'Share your views'-international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer.

Autor: Wardill HR; School of Biomedicine, The University of Adelaide, Adelaide, Australia.; Supportive Oncology Research Group, Precision Medicine Theme (Cancer), South Australian Health and Medical Research Institute, Adelaide, Australia., Cheung YT; School of Pharmacy, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, Hong Kong., Boltong A; Cancer Australia, Sydney, Australia.; Kirby Institute, University of New South Wales, Sydney, Australia., Charalambous A; Cyprus University of Technology, Limassol, Cyprus.; University of Turku, Turku, Finland., Koczwara B; Flinders Medical Centre and Flinders University, Adelaide, Australia., Lustberg M; Section of Medical Oncology, Department of Medicine, Yale School of Medicine, New Haven, CT, USA.; Yale Cancer Center, New Haven, CT, USA., Tomlins E; The Royal Marsden NHS Foundation Trust, London, UK., Britto JM; Victorian Comprehensive Cancer Centre Alliance, Melbourne, Australia. joanne.britto@unimelb.edu.au.
Jazyk: angličtina
Zdroj: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer [Support Care Cancer] 2022 Dec; Vol. 30 (12), pp. 9953-9961. Date of Electronic Publication: 2022 Oct 10.
DOI: 10.1007/s00520-022-07366-y
Abstrakt: 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.
(© 2022. The Author(s).)
Databáze: MEDLINE
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