Sir,

Education is key for health service users to facilitate understanding of complex health issues, such as risk factors and potential benefits of lifestyle and medical interventions. It is especially important in chronic conditions such as age-related macular degeneration (AMD).1

Information leaflets are commonly used for patient education,2 and personalised health records, where patient information is combined with a health record, have been successfully established in other specialties.3 This concept has yet to be translated into ophthalmic practice.

We have developed a novel personalised hand-held AMD record (PHAR) as a small booklet, combining ‘easy to understand’ information about AMD with a personalised health record, to increase patient education and engagement in the AMD service.

A PHAR (available online: http://www.ouh.nhs.uk/patient-guide/leaflets/files/13840Pmacular.pdf) was designed with information on various aspects about AMD, local support services and an intravitreal injection (IVI), and outpatient appointment record.

A self-reported questionnaire containing six questions rated from 0 to 10 (0=no knowledge) was designed to evaluate our patients’ knowledge in a number of domains related to AMD. The follow-up questionnaire also asked if patients had (1) read the information record; (2) found the IVI and outpatient appointment records useful; and (3) if they would recommend this resource to other AMD patients.

Over 7 weeks, 98 patients with neovascular AMD (nAMD) were approached to complete the baseline questionnaire prior to receiving a PHAR.

All 98 patients completed the baseline questionnaire. Of these, 93 patients (94.9%) completed the follow-up questionnaire after a mean of 40 days (SD: 15). All 93 patients indicated they had read the PHAR. There was a significant increase in patient’s knowledge in all six questionnaire domains (Table 1). The outpatient appointment and IVI record was useful in 85 (91.4%) and 78 patients (83.9%), respectively. All patients recommended this resource to other AMD patients.

Table 1 Mean baseline and follow-up questionnaire scores with percentage improvement and statistical significance using a paired Student t-test (n=98)

The introduction of an easy-to-understand novel PHAR significantly improved patients’ knowledge regarding a number of domains related to AMD and its treatment.

The Amsler grid remains an important tool for monitoring central vision despite patient non-adherence.4 The PHAR contains an Amsler grid with easy-to-follow instructions and, coupled with a significant improvement in understanding of its importance (127.5%), is expected to contribute to earlier detection of nAMD for the second eye.

Patients with chronic diseases benefit significantly from social support networks with improved overall functioning.5 Knowledge of available external support services improved by over 60% in this study. Thus, we expect this PHAR to contribute to this.

Patient knowledge of risk factors and protective factors in AMD is known to be poor. The PHAR improved patient knowledge by 40% in this area, allowing patients to make beneficial lifestyle changes to reduce the risk of progression of their AMD.

The implementation of a novel PHAR into the AMD service significantly improved knowledge regarding AMD. Better patient education improves clinical outcomes and patient engagement. Thus, the introduction of this PHAR will enable us to deliver these goals for patients with AMD.