# Healthcare professionals' perspectives on supporting individuals with NF1 during pregnancy and decision‐making processes

## TL;DR

Healthcare professionals face challenges in supporting individuals with NF1 during pregnancy due to the condition's variability and communication barriers.

## Contribution

This study provides insights into healthcare professionals' experiences and identifies the need for improved communication tools in NF1 reproductive care.

## Key findings

- HCPs struggle to provide clear guidance due to NF1's unpredictable nature and diverse patient understanding.
- Systemic barriers like limited consultation time and lack of standardized tools hinder effective care.
- A context-specific visual tool based on TDF could improve counseling practices for NF1 patients.

## Abstract

Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic condition characterized by highly variable presentation, making reproductive decision‐making and pregnancy care particularly complex. While previous research has focused largely on clinical outcomes, little is known about how healthcare professionals (HCPs) provide care and communicate with patients during this process. This qualitative study explores the views and experiences of HCPs in providing reproductive and pregnancy‐related care for individuals with NF1. Fifteen semi‐structured interviews were conducted with genetic counselors, NF specialist nurses, and clinical geneticists in the UK. Reflexive thematic analysis was used to analyze the data. HCPs described supporting informed reproductive choices as central to their role, but this was often complicated by the unpredictable nature of NF1 and varying levels of patient understanding. They emphasized the importance of discussing reproductive choices early, yet found it particularly difficult to offer clear guidance when patients had mild symptoms themselves or drew on diverse family experiences to interpret risk. These challenges were further compounded by systemic barriers, such as limited consultation time, lack of standardized communication tools, and insufficient training. This study highlights the need for more structured and consistent communication practices to support patients with NF1 during reproductive and pregnancy care. A simplified, context‐specific visual tool informed by the theoretical domains framework (TDF) may enhance counseling practice.