Protocol for the Foot in Juvenile Idiopathic Arthritis trial (FiJIA): a randomised controlled trial of an integrated foot care programme for foot problems in JIA

<b>Background</b>: Foot and ankle problems are a common but relatively neglected manifestation of juvenile idiopathic arthritis. Studies of medical and non-medical interventions have shown that clinical outcome measures can be improved. However existing data has been drawn from small non-randomised clinical studies of single interventions that appear to under-represent the adult population suffering from juvenile idiopathic arthritis. To date, no evidence of combined therapies or integrated care for juvenile idiopathic arthritis patients with foot and ankle problems exists. <b>Methods/design</b>: An exploratory phase II non-pharmacological randomised controlled trial where patients including young children, adolescents and adults with juvenile idiopathic arthritis and associated foot/ankle problems will be randomised to receive integrated podiatric care via a new foot care programme, or to receive standard podiatry care. Sixty patients (30 in each arm) including children, adolescents and adults diagnosed with juvenile idiopathic arthritis who satisfy the inclusion and exclusion criteria will be recruited from 2 outpatient centres of paediatric and adult rheumatology respectively. Participants will be randomised by process of minimisation using the Minim software package. The primary outcome measure is the foot related impairment measured by the Juvenile Arthritis Disability Index questionnaire's impairment domain at 6 and 12 months, with secondary outcomes including disease activity score, foot deformity score, active/limited foot joint counts, spatio-temporal and plantar-pressure gait parameters, health related quality of life and semi-quantitative ultrasonography score for inflammatory foot lesions. The new foot care programme will comprise rapid assessment and investigation, targeted treatment, with detailed outcome assessment and follow-up at minimum intervals of 3 months. Data will be collected at baseline, 6 months and 12 months from baseline. Intention to treat data analysis will be conducted. A full health economic evaluation will be conducted alongside the trial and will evaluate the cost effectiveness of the intervention. This will consider the cost per improvement in Juvenile Arthritis Disability Index, and cost per quality adjusted life year gained. In addition, a discrete choice experiment will elicit willingness to pay values and a cost benefit analysis will also be undertaken

Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application

<p>Abstract</p> <p>Background</p> <p>Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice.</p> <p>Methods</p> <p>Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile).</p> <p>Results</p> <p>The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedback from HRQOL data could influence patient satisfaction with the consultation, the advice given, the type of referrals and topics discussed. In this multicentre study, a control group (without the use of the KLIK PROfile) is compared to an intervention group (with the use of the KLIK PROfile). A sequential cohort design is chosen to avoid contamination between the study groups.</p> <p>Conclusions</p> <p>Based on the positive experiences with the use of the KLIK PROfile acquired during the study we conclude that the KLIK PROfile may contribute to systematically monitor and discuss HRQOL issues during consultations. The next steps will be a comprehensive evaluation of the KLIK study data and the implementation of the KLIK PROfile in daily clinical practice in different patient groups.</p

Pain and joint mobility explain individual subdimensions of the health assessment questionnaire (HAQ) disability index in patients with rheumatoid arthritis

Objective: To explore the associations between individual subdimensions of the health assessment questionnaire (HAQ) and clinical variables in patients with rheumatoid arthritis. Methods: 304 patients with rheumatoid arthritis (73% female, mean (SD) age, 58 (13) years; disease duration 6 (9) years, 69% rheumatoid factor positive) completed the HAQ for functional capacity (0–3) and a 100 mm visual analogue scale for pain. Grip strength, range of motion of the large joints, Larsen score for radiographic damage of hand and foot joints, and the number of tender and swollen joints were recorded. A logit regression model was used to study associations between subdimensions of the HAQ and other variables. Results: Mean (range) total HAQ score was 0.92 (0 to 2.88) and varied from 0.73 to 1.04 in the subdimensions. Disability was lowest in the "walking" and highest in the "reach" subdimension. Pain was an explanatory variable in all individual subdimensions. Decreased grip strength, limitation of shoulder and wrist motion, and a larger number of swollen and tender joints in the upper extremities were related to several subdimensions. A higher pain score and swollen joint count in the upper extremities, decreased grip strength, and limited motion of wrist, shoulder, and knee joints explained increased disability (higher total HAQ scores). Conclusions: In patients with rheumatoid arthritis, pain and range of movements of joints have the greatest impact on individual subdimensions of the HAQ. Extent of radiographic damage in peripheral joints and the number of swollen and tender joints are of lesser importance for function

Favourable social functioning and health related quality of life of patients with JIA in early adulthood

Objective: To evaluate the social functioning and health related quality of life (HRQoL) in patients with juvenile idiopathic arthritis (JIA) in early adulthood. Methods: The patient files of the Rheumatism Foundation Hospital were screened to identify patients born in 1976–1980 diagnosed as having JIA. HRQoL was measured by the RAND 36-item health survey 1.0; spousal relationships and educational and employment status were assessed by questionnaire. The patients were invited to a follow up study. Age and sex matched controls from the community were identified in the Finnish population registry. Results: Of 187 patients identified, 123 participated. Spousal relationships, educational level, and employment status were similar to controls. HRQoL in JIA patients was similar to controls except on the physical functioning scale. At follow up 35% of patients were in remission. Patients with active disease had poorer HRQoL in the physical component than those in remission or controls. The extended oligoarthritis group had the lowest physical and mental score in HRQoL compared with the other JIA subgroups. The patient's own evaluation was the explanatory factor in both the physical and mental component of HRQoL. Conclusion: Social functioning and HRQoL were similar in JIA patients and age, sex, and municipality matched controls. However, patients with extended oligoarthritis attained significantly lower scores in the physical and mental component of HRQoL than oligo- or polyarthritis patients. Special attention in everyday care should be paid to those patients who have active disease or the extended oligoarthritis type of disease

Uveitis in young adults with juvenile idiopathic arthritis: a clinical evaluation of 123 patients

Objective: To examine the prevalence and characteristics of uveitis in young adults with juvenile idiopathic arthritis (JIA). Methods: The study population consisted of 123 JIA patients born between 1976 and 1980 whose arthritis had been diagnosed and treatment first started at the Rheumatism Foundation Hospital in 1976 to 1995. A clinical re-evaluation was carried out by an ophthalmologist and a paediatric rheumatologist 16 years later on average. Results: The mean age of the patients was 23.5 years, 72% were women, and 63% had oligoarthritis. During the course of the disease, diagnosis of uveitis had been made in 25 patients (20%). Arthritis in the 19 patients with asymptomatic uveitis was more often ongoing than in the 98 patients without uveitis (p = 0.032). Asymptomatic uveitis was persistent in eight of the 19 cases (42%), and arthritis was active in seven of these. Four of the six patients with attacks of symptomatic uveitis had parallel treatment for arthritis. In three of 19 patients with asymptomatic uveitis and in five of six with acute uveitis the eye inflammation had started after the age of 16. At the onset of arthritis the patients with asymptomatic uveitis were younger than those without uveitis (p = 0.002). Complications of uveitis developed in six patients but their sight remained good. Conclusions: Asymptomatic uveitis continued into adulthood in almost half the uveitis patients. Most also had ongoing arthritis. Acute uveitis was often associated with persistent arthritis