TY - JOUR

T1 - MORECare research methods guidance development: recommendations for presenting results to stakeholders from palliative and end of life care research

AU - Preston, Nancy

AU - Short, V.

AU - Grande, G.

AU - Anscombe, E.

AU - Higginson, I. J.

AU - Evans, C.

AU - Benalia, H.

AU - Todd, C.

PY - 2012/6

Y1 - 2012/6

N2 - Aims: To identify best practice about how palliative and endof life (P&EoLC) research outputs should be presented tokey stakeholders [clinicians, managers and service users].Methods: We conducted 3 consultation workshops withCECo: 2 with patients/carers, 1 with clinicians/managersabout how P&EoLC research results should be presented.Prior to workshops participants were sent P&EoLC researchoverviews aimed at the public. Clinicians/managers werealso sent journal abstracts. Following discussion, nominalgroup techniques were used to produce recommendationsfor how research should be presented which were rated.Narrative comments were collected.Results: Service user workshops comprised 18 participantsmaking 41 recommendations. There was consensus thatclarity of information and use of lay language was mostimportant. Also more than primary endpoints should begiven; include quality of life and a description of ‘what it waslike to be on a study’. Users wanted independent indicators ofquality such as a star rating system. Links to more informationor help were needed as results could be upsetting. Despitelengthy discussion no consensus was reached on whetherthere should be explicit reference to P&EoLC.Clinician/manager workshops comprised 12 participantsmaking 19 recommendations. The main recommendationwas the need to define what terms mean: end of life, palliativecare, advanced care. More direct information about clinicaland financial implications of research should be available.They wanted abstracts to be more accessible and readable.Conclusions: Researchers need to be aware of numerousaudiences when preparing research outputs. Increasinglylay people access research findings themselves via theinternet, highlighting the need for clear and relevant researchreports. Clinicians want reports that show both clinical andfinancial implications for practice. No consensus could bereached on use of terminology, replicating the EAPC 2009position paper.

AB - Aims: To identify best practice about how palliative and endof life (P&EoLC) research outputs should be presented tokey stakeholders [clinicians, managers and service users].Methods: We conducted 3 consultation workshops withCECo: 2 with patients/carers, 1 with clinicians/managersabout how P&EoLC research results should be presented.Prior to workshops participants were sent P&EoLC researchoverviews aimed at the public. Clinicians/managers werealso sent journal abstracts. Following discussion, nominalgroup techniques were used to produce recommendationsfor how research should be presented which were rated.Narrative comments were collected.Results: Service user workshops comprised 18 participantsmaking 41 recommendations. There was consensus thatclarity of information and use of lay language was mostimportant. Also more than primary endpoints should begiven; include quality of life and a description of ‘what it waslike to be on a study’. Users wanted independent indicators ofquality such as a star rating system. Links to more informationor help were needed as results could be upsetting. Despitelengthy discussion no consensus was reached on whetherthere should be explicit reference to P&EoLC.Clinician/manager workshops comprised 12 participantsmaking 19 recommendations. The main recommendationwas the need to define what terms mean: end of life, palliativecare, advanced care. More direct information about clinicaland financial implications of research should be available.They wanted abstracts to be more accessible and readable.Conclusions: Researchers need to be aware of numerousaudiences when preparing research outputs. Increasinglylay people access research findings themselves via theinternet, highlighting the need for clear and relevant researchreports. Clinicians want reports that show both clinical andfinancial implications for practice. No consensus could bereached on use of terminology, replicating the EAPC 2009position paper.

U2 - 10.1177/0269216312446391

DO - 10.1177/0269216312446391

M3 - Meeting abstract

VL - 26

SP - 540

EP - 541

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 4

M1 - P198

ER -