Health Care Survey for the NF Community

Thank you to everyone who took the time to complete the health care survey.

The 2020 Health Care for Patients with NF survey brings to light the experiences of the NF community when receiving care. The survey was completed by 52 participants, compromising both patients and parents answering on behalf of dependents with NF.

NF patients and their families seek care from a variety of specialists including ophthalmologists (73.5% of survey participants), geneticists (63.3%), paediatricians (59.2%). Almost half of the participants (49%) coordinated their own care, with GPs and pediatricians as the primary coordinators of care for 20.4% and 10% of participants respectively. While most participants received NF-specific healthcare several times a year, almost a third (30.7%) received care once a year or less often.

Symptoms reported by participants included, among others: pain, internal and external tumours, bone pathologies, speech difficulties and vision loss. The most commonly sought health care resources were radiology (for diagnostic and follow-up purposes), surgery, and physical and speech therapy. Some participants noted that they received procedures for the treatment of scoliosis and other bone conditions. Of those who had been in a clinical trial, most trials focused on bone pathology, including Vitamin D studies. Almost all those surveyed were at least conditionally willing to participate in NF-related clinical trials based on factors such as what is being investigated, whether or not participation would put the patient in further pain, and the time commitment required.

The greatest challenges that survey participants identified were lack of knowledge and awareness of NF and its subtypes by the public or by physicians, mental health challenges (like depression or anxiety), and lack of support for coordinating care or lack of access to specific forms of care, including educational resources to support learning differences. Some also noted social stigma, including difficulties in finding employment, and NF symptoms such as pain or loss of vision.

While participants agreed that requested medical services could be readily arranged, there was mixed agreement on medical practitioners being adequately knowledgeable about NF, and medical care being coordinated, accessible, and affordable. Participants noted that frequently sought services like surgical removal of tumors are not covered by BC MSP. Further, they identified barriers to coordinated healthcare including the lack of centralized access to medical records, lack of convenient access to GPs, and lack of physicians or clinics specialized in NF treatment in BC. Participants noted that these barriers became more prominent upon transition from peadiatric to adult care. The cost and inconvenience of travel and accommodation were identified as potential deterrents from accessing a Vancouver-based clinic; however, most participants (89.8%) stated they would use the services of a Vancouver-based NF clinic, and the majority (71.4%) were willing to use telehealth appointments to access healthcare.

The results of the 2020 survey highlight specific areas that could enhance the care of patients and families. These areas include ensuring greater level of NF-related knowledge among healthcare providers, as well as the use of technology to further enable more paths to quality healthcare to support the physical and mental wellbeing of patients with NF and their families.