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'Share your views'-international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer.
Wardill, Hannah R; Cheung, Yin Ting; Boltong, Anna; Charalambous, Andreas; Koczwara, Bogda; Lustberg, Maryam; Tomlins, Elaine; Britto, Joanne M.
Afiliación
  • Wardill HR; School of Biomedicine, The University of Adelaide, Adelaide, Australia.
  • Cheung YT; Supportive Oncology Research Group, Precision Medicine Theme (Cancer), South Australian Health and Medical Research Institute, Adelaide, Australia.
  • Boltong A; School of Pharmacy, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, Hong Kong.
  • Charalambous A; Cancer Australia, Sydney, Australia.
  • Koczwara B; Kirby Institute, University of New South Wales, Sydney, Australia.
  • Lustberg M; Cyprus University of Technology, Limassol, Cyprus.
  • Tomlins E; University of Turku, Turku, Finland.
  • Britto JM; Flinders Medical Centre and Flinders University, Adelaide, Australia.
Support Care Cancer ; 30(12): 9953-9961, 2022 Dec.
Article en En | MEDLINE | ID: mdl-36214877
INTRODUCTION: Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are well-positioned to foster and endorse best practice. METHODS: Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as "people affected by cancer". Recruitment to an online cross-sectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies. RESULTS: The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as 'patient' from a set of defined terms; however, this only accounted for 49-67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%). CONCLUSIONS: This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.
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Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Participación del Paciente / Neoplasias Tipo de estudio: Guideline / Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Límite: Female / Humans / Male Idioma: En Revista: Support Care Cancer Asunto de la revista: NEOPLASIAS / SERVICOS DE SAUDE Año: 2022 Tipo del documento: Article País de afiliación: Australia

Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Participación del Paciente / Neoplasias Tipo de estudio: Guideline / Observational_studies / Prevalence_studies / Qualitative_research / Risk_factors_studies Límite: Female / Humans / Male Idioma: En Revista: Support Care Cancer Asunto de la revista: NEOPLASIAS / SERVICOS DE SAUDE Año: 2022 Tipo del documento: Article País de afiliación: Australia