NSW Renal Supportive Care€¦ · Renal Supportive Care (RSC) has emerged as a formal approach to...

NSW Renal Supportive Care Annual Report

January – December 2017

Renal Network

ACI Renal Supportive Care Working Group, Annual Report April 2018 i

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The Agency for Clinical Innovation (ACI) works with clinicians, consumers and managers to design and

promote better healthcare for NSW. It does this by:

service redesign and evaluation – applying redesign methodology to assist healthcare providers and

consumers to review and improve the quality, effectiveness and efficiency

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healthcare innovations from optimal use through to disinvestment

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with healthcare providers to develop mechanisms to improve clinical practice

and patient care.

www.aci.health.nsw.gov.au

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ACI Renal Supportive Care Working Group, Annual Report April 2018 ii

Executive summary

Renal Supportive Care (RSC) has emerged as a formal approach to addressing the gaps in care for

patients with chronic kidney disease being treated conservatively, and for those receiving renal

replacement therapies but experiencing persistent symptoms. The RSC Working Group was

established by the Agency for Clinical Innovation (ACI) to oversee the development, implementation

and evaluation of RSC services across the state in 2013.

To facilitate RSC services each Renal Unit in New South Wales was linked to one of three hubs (St

George Hospital, Nepean Hospital and John Hunter Hospital). The hubs provide education, mentoring

and ongoing support to the units within their network so that these Units can then provide expert RSC

for their patients. Renal Units have been funded to employ nursing and allied health staff to support

this program. A database was distributed to all units to ensure a standardised framework to collect

data for the State-wide RSC Key Performance Indicators. This forms the basis of this report. The

findings are of great interest and reflect an ongoing commitment to these patients; response rates for

several of the performance measures are lower than desired and this needs be taken into account

when interpreting the data below.

Summary of findings for the year Jan-Dec 2017:

1021 new patients were managed through the RSC program across NSW.

The average age of all patients seen by RSC services in NSW is 76 years.

59% of RSC patients were male.

54% were on a conservative non-dialysis pathway, 37% were on dialysis, and a small

proportion (9%) were on a pre-dialysis or undecided pathway.

30% of patients died.

54% of patients who withdrew from dialysis had their end of life care managed by the Renal

Supportive Care Service.

10% of NSW chronic dialysis patients were seen by the RSC program for symptom

management.

53% of conservative patients and 58% of renal replacement therapy patients had an

improvement in their symptoms (i.e. a reduction in their iPOS score) between their first and

most recent appointment, on average about 4 months.

66% of conservative patients and 63% of renal replacement therapy patients had an improved

or stable functional status between their first and most recent appointment.


improvement in their nutritional status between their first and most recent appointment. 55% of

conservative patients and 40% of renal replacement therapy patients maintained their

nutritional status between their first and most recent appointment.

22% of conservatively managed patients and 26% of renal replacement therapy patients who

attend Renal Supportive Care services had an Advance Care Plan documented.

55% of patients attending Renal Supportive Care services had been consulted by a Dietitian.

55% of patients attending the Renal Supportive Care Service had been consulted by a Social

Worker.

ACI Renal Supportive Care Working Group, Annual Report April 2018 iii

This program continues to grow; it is pleasing to see many Units bringing their own initiatives to

RSC and it is apparent that young nephrologists are embracing this program. Hopefully they will

continue to become skilled in such management. Finally, data capture and analysis will be crucial

to understanding the outcomes of this program and ensure we are doing the best job possible for

these patients and their families. We are seeking better ways to achieve this into the future.

I would like to thank Anna Hoffman for her huge effort in bringing this report together, a task that

she does voluntarily. I would also like to thank the hundreds of doctors, nurses, allied health and

administrative staff in NSW who care for these patients every day. I remain excited about the early

success of this program, which has really only been in place for 2-3 years; I believe that it will only

continue to grow as it rapidly becomes part of standard nephrology practice.

