Scholarlink

<p>While the physical manifestations of <i>NF2</i>-related schwannomatosis (<i>NF2</i>-SWN) have been well documented, there are a limited number of qualitative studies on health-related quality of life in <i>NF2</i>-SWN. The present study sought to explore the cumulative impact of symptoms, treatments, and healthcare on the quality of life of individuals with <i>NF2</i>-SWN. We interviewed 16 adolescent and adult patients with <i>NF2</i>-SWN enrolled in the INTUITT-NF2 clinical trial and 10 clinicians with <i>NF2</i>-SWN expertise from the United States, United Kingdom, and Australia. Analysis of patient and clinician interviews yielded five overall themes: (1) impacts on daily living, (2) impacts on life roles, (3) impacts on relationships and social integration, (4) impacts on psychological and emotional wellbeing, and (5) burden of treatment and healthcare. Multiple symptom areas contributed to impairments in quality of life across each theme. These findings reveal that quality of life in <i>NF2</i>-SWN is shaped not only by individual symptoms, but by their complex, cumulative impact—highlighting the urgent need for disease-specific tools and holistic care approaches that reflect the lived realities of patients across the lifespan.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

“It’s not any one thing, it’s always all of them, all at the same time”: quality of life in NF2-related schwannomatosis from patient and clinician perspectives

  • 期刊论文

  • 发表日期：

    2025年12月16日

查看全文
  • Sophia C. Carias,
  • Frank D. Buono,
  • Liesel Von Imhof,
  • Sneha M. Yelamanchili,
  • Hilary Chan,
  • Kaleb H. Yohay,
  • P. Leia Nghiemphu,
  • Dusica Babovic-Vuksanovic,
  • Scott R. Plotkin,
  • Vanessa L. Merker

摘要

While the physical manifestations of NF2-related schwannomatosis (NF2-SWN) have been well documented, there are a limited number of qualitative studies on health-related quality of life in NF2-SWN. The present study sought to explore the cumulative impact of symptoms, treatments, and healthcare on the quality of life of individuals with NF2-SWN. We interviewed 16 adolescent and adult patients with NF2-SWN enrolled in the INTUITT-NF2 clinical trial and 10 clinicians with NF2-SWN expertise from the United States, United Kingdom, and Australia. Analysis of patient and clinician interviews yielded five overall themes: (1) impacts on daily living, (2) impacts on life roles, (3) impacts on relationships and social integration, (4) impacts on psychological and emotional wellbeing, and (5) burden of treatment and healthcare. Multiple symptom areas contributed to impairments in quality of life across each theme. These findings reveal that quality of life in NF2-SWN is shaped not only by individual symptoms, but by their complex, cumulative impact—highlighting the urgent need for disease-specific tools and holistic care approaches that reflect the lived realities of patients across the lifespan.