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Patient Reported Outcomes and Measures in Children with Rhabdomyosarcoma.
van Gorp, Marloes; Grootenhuis, Martha A; Darlington, Anne-Sophie; Wakeling, Sara; Jenney, Meriel; Merks, Johannes H M; Hjalgrim, Lisa Lyngsie; Adams, Madeleine.
Afiliação
  • van Gorp M; Princes Máxima Center for Pediatric Oncology, 3584 CS Utrecht, The Netherlands.
  • Grootenhuis MA; Princes Máxima Center for Pediatric Oncology, 3584 CS Utrecht, The Netherlands.
  • Darlington AS; School of Health Sciences, University of Southampton, Southampton SO17 1BJ, UK.
  • Wakeling S; Founder, Alice's Arc, Rhabdomyosarcoma Children's Cancer Charity, London E4 7RW, UK.
  • Jenney M; Children's Hospital for Wales, Cardiff CF14 4XW, UK.
  • Merks JHM; Princes Máxima Center for Pediatric Oncology, 3584 CS Utrecht, The Netherlands.
  • Hjalgrim LL; Department of Paediatrics and Adolescent Medicine, Rigshospitalet, 2100 Copenhagen, Denmark.
  • Adams M; Children's Hospital for Wales, Cardiff CF14 4XW, UK.
Cancers (Basel) ; 15(2)2023 Jan 09.
Article em En | MEDLINE | ID: mdl-36672371
In addition to optimising survival of children with rhabdomyosarcoma (RMS), more attention is now focused on improving their quality of life (QOL) and reducing symptoms during treatment, palliative care or into long-term survivorship. QOL and ongoing symptoms related to the disease and its treatment are outcomes that should ideally be patient-reported (patient-reported outcomes, PROs) and can be assessed using patient-reported outcome measures (PROMS). This commentary aims to encourage PRO and PROM use in RMS by informing professionals in the field of available PROMs for utilisation in paediatric RMS and provide considerations for future use in research and clinical practice. Despite the importance of using PROMs in research and practice, PROMs have been reported scarcely in paediatric RMS literature so far. Available literature suggests lower QOL of children with RMS compared to general populations and occurrence of disease-specific symptoms, but a lack of an RMS-specific PROM. Ongoing developments in the field include the development of PROMs targeted at children with RMS specifically and expansion of PROM evaluation within clinical trials.
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Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Idioma: En Ano de publicação: 2023 Tipo de documento: Article