An exploration of parents' preferences for foot care in juvenile idiopathic arthritis: a possible role for the discrete choice experiment.

BACKGROUND: An increased awareness of patients' and parents' care preferences regarding foot care is desirable from a clinical perspective as such information may be utilised to optimise care delivery. The aim of this study was to examine parents' preferences for, and valuations of foot care and foot-related outcomes in juvenile idiopathic arthritis (JIA). METHODS: A discrete choice experiment (DCE) incorporating willingness-to-pay (WTP) questions was conducted by surveying 42 parents of children with JIA who were enrolled in a randomised-controlled trial of multidisciplinary foot care at a single UK paediatric rheumatology outpatients department. Attributes explored were: levels of pain; mobility; ability to perform activities of daily living (ADL); waiting time; referral route; and footwear. The DCE was administered at trial baseline. DCE data were analysed using a multinomial-logit-regression model to estimate preferences and relative importance of attributes of foot care. A stated-preference WTP question was presented to estimate parents' monetary valuation of health and service improvements. RESULTS: Every attribute in the DCE was statistically significant (p < 0.01) except that of cost (p = 0.118), suggesting that all attributes, except cost, have an impact on parents' preferences for foot care for their child. The magnitudes of the coefficients indicate that the strength of preference for each attribute was (in descending order): improved ability to perform ADL, reductions in foot pain, improved mobility, improved ability to wear desired footwear, multidisciplinary foot care route, and reduced waiting time. Parents' estimated mean annual WTP for a multidisciplinary foot care service was £1,119.05. CONCLUSIONS: In terms of foot care service provision for children with JIA, parents appear to prefer improvements in health outcomes over non-health outcomes and service process attributes. Cost was relatively less important than other attributes suggesting that it does not appear to impact on parents' preferences.

The effectiveness of a multidisciplinary foot care program for children and adolescents with juvenile idiopathic arthritis: an exploratory trial.

OBJECTIVES: To evaluate the effectiveness of multidisciplinary foot-care, and to evaluate the methodological considerations of a trial of multidisciplinary care in juvenile idiopathic arthritis. DESIGN: Exploratory randomised controlled trial. SUBJECTS/PATIENTS: Children/adolescents with juvenile idio-pathic arthritis and inflammatory joint disease affecting the foot/ankle. METHODS: Standard medical care was compared with a 12 month program of multidisciplinary foot-care informed by musculoskeletal ultrasound. This program was centred on strict disease control through rigorous examination and interventions delivered by a team comprised of a paediatric rheumatologist, podiatrist, physiotherapist and musculoskeletal ultrasonographer. Patients were assessed on foot impairment and disability scores using the Juvenile Arthritis Foot Disability Index. RESULTS: Forty-four participants, aged 3-17 years were randomly assigned to receive the experimental (n = 21) or usual care (n = 23) interventions. There was an overall improvement in levels of foot related impairments in both groups over 12 months. Between-group differences in change scores for the Juvenile Arthritis Foot Disability Index were not statistically significant at 6 or 12 month follow-ups. CONCLUSION: The integrated multidisciplinary foot care interventions described in this trial were safe, but did not improve foot impairment levels relative to usual care. This trial identified several methodological challenges including recruitment/retention, difficulties with outcome tools and potential confounders.

Foot function is well preserved in children and adolescents with juvenile idiopathic arthritis who are optimally managed.

PURPOSE: The objective of this study was to compare disease activity, impairments, disability, foot function and gait characteristics between a well described cohort of juvenile idiopathic arthritis (JIA) patients and normal healthy controls using a 7-segment foot model and three-dimensional gait analysis. METHODS: Fourteen patients with JIA (mean (standard deviation) age of 12.4 years (3.2)) and a history of foot disease and 10 healthy children (mean (standard deviation) age of 12.5 years (3.4)) underwent three-dimensional gait analysis and plantar pressure analysis to measure biomechanical foot function. Localised disease impact and foot-specific disease activity were determined using the juvenile arthritis foot disability index, rear- and forefoot deformity scores, and clinical and musculoskeletal ultrasound examinations respectively. Mean differences between groups with associated 95% confidence intervals were calculated using the t distribution. RESULTS: Mild-to-moderate foot impairments and disability but low levels of disease activity were detected in the JIA group. In comparison with healthy subjects, minor trends towards increased midfoot dorsiflexion and reduced lateral forefoot abduction within a 3-5° range were observed in patients with JIA. The magnitude and timing of remaining kinematic, kinetic and plantar pressure distribution variables during the stance phase were similar for both groups. CONCLUSION: In children and adolescents with JIA, foot function as determined by a multi-segment foot model did not differ from that of normal age- and gender-matched subjects despite moderate foot impairments and disability scores. These findings may indicate that tight control of active foot disease may prevent joint destruction and associated structural and functional impairments.

