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.