Perceived adherence to prescribed treatment in juvenile idiopathic arthritis over a one‐year period

Objective

To document perceived adherence to treatment (taking medications and performing exercises) in patients with juvenile idiopathic arthritis (JIA) over a 1‐year period and to identify related factors.

Methods

We surveyed parents of patients with JIA at the Montreal Children's Hospital and British Columbia's Children's Hospital in Vancouver. Parents were asked to respond to a series of questionnaires every 3 months over a 12‐month period. Perceived adherence was evaluated on a 100‐mm visual analog scale (VAS) in the Parent Adherence Report Questionnaire (PARQ). Parental coping, distress, child function, disease severity and duration, perceived helpfulness of treatment, problems encountered, and sociodemographic data were also assessed.

Results

The mean age of our sample of 175 children was 10.2 years; mean age at diagnosis was 6.1 years and mean disease duration was 4.1 years. Perceived adherence to medications was consistently high, with average adherence at baseline, 3, 6, 9, and 12 months being 86.1, 91.7, 90.4, 92.0, and 88.8, respectively, on the PARQ VAS. Perceived adherence to exercise was lower but remained steady, with corresponding means of 54.5, 64.1, 61.2, 63.0, and 54.3, respectively. Using generalized estimating equation analysis, factors associated with higher perceived adherence to medications included perceived helpfulness of medications and lower disease severity; those associated with higher perceived adherence to exercise were younger age of the child, child involvement in responsibility for treatment, and higher perceived helpfulness of the treatment.

Conclusion

Belief in helpfulness of treatment is associated with higher parental perceived adherence to treatment.     

Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications

Although numerous paediatric-based health-related quality-of-life (HR-QOL) instruments are currently in use, there still remain conceptual, methodological and developmental issues to address. This paper provides an up-to-date critical review of the HR-QOL literature in paediatric medicine.Our analysis indicates that there is no consensus on how HR-QOL and overall QOL should be defined and measured in children. It is recommended that future studies focus on operationalising and distinguishing these constructs from each other and from traditional health-status measures. A clear empirical basis for generating instrument items and for prioritising specific domains must be described. Researchers should consider using the data gathered during their first interviews as a springboard from which to test their ideas of HR-QOL and QOL, reformulate concepts and subsequently retest their notions before developing instruments.Related to methodological challenges, consistency and agreement are still used interchangeably when comparing child and parent reports of children's HR-QOL. The Pearson correlation is a measure of co-variation in scores, and not a measure of agreement. We recommend that researchers focus on determining agreement as opposed to consistency. Few, if any, attempts have been made to account for the possibility that a response shift may have occurred in the evaluation of HR-QOL. Most studies have compared HR-QOL scores of children with illness with their healthy peers. As such, there is a dearth of knowledge regarding the normative process of adaptation within the context of illness. It is recommended that researchers focus on gathering data using a relative standard of comparison. We further recommend that researchers interpret HR-QOL data in line with their intended purpose. Regarding developmental consideration, particular attention ought to be paid to developing instruments that consider children's emerging sense of self, cognitive capacity and emotional awareness. Instruments that include items that are age appropriate are more likely to maximise reliability and validity of reports.The results of many HR-QOL instruments are applied in pharmacotherapeutic and pharmacoeconomic assessments. However, there has been relative infrequent application of economically valid HR-QOL tools (utility scales) and the use of HR-QOL scales as outcome measures in paediatric drug trials. As such, few cost-utility analyses have been performed to inform paediatric decision making. In addition, many of the concerns in the development of HR-QOL instruments should also be applied to the utility scales such that they reflect adequately children's preferences for health states.     

