Barriers to Optimal NF1-PN Care for Patients

EP: 1.Genetic And Molecular Mechanisms of NF1

EP: 2.Diagnosis, Epidemiology, And Risk Factors Of NF1-PN

EP: 3.Hallmark Symptoms and Clinical Features of NF1-PN

EP: 4.Quality of Life in Patients With NF1-PN

EP: 5.Key Clinical Considerations in NF1-PN Management

EP: 6.Unmet Needs of Patients Living With NF1-PN

EP: 7.Main Goals in the Management of NF1-PN

EP: 8.Rationale for MEK Inhibitors and Surgery

EP: 9.Selumetinib as a Therapeutic Option for NF1-PN

EP: 10.Examining Combination Therapy In NF1-PN

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EP: 11.Barriers to Optimal NF1-PN Care for Patients

Summary for Physicians

Addressing Psychosocial Impacts of NF1-PN

Current therapies primarily focus on physical symptoms (tumor growth, pain, and functional impairment), but psychosocial support remains a critical component of care for patients with neurofibromatosis type 1–associated plexiform neurofibromas (NF1-PN). Treatment options like surgical resection can help address disfigurement, but cognitive disabilities and psychosocial stress due to visible deformities or functional limitations often require additional support. Psychotherapy, counseling, and social work interventions can assist in managing anxiety, depression, and social stigma. Despite this, gaps remain in adequately addressing the full psychosocial burden, particularly in the context of long-term disease management and chronic disfigurement.

Access to Therapies and Barriers

While therapies like selumetinib show promise, accessibility remains a challenge due to factors such as cost, insurance coverage, and step therapy requirements. Many insurance providers may require failure of alternative treatments (such as surgical options or older therapies) before approving newer medications like MEK inhibitors. Geographic and health care system disparities also affect access to specialized care and clinical trials, further complicating management for patients with NF1-PN.