Prof. Mark Brown

Chair, ACI Renal Supportive Care group

ACI Renal Supportive Care Working Group, Annual Report April 2018 iv

Contents

Executive summary ...................................................................................................................... ii

NSW Renal Units ........................................................................................................................... 1

St George Hub ................................................................................................................................ 1

Nepean Hub .................................................................................................................................... 1

John Hunter Hub ............................................................................................................................. 1

Introduction ................................................................................................................................. 2

Allocation of RSC funding across renal units/LHDs, 2017-18 ................................................... 3

Performance measures ................................................................................................................ 4

Renal Supportive Care Research Projects-2017 ....................................................................... 25

Concord Hospital .......................................................................................................................... 25

Royal North Shore Hospital ........................................................................................................... 25

Orange Base Hospital ................................................................................................................... 25

Liverpool Hospital ......................................................................................................................... 26

St George Hospital ........................................................................................................................ 26

Section 2: NSW Renal Supportive care Cumulative Report July 2015 - December 2017 ...... 27

Introduction ................................................................................................................................... 27

Summary of findings ..................................................................................................................... 27

Summary of NSW State averages for each KPI ........................................................................ 28

Percentage of patients with improved symptoms –2016-17 .......................................................... 36

Percentage of patients with improved/ stable Functional status –2016-17 .................................... 38

Patients with repeated SGA scores ............................................................................................... 40

Percentage of patients with any improvement in nutrition assessment–2016-17 ........................... 41

Appendices ............................................................................................................................... 48

Appendix 1: Charlson Co-morbidity Score..................................................................................... 48

Appendix 2: IPOS ......................................................................................................................... 50

Appendix 3: Karnofsky .................................................................................................................. 52

Appendix 4: SGA 7 point ............................................................................................................... 53

Appendix 5: Patient and Carer satisfaction surveys ...................................................................... 55

ACI Renal Supportive Care Working Group, Annual Report April 2018 1

NSW Renal Units

St George Hub

• Concord Hospital

• Royal Prince Alfred Hospital

• St George and Sutherland Hospitals

• Prince of Wales Hospital

• Wollongong Hospital (includes Wollongong Satellite, Shellharbour and Shoalhaven)

• Royal North Shore Hospital (includes Mona Vale Satellite unit)

• Orange Base Hospital (includes Bathurst Hospital)

• Dubbo Hospital

• St Vincent’s Hospital

• Broken Hill Hospital - data not available

Nepean Hub

• Western Renal Network (includes Nepean Hospital, Penrith Community Dialysis centre,

Auburn Satellite unit, Blacktown Hospital, Westmead Hospital)

• Liverpool Hospital (includes Bankstown Hospital, Campbelltown Hospital and Fairfield

Hospital)

• Goulburn Hospital (Includes Moruya Hospital)

• Wagga Wagga Base Hospital (includes Griffith Hospital)

John Hunter Hub

• Gosford Hospital (includes Gosford Satellite unit)

• Lismore Hospital (includes Ballina Hospital and Grafton Hospital)

• Port Macquarie Hospital (includes Kempsey Renal Units)

• Coffs Harbour Hospital

• John Hunter Hospital (includes Wansey Dialysis Centre and Singleton Dialysis Unit,

Muswellbrook Dialysis Unit, Maitland Dialysis Unit).

• Tamworth Hospital (includes Inverell District Hospital)

• Taree Hospital


Introduction

This report summarises the RSC data provided by Renal Units across NSW for new referrals to

the service between January 2017 and December 2017. RSC Service commencement dates for

each unit are shown in Table 1.

Start dates are based on activity data submissions.

