Evidence Based Treatments

Psychosocial Adjustment

Although findings from the meta-analysis by LeBo-vidge et al. (2003) suggest that youth with JRA may be at increased risk for overall adjustment problems, little systematic research has focused on explicitly improving psychosocial adjustment among youth with JRA. In fact, few studies have examined interventions for parents and caregivers of youth with JRA (Hagglund et al. 1996; Ireys et al. 1996; Turner et al. 2001).

Ireys et al. (1996) conducted a randomized clinical trial in which mothers of youth with JRA were assigned to a 15-month social support intervention or control group. In the social support group, a mentor was assigned (i.e., mothers of young adults who have had JRA since childhood) who provided informational support, affirmation support, and emotional support. Findings revealed that the social support intervention was effective in decreasing mental health symptomatology among mothers of youth with JRA and increasing perceived availability of support.

Hagglund et al. (1996) evaluated a 3-day residential intervention for families of youth with JRA that provided psychoeducation and medical management of the disease. Results revealed a reduction in children's internalizing, but not externalizing, symptoms. Moreover, although there was a reduction in caregiver strain, there was no change in caregiver psychological distress. A follow-up study conducted by Turner et al. (2001) evaluated the effectiveness of a workshop on parental appraisals of JRA impact and parental psychosocial well-being relative to a control group. At 3-month follow-up, parents in the intervention group reported fewer episodes of stress related to their child's disease and an improvement in their overall mental health relative to the comparison group. Although the aforementioned findings are encouraging, albeit tentative given some of the methodological limitations (e.g., small sample sizes, weak effect sizes), future research with larger sample sizes clearly is necessary.

Adherence to Medical Regimens

Youth with JRA are asked to adhere to a variety of medical regimens, including medications (e.g., NSAIDs) and therapeutic exercises (Lemanek et al. 2001; Rapoff and Lindsley 2007). Adherence to these regimens appears to be less than optimal (Rapoff 2006). In a study of youth with JRA, electronic monitoring over nearly 1 month suggested that 52% of the participants were adherent to NSAIDs, whereas 48% were classified as nonadherent (Rapoff et al. 2005). Adherence to therapeutic exercises is actually considered more problematic than adherence to medication (Rapoff 2006). Motivation appears to be a viable predictor of adherence to medication in adolescents. Similarly, uncontrollable pain and support by nurses also have been demonstrated to predict adherence to medication (Kyngas 2002). Other predictors of adherence to medication include younger age at disease onset, longer disease duration, shorter duration of subspe-cialty care, greater delay between disease onset and first subspecialty clinic visit, fewer clinic visits (Litt and Cuskey 1981), dysfunctional family interactions, high family stress (Chaney and Peterson

1989), socioeconomic status, and active joint count (Rapoff et al. 2005).

Several studies conducted by Rapoff and colleagues (Pieper et al. 1989; Rapoff et al. 1984, 1988a, 1988b) have demonstrated that various psychological interventions combining behavioral (e.g., parent-managed token reinforcement programs, self-monitoring, positive verbal feedback) and educational (e.g., verbal instruction about medications, side effects, and importance of medications) strategies improve adherence to treatment for JRA (specifically medications, splint wearing, and prone lying). These studies generally suggest that these strategies are probably efficacious based on the criteria developed by the Society of Pediatric Psychology (Lemanek et al. 2001). Probably efficacious treatments require 1) two or more group intervention studies displaying superiority over a wait-list control group or 2) one study meeting criteria for a well-established intervention (Spirito 1999). A more rigorous randomized clinical trial compared a clinic-based, nurse-administered educational and behavioral intervention with a control group to prevent adherence dropoff to NSAIDs in youth newly diagnosed with JRA (Rapoff et al. 2002). Findings revealed that the intervention group was more adherent to medication as compared with the control group; however, no differences were observed in disease activity or functional limitations.

