Objectives The National Cancer Control Programme (NCCP) began developing national evidence based clinical guidelines in 2012. In 2017 we decided to generate our guideline recommendations using the GRADE process. There is clear guidance on appraising the quality of the evidence and performing bias assessments. However, the challenge begins with the integration of the best evidence, benefit and harm, patient values and resources when generating recommendations. Patients are full members of the guideline development groups; however, the question remains how do we truly capture patient values? By inviting a philosopher/medical ethicist to be a member of the GDG, integrating patient values has been explored in our update of the national clinical guideline diagnosis staging and treatment of patients with prostate cancer.
Methods A guideline development group was established with representatives from diagnostics, surgery, oncology, nursing, research, patient representatives and a philosopher/medical ethicist. The guideline questions were generated by the GDG. Literature searches, appraisal of the evidence and data extraction were performed by the NCCP research team. Generation of recommendations by the GDG follows a formal standardised protocol using an evidence to decision framework developed in NCCP. The following items are considered; the evidence, its quality its generalisability/directness, benefit and harm, patient values, resources and cost. The evidence statements are written in real time and recommendations graded strong or weak. During the first meeting to generate the guideline recommendations the philosopher challenged the group to consider the meaning behind words such as. generalisability, equity and justice. We also explored patient important values such as pain, certainty, anxiety, quality of life, trust, choice and autonomy.
Results Our evidence to decision framework has been restructured to contain a matrix to explore patient values for each option under discussion. New headings have been added with prompts to stimulate discussion with emphasis on patient important outcomes, equity, acceptability and a richer exploration on the concept of generalisation. Each evidence statement now has clear headings for quality of the evidence, benefit and harm, patient values and resources. Framing the discussion in this manner resulted in a richer conversation. For the first clinical question under review there was high level evidence, however the clinical members in the group were concerned that recommending a course of action could lead to greater inequity within our health system. This has resulted in escalation of the GDG recommendations within the health service with service redevelopment proposed.
Conclusions Involvement of the philosopher/medical ethicist led to the development of clear questions, prompts and a matrix, in the patient values domain. This resulted in the GDG having greater confidence in exploring patient values when generating guideline recommendations. This would challenge guideline developers to expand the membership of their GDG to include this expertise. Of most importance this led to a richer discussion and resulted in more consideration being given to a recommendation even in the presence of high-level evidence. As a result, there is earlier engagement with the services to enable implementation of the recommendations with fidelity to ensure we do not create further inequity within the health services.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.