Hospital Start date

St George Hub

Concord Hospital Aug-15

Royal Prince Alfred Hospital Nov-15

St George/ Sutherland Hospital Mar-09

Prince of Wales Hospital Jan-16

Wollongong Hospital Mar-16

Royal North Shore Hospital Nov-15

Dubbo Base Hospital Sep-16

Orange Base Hospital Apr-16

Broken Hill Hospital Jul-15

St Vincent’s Hospital Sep-15

Nepean Hub

Western Renal Network (Nepean) Dec-15

Liverpool Hospital Jul-15

Wagga Wagga Base Hospital Jul-15

Goulburn Hospital Jan-16

John Hunter Hub

Gosford Hospital Jan-16

Lismore/ Ballina/ Grafton Hospital Feb-16

Port Macquarie/ Kempsey Hospital Feb-16

Coffs Harbour Hospital Feb-16

John Hunter Hospital Maitland Hospital Muswellbrook Hospital Singleton Hospital Wansey Dialysis Centre

Feb-16

Tamworth Hospital Inverell Hospital

Jun-16

Taree Hospital May-16

Table 1: Renal Supportive Care Service commencement dates


Allocation of RSC funding across renal units/LHDs, 2017-18

The majority of Renal Units have now employed staff (nurses, dietitians, social workers) and have identified an existing Nephrologist as a clinical leader for RSC in their Unit; some have been fortunate enough to also engage existing Palliative Care physicians in their programs. Flexibility within these appointments has been key as the staff profile for RSC in one Unit may not suit that of another and there are differing needs between metropolitan and rural centres. Some Units have been fortunate to gain additional funding through the Leading Better Value Care, program. More information about LBVC can be found at http://collaborate.aci.health.nsw.gov.au/lbvc/rsc

http://collaborate.aci.health.nsw.gov.au/lbvc/rsc


Performance measures

The ACI Renal Supportive Care working group, a sub-group of the ACI Renal Network, developed

a set of seven indicator groups including demographic data and 11 performance measures:

Group name Number Demographic details

Demographics 1a Age

1b Co-morbidity

1c Gender

1d Indigenous Status

Group name Number Indicator name

Appropriateness

2a Number of conservatively managed Stage 4 or 5 CKD patients seen by the RSC service

2b % chronic dialysis patients withdrawing from dialysis seen by the RSC service

2c % chronic dialysis patients who are seen by the RSC service for symptom management

Effectiveness

3a Change in Symptom burden

3b Change in Functional Status

3c Change in Nutritional Status

Experience

4a Patient satisfaction

4b Family/ carer satisfaction

Safety/ Appropriateness

5 Patient's wishes for End of Life care documented and available

Appropriate Nutritional Management

6 % consulted by a dietitian for Nutritional assessment

Appropriate Social Work Management

7 % consulted by a Social Worker for Social Work assessment

Table 2: Renal Supportive Care performance measures


KPI 1: Demographic Data NSW averages

Definitions: 1a. Age: The average age of all patients seen by the RSC Service 1b. Co-morbidity Measure - Reported as the average Charlson Co-morbidity Index (CCI) for each unit. The CCI is used to measure patients’ comorbid conditions. Each condition is assigned a score of 1, 2, 3, or 6, depending on disease severity. A score for the patients’ age is also included. Scores are added together to provide a total CCI (maximum score, i.e. highest co-morbidity = 39) (Appendix 1) 1c. Gender 1d. Indigenous Status

76 years

7

59% Male

5%

The St George Hub is the largest with 462 new patients seen in 2017 compared with 281 in the

Nepean Hub and 278 in the JHH Hub. Mean age was similar, about age 76, and just over half of

each cohort were receiving conservative care.


HUB Hospital

ID

No. New patients seen

by Renal Supportive

Care Service

% Male

% Indigenous

Average Age (yrs)

% Conservative Care patients

% Deaths

Average Charlson Co-morb.