Pain

Pain is a clinically significant symptom of JRA in youth (Cassidy and Petty 2001). Youth with JRA experience pain on an almost daily basis (Anthony and Schanberg 2005). Pain intensity ranges in the mild to moderate range, with some children reporting higher pain intensity (Schanberg et al. 2003). The most predictive model of pain utilizes a biopsy-chosocial approach whereby pain is influenced by a variety of factors such as disease, demographic, and psychological variables (Anthony and Schanberg 2005). Specifically, psychological variables that may predict pain include daily mood and daily stressors (see Schanberg et al. 2000).

The frontline defense for managing JRA-related pain includes pharmacological interventions such as NSAIDs to reduce pain and inflammation. However, given that pain is conceptualized through a biopsychosocial approach, psychological approaches are also warranted. Unfortunately, few psychological intervention studies have focused on ameliorating pain, and those that do exist are riddled with methodological limitations such as small sample sizes, no control groups, and selection bias.

Earlier studies utilized behavioral and cognitive techniques to improve the experience of pain (La-vigne et al. 1992; Walco et al. 1992). Using a multiple baseline across-subjects design, eight children received a manualized treatment employing progressive muscle relaxation, biofeedback, thermal biofeedback, and operant pain management strategies (Lavigne et al. 1992). Overall, there was a 25% reduction in mean pain scores from pre- to post-treatment. Differences were found between the immediate and delayed treatment groups. However, youth were receiving concurrent pharmacological treatment that may have confounded the results.

A second study employed a cognitive-behavioral intervention for pain (Walco et al. 1992). The intervention included eight weekly sessions of progressive muscle relaxation, meditative breathing, and guided imagery. Both youth and parents reported decreased pain immediately after the intervention and at 6- and 12-month follow-up. Participants also displayed improved activities of daily living at 6- and 12-month follow-up. Limitations of this study include the small sample size, very high rate attrition, and absence of a control group. Based on the criteria of the Society of Pediatric Psychology, cognitive-behavioral interventions are promising interventions, but further research with larger sample sizes and comparison groups is necessary (Walco et al. 1999). The criteria for promising interventions include 1) positive support from one well-controlled study and at least one other less well-controlled study; 2) a small number of single-case design experiments; or 3) two or more well-controlled studies by the same investigator (Spirito 1999).

Field et al. (1997) conducted a randomized trial in which youth with mild to moderate JRA who either were massaged by their parents 15 minutes a day for 30 days or engaged in progressive muscle relaxation with their parents daily for 30 days. Findings revealed that the youth in the massage group experienced both psychosocial- and pain-related improvements. Massage immediately reduced parental anxiety, diminished child anxiety based on behavioral observations, and lowered salivary cortisol levels. Long-term massage effects included less frequent pain, lower severe pain, and fewer words for pain. Parent reports indicated less severe pain during the evening and fewer pain episodes limiting vigorous activity, whereas physician reports revealed less pain and less morning stiffness.

Behavioral Approaches to Enhance Treatment

Two studies employed behavioral strategies designed to enhance the treatment of youth with JRA (Stark et al. 2005; Van der Meer et al. 2007). In a pilot study, a behavioral intervention was utilized to combat the psychological side effects (e.g., anticipatory nausea, behavioral distress) of methotrexate in youth with JRA (Van der Meer et al. 2007). Behavioral intervention (e.g., systemic desensitization or cognitive-behavioral therapy) was found to ameliorate psychological side effects in youth with JRA. A more rigorous and controlled study employed a randomized clinical trial designed to test the efficacy of a behavioral intervention compared with enhanced standard of care dietary counseling for the purpose of preventing osteoporosis in youth with JRA through increased calcium intake (Stark et al. 2005). The behavioral intervention group consisted of children and parents receiving six sessions of nutritional counseling on increasing calcium intake and behavioral strategies (i.e., positive reinforcement). The comparison group consisted of three visits for nutritional counseling. Youth in the experimental group demonstrated a significantly greater increase in calcium intake than children in the comparison group. Of clinical significance is that a greater percentage of youth in the experimental group (92%) reached the goal of 1,500 mg of calcium at posttreatment relative to the comparison group (17%).

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