A1 Vertaisarvioitu alkuperäisartikkeli tieteellisessä lehdessä

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




TekijätWardill Hannah R., Cheung Yin Ting, Boltong Anna, Charalambous Andreas, Koczwara Bogda, Lustberg Maryam, Tomlins Elaine, Britto Joanne M.

KustantajaSPRINGER

Julkaisuvuosi2022

JournalSupportive Care in Cancer

Tietokannassa oleva lehden nimiSUPPORTIVE CARE IN CANCER

Lehden akronyymiSUPPORT CARE CANCER

Sivujen määrä9

ISSN0941-4355

eISSN1433-7339

DOIhttps://doi.org/10.1007/s00520-022-07366-y

Verkko-osoitehttps://doi.org/10.1007/s00520-022-07366-y

Rinnakkaistallenteen osoitehttps://research.utu.fi/converis/portal/detail/Publication/176822600


Tiivistelmä

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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