Score

STG HUB

105 34 47 0 73 50 6 7

108 33 73 0 78 73 24 8

111 15 60 0 79 60 40 10

112 179 65 1 79 47 30 7

114 27 70 0 77 19 30 9

115 33 61 0 81 70 24 9

117 41 54 0 79 29 22 6

122 37 57 24 63 16 5 7

124 63 63 11 77 89 11 7

STG HUB 462 62 4 77 51 23 7

NEP HUB

202 27 59 7 75 52 41 8

203 125 56 3 71 52 36 7

209 118 56 1 79 61 40 8

213 11 73 9 68 18 18 7

NEP HUB 281 57 3 75 54 37 7

JHH HUB

301 38 61 0 83 84 47 9

306 106 54 13 72 37 36 8

312 16 50 0 81 63 25 8

313 13 54 0 83 77 38 8

315 23 48 4 78 39 43 6

317 20 65 15 75 35 45 7

320 62 61 6 81 90 23 7

JHH HUB 278 56 8 77 59 35 8

NSW Total 2017 1021 59 5 76 54 30 7

Table 3: Renal Supportive Care – Demographic Data 2017


KPI 2: Appropriateness

Number of conservatively managed Stage 4 or 5 CKD patients seen by the RSC service

% chronic dialysis patients withdrawing from dialysis seen by the RSC service

% chronic dialysis patients who are seen by the RSC service for symptom management

The Table below shows that 552 patients were managed on a conservative pathway by RSC in NSW in 2017. Of interest, 1 in 10 dialysis patients also received RSC, highlighting the need for attention to symptom management in this population.

HUB Hospital ID

2a Conservative pts seen by

RSC service (count)

2b* % Dialysis withdrawals

managed by RSC Service

2c* % Chronic Dialysis pts seen by RSC for Symp

Mgt

STG HUB

105 17 50 7

108 24 20 3

111 9 50 4

112 84 100 25

114 5 36 21

115 23 33 4

117 12

122 6 0 34

124 56 13 7

STG HUB 236 45 11

NEP HUB

202 14 67 15

203 65 16 8

209 72 100 7

213 2 20 6

NEP HUB 153 42 8

JHH HUB

301 32 36 4

306 39 100 22

312 10 20 6

313 10 - -

315 9 100 16

317 7 100 22

320 56 11 1

JHH HUB 163 75 12

NSW Total 2017 552 54 10

Table 4: KPI 2 Appropriateness - summary data 2017

*Denominator from ANZDATA 2017 Report (http://www.anzdata.org.au/v1/report_2017.html)

- exception: Unit 213 self-reported


KPI 2a: Conservatively managed Stage 4 or Stage 5 CKD patients seen by the RSC program

Definition: The number of conservatively managed Stage 4 or 5 CKD patients who are seen by the Renal Supportive Care service.

The Table and Figure below show that about half the RSC patients are on a non-dialysis pathway

and there is considerable variation across Units in the % of patients seen for conservative

management as compared with dialysis patients. We anticipate this will become a more even

spread as the services mature in each Unit.

Pathways of patients seen by Renal Supportive Care Services

HUB Hospital ID Conservative

n (%) Dialysis

n (%) Other n (%)

Total

105 17 (50) 14 (41) 3 (9) 34

STG HUB 108 24 (73) 7 (21) 2 (6) 33

111 9 (60) 4 (27) 2 (13) 15

112 84 (47) 68 (38) 27 (15) 179

114 5 (19) 21 (78) 1 (4) 27

115 23 (70) 7 (21) 3 (9) 33

117 12 (29) 12 (29) 17 (41) 41

122 6 (16) 31 (84) 0 (0) 37

124 56 (89) 5 (8) 2 (3) 63

STG HUB 236 (51) 169 (37) 57 (12) 462

202 14 (52) 11 (41) 2 (7) 27

NEP HUB 203 65 (52) 55 (44) 5 (4) 125

209 72 (61) 41 (35) 5 (4) 118

213 2 (18) 6 (55) 3 (27) 11

NEP HUB 153 (54) 113 (40) 15 (5) 281

301 32 (84) 6 (16) 0 (0) 38

JHH HUB 306 39 (37) 58 (55) 9 (8) 106

312 10 (63) 5 (31) 1 (6) 16

313 10 (77) 3 (23) 0 (0) 13

315 9 (39) 9 (39) 5 (22) 23

317 7 (35) 11 (55) 2 (10) 20

320 56 (90) 2 (3) 4 (6) 62

JHH HUB 163 (59) 94 (34) 21 (8) 278

NSW Total 2017 552 (54) 376 (37) 93 (9) 1021

Table 5: KPI 2a *Other includes patients on pre-dialysis pathway or undecided


Figure 1: KPI 2a – Patient Pathway


KPI 2b: Chronic dialysis patients withdrawing from dialysis seen by the RSC service

