Rationale and design for SHAREHD: a quality improvement collaborative to scale up Shared Haemodialysis Care for patients on centre based haemodialysis

In the UK approximately 23,000 people attend in-centre facilities three times a week to receive haemodialysis (HD) [1]. Structural arrangements in dialysis units tend to create an environment in which patients become passive recipients of their care, engaging little with their own treatment. There is considerable evidence of the benefits of supported self-care in long term conditions [2, 3]. Low health literacy amongst dialysis patients is associated with worse survival [4] whereas self-motivation and patient education results in preferable clinical parameters e.g. phosphate control [5] and fluid balance [6]. Dialysis services are experiencing considerable pressure to deliver high quality care in the face of fiscal challenge, often when approaching capacity. An important mechanism to ensure that quality of care is maintained is to engage service users as true partners in their own care; self-management is an ambition in “Kidney Health: Delivering Excellence” [7]. The tradition of self-care extends to the 1,113 UK patients who performed haemodialysis at home in 2014 [1]. In addition to the better survival [8] and quality of life [9] associated with home HD (HHD), increasing HHD from 4.1% in the UK to the 12.9% used in Australia and New Zealand [10] would lead to estimated annual savings to the UK National Health Service of £16M (an increase of 1400 people treated with HHD at a saving of £12000 per patient per year [11]).

SHC describes an intervention where people treated with in-centre HD are given the opportunity to learn tasks relating to their own dialysis treatment. HD treatment is standardised requiring a number of key steps for its preparation, delivery and discontinuation. For SHC to be adopted consistently across dialysis services several changes become necessary. Health care professionals require a change in their roles from one in which they undertake repetitive tasks for patients to one where they become educators and facilitators in order to support patients to take a greater role in their own care. Patients require encouragement to change their expectation of care to one where they become involved in their own treatment. This approach gives centre based dialysis patients access to the benefits of participating in their own care while increasing opportunities for home dialysis.

The objective of this evaluation is to better understand the impact of participating in treatment related tasks among people who receive dialysis at treatment centres. The outcomes that we will examine through this study include access to home or independent dialysis in centre, quality of life, symptom scores, as well as harms including infection and hospitalisation. The intervention at the heart of this protocol is to create an environment where dialysis nurses consistently give patients the opportunity to choose to learn and undertake treatment related tasks. It is our plan that this will be implemented at participating sites through a series of workshops based on quality improvement methodologies, nested in a structured collaborative in which teams from participating sites are able to share learning in order to identify the most effective approaches.

Patient involvement in health care comes in a variety of forms including engaging people to keep healthy, shared decision making, choosing a provider and self-management support [22]. The evolution of person-centred care has progressed over several decades contributed to by a succession of key documents, including most recently the NHS five year forward view [23]. Patient training is central to the provision of dialysis home therapies in order to provide individuals with the required skills necessary to manage their condition in the community away from the hospital services. Alternatively those who receive their dialysis treatment at centres are much less likely to be engaged in their own treatment. There is robust evidence that informing patients about their condition and providing educational opportunities for them to engage in their own care leads to improved outcomes [2]. Current arrangements limit opportunities for centre-based dialysis patients to take a significant role in improving their own outcomes.As a consequence, the existing approach is potentially disadvantageous to centre based HD patients and could be challenged on the basis of equity, since those who take up HHD tend to have lower deprivation scores and are more likely to be Caucasian.

The strengths of our protocol include the stepped wedge design with a random allocation to reduce the risk of bias, particularly relevant in a quality improvement intervention. We selected instruments on the basis of clear evidence of their utility. The Patient Activation Measure (PAM) [24] is being used under licence from NHS England to explore factors that impact on readiness to participate in dialysis related tasks. Low patient activation is associated with a range of poorer healthcare outcomes including readmission to hospital, medical errors and loss of confidence in healthcare providers [25]. The questions on mobility, symptom burden, cognition, health literacy and attitudes to self-needing included in our questionnaires (Table 1) were identified though our pilot work as potentially impacting on the individual’s ability to participate in HD tasks. Identifying barriers to involvement is clearly important particularly as the SHC concept is that patients are supported to take on as much or as little as they feel able to do. A small amount of engagement is meaningfully different from an environment where participation is discouraged. The duration of the study is sufficient to assess whether perceived benefits to patients are sustained or whether the repetitive nature of dialysis treatment results in a loss of enthusiasm for engagement over time. Patient partners are central in the design of the intervention, selection of endpoints and instruments and ensuring outputs remain relevant to the end-user (co-production).

The challenges of the adopted approach include competing pressures that health care professionals face in their day to day work and that the heterogeneity of HD units may limit the effectiveness of the intervention. To address these concerns we have adopted quality improvement methodologies that are intentionally tailored to support local configuration. Participant drop-out during the course of the 24 month protocol has been mitigated by doubling the initial cohort size above that required by the power calculation.