Best practice for the selection, design and implementation of UK Kidney Association guidelines: a modified Delphi consensus approach

Value of UKKA guidelines

Across the responses from HCPs there was very high agreement on the importance and utility of guidelines (statements 1–4, 7–11, ≥86%). Responses to statement 4 (99%) also highlight that, while national guidelines are essential, there needs to be capacity for local variations in practice. This is supported by research into CPG implementation, which has found that flexibility and autonomy are key to encouraging HCPs to change their behaviour.18

In the past, the UKKA has produced ‘commentaries’ on guideline documents from other specialist societies (eg, Kidney Disease: Improving Global Outcomes) with specific advice on how these relate to UK practice or require specific considerations around their implementation. Responses to statement 5 (61%) and 6 (59%) (suggesting the UKKA should not provide commentaries and that they are less useful than guidelines) did not reach the consensus threshold. This suggests UKKA commentaries on national and international guidelines, along with recommendations for UK implementation, may be an important addition. Figure 3A,B shows a central tendency bias for these statements, with the majority of responses being ‘tend to agree’ and ‘tend to disagree’. A lack of strong opinion on these statements could mean some respondents were unsure of how to respond, particularly as there was no definition provided for what constituted a UKKA ‘commentary’. However, the literature repeatedly finds improving CPG visibility through promotion, education and short communications can help to increase their implementation.3 7 19 26 Therefore, commentaries created by the UKKA could help encourage adoption of new CPGs by simplifying and clarifying their recommendations. Further, where commentaries cover international guidelines, they can give a discussion and interpretation relevant to the UK context.

Patient responses also showed strong consensus on the importance of guidelines, particularly documents which are jargon-free, and person centred. Survey results, alongside input from the lay representative, clearly show that people with kidney disease feel empowered when they have access to resources which they can read and process in their own time outside of appointments. The availability of such person-centred guidelines will help patients to make more informed decisions and potentially lead to improved health communication between patients and their healthcare providers.24 25 The lay representative also highlighted that people with long-term conditions want reputable information, sourced from the same sites accessed by HCPs, which is reflected in statement 8 (HCPs 98%, patients 95%). A strength of the UKKA guidance is that all documents can be found in a single site and are accessible to people with CKD and HCPs. This is something that will need to continue with future guidelines to ensure these documents remain accessible.

UKKA guideline selection and design

Following on from aspects of accessibility highlighted in topics A and B, responses to statements in topics C and D emphasised a need for engagement and user-friendliness. Statements 12 (93%) and 13 (91% HCPs, 87% patients) show there is a need to include a variety of stakeholders when selecting potential topics for guidelines, a view strongly supported within the literature.23–25 This is reinforced by the agreement to statements 15–18 (≥92%), showing respondents believe a multi-professional approach should be taken to identifying and prioritising guideline topics. While it has been acknowledged that cross specialty CPGs can be difficult to develop,32 33 a lack of consideration for comorbidities or age (as a proxy for comorbidity) limits the applicability of CPGs.34

When considering the design of future guidelines, statements 14 (98% HCPs, 91% patients) and 20 (88% HCPs, 84% patients) demonstrate the overarching need for guidance to be simple, equitable and indiscriminate. On the basis of this, it is suggested that not only will the UKKA make all guidelines available, but also have a section of their website where all HCPs and people with CKD can suggest topics for future guidelines, as seen in recommendations by Blackwood et al.25 Following this, it is clear there will be a need to prioritise the development of guidelines. The process of this will need to be both rigorous and transparent. Therefore, it is suggested that a ‘RAG’ (red, amber, green traffic light) system is used to standardise the process by which guideline development is prioritised.

The literature states that CPGs are crucial as they provide management pathways and treatments based on evidence.1 2 Currently there is a reliance on clinical trials to provide this evidence base.35 However, trials may not be available, or even necessary, to back every recommendation. It has been argued that other forms of evidence should be seen as valid when compiling data for guidelines.26 35 The current research found strong support (statement 25; 92% HCPs, 80% patients) for the use of consensus-based evidence within guidelines. Banno et al have also argued for the value of consensus-based evidence, underlining the need for more Delphi studies to provide clear, documented consensus on the content of guidelines. There needs to be an element of caution here however, consensus based guidelines can generate inappropriately strong recommendations compared with evidence based guidelines and so it is important to ensure appropriate alignment of quality of evidence with strength of recommendations.36 Wider use of such practice would ensure the quality of guidelines, and allow for more inclusive guideline design, by assimilating patient input with clinical data and HCP recommended treatment pathways.37

Consensus with statements 22 (93%) and 23 (98%) show that HCPs are keen to take a multi-disciplinary approach to guideline development. The need for alignment across professional guidelines is further reinforced by consensus with statement 30 (98%). As discussed, developing cross specialty CPGs can be complex, hindered by lack of time, resources and standard CPG development methodologies.32 33 To ensure that future UKKA guidelines reflect the results of the current research, it is evident that the UKKA’s standards for guideline development will need to be updated to reflect this multi-stakeholder approach. When developing future guidelines, the UKKA will need to reach out to other societies and professional bodies for input, strengthening cross-discipline ties and communication. Collaboration across disciplines must be seen as pivotal, and the focus should be on how working together can create more broadly applicable, practical guidelines, by pooling knowledge and resources.32 We believe that this approach could be a roadmap for optimised clinical management across medical specialties in the UK.