Definition: The proportion of chronic dialysis patients who withdrew from dialysis, seen by the RSC service

Numerator: Number of patients who withdrew from dialysis seen by RSC

Denominator: Total number of dialysis patients who withdrew from dialysis

Denominator data obtained from the ANZDATA 2017 Report. This will be examined further in

future years as these data are generally 12 months behind actual dialysis patient numbers.

http://www.anzdata.org.au/v1/report_2017.html


Supportive Care Service, with a very wide variation from as low as 10% to as high as 100%

across Units. It is not clear whether this average is an appropriate figure or not and this will be

explored with each Unit.

Figure 2: KPI 2b. % Chronic dialysis patients who withdrew from dialysis seen by the RSC

program.

Data for Units 115 and 117 merged as the ANZDATA numerator has these merged.

We will aim to separate these data in future reports with the help of ANZDATA.



Dialysis patients are referred to the RSC service for either symptom management or end of life

care (if they are withdrawing from treatment).

For patients with initial referral to RSC for end of life care, the table below shows the average

number of days between first RSC appointment and death. For patients who are initially seen by

RSC for symptom management, then chose to withdraw from treatment, the time between last

dialysis and death is also shown.

HUB Hospital

ID

Number of patients with initial referral

to RSC for end of life

care

Average days between 1st appointment

and Death

Number of patients with Change of Pathway from

Dialysis symptom EOL management

Average days

between Last

dialysis and Death

Average days between 1st

appointment and Death

STG 105 1 16 5 6 135

HUB 108 2 75 1 2 580

111 2 7 0 - -

112 1 24 19 20 335

114 0 - 4 5 248

115 1 6 2 10 284

117 1 17 0 - -

122 0 - 0 - -

124 0 - 1 10 363

STG HUB 8 10 32 15 303

NEP 202 2 16 0 - -

HUB 203 2 6 2 7 194

209 3 7 9 9 243

213 1 19 0 - -

NEP HUB 8 17 11 8 238

JHH 301 0 - 4 3 281

HUB 306 8 16 21 13 97

312 1 - 0 - -

313 2 11 1 6 367

315 4 34 0 - -

317 1 6 5 4 200

320 0 - 1 131 210

JHH HUB 16 8 32 14 148

NSW Total 2017 32 10 75 14 226

Table 6: KPI 2b


KPI 2c: Chronic dialysis patients who are seen by the RSC service for symptom management

Definition: The proportion of chronic dialysis patients who are seen by the RSC service for symptom management

Numerator: Number of chronic dialysis patients seen by RSC

Denominator: Total number of chronic dialysis patients

All denominator data was obtained from the ANZDATA 2017 Report. The same caveats apply

as for above (2b). http://www.anzdata.org.au/v1/report_2017.html

10% of chronic dialysis patients are seen by the RSC service for symptom management.

Figure 3: KPI 2c % Chronic dialysis patients who are seen by the RSC service for symptom

management



Patients with more than one completed

POS form (n, (%))

Average POS Score at 1st

appointment

Average POS Score

at most recent

appointment

% patients with improved symptoms

between first and most recent appointment

Average time between first

and most recent

appointment (weeks)

