التفاصيل البيبلوغرافية
العنوان:
Using a qualitative approach to conceptualize concerns of patients with neurofibromatosis type 1 associated plexiform neurofibromas (pNF) across the lifespan
المؤلفون:
Joel Charrow , Zabin S. Patel , Robert Listernick , Sally E. Jensen , Jin Shei Lai
المصدر:
American Journal of Medical Genetics Part A . 173:79-87
بيانات النشر:
Wiley, 2016.
سنة النشر:
2016
مصطلحات موضوعية:
Adult , Male , Neurofibromatosis 1 , Adolescent , Physical function , Young Adult , 03 medical and health sciences , 0302 clinical medicine , Physical functioning , Surveys and Questionnaires , Genetics , Humans , Medicine , Neurofibromatosis , Child , Qualitative Research , Genetics (clinical) , Aged , Neurofibroma, Plexiform , business.industry , Patient-centered outcomes , Middle Aged , Disfigurement , medicine.disease , Patient Outcome Assessment , Phenotype , Socioeconomic Factors , Conceptual framework , Child, Preschool , 030220 oncology & carcinogenesis , Quality of Life , Anxiety , Female , Self Report , medicine.symptom , business , 030217 neurology & neurosurgery , Qualitative research , Clinical psychology
الوصف:
Neurofibromatosis Type 1 (NF1) plexiform neurofibromas (pNFs) are associated with a variety of symptoms and concerns that affect patients' quality of life (QOL), highlighting the value of incorporating the patients' perspective when evaluating treatment outcomes. 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 5-17 years participated in semi-structured 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-structured 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. It may also provide the ability to identify symptoms/concerns that might warrant referrals to various clinical disciplines. © 2016 Wiley Periodicals, Inc.
تدمد:
1552-4825
الوصول الحر:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::74d0fdb7bc36d5a410ae5e51de232989Test https://doi.org/10.1002/ajmg.a.37987Test
حقوق:
CLOSED
رقم الانضمام:
edsair.doi.dedup.....74d0fdb7bc36d5a410ae5e51de232989
قاعدة البيانات:
OpenAIRE
