Italian cross-cultural adaptation of the Quality of Communication questionnaire and the 4-item advance care planning engagement questionnaire

Author:

De Panfilis LudovicaORCID,Veronese SimoneORCID,Perin Marta,Cascioli Marta,Farinotti Mariangela,Kruger Paola,Zagarella Roberta M.ORCID,Curtis J. R.ORCID,Sudore Rebecca L.,Nielsen Elizabeth L.,Engelberg Ruth A.,Giordano AndreaORCID,Solari AlessandraORCID,

Abstract

Background Advance care planning (ACP) is influenced by several factors (e.g., patient’s readiness to engage, clinician’s skills, and the cultural environment). Availability of reliable and valid self-reported measures of the ACP domains is crucial, including cross-cultural equivalence. Aim To culturally adapt into Italian the 19-item Quality of Communication (QOC) and the 4-item ACP Engagement (4-item ACP-E) questionnaires. Methods We translated and culturally adapted the two questionnaires and produced a significant other (SO) version of the QOC (QOC-SO). Each questionnaire was field tested via cognitive interviews with users: nine patients (QOC, 4-item ACP-E) and three SOs (QOC-SO) enrolled at three palliative care services. Results We made minor changes to 5/19 QOC items, to improve clarity and internal consistency; we changed the response option ‘didn’t do’ into ‘not applicable’. Finally, we slightly revised the QOC to adapt it to the paper/electronic format. QOC debriefing revealed that the section on end of life was emotionally challenging for both patients and SOs. We simplified the 4-item ACP-E layout, added a sentence in the introduction, and revised the wording of one item, to improve coherence with the Italian ACP legislation. ACP-E debriefing did not reveal any major issue. Conclusions Results were satisfactory in terms of semantic, conceptual and normative equivalence of both questionnaires. Acceptability was satisfactory for the 4-item ACP-E, while findings of the QOC cognitive debriefing informed a major amendment of a pilot trial protocol on ACP in multiple sclerosis (ConCure-SM): use of the interviewer version only, in an adaptive form. Psychometric testing of both questionnaires on a large, independent sample will follow.

Funder

Fondazione Italiana Sclerosi Multipla

National Institute on Aging, National Institutes of Health

Italian Ministry of Health

Publisher

Public Library of Science (PLoS)

Subject

Multidisciplinary

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