HUB Hosp. ID Conser. RRT Conser. RRT Conser. RRT Conser. RRT Conser. RRT

STG 105 4 (12) 3 (9) 23 30 20 26 75% 67% 8 7

HUB 108 12 (36) 1 (3) 12 24 12 9 58% 100% 16 4

111 2 (13) 0 (0) 12 10 50% 13

112 26 (15) 12 (7) 16 19 14 16 54% 67% 15 18

114 5 (19) 12 (44) 21 25 18 23 80% 50% 19 11

115 6 (18) 5 (15) 17 35 14 27 83% 60% 15 13

117 1 (2) 3 (7) 43 30 21 28 100% 67% 14 10

122 0 0

124 10 (16) 1 (2) 6 10 4 10 50% 0% 13 6

STG HUB 66 (14) 37 (8) 15 25 13 21 61% 59% 15 13

NEP 202 10 (37) 4 (15) 11 18 12 12 60% 75% 20 16

HUB 203 5 (4) 6 (5) 14 22 17 24 20% 33% 14 5

209 21 (18) 3 (3) 13 30 14 27 52% 67% 21 19

213 1 (9) 2 (18) 29 15 25 13 100% 100% 31 13

NEP HUB 37 (13) 15 (5) 13 22 14 20 51% 60% 20 12

JHH 301 12 (32) 2 (5) 14 17 16 28 25% 50% 17 13

HUB 306 4 (4) 10 (9) 9 17 15 20 0% 40% 26 17

312 3 (19) 4 (25) 34 16 22 15 67% 75% 3 15

313 0 0

315 0 0

317 3 (15) 3 (15) 15 19 9 18 33% 67% 25 25

320 17 (27) 0 (0) 13 10 59% 19

JHH HUB 39 (14) 19 (7) 15 17 13 19 41% 53% 18 17

NSW Total 2017 142 (14) 71 (7) 14 22 13 20 53% 58% 17 14

Table 7

Data are available for only about one-fifth of the whole cohort. 53% of conservative patients and

58% of renal replacement therapy patients had an improvement in their symptoms (a reduction in

their iPOS score) between their first and most recent appointment, on average about 4 months.

This is a good outcome for ESKD patients who are known to have symptoms that are difficult to

treat.

KPI 3a: Change in Symptom burden

Definition: Change in Symptom burden from first to most recent appointment using the iPOS-Renal Symptom Severity Score (Appendix 2) Symptoms are scored from 0 to 4 (0- not at all, 4-overwhelming).

The total symptom score is calculated by summing the 15 physical symptoms and anxiety and depression scores (maximum value 68 - a very high and distressing symptom burden).


Data are available for only about one third of the whole cohort. Of these, 66% of conservative

patients and 63% of renal replacement therapy patients had an improved or stable functional

status between their first and most recent appointment, over a 3-4 month interval. This is not

surprising given the trajectory of ESKD, and may be less than expected. This will be monitored

carefully.

KPI 3b: Change in Functional Status

Definition: Change in Functional Status from first to most recent appointment (Karnofsky performance scale) (Appendix 3) The Karnofsky performance scale is used to measure the patient’s overall performance status (their ability to perform their activities of daily living). The score ranges between 10 and 100. A score of 100 signifies normal physical abilities with no evidence of disease. Decreasing numbers indicate a reduced performance status.


HUB Hosp

ID

Patients with more than one Karnofsky completed (n, (%))

Average Karnofsky

at 1st appointment

Average Karnofsky

at most recent appointment

% with improved or

stable Functional

status between first and most

recent assessment


and most recent

assessment (weeks)

