Priority recommendations for the implementation of patient-reported outcomes in clinical cancer care: a Delphi study

C Mazariego,A Girgis,M Jefford,B Brown,K Webber,S Hayes,L Millar,N Roberts,C Saunders,B Koczwara,R J Chan,A Anazodo,J Vardy

doi:10.1007/s11764-021-01135-2

Abstract

PurposeThe aim of this study was to develop priority recommendations for the service level implementation of patient-reported outcomes (PROs) into clinical cancer care.MethodsDevelopment of draft guidance statements was informed by a literature review, the Knowledge to Action (KTA) implementation framework, and discussion with PRO experts and cancer survivors. A two-round modified Delphi survey with key stakeholders including cancer survivors, clinical and research experts, and Information Technology specialists was undertaken. Round 1 rated the importance of the statements and round 2 ranked statements in order of priority.ResultsRound 1 was completed by 70 participants with round 2 completed by 45 participants. Forty-seven statements were rated in round 2. In round 1, the highest agreement items (>90% agreement) included those that focused on the formation of strong stakeholder partnerships, ensuring ongoing communication within these partnerships, and the use of PROs for improvement and guidance in clinical care. Items ranked as the highest priorities in round 2 included assessment of current staff capabilities and service requirements, mapping of workflows and processes to enable collection, and using collected PROs to guide improved health outcomes.ConclusionsThis stakeholder consultation process has identified key priorities in PRO implementation into clinical cancer care that include clinical relevance, stakeholder engagement, communication, and integration within the existing processes and capabilities.Implication for Cancer SurvivorsRoutine adoption of PRO collection by clinical cancer services requires multiple implementation steps; of highest priority is strong engagement and communication with key stakeholders including cancer survivors.

Highlights

The direct input from cancer patients and survivors on their needs, symptoms, and experiences of care is fundamental to the delivery of high quality, personalised cancer care [1, 2]
The development of statements used in the Delphi process was informed by a literature review examining implementation of patient reported outcome (PRO) in cancer care settings, the Knowledge to Action (KTA) implementation framework [21], and feedback from the working group (WG)
The key practical step for PRO implementation is for health services to identify current staff capabilities and the services required to undertake the collection of PROs

Summary

Introduction

The direct input from cancer patients and survivors on their needs, symptoms, and experiences of care is fundamental to the delivery of high quality, personalised cancer care [1, 2]. A standardised way to obtain such input is through the collection of patient-reported outcomes (PROs) that provide a ‘status report’ derived directly from patients [3]. Collection of PROs has been extensively utilised in research, health service performance monitoring, and more recently, in direct cancer care. Benefits of PRO collection in clinical cancer care have been well established and include greater patient satisfaction with care [6], reduced emergency presentations [7, 8] and improved survival [7, 9]. The use of PROs has been shown to support patient-centred care through increased patient activation [3], predict treatment outcomes and complications [10, 11], and assist in monitoring of the quality and safety with health services [12]

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