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Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials.
Wolters, Pamela L; Vranceanu, Ana-Maria; Thompson, Heather L; Martin, Staci; Merker, Vanessa L; Baldwin, Andrea; Barnett, Carolina; Koetsier, Kimberley S; Hingtgen, Cynthia M; Funes, Christopher J; Tonsgard, James H; Schorry, Elizabeth K; Allen, Taryn; Smith, Taylor; Franklin, Barbara; Reeve, Stephanie.
Afiliação
  • Wolters PL; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Vranceanu AM; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Thompson HL; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Martin S; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Merker VL; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Baldwin A; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Barnett C; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Koetsier KS; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Hingtgen CM; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Funes CJ; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Tonsgard JH; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Schorry EK; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Allen T; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Smith T; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Franklin B; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
  • Reeve S; From the Pediatric Oncology Branch (P.L.W., S.M.), National Cancer Institute, NIH, Bethesda, MD; Integrated Brain Health Clinical and Research Program (A.-M.V., C.J.F.), Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston; Department of Communication Sciences and
Neurology ; 97(7 Suppl 1): S50-S63, 2021 08 17.
Article em En | MEDLINE | ID: mdl-34230198
ABSTRACT

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 psychosocial trials for children and adults with neurofibromatosis (NF) type 1, NF2, and schwannomatosis.

METHODS:

The PRO working group of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration used systematic methods to review, rate, and recommend existing self-report and parent-report PRO measures of generic and disease-specific QoL for NF clinical trials. Recommendations were based on 4 main criteria patient characteristics, item content, psychometric properties, and feasibility.

RESULTS:

The highest-rated generic measures were (1) the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales for NF clinical trials for children or for children through adults, (2) the Functional Assessment of Cancer Therapy-General for adult medical trials, and (3) the World Health Organization Quality of Life-BREF for adult psychosocial trials. The highest-rated disease-specific measures were (1) the PedsQL NF1 Module for NF1 trials, (2) the NF2 Impact on Quality of Life Scale for NF2 trials, and (3) the Penn Acoustic Neuroma Quality of Life Scale for NF2 trials targeting vestibular schwannomas. To date, there are no disease-specific tools assessing multidimensional domains of QoL for schwannomatosis.

CONCLUSIONS:

The REiNS Collaboration currently recommends these generic and disease-specific PRO measures to assess multidimensional domains of QoL for NF clinical trials. Additional research is needed to further evaluate the use of these measures in both medical and psychosocial trials.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Neoplasias Cutâneas / Neurofibromatoses / Autorrelato / Neurilemoma Tipo de estudo: Guideline Limite: Adult / Child / Humans / Male Idioma: En Ano de publicação: 2021 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Neoplasias Cutâneas / Neurofibromatoses / Autorrelato / Neurilemoma Tipo de estudo: Guideline Limite: Adult / Child / Humans / Male Idioma: En Ano de publicação: 2021 Tipo de documento: Article