Shared Hemodialysis Care: Transforming Patient Experience

The benefits of the shared hemodialysis care model for in-center patients are significant and span multiple facets of overall experience. Patients who are active partners in their care report better physiological, psychological, and social outcomes compared to those in more traditional dialysis care environments where control lies primarily in the hands of healthcare staff. There are wider benefits to healthcare systems and organizations through efficient use of resources, reduction in avoidable hospital admissions, and improved staff morale. Quality improvement programs must address barriers to shared hemodialysis care alongside the factors that support successful implementation. 

End stage kidney disease (ESKD) significantly impacts patient quality of life, morbidity, and mortality. Patients on in-center dialysis spend many hours every week in clinics and in general tend to be passive recipients of their care, with limited involvement in their treatment.1 There is a growing body of evidence to support the view that in patients with long-term conditions, those who take an active role in their care report better outcomes than those receiving more traditional models of care.2 It is well recognized that lower health literacy levels among patients are also associated with worse outcomes. Therefore, targeting these areas has the potential to deliver meaningful changes in healthcare. 

In shared hemodialysis care (SHC), a structured interventional approach is implemented that helps patients receiving treatment in-center to learn about and become more involved in their own care. Partnership is the key to success, along with an individualized approach to education. Healthcare professionals adopt the role of facilitators, rather than purely that of caregivers to passive patients.3 Each individual patient is helped to develop knowledge and skills about their treatment, including learning to perform it themselves, in a way that feels comfortable to them. 

Hemodialysis is divided into 14 constituent tasks encompassing the key steps required for preparation, delivery, and discontinuation (Figure 1). Patients’ levels of competence and progress, from beginner to fully independent, are recorded using standardized training and educational materials.4 Well-being is optimized by minimizing the emotional impact of hemodialysis and improving safety, timeliness, and effectiveness of treatment. Key goals are to improve health literacy, patient activation, safety, experience, and outcomes.  

FIGURE 1  |  Shared care tasks

HOME HEMODIALYSIS  

Patients performing hemodialysis at home are effectively fully self-caring. Home hemodialysis is associated with fewer complications, better survival, and improved quality of life compared to in-center hemodialysis. These observations provide reassurance that in the in-center setting, undertaking SHC and training patients to perform the treatment themselves are also safe.5 Infection rates and mortality as a result of COVID-19 were significantly worse among in-center patients compared to home patients. For some, being able to undertake more complex tasks, such as self-cannulation, may lift barriers to moving from the in-center setting to home. Thus, SHC has the potential to increase opportunities for home hemodialysis uptake.6

PATIENT ACTIVATION   

Patient activation is a modifiable measure of the degree of engagement and sense of control an individual has over their health. It is defined as “an individual’s knowledge, skill, and confidence for managing their health and healthcare.”7 At the lowest level, patients may feel overwhelmed and disengaged, whereas through higher levels they take increasing control of their health. Lower patient activation is associated with poorer outcomes, including hospitalization and loss of confidence in healthcare providers. In patients with kidney failure, characteristics associated with lower activation are older age, diabetes, and higher levels of deprivation.8 Given that these characteristics are frequently observed, often in combination among in-center hemodialysis patients, interventions that increase patient activation in this group may help improve outcomes.

SHC has the potential to increase activation by helping patients engage with their treatment at a pace that suits them, overcoming specific fears, promoting self-management, and reducing anxiety using small manageable steps (Figure 2).

FIGURE 2  |  Small steps within shared care provide a framework to unlock potential

SHC also offers benefits to healthcare organizations, as patient activation is recognized as a useful strategy for effective management of health resources and has been shown to improve the role of healthcare professionals (Figure 3).9,10 Time saved performing routine tasks, for example, allows nurses to deal with more complex cases and to spend more time educating and supporting patients in a holistic manner.11 Patient and professional satisfaction are also increased as the relationship is expanded to focus on the person, their life, and the patient’s other health problems.12

FIGURE 3  |  Benefits of the SHC model for healthcare organizations

HEALTH AND SOCIAL CARE POLICY AND GUIDANCE    

The importance of patient involvement in their hemodialysis care has been increasingly recognized by the nephrology community and supported by policy makers. In the United Kingdom, the National Institute for Health and Care Excellence guidance has clearly indicated that patient choice and preferences must be considered throughout.13 NHS England’s service specification stipulates that dialysis providers must offer education about access to shared care training for patients and that this should include opportunities for self-care either in the dialysis facility or in the home.14 At the clinical practice level, the UK Renal Association guidance recommends SHC, recognizing the beneficial impact on all domains of health including enhanced safety that comes with education about infection control, equity of access, and patient experience.15 The work of the SHC initiative in the United Kingdom has been adopted by Scarborough Health Network in Canada, who describes it as a change in their dialysis care philosophy.16

Getting It Right First Time (GIRFT) is a national initiative that undertook a comprehensive assessment of nephrology services in the UK to identify areas of unwarranted variation. The final report is expected to be released in 2021. Areas of need already highlighted include home dialysis. Prevalence averaged at 17 percent, but some renal units had up to 40 percent while nearly two-thirds of units were below 20 percent (Figure 4).17 Given these findings, it is anticipated that clear recommendations will be made to increase SHC as a means of standardizing and facilitating home dialysis uptake. 

The National Kidney Federation has recommended that renal units in the UK reach a minimum prevalence of 20 percent of their dialysis population on home dialysis by the end of 2024.18 Clearly, SHC will have to be central to any efforts to reach this target.