Optimal care for rheumatoid arthritis: a focus group study

Our study sought to identify barriers to optimal care for individuals with rheumatoid arthritis (RA). Our study was set in a population with universal access to comprehensive health care in the context of a university hospital health network. Using purposive sampling, we invited RA patients, health professionals, and decision makers from urban and rural regions to participate in structured focus group interviews. Content analysis was performed to determine themes emerging from the data. We identified four general themes. First, initial barriers to optimal care for people begin before primary care contact, at the level of the general population and/or related to primary care access. Second, many factors (at the patient, physician, and system level) influenced how quickly a patient is referred from primary to specialty care. Third, after referral, multiple comanagement issues influence patient outcomes. Fourth, optimizing RA care requires adequate resources. Participants emphasized the need for more education (of patients, of health care providers, and within the general community), better communication between and among patients and health care providers, and more efficient use of existing resources. Our work provides insights regarding barriers to and facilitators of optimal care in RA. Further work with these stakeholder groups in our health care region will examine potential solutions and the feasibility of their implementation. Our work provides an example of how research can assist stakeholder leaders in creating structured and incremental plans to improve health care delivery for persons with chronic diseases like RA.     

Effects of adherence to treatment on short-term outcomes in children with juvenile idiopathic arthritis

OBJECTIVE: To determine the impact of adherence to treatment (medication and prescribed exercise) on outcomes in children with juvenile idiopathic arthritis (JIA). METHODS: In this longitudinal study, we studied parents of patients with JIA at the Montreal Children's Hospital and British Columbia Children's Hospital in Vancouver. Adherence was evaluated on a visual analog scale in the Parent Adherence Report Questionnaire. Outcomes of interest were active joint count, pain, child functional score on the Child Health Assessment Questionnaire, quality of life score on the Juvenile Arthritis Quality of Life Questionnaire, and parental global impression of overall well-being. The association between adherence to treatment and subsequent outcomes was evaluated using generalized estimating equations and logistic regression. RESULTS: Mean age and disease duration of our sample of 175 children were 10.2 and 4.1 years, respectively. Moderate adherence to medication was associated with lower active joint count (odds ratio [OR] 0.47, 95% confidence interval [95% CI] 0.22-0.99). Moderate adherence to exercise was associated with better functional score (OR 0.13, 95% CI 0.03-0.54), and lower pain during the last week (OR 0.14, 95% CI 0.04-0.50). Both high and moderate adherence to exercise were associated with parental perception of global improvement. CONCLUSION: Improved outcomes in patients who adhered to treatment underscores the need for clinicians to address adherence issues with their patients. Sustaining adherence, particularly to the more time-consuming treatment of exercise, is a challenge.     

Interferon-alpha in mixed cryoglobulinemia patients: a randomized, crossover-controlled trial

The effects of interferon-alpha (IFN-alpha) on clinical and serologic manifestations of mixed cryoglobulinemia (MC) were investigated by randomized, crossover-controlled trial in 26 patients. The trial alternated 6 months with and 6 months without IFN-alpha therapy (2 x 10(6) IU daily for a month, then every other day for 5 months). In 22 patients, pretreatment steroid dosage remained unchanged during the study. Six patients dropped out (three because of side effects), whereas another 20 patients experienced a significant improvement of purpura (P < .02) and serum transaminases (P < .005) during IFN-alpha treatment. The presence of clinical improvement was supported by the outcome measurements of several immunologic parameters. In particular, serum cryoglobulins were significantly reduced (P < .04) during IFN- alpha therapy. A rebound phenomenon of clinical and serologic parameters was observed after IFN-alpha discontinuation. In addition, no variations were recorded during 6 months without therapy. Hepatitis C virus (HCV) RNA was detected in 91% (20/22) of our MC patients; in 2/13 cases HCV RNA was no longer detectable in serum samples after IFN- alpha therapy. Thus, IFN-alpha could be considered as treatment for MC in patients with HCV seropositivity.     

Association between vitiligo and spondyloarthritis

OBJECTIVE: To establish if spondyloarthritis (SpA) and vitiligo occur together more frequently than by chance. METHODS: All consecutive patients with SpA seen in a 6 month period were evaluated for vitiligo by an experienced dermatologist. The control group included the 2 consecutive patients without SpA seen after each patient with SpA. RESULTS: Two hundred thirty-four patients with SpA (131 men, 103 women; mean age 59 +/- 18.3 yrs) were seen in the study period. Of these, 43 had ankylosing spondylitis (AS), 112 psoriatic arthritis (PsA), 14 SpA associated with inflammatory bowel disease, 64 undifferentiated SpA, and one reactive arthritis. The 468 control patients (360 women, 108 men; mean age 68.5 +/- 2 yrs) had various degenerative and inflammatory rheumatic diseases. Eight (3.4%) patients out of 234 with SpA had type A vitiligo. In the control group, 5 (1.06%) out of 468 had type A vitiligo. The difference was statistically significant (p < 0.05). Of the 8 patients with coexisting vitiligo and SpA, 4 had PsA, 2 primary AS, one AS associated with Crohn's disease, and one undifferentiated SpA. Of the 5 patients with vitiligo in the control group, one had rheumatoid arthritis, one S ogren's syndrome, one palindromic rheumatism, one crystal arthropathy, and one osteoarthritis. CONCLUSION: Our results suggest that vitiligo and SpA do not coexist by chance and that vitiligo should be included in the list of diseases associated with SpA.     

