The development of the PlexiQoL: A patient‐reported outcome measure for adults with neurofibromatosis type 1‐associated plexiform neurofibromas
Background To develop and validate a patient‐reported outcome (PRO) measure of quality
of life (QoL), specific to patients with Neurofibromatosis Type 1 (NF1)‐associated plexiform …
of life (QoL), specific to patients with Neurofibromatosis Type 1 (NF1)‐associated plexiform …
[HTML][HTML] The PlexiQoL, a patient-reported outcome measure on quality of life in neurofibromatosis type 1-associated plexiform neurofibroma: translation, cultural …
BAE Dhaenens, SA van Dijk, W Taal… - Journal of Patient …, 2024 - Springer
Background Half of the patients with Neurofibromatosis type 1 (NF1) develop one or more
tumours called plexiform neurofibromas, which can have a significant impact on Quality of …
tumours called plexiform neurofibromas, which can have a significant impact on Quality of …
Using a qualitative approach to conceptualize concerns of patients with neurofibromatosis type 1 associated plexiform neurofibromas (pNF) across the lifespan
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 …
variety of symptoms and concerns that affect patients' quality of life (QOL), highlighting the …
[HTML][HTML] Impact of neurofibromatosis type 1 with plexiform neurofibromas on the health-related quality of life and work productivity of adult patients and caregivers in …
HK Yoo, A Porteous, A Ng, K Haria, A Griffiths, A Lloyd… - BMC neurology, 2023 - Springer
Background Plexiform neurofibromas (PN) are complex, benign nerve-sheath tumours that
occur in 30–50% of patients with neurofibromatosis type 1 (NF1), a rare, genetic disorder …
occur in 30–50% of patients with neurofibromatosis type 1 (NF1), a rare, genetic disorder …
Patient reported outcomes measurement information system and quality of life in neurological disorders measurement system to evaluate quality of life for children and …
JS Lai, SE Jensen, J Charrow, R Listernick - The Journal of pediatrics, 2019 - Elsevier
Objective To assess the health-related quality of life of children with neurofibromatosis type
1-related plexiform neurofibromas (pNF) using a battery of patient-reported outcome …
1-related plexiform neurofibromas (pNF) using a battery of patient-reported outcome …
Lifespan development: symptoms experienced by individuals with neurofibromatosis type 1 associated plexiform neurofibromas from childhood into adulthood
SE Jensen, ZS Patel, R Listernick, J Charrow… - Journal of clinical …, 2019 - Springer
This secondary data analysis qualitatively identified salient concerns reported by individuals
with Neurofibromatosis Type 1 (NF1)-associated plexiform neurofibromas (pNFs) at different …
with Neurofibromatosis Type 1 (NF1)-associated plexiform neurofibromas (pNFs) at different …
A qualitative study of the impact of plexiform neurofibromas on need fulfilment in adults with neurofibromatosis type 1
A Heaney, J Wilburn, S Langmead… - SAGE Open …, 2019 - journals.sagepub.com
Objective: To explore the impact of plexiform neurofibromas on the lives of adults with
neurofibromatosis type 1. Background: Neurofibromatosis type 1 is a complex neurogenetic …
neurofibromatosis type 1. Background: Neurofibromatosis type 1 is a complex neurogenetic …
Development of the pediatric quality of life inventory neurofibromatosis type 1 module items for children, adolescents and young adults: qualitative methods
Health-related quality of life (HRQOL) is arguably one of the most important measures in
evaluating effectiveness of clinical treatments. At present, there is no disease-specific …
evaluating effectiveness of clinical treatments. At present, there is no disease-specific …
Current recommendations for patient-reported outcome measures assessing domains of quality of life in neurofibromatosis clinical trials
PL Wolters, AM Vranceanu, HL Thompson, S Martin… - Neurology, 2021 - AAN Enterprises
Objective To review and recommend patient-reported outcome (PRO) measures assessing
multidimensional domains of quality of life (QoL) to use as clinical endpoints in medical and …
multidimensional domains of quality of life (QoL) to use as clinical endpoints in medical and …
The NFTI-QOL: a disease-specific quality of life questionnaire for neurofibromatosis 2
RE Hornigold, JF Golding, G Leschziner… - … Surgery Part B: Skull …, 2012 - thieme-connect.com
The objective of this study was to develop a reliable, validated disease-specific score
measuring quality of life (QOL) in clinical practice and treatment trials in Neurofibromatosis 2 …
measuring quality of life (QOL) in clinical practice and treatment trials in Neurofibromatosis 2 …
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