A recent VCCC study may be the first of its kind to meaningfully involve cancer consumers in the identification of PRO system requirements, a key first step in the road to PRO implementation in routine clinical care. Members of the VCCC Cancer Consumer Advisory Committee (CCAC) assisted the project team from Peter MacCallum Cancer Centre and Western Health to uncover critical insights into potential PRO system requirements.
Project lead, Associate Professor Karla Gough, Peter MacCallum Cancer Centre and the University of Melbourne, says that internationally, there is a growing pressure to use PROs as part of routine care. “Evidence from controlled trials indicates clinical benefits associated with routine monitoring, especially when patient self-reports are combined with timely follow-up and evidence-based care. However, there is little consensus on the purpose and aims of routine monitoring systems, and studies of implementation in real-world oncology settings are scarce."
This novel piece of work provides guidance and insights relevant to real-world settings.
"Studies of implementation in real-world oncology settings are scarce."
PROs are reports coming directly from patients that provide insight into their symptoms, quality of life and health status. They may be used at any stage in the cancer journey. The project team sought to understand what primary stakeholders - consumers, doctors, nurses and administrators - need from a PRO system to support the care of individual cancer patients.
Focus on equity of outcomes
Hospital-based participants in the study stressed the importance of designing systems that ensure equity of access. Specifically, they must not exclude or systematically disadvantage culturally and linguistically diverse (CALD) groups, Aboriginal and Torres Strait Islander peoples, and those with low (health) literacy. There was agreement among clinicians that PROs may be useful to screen and monitor physical and treatment-related symptoms and mental health and wellbeing.
Cancer patients and clinicians alike questioned whether a PRO system would address the most pressing challenges in the provision of quality care; indeed, both groups wondered whether other solutions may be more efficient and effective.
Positioning for change
The study delivered a comprehensive framework of key considerations for the development of a requirements specification for PRO systems. This was based on a rigorous synthesis of peer-reviewed and grey literature including a number of key review articles. It also delivered a summary of salient themes relevant to system preferences, along with a summary of system requirements by study site, and a technical report of the qualitative findings. The investigators also created a roadmap, or logic model, to guide the development of PRO systems for use with individual patients. The roadmap can be used to inform the design of proof-of-concept tests and larger scale implementation studies.
The comprehensive framework comprises ten main domains covering 24 key features. Key domains include:
- Target population
- Clinical application
- Initial scoping
- Method of gathering PRO data
- Tools to gather PRO data
- Guidelines linking PRO data to clinical actions and interventions
- Mode, setting and timing of PRO data capture
- Identification, engagement and education of target population
- Feedback system
Findings advocate for all relevant groups to be involved in decision-making about each feature to determine “what matters most”. Patients and carers, doctors and nurses, hospital administrators, IT specialists, PRO methodologists and experts in data management, experts in privacy laws and confidentiality, implementation scientists and learning specialists will all play a role in the further development of implementation.
For more information on the VCCC Building Connectivity Program, contact VCCC Senior Manager, Education Development e: firstname.lastname@example.org
This project was sponsored by the VCCC Building Connectivity Program and was developed by project leads:
A/Prof Karla Gough
Senior Research Fellow, Department of Cancer Experiences, Peter MacCallum Cancer Centre
Honorary Principal Fellow, Department of Nursing, The University of Melbourne
Prof Meinir Krishnasamy
Academic Nursing Unit, Peter MacCallum Cancer Centre
Department of Nursing, The University of Melbourne
Research and Education Lead, Nursing, Victorian Comprehensive Cancer Centre
Prof Alexander Heriot
Consultant Colorectal Surgeon and Director of Cancer Surgery, Peter MacCallum Cancer Centre
Director, Lower GI Tumour Stream, VCCC