Interstitial lung fibrosis and rheumatic disorders in patients with hepatitis C virus infection

A possible aetiopathogenetic role of hepatitis C virus (HCV) has been reported in various immune-mediated disorders, such as mixed cryoglobulinaemia, which may be complicated by interstitial lung involvement; moreover, different viruses, including HCV, have been correlated with idiopathic pulmonary fibrosis. Here, a cohort of eight HCV-positive patients (M/F = 4/4, mean age 61 +/- 8 S.D. yr) with interstitial lung fibrosis and a variable number of rheumatic disorders are described. Interstitial lung involvement appeared medially 4.5 +/- 3.2 S.D. yr after the clinical onset of chronic hepatitis. During the clinical follow-up, some rheumatic symptoms were also recorded: articular involvement (four patients): mild sicca syndrome (one patient); severe polymyositis and cranial neuropathy (one patient); serum cryoglobulins and/or autoantibodies (eight patients). In all patients, a moderate (four patients) or severe (four patients) lung fibrosis was evaluated by means of high-resolution computed tomography. The presence of parenchymal radiotracer uptake on 67Ga scan (7/7 patients) and increased percentages of neutrophils (4/4 patients) and lymphocytes (2/4) at bronchoalveolar lavage suggested an active lung involvement. Different degrees of reduction of single breath diffusing capacity for carbon monoxide (DLco) (mean value 57.6 +/- 15%, range 37- 80) were observed in all cases, while spirometric abnormalities, consistent with a global restrictive pattern, were less frequently found. In all cases, anti-HCV antibodies and HCV viraemia were demonstrated: viral genome was also detected in peripheral lymphocytes from 4/4 subjects and in one case in lung biopsy specimens. A desquamative interstitial pneumonia pattern was demonstrated in two cases by lung biopsy. The present work supports the hypothesis that HCV chronic infection could represent a trigger factor for interstitial lung fibrosis and various rheumatic disorders.      

The role of functional social support in treatment retention and outcomes among outpatient adult substance abusers

Aims The goals of this study were: (1) to compare patients with high and low functional social support at intake and 6 months later on various risk factors; (2) to test the stress‐buffering role of functional social support on treatment outcomes, and (3) to determine whether levels of functional social support at intake predicted treatment retention. Design Consecutive admissions to an outpatient treatment program were assessed at intake (n = 206) and at 6 month follow‐up (n = 172) using the Addition Severity Index (ASI). Patients completed questionnaires pertaining to social support, stress and psychological functioning both at intake and at 6 months. Findings Both high and low social support groups experienced marked declines in negative affect and in the severity of substance abuse over time. There were some group differences: for example, symptoms of depression and psychological distress were higher among patients with low social support at intake and at 6 months. Patients with low social support at intake reported higher severity of alcohol and drug abuse at 6 months. Hierarchical regression analyses showed that functional social support was a modest predictor of reductions in the severity of alcohol abuse at follow‐up, after controlling for the number of days in treatment. Higher levels of social support explained a modest (6%) proportion of the variance in alcohol‐related outcomes, but did not predict reductions in drug abuse. Survival analysis demonstrated that the rate of dropping out of treatment was significantly higher for patients with low social support. Conclusions Higher functional social support at intake is a positive predictor of retention in treatment, and a modest predictor of reductions in alcohol intake, but not in drug use. Overall, social support accounts for a small percentage of the variance in drug/alcohol‐related outcomes, underscoring the need for further research into variables accounting for treatment success and failure.