Provision of Specialist Palliative Care Services for People with End ...

Provision of SpecialistPalliative Care Services forPeople with End-Stage RenalDisease: A National SurveyAnn-Louise CaressProfessor of Nursing, University ofManchesteron behalf of Dr KATIE HOBSON

Project Team• Katie Hobson, SpR in Specialist PalliativeCare• Stephanie Gomm, Consultant in SpecialistPalliative Care• Fliss Murtagh, Clinical Senior Lecturer inSpecialist Palliative Care• Ann Caress, Professor of Nursing

Background• End-stage renal disease (ESRD) is highlyprevalent and increasingly common• People with ESRD experience a symptomburden comparable with those withadvanced cancer• Previous evidence found low levels ofaccess to/provision of specialist palliativecare (SPC) for people with ESRD

AimTo assess current provision of, andaccess to, SPC services foradult patients with ESRD in the UK

Methods• Questionnaire survey (2008)• Study-specific questionnaire (closed andopen questions)• All UK adult hospital, hospice andcommunity SPC services (N=611) invited• Descriptive analysis of data from closedquestions and thematic analysis of datafrom open questions

Main Findings• 318/611 (52%) questionnaires returned,representing 360 services (59%)• 96% (N=306) agreed SPC has a role in care ofpeople with ESRD• 88% (N=281) accepted referrals of people withESRD• However, most (72%) only accepted 1-5referrals per year• Only 7% (N=23) had ESRD-specific referralcriteria• Only 17% (N=53) had ESRD-specific treatmentguidelines or care pathways

Perceived Barriers to Access/Provision• Lack of referrals• Provision available from other services• Skills/expertise of SPC teams• Organisational issues (finance,bed availability, current referral criteria)

Suggestions for Improvement• Increased staff/finance• Mutual education• Collaborative working• Development of guidelines/pathways

Conclusions• Some improvements in access andprovision since earlier surveys• However, people with ESRD still underserved• Lack of referrals is a significant issue• Improved collaboration and education areneeded

Why This Topic?• KH working in SPC and had an interest inSPC non-malignant disease• SG had an interest in ESRD• Comparable work done/in progress inother non-malignant conditions• Prior work in ESRD pre-dated someimportant developments in ESRD andSPC

Why This Study Design?• SpR project (6 months)• Feasibility – what’s worked before?• Resources• Ethics and governance requirements• Own skills• Prior research

Some Reviewers’ Comments‘More data on the general place andmodality of death in the region should beprovided, to give the reader an idea howend of life decisions/organisation isactually handled, and how the "nephrologyside" is looking at the problem. Ideally, thesurvey should also be sent to nephrologyunits to get their opinion on the matter’

Some Reviewers’ Comments‘The patient preferences are not analysednor discussed…[a] summary of theliterature on the view of ESRD patients onhow their end of life should be organised,should be added to the discussion’

ReferenceHobson K, Gomm S, Murtagh F, CaressA-L (2010) National survey of the currentprovision of specialist palliative careservices for patients with end-stage renaldisease Nephrology DialysisTransplantation doi: 10.1093/ndt/gfq530