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To better conceptualize the experience of patients with pNFs, this qualitative study sought to identify the most important outcomes to assess from the perspective of patients, families, and clinicians. Clinicians, patients age 5 years old and above, and parents of patients aged 5\u201317 years participated in semi\u2010structured interviews to elicit the pNF symptoms\/concerns considered most important to assess. The data were analyzed using an iterative coding procedure and the frequency with which symptoms\/concerns emerged was tabulated. Eight clinicians, 31 patients, and 17 parents of patients participated in semi\u2010structured interviews. The most frequently reported concerns raised by patients across all age groups included pain, appearance\/disfigurement, social activity\/role participation, stigma, and anxiety. For parents, physical functioning was the primary concern, followed by pain, social activity\/role participation, appearance\/disfigurement, and social relationships. The resulting conceptual framework included five domains to represent the most important identified symptoms\/concerns: pain, social functioning, physical function impact, stigma, and emotional distress. This conceptual framework describing the symptoms\/concerns of patients with pNF can help investigators create a measurement system to improve assessment of aspects of QOL only patients can report on. 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