SHAREHD   

SHAREHD is a quality improvement collaborative of healthcare teams and patients designed to scale up shared hemodialysis care and includes 600 patients across 12 renal units in England.19 Publication of results is expected in 2021. Baseline data revealed variation between units for the number of tasks undertaken by patients and complexity of tasks. A positive association between the number of tasks and patient activation was observed.20 In addition, certain treatment-related tasks that have significant scope for increased uptake were key to becoming independent or transferring to home hemodialysis; one of these was self-cannulation. 

One of the units involved in the original project was Hull Dialysis Centre, the largest NephroCare center in the UK, caring for approximately 180 patients receiving dialysis. The program enjoyed significant success and supported a thriving home hemodialysis program. 

Since 2018, significant efforts have been made to implement SHC throughout the NephroCare network in the UK. A benchmarking exercise in early 2021 (unpublished internal data) revealed that 76 percent of all NephroCare patients participated in their care at some level, with five clinics reporting over 10 percent of patients engaging with five or more tasks (Figure 5).

FIGURE 5  |  Shared hemodialysis care participation

BARRIERS AND ENABLERS TO THE IMPLEMENTATION OF SHC  

SHC is not currently standard practice. The reasons for this vary from center to center. Results of a study by SHAREHD identified key barriers and enablers to success from both a patient and healthcare professional perspective; our own experience indicates that organizational aspects also had an impact on uptake (Figure 6). Despite this, the importance of collaboration at all levels is clear. A culture of change involving patients and professionals working together is essential, along with a participative approach to education that considers patients’ preferred learning styles. When confidence is low, or ambivalence and resistance are present, motivational interviewing techniques encourage patients to become active participants in the process by evoking their intrinsic motivations for participation.

FIGURE 6  |  SHC barriers and enablers of SHC

CONCLUSION   

Empowering in-center hemodialysis patients to become active participants in their care has the potential to enhance overall experience, increase patient activation, and therefore improve clinical, psychological, and social outcomes. There are also significant wider benefits to healthcare systems and organizations, including improved recruitment and retention through enhancing staff morale and job satisfaction, more effective use of resources, and reduction in costs associated with avoidable hospital admissions. Implementation is not without its challenges and requires commitment at all levels and a willingness to be flexible and innovative. Key success factors are collaboration between patients and healthcare professionals, and a paradigm shift from a traditional paternalistic model of care delivery to one of co-production and shared decision making.

Meet The Experts

References

1. Fotheringham J, Barnes T, Dunn L, et al. Rationale and design for SHAREHD: a quality improvement collaborative to scale up Shared Haemodialysis Care for patients on centre based haemodialysis. BMC Nephrol 2017;18(1):335. doi: 10.1186/s12882-017-0748-6.
2. Greene J, Hibbard JH, Sacks R, et al. When patient activation levels change, health outcomes and costs change, too. Health Aff (Millwood) 2015 Mar;34(3):431-7. doi: 10.1377/hlthaff.2014.0452.
3. Fotheringham et al. Rationale and design for SHAREHD.
4. ShareHD and The Health Foundation. Sharing Haemodialysis Care Competency Handbook 2019 (newly revised). https://www.shareddialysis-care.org.uk/sharehd/sharehd-news/new-shared-care-competency-handbook-launched. 
5. Wilkie M, Barnes T. Shared hemodialysis care: increasing patient involvement in center-based dialysis. Clin J Am Soc Nephrol 2019 Sep 6;14(9):1402-4. doi:10.2215/CJN.02050219.
6. Ibid.
7. Hibbard J, Gilburt H. Supporting people to manage their health: an introduction to patient activation. Report. London: The King’s Fund, 2014. https://www.kingsfund. org.uk/sites/default/files/field/field_publication_file/supporting-people-manage-health-patient-activation-may14.pdf.
8. Wilkie, Barnes. Shared hemodialysis care.
9. Wanless D. Securing our future health: taking a long-term view. Final report. London: Department of Health, 2002. https://www.yearofcare.co.uk/sites/default/files/images/Wanless.pdf.
10. Hibbard, Gilburt. Supporting people to manage their health.
11. Tibbles R, Bovill L, Breen C, Vinen K. Haemodialysis: a self-care service. Nurs Manag 2009 Mar;15(10):28-34. doi: 10.7748/nm2009.03.15.10.28.c6885.
12. Lewin S, Skea Z, Entwistle V, et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev 2001;(4):CD003267. doi:10.1002/14651858.CD003267, 4. 
13. National Institute for Health and Care Excellence. Renal replacement therapy and conservative management. NICE guideline NG107, published Oct. 3, 2018. nice.org. uk/guidance/ng107. 
14. NHS England Specialised Services. Service Specifications: A06. Renal Services. england.nhs.uk/commissioning/spec-services/npc-crg/group-a/a06/.
15. Ashby D, Borman N, Burton J, et al. Renal Association Clinical Practice Guideline on Haemodialysis. BMC Nephrol 2019;20:379. doi.org/10.1186/s12882-019-1527-3.
16. Scarborough Health Network. Shared care. https://www.shn.ca/nephrology-and-dialysis/shared-care/. Accessed July 15, 2021.
17. National Kidney Federation. Increasing home dialysis in the context of COVID-19 in the UK. Feb. 9, 2021. https://issuu.com/nationalkidneyfederationuk/docs/nkf_home_dialysis_webinar_report_final. 
18. Ibid.
19. Fotheringham et al. Rationale and design for SHAREHD.
20. Wilkie, Barnes. Shared hemodialysis care.