Interdisciplinary approach of conservative kidney management with a community nurse-led programme

Dear Editor,

Conservative kidney management (CKM) should be considered when the burdens of dialysis treatment outweigh the benefits and compromise quality of life. The availability, accessibility and quality of care vary across the world depending on healthcare structure and resources. We explored the feasibility of integrating a nurse-led CKM community programme into nephrology care which is still evolving.

This was a single-centre, prospective cohort study from 1 April 2021 to 1 April 2024 for patients under Sengkang General Hospital who had chronic kidney disease (CKD) stage G5 and opted for CKM. Follow-up and home visit were done at patients’ home. They were referred to the renal conservative care team, comprising nephrologists, renal coordinators, medical social workers in the clinic, and specialised nurses and social workers in the community. The primary goal was to provide routine kidney supportive care in a holistic manner, and to integrate community resources to support the well-being of patients and their families. We also aimed to increase awareness of CKM as a viable treatment option. These patients were reviewed regularly in the community with interval outpatient renal clinic visits. Patients who were nursing home residents, enrolled into home hospice programmes, had dialysis withdrawn or had declined home visits were excluded due to needing different healthcare support and funding structure. At each visit. validated instruments were used to measure patients’ symptoms, physical status and biopsychosocial needs: Edmonton Symptom Assessment System Revised: Renal (ESAS-r: Renal),¹ Resources Utilisation Group – Activities of Daily Living scale (RUG-ADLs)² and Palliative Performance Scale version 2 (PPSv2).³ The cohort of patients was followed up until demise or 31 May 2024. Individuals who had demised, transferred to hospice care or initiated on dialysis were considered to have exited the programme. Monthly home visit was conducted or earlier review depending on the patient’s condition. Communication platforms used were WhatsApp and email that allowed dynamic monitoring and escalation of care within the same day.

A total of 121 patients were enrolled into the CKM community programme during the specified period. Demographics and baseline information were obtained upon entering the programme. Mean age was 79.2±7.7 years, baseline estimated glomerular filtration rate (eGFR) using the CKD Epidemiology Collaboration equation was 10.3±3.4 mL/min/1.73 m², and Charlson comorbidity index was 8.4±1.9. Among them, 46 (38%) were male and 96 (79.3%) were Chinese. Their comorbidities were diabetes mellitus (76.9%), ischaemic heart disease (34.7%), stroke or transient ischaemic attack (27.3%), dementia (22.3%), malignancy (15.7%) and peripheral vascular disease (13.2%). More than 80% of the patients had no symptoms using ESAS-r: Renal assessment at baseline (Fig. 1a). Majority were independent based on RUG-ADL (Fig. 1b), and PPSv2 scores were between 60 and 70.

Fig. 1. Baseline characteristics.

Duration in the CKM community programme was calculated from the first to the last home visit, median duration was 5.9 months (interquartile range [IQR]: 2.0, 12.3). During the follow-up, 51 patients (42.1%) demised, 19 (37.3%) of which required inpatient hospice. Forty patients (33%) who required palliative care were referred to home hospice. Eleven patients (9.1%) changed their decision and were started on dialysis. Median survival from first home visit to demise or 31 May 2024 was 10.1 months (IQR: 4.6, 19.2) versus 9.1 months (IQR: 4.3, 15.5) if excluding those who started dialysis (Supplementary Fig. S1).