Conser. RRT Conser. RRT Conser. RRT Conser. RRT Conser. RRT

STG HUB 105 7 (21) 7 (21) 70 60 70 60 57% 57% 10 5

108 12 (36) 3 (9) 70 70 70 70 67% 100% 19 3

111 3 (20) 0 40 40 33% 9

112 25 (14) 12 (7) 70 70 60 60 64% 58% 16 19

114 5 (19) 8 (30) 50 50 40 50 20% 75% 19 12

115 11 (33) 6 (18) 60 70 60 50 73% 17% 13 13

117 5 (12) 0 50 40 20% 6

122 0 0

124 0 0

STG HUB 68 (15) 36 (8) 60 60 60 60 57% 58% 15 12

NEP HUB 202 14 (52) 4 (15) 60 50 60 40 64% 50% 15 12

203 14 (11) 8 (6) 50 50 50 40 57% 63% 5 5

209 62 (53) 32 (27) 60 50 50 50 66% 88% 19 17

213 2 (18) 6 (55) 60 70 60 60 100% 33% 28 20

NEP HUB 92 (33) 50 (18) 60 50 50 50 65% 74% 17 15

JHH HUB 301 12 (32) 2 (5) 70 60 70 50 67% 50% 17 13

306 27 (25) 47 (44) 50 60 50 50 85% 57% 10 12

312 5 (31) 4 (25) 50 50 60 50 80% 50% 15 9

313 1 (8) 2 (15) 80 40 80 20 100% 0% 5 1

315 0 0

317 3 (15) 3 (15) 70 60 70 70 67% 67% 25 25

320 12 (19) 0 60 60 75% 22

JHH HUB 60 (22) 58 (21) 60 60 60 50 78% 55% 15 13

NSW Total 2017 220 (22) 144 (14) 60 60 60 50 66% 63% 15 13

Table 8


KPI 3c: Change in Nutritional Status

Definition: Change in Nutritional Status from first to most recent appointment (Subjective Global Assessment Score (SGA)- 7 point) The SGA-7 point tool assesses the risk of malnutrition and identifies patients who would benefit from nutritional support. Scores range from A7-A6 (well nourished), B5-3 (moderately malnourished) C2-1 (severely malnourished) (Appendix 4)

First appointment (patients with at least one SGA)

Most recent appointment

(for patients with more than one SGA)

HUB Hospital

ID

Patient Count Conservative (%) RRT (%) Patient Count Conservative (%) RRT (%)

Conser. RRT %A %B %C %A %B %C Conser. RRT %A %B %C %A %B %C

STG HUB 105 8 5 75 25 0 0 60 40 2 2 50 50 0 0 50 50

108 9 0 78 22 0 3 0 67 33 0

111 0 0 0 0

112 20 15 65 35 0 53 40 7 4 1 50 50 0 100 0 0

114 1 14 0 100 0 57 43 0 0 1 100 0 0

115 3 2 67 33 0 50 50 0 1 0 0 100 0

117 1 3 0 100 0 33 67 0 0 0

122 0 0 0 0

124 13 2 31 54 15 50 50 0 3 1 33 67 0 0 100 0

STG HUB 55 41 58 38 4 46 46 7 13 5 46 54 0 40 40 20

NEP HUB 202 5 3 60 40 0 33 33 33 1 1 100 0 0 0 100 0

203 22 46 32 68 0 33 50 17 9 29 33 33 33 38 48 14

209 36 8 75 25 0 75 25 0 26 3 65 35 0 33 67 0

213 1 0 100 0 0 0 0

NEP HUB 64 57 59 41 0 39 46 16 36 33 58 33 8 36 52 12

JHH HUB 301 16 5 63 38 0 40 40 20 3 0 67 33 0

306 1 5 0 100 0 60 40 0 0 1 0 100 0

312 6 3 17 83 0 0 100 0 2 3 0 100 0 0 67 33

313 2 0 0 100 0 2 0 0 100 0

315 2 1 0 100 0 0 100 0 0 0

317 5 3 80 20 0 33 67 0 1 0 0 100 0

320 29 0 31 59 10 7 0 43 14 43

JHH HUB 61 17 39 56 5 35 59 6 15 4 33 47 20 0 75 25

NSW Total 2017 180 115 52 45 3 41 48 11 64 42 50 41 9 33 52 14

Table 9


Patients with repeated SGA scores

HUB Hospital

ID Patient Count

% with any improvement

between first and most recent

nutrition assessment

% with no change between first and

most recent nutrition

assessment

Conserv. RRT Conserv. RRT Conserv. RRT

STG HUB 105 2 2 50 50 0 50

108 3 0 67 0

111 0 0

112 4 1 0 100 50 0

114 0 1 0 0

115 1 0 0 100

117 0 0

122 0 0

124 3 1 0 0 100 100

STG HUB 13 5 23 40 46 40

NEP HUB 202 1 1 0 100 100 0

203 9 29 11 34 44 38

209 26 3 27 0 69 67

213 0 0

NEP HUB 36 33 22 33 64 39

JHH HUB 301 3 0 33 0

306 0 1 0 100

312 2 3 0 33 100 33

313 2 0 0 100

315 0 0

317 1 0 0 100

320 7 0 57 14

JHH HUB 15 4 33 25 40 50

NSW Total 2017 64 42 25 33 55 40

Table 10

25% of conservative patients and 33% of renal replacement therapy patients had

an improvement in their nutritional status between their first and most recent

appointment.

