Adherence to a selective antenatal haemoglobinopathy screening policy within a tertiary level obstetric unit in Australia.

BACKGROUND: Haemoglobinopathies represent the most common single gene disorder worldwide; however, significant centre to centre variations in antenatal screening practices exist. AIMS: To assess performance of a selective antenatal haemoglobinopathy screening policy within a presumed low-prevalence Australian population. Primary outcome was the failure to screen rate for women with at least one identifiable risk factor. Secondary outcomes included outcomes of maternal screening and rates, gestations and outcomes of paternal, prenatal and neonatal testing. MATERIALS AND METHODS: A two-year retrospective cohort study identifying all women attending for public antenatal care with at least one identifiable risk factor for haemoglobinopathy. RESULTS: At least one risk factor for haemoglobinopathy was identified in 8.8% of the entire pregnant cohort; however, the failure to screen rate was high at 83.7% overall. Screening was significantly more likely to be undertaken in multiparous women, those with multiple risk factors and women originating from the Middle East. Twenty percent of screened women returned an abnormal result; however, this led to paternal haemoglobinopathy screening in only 66.6%. Where completed, the addition of partner screening reclassified offspring to low-risk status in 85.7% of cases. CONCLUSIONS: This study demonstrates an 83.7% screen failure rate within a selective screening model raising concerns regarding the clinical utility and health equity of this approach. This major drawback of selective screening suggests that institution of a universal antenatal screening system for haemoglobinopathies, even in anticipated low-prevalence areas, will improve detection rates and ensure families receive appropriate and timely counselling.

Experiences of Patient-Led Surveillance, Including Patient-Performed Teledermoscopy, in the MEL-SELF Pilot Randomized Controlled Trial: Qualitative Interview Study.

BACKGROUND: Current clinician-led melanoma surveillance models require frequent routinely scheduled clinic visits, with associated travel, cost, and time burden for patients. Patient-led surveillance is a new model of follow-up care that could reduce health care use such as clinic visits and medical procedures and their associated costs, increase access to care, and promote early diagnosis of a subsequent new melanoma after treatment of a primary melanoma. Understanding patient experiences may allow improvements in implementation. OBJECTIVE: This study aims to explore patients' experiences and perceptions of patient-led surveillance during the 6 months of participation in the MEL-SELF pilot randomized controlled trial. Patient-led surveillance comprised regular skin self-examination, use of a mobile dermatoscope to image lesions of concern, and a smartphone app to track and send images to a teledermatologist for review, in addition to usual care. METHODS: Semistructured interviews were conducted with patients previously treated for melanoma localized to the skin in New South Wales, Australia, who were randomized to the patient-led surveillance (intervention group) in the trial. Thematic analysis was used to analyze the data with reference to the technology acceptance model. RESULTS: We interviewed 20 patients (n=8, 40% women and n=12, 60% men; median age 62 years). Patients who were more adherent experienced benefits such as increased awareness of their skin and improved skin self-examination practice, early detection of melanomas, and opportunities to be proactive in managing their clinical follow-up. Most participants experienced difficulty in obtaining clear images and technical problems with the app. These barriers were overcome or persevered by participants with previous experience with digital technology and with effective help from a skin check partner (such as a spouse, sibling, or friend). Having too many or too few moles decreased perceived usefulness. CONCLUSIONS: Patients with melanoma are receptive to and experience benefits from patient-led surveillance using teledermoscopy. Increased provision of training and technical support to patients and their skin check partners may help to realize the full potential benefits of this new model of melanoma surveillance.