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Background <p>Glomerulonephritis (GN) accounts for 20%–25% of chronic kidney disease and is a major cause of end-stage kidney disease. The 2021 UK Rare Disease Framework highlighted inequities in rare disease care, with commitments to integrated care and equitable access. This national survey explored unmet needs in GN services, particularly service delivery, access to novel therapies, and research opportunities.</p> Methods <p>An online survey was designed by the UK Kidney Research Consortium Glomerulonephritis Clinical Study Group and distributed to UK adult and paediatric nephrologists. The 25-item survey assessed service infrastructure and staffing, equity of access to novel therapies, and research infrastructure and barriers. Responses were analysed using descriptive statistics and qualitative content analysis.</p> Results <p>Eighty-five responses were received from all eight NHS England renal networks and from Northern Ireland, Scotland, and Wales, including 73 adult respondents from 57 renal centres and 12 paediatric nephrologists from 10 paediatric centres. After removing duplicate responses per centre, 67% (38/57) of adult respondents from 57 centres reported working in a tertiary renal centre. Overall, 67% (38/57) reported a dedicated primary glomerulonephritis, vasculitis or lupus clinic, 49% (28/57) cohorted patients by disease subtype, and 32% (18/57) ran more than one clinic per week. Most reported access to day-case infusion services 93% (53/57), plasma exchange 77% (44/57), and in-house multidisciplinary teams 74% (42/57). There was a reported absence of a specialist clinic in 33% (19/57) of centres, in-house glomerular disease specialist consultant support 30% (17/57), specialist nurses 61% (35/57), and renal research nurses 18% (10/57). Regional multidisciplinary meetings and dedicated patient messaging systems were unavailable for 58% (33/57) and 60% (34/57) respectively. In England, access to rituximab, avacopan, belimumab and voclosporin was variable. Research activity was reported by 72% (41/57) for commercial and 56% (32/57) for non-commercial studies. Most respondents 96% (55/57) expressed a desire to increase research involvement, and 81% (46/57) wished to lead their own studies. Reported barriers in embedding research into clinical practice included lack of clinician time, insufficient job-plan allocation, limited research nurse availability and funding. Paediatric respondents also reported similar constraints.</p> Conclusions <p>This survey highlights disparity in access to specialist clinics, specialist nurse support and regional MDTs in glomerular disease across the UK. Nephrologists remain highly motivated to conduct research, though capacity and funding constraints persist.</p> Clinical trial number <p>Not applicable.</p>

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A national survey of autoimmune glomerular disease services in the UK

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年8月5日

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  • Lucy Francis,
  • Jonathan Barratt,
  • Jane Hollis,
  • Lisa Willcocks,
  • Rachel B. Jones

摘要

Background

Glomerulonephritis (GN) accounts for 20%–25% of chronic kidney disease and is a major cause of end-stage kidney disease. The 2021 UK Rare Disease Framework highlighted inequities in rare disease care, with commitments to integrated care and equitable access. This national survey explored unmet needs in GN services, particularly service delivery, access to novel therapies, and research opportunities.

Methods

An online survey was designed by the UK Kidney Research Consortium Glomerulonephritis Clinical Study Group and distributed to UK adult and paediatric nephrologists. The 25-item survey assessed service infrastructure and staffing, equity of access to novel therapies, and research infrastructure and barriers. Responses were analysed using descriptive statistics and qualitative content analysis.

Results

Eighty-five responses were received from all eight NHS England renal networks and from Northern Ireland, Scotland, and Wales, including 73 adult respondents from 57 renal centres and 12 paediatric nephrologists from 10 paediatric centres. After removing duplicate responses per centre, 67% (38/57) of adult respondents from 57 centres reported working in a tertiary renal centre. Overall, 67% (38/57) reported a dedicated primary glomerulonephritis, vasculitis or lupus clinic, 49% (28/57) cohorted patients by disease subtype, and 32% (18/57) ran more than one clinic per week. Most reported access to day-case infusion services 93% (53/57), plasma exchange 77% (44/57), and in-house multidisciplinary teams 74% (42/57). There was a reported absence of a specialist clinic in 33% (19/57) of centres, in-house glomerular disease specialist consultant support 30% (17/57), specialist nurses 61% (35/57), and renal research nurses 18% (10/57). Regional multidisciplinary meetings and dedicated patient messaging systems were unavailable for 58% (33/57) and 60% (34/57) respectively. In England, access to rituximab, avacopan, belimumab and voclosporin was variable. Research activity was reported by 72% (41/57) for commercial and 56% (32/57) for non-commercial studies. Most respondents 96% (55/57) expressed a desire to increase research involvement, and 81% (46/57) wished to lead their own studies. Reported barriers in embedding research into clinical practice included lack of clinician time, insufficient job-plan allocation, limited research nurse availability and funding. Paediatric respondents also reported similar constraints.

Conclusions

This survey highlights disparity in access to specialist clinics, specialist nurse support and regional MDTs in glomerular disease across the UK. Nephrologists remain highly motivated to conduct research, though capacity and funding constraints persist.

Clinical trial number

Not applicable.