Dialysis availability results in its perception as the default management option for CKD stage G5.⁴ Dialysis patients have access to their healthcare providers for their health-related enquiries and support. On the contrary, CKM patients may have limited access to healthcare support, apart from ambulatory visits or home hospice if referred. These CKM patients may feel vulnerable, uncertain and may perceive medical abandonment without support in the community.^5,7,8

Providing comprehensive care for CKM patients in the ambulatory setting is challenging with time constraints against competing clinical needs. A CKM programme that extends into the community breaks this barrier and allows continuous discussion between the patients, family members and healthcare team. This leads to a continuous discussion from clinic to home setting, which reinforces patient-centric care, apart from regular monitoring of clinical progression. The continuity of care helped deconflict dissonant decisions between patients and caregivers, which are unlikely to happen in a routine clinic review. Home visits enhanced the confidence of families in caring for CKM patients in the community and in being more prepared should the situation change.  Direct communication between the community team and nephrologists also allowed prompt and direct care delivery. Primary care physicians may be less comfortable with adjusting larger doses of diuretics or erythropoiesis-stimulating agents in patients with CKD stage G5.

Our CKM patients had relatively low symptom burden in the early phase of CKD stage G5, and decompensation could occur suddenly and rapidly. Without reversible factors, demise would be expected in weeks.⁶ Such a tipping point would have been difficult to anticipate if the patients were seen at several months’ interval in a clinic setting, much less considering their diminished physical function and mobility to attend these visits. The CKM community nurse identified deteriorating individuals and timely transit to palliative care while in the community setting. Home visits also provided a window into our patients’ lives and their coping strategies with chronic disease. Understanding health perceptions and priorities, which have been shaped over years, was crucial in healthcare decision-making and anticipatory guidance on the eventual care needs of patients as symptoms and function worsened.

Our CKM community programme identified challenges in supporting CKM patients before palliative care needs emerged and filled the gaps in the above-described niche areas. We were limited by being a single-centre experience, not comparing those patients under standard of medical care or on dialysis, and practices might differ depending on the resources available. We also did not receive follow-up information of patients who were transferred to home hospice, such as their ESAS-r: Renal, RUG-ADL and PPSv2.

CKM patients are heterogeneous, complex and require dedicated care. The prototype CKM community programme is pragmatic and could fill the gap in existing services. An interdisciplinary CKM programme provides patient-centric, holistic and anticipatory care, supporting patients and families through their CKD stage G5 journey. Identifying suitable patients, practising judicious resource allocation and following a team-based approach are important components of a high-quality programme.

Supplementary material

Fig. S1. Survival analysis for patients under conservative kidney management programme.

REFERENCES

1. Kidney Supportive Care Research Group. Edmonton Symptom Assessment System Revised: Renal (ESAS-r: Renal), University of Alberta, Edmonton, Canada. https://www.ckmcare.com/Resources/Details/62. Accessed 10 August 2024.
2. Mlinac ME, Feng MC. Assessment of Activities of Daily Living, Self-Care, and Independence. Arch Clin Neuropsychol 2016;31:506-16.
3. Wainright W. Medical Care of the Dying. 4th ed. Victoria, B.C.: Victoria Hospice Society; 2006.
4. Hamroun A, Glowacki F, Frimat L. Comprehensive conservative care: what doctors say, what patients hear. Nephrol Dial Transplant 2023;38:2428-43.
5. Tong A, Cheung KL, Nair SS, et al. Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. Am J Kidney Dis 2014;63:913-27.
6. Murtagh FEM, Sheerin NS, Addington-Hall J, et al. Trajectories of illness in stage 5 chronic kidney disease: a longitudinal study of patient symptoms and concerns in the last year of life. Clin J Am Soc Nephrol 2011;6:1580-90.
7. O’Hare AM, Richards C, Szarka J, et al. Emotional Impact of Illness and Care on Patients with Advanced Chronic Kidney Disease. Clin J Am Soc Nephrol 2018;13:1022-9.
8. Ania-Gonzalez N, Martin-Martin J, Amezqueta-Goñi P et al. The needs of families who care for individuals with kidney failure on comprehensive conservative care: A qualitative systematic review. J Ren Care 2022;48:230-42.

Acknowledgement

This pilot project was managed by Tzu-Chi Foundation (Singapore) and supported by the Tote Board Community Health Fund, titled Conservative (Non-Dialysis) Management of Patients with End-Stage Renal Disease.