headaches, with 7 reporting they practiced relaxation exercises within the past month. The results generally support the long-term benefits of relaxation in reducing headaches originating in childhood.

Improving compliance with medical regimens: case study with juvenile rheumatoid arthritis.

There is ample literature to suggest that a high percentage of pediatric patients with chronic diseases fail to comply adequately with their medical regimens. This study examined the effectiveness of a token reinforcement program in improving the compliance of a 7-year-old girl with juvenile rheumatoid arthritis. The parents were taught to manage the program in the home. The patient earned tokens for complying with her treatment regimen and lost tokens when she failed to comply. Tokens were exchanged for routine and special privileges. Compliance with medications, splint wearing, and lying prone was assessed by observation. Baseline data showed low levels of compliance, particularly with splint wearing and prone lying. Introduction of the token reinforcement program resulted in immediate improvement in compliance; improvement was maintained during 10 weeks of follow-up.

The overestimation of adherence to pediatric medical regimens.

We evaluated the accuracy of primary health care providers' predictions of parents' adherence to their children's short-term antibiotic regimen and a scheduled follow-up appointment. Adherence predictions were compared with objective measures of the parents' adherence. Providers were poor predictors of nonadherence, greatly overestimating the percentage of parents who would be adherent. Nonadherence is typically addressed by applying adherence improvement strategies to all patients. Recent pediatric research, however, suggests that applying contingency-based interventions for adherent patients can result in later nonadherence if the strategies are withdrawn. Inaccurate predictions of adherence will result in many nonadherent patients not receiving a needed intervention. The results indicate the need for strong behavioral predictors that result in more accurate identification of patient nonadherence to guide further applications of adherence improvement strategies.

Evaluating outpatient pediatric psychology services in a primary care setting.

OBJECTIVE: To provide descriptive and outcome information of an outpatient pediatric psychology clinic based in a medical center in a major metropolitan area. METHODS: We coded the characteristics and outcomes of 100 patients prospectively on a number of dimensions. Surveys and interviews were used to gather follow-up information. RESULTS: The majority of patients were Caucasian boys (n = 56 out of 100) between 2 and 12 years of age. The most common reasons for initiating contact with the clinic were assessment of school problems, behavior problems, anger, attention problems, depression, and temper tantrums. Eighty-one percent of the patients saw a therapist for brief treatment, between one and five sessions, and behavioral treatments were administered for the majority. The children's behavior for which the parents sought treatment improved significantly from pre- to posttreatment, as rated by parents and therapists. CONCLUSIONS: Overall, parents were satisfied with the services received and indicated that the recommendations given during therapy were helpful and easy to implement. This study provides general evidence for the effectiveness of pediatric psychology services.