As set out in the Climate Change Act (2008), the UK National Health Service (NHS) has made a commitment to halve greenhouse gas emissions by 2025 and reach net zero by 2050. Within the NHS, the provision of kidney care is a carbon intensive specialty when considered in terms of the numbers of patients treated with renal replacement therapy.38 The strong consensus with statement 24 (92%) shows the commitment to this agenda, to pay particular attention within guidelines to inform carbon-reduction strategies that live up to the UKKA sustainability agenda; to meet or exceed NHS carbon net zero goals and, the ambition to reduce waste to landfill or incineration by 80%.

Implementing future UKKA guidelines

The UKKA is committed to reinforcing an agile approach to implementing and updating their guidelines. Although it is positive to see from the HCP response to statement 26 (‘guidelines are difficult to implement’; 49%) that many respondents believe guidelines are not difficult to implement, it still does mean that near enough half of the responders feel that guideline implementation can be challenging. There was no difference seen in the agreement levels across experience or geographic region. While literature around guideline implementation highlights potential areas where translating recommendations into practice can fail, it is heartening to see that within nephrology negative beliefs in guideline implementation may not be the central issue. However, it will still be necessary to prepare for other potential implementation pitfalls in the future. In order to address the needs of all HCPs and patients the use of a multi-faceted implementation approach (eg, easy to use and practical guidelines, combined with promotion, education, monitoring) is recommended.13 17 18 20

Consensus with statements 28 (HCPs 93%, patients 91%) and 29 (93%) show there is a need for guidelines to be practical and of use for both HCPs and patients, particularly within consultations. A more efficient structure to guidelines, including a jargon-free summary, could help make guidance more accessible to all audiences. When taken alongside the need for simplicity, it could be suggested that the ideal guideline is delivered in two ways:

1. A central guideline designed to educate and support HCPs and people with CKD by providing focused descriptions of healthcare issues and the evidence base for treatments, alongside concise, actionable recommendations.

2. A supplementary document with technical details, which enriches the information and evidence provided in the main guideline.

Further to this, promotion of new guidelines could be encouraged by creating a calendar of guideline release dates, as supported by consensus with statement 34 (98%). This approach will keep stakeholders abreast of developments and ensure transparency and accountability in the development process.

Recommendations

Based on the levels of consensus seen within this study, the steering group were keen that the UKKA’s process for creating guidelines should be updated in response to the results of this work. As such the steering group posed the following recommendations:

1. A more equitable approach to proposing guideline topics should be adopted, allowing input from HCPs, patients and their representatives.

2. UK commentaries on international guidelines that outline regional applicability and more focused implementation are as valued as full UK guidelines.

3. All guidance should focus on the end user, with simple and appropriate language to ensure accessibility for HCPs and people with CKD, and encourage engagement.

4. Standardised, multi-faceted implementation techniques or ‘practice points’ to maximise the uptake of their recommendations into clinical practice should be developed and included.

5. Connections across disciplines should be fostered, not only to ensure a multi-disciplinary approach to their guideline development but ensure perspectives from nephrology are considered in CPGs created by other professional bodies.

6. Guideline groups should outline strategies to address the sustainability agenda, wherever possible.

Study strengths and limitations

The large number of experienced specialists that responded to the consensus questionnaire lends weight to the validity of the recommendations proposed by the steering group. The presence of patients and their representatives in the research, through the steering group and questionnaire respondents, increases the inclusivity and applicability of these findings. It highlights the opinions of these individuals and emphasises the need to acknowledge and act on them throughout guideline development. Responses were sought from both HCPs and patients across the UK in an attempt to reduce geographic bias. While some areas had fewer respondents (eg, Northern Ireland), overall, there was good representation across the UK. The survey was distributed by the steering group, however, data was collected and analysed anonymously by a third party, helping to limit bias.

The 4-point Likert scale was used so respondents had no ‘neither agree or disagree’ option and had to form an opinion on each statement. However, as discussed, some statements did show a central tendency bias, which could have been due to the language used within the statements. As this study only undertook one round of survey with no adjustments to the statements, it is possible that some of the statements were too agreeable and did not sufficiently challenge the status quo. Further research on this in this area should refine the statements generated herein to determine any greater variance that may exist.