Room for improvement: patient, parent, and practitioners' perceptions of foot problems and foot care in juvenile idiopathic arthritis.

OBJECTIVE: To explore the perceived impact of disease-related foot problems and foot care in juvenile idiopathic arthritis (JIA) from the perspectives of patients, parents, pediatric rheumatologists, and health professionals. DESIGN: A qualitative study using an interpretative phenomenological approach. SETTING: Outpatients department, public health service children's hospital. PARTICIPANTS: Patients (N=15; 4 adult patients, 2 parents of children with JIA, 3 pediatric rheumatologists, and 6 health professionals) from 2 National Health Service rheumatology centers (1 pediatric and 1 adult). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Qualitative outcomes were participants' perceptions elicited using semistructured interviews (telephone or face-to-face) and focus groups using an interpretative phenomenological approach. A data-driven inductive approach to coding and theme development was adopted for transcript analysis. RESULTS: Participants volunteered to take part in a total of 7 interviews and 2 focus groups. The analysis revealed 6 key themes related to the impact of foot problems and perceptions of foot care from respective groups. These were the following: (1) pain, (2) mobility impairment, (3) reduced ability to perform activities of daily living, (4) footwear difficulties, (5) poor referral pathways/delayed access to care, and (6) lack of evidence in support of conservative foot care. CONCLUSIONS: Several areas for development of foot care services were identified including a need for improved referral pathways, shorter waiting times for initial consultations, greater attention to patient compliance, and a need for better evidence in support of customized foot orthoses. Several key foot health-related outcomes were identified, which may be of importance for measuring therapeutic response to foot-related interventions.

Frequent discordance between clinical and musculoskeletal ultrasound examinations of foot disease in juvenile idiopathic arthritis.

OBJECTIVE: To evaluate the levels of agreement from independent clinical examination (CE) by a pediatric rheumatologist and podiatrist and an ultrasound (US) examination of articular and periarticular foot disease in juvenile idiopathic arthritis (JIA). METHODS: Thirty patients with JIA and a history of foot disease underwent CE and US examination of 24 foot joints, 10 tendons, and 6 periarticular soft tissues. Each site was examined independently by a rheumatologist and a podiatrist for synovitis and tenderness/swelling. The same sites were examined independently by a sonographer for effusion, synovial hypertrophy, power Doppler (PD) signal, tenosynovitis, or abnormal tendon thickening. Agreement was estimated using Cohen's unweighted kappa with corresponding 95% confidence intervals. RESULTS: Seven hundred twenty joints, 300 tendons, and 180 soft tissue sites were examined. Clinically detected synovitis, tenderness, and swelling were recorded in 42 (5.8%), 78 (10.8%), and 73 joints (10.1%), respectively. US-detected effusions, synovial hypertrophy, and PD signal were recorded in 88 (12.2%), 47 (6.5%), and 12 joints (1.7%), respectively. Subclinical foot disease was found in 52 joints (7.2%), 5 tendons (1.6%), and 4 soft tissue sites (2.2%). Agreement was consistently less than moderate (κ = <0.4) for each clinical and US interaction. CONCLUSION: This study uniquely demonstrated an interprofessional evaluation of foot disease in JIA. Interobserver agreement was less than acceptable for CE versus US, and subclinical foot disease is common in joints and periarticular soft tissues. US may be a useful tool to aid CE of the foot in JIA patients.