Factors influencing retinoblastoma patients/siblings compliance with clinic appointments

OBJECTIVE: To investigate the compliance and non-compliance of retinoblastoma patients/siblings with their appointments at the Retinoblastoma Clinic in the Pediatric Division of a tertiary eye care center, and to evaluate the contributing factors.

METHODS: This descriptive type of case series was conducted between May 1999 and May 2002 at the Retinoblastoma Clinic of King Khaled Eye Specialist Hospital, Riyadh, Kingdom of Saudi Arabia. Retinoblastoma patients/siblings were surveyed when they attended the clinics. Each family was interviewed with the help of a close-ended questionnaire. The sample of patients and their siblings were selected based on inclusion and exclusion criteria, and their charts were reviewed.

RESULTS: The study included 260 retinoblastoma patients and their siblings, 134 (51.5%) were males, and 126 (48.5%) were females. One hundred and forty-seven (56.5%) of the retinoblastoma patients/siblings in the sample were scheduled for follow up. One hundred and sixty-eight (64.6%) of retinoblastoma families were contacted by phone and reminded of their children's appointments, 37 (14.2%) were not contacted, and for 55 (21.2%) of the sample subjects, it was not known whether contact was made or even attempted. The compliance rate was 86.2%. One hundred and ninety-five (95.1%) of non-contacted patients/siblings' families attended subsequently. One hundred and thirty-six (52.3%) felt they faced barriers to treatment. Sixty-eight (26.2%) completed treatment, and 175 (67.3%) were still being followed up in the Retinoblastoma Clinic. Six factors were found to influence compliance with clinic appointments: type of appointment, frequency of no shows per clinic, frequency of no shows per patient/sibling, number of non-contacted patients/siblings, telephone contact, and patients with no contact details.

CONCLUSION: There was a high compliance rate among those scheduled for check up or follow-up. Family education and continuous updating of patients' phone contact numbers can overcome non-compliance and maximize the benefits of the phone call mechanism. Factors affecting compliance found in this study should be used for improving the compliance rate.