National survey of the current provision of specialist palliative care services for patients with end-stage renal disease

Katie Hobson, Stephanie Gomm, Fliss Murtagh, Ann Louise Caress

Research output: Contribution to journalArticle

13 Citations (Scopus)

Abstract

Background. Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years.Methods. A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed.Results. Three hundred and eighteen of 611 (52%) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88%) accepted referrals, and 185 of 281 (66%) reported that 'none or few were referred'. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3% held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement.Conclusions. The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.

LanguageEnglish
Pages1275-1281
Number of pages7
JournalNephrology Dialysis Transplantation
Volume26
Issue number4
Early online date2 Sep 2010
DOIs
Publication statusPublished - 1 Apr 2011
Externally publishedYes

Fingerprint

Palliative Care
Chronic Kidney Failure
Referral and Consultation
Joints
Outpatients
Surveys and Questionnaires
Guidelines
Kidney
Education
Hospice Care
Directories
Hospices
Communication

Cite this

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title = "National survey of the current provision of specialist palliative care services for patients with end-stage renal disease",
abstract = "Background. Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years.Methods. A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed.Results. Three hundred and eighteen of 611 (52{\%}) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88{\%}) accepted referrals, and 185 of 281 (66{\%}) reported that 'none or few were referred'. Only 7{\%} and 17{\%} of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79{\%} used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3{\%} held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement.Conclusions. The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.",
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National survey of the current provision of specialist palliative care services for patients with end-stage renal disease. / Hobson, Katie; Gomm, Stephanie; Murtagh, Fliss; Caress, Ann Louise.

In: Nephrology Dialysis Transplantation, Vol. 26, No. 4, 01.04.2011, p. 1275-1281.

Research output: Contribution to journalArticle

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T1 - National survey of the current provision of specialist palliative care services for patients with end-stage renal disease

AU - Hobson, Katie

AU - Gomm, Stephanie

AU - Murtagh, Fliss

AU - Caress, Ann Louise

PY - 2011/4/1

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N2 - Background. Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years.Methods. A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed.Results. Three hundred and eighteen of 611 (52%) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88%) accepted referrals, and 185 of 281 (66%) reported that 'none or few were referred'. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3% held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement.Conclusions. The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.

AB - Background. Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years.Methods. A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed.Results. Three hundred and eighteen of 611 (52%) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88%) accepted referrals, and 185 of 281 (66%) reported that 'none or few were referred'. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3% held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement.Conclusions. The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.

KW - end-stage renal disease

KW - palliative care

KW - patient referral

KW - kidney failure

KW - chronic

KW - Hospice

KW - terminally ill

KW - kidney

KW - Palliative care

KW - statistical process control

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DO - 10.1093/ndt/gfq530

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T2 - Nephrology Dialysis Transplantation

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SN - 0931-0509

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