55% of conservative patients and 40% of renal replacement therapy patients

maintained their nutritional status between their first and most recent appointment

However, so few patients had repeat assessments of their nutrition that it is not

possible to interpret these data accurately.


KPI 4a: Patient Satisfaction

Data for 271 patient surveys (Appendix 5) from 12 facilities (combined 2016-2017

responses). 23% of patients had attended the clinic for less than 3 months, 31% for 3-12

months and 37% for over 12 months (9% did not answer this question).

Strongly

Agree Agree Uncertain Disagree

Strongly

Disagree

Did not

answer

1. I was able to get an appointment as soon as I needed

61% 35% 3% 0% 1% 3%

2. I found the reception staff helpful and courteous

68% 25% 6% 1% 1% 2%

3. I found the medical/nursing/social work/dietetics staff helpful and courteous

73% 25% 1% 0% 1% 1%

4. I was pleased with the time I had to wait to be seen by clinic staff

61% 31% 5% 1% 1% 1%

5. The doctor explained things in a way that was easy to understand

66% 28% 4% 1% 1% 0%

6. When I left the clinic I had an understanding of the discussions and a clear understanding of future care

59% 34% 5% 1% 1% 0%

7. I was pleased with the speed with which symptoms were treated

56% 31% 11% 1% 1% 5%

8. I was pleased with how family are included in treatment and care decisions

62% 29% 7% 1% 1% 4%

9. Thinking about all aspects of my clinic visit, I was very satisfied

65% 31% 2% 0% 1% 1%

Table 11

This table is a cumulative report based upon 271 surveys across two years. These data are

encouraging in that patients and their families seem appreciative and pleased with the

service being received. We will aim to increase this response rate to establish greater

validity of these data in the future.


KPI 4b: Carer Satisfaction

Data for 92 carer surveys (Appendix 5) from 11 facilities (combined 2016-2017 responses).

Strongly


Strongly

Disagree

Did not

answer

1. We were able to get an appointment as soon as it was needed

63% 33% 4% 0% 0% 2%


62% 26% 13% 0% 0% 2%


74% 24% 2% 0% 0% 3%

4. I was pleased with the time we had to wait to be seen by clinic staff

63% 28% 8% 1% 0% 3%


66% 29% 5% 0% 0% 3%

6. When we left the clinic I had an understanding of the discussions and a clear understanding of future care

62% 34% 3% 0% 0% 3%

7. I was pleased with the speed with which my relative’s symptoms were treated

60% 32% 8% 0% 0% 9%

8. I was pleased with how I was included in treatment and care decisions

70% 25% 4% 0% 0% 5%

9. Thinking about all aspects of the clinic visit, I was very satisfied

67% 28% 4% 0% 0% 4%

Table 12

The response rate for carer/family satisfaction surveys is low and a bias may be present. On

these available data there appears to be strong family satisfaction with this service. This too

will be further addressed in future reports.


KPI 5: Patient's wishes for End of Life care documented and available

Definition: The proportion of RSC Patient's whose wishes for End of Life care are documented and available

Numerator: Number of patients with documented Advance Care Planning (ACP). Includes Advance Care Plans, Advance Care Directives and Enduring Guardianship.

Denominator: Total number of patients seen by the RSC service. Patients who had dementia (or were incompetent) (n=7) were excluded from these figures

Just over one-third had an ACP either documented or discussed – at face value this looks an area for improvement; some Units are examining this in greater detail to capture reasons why not every patient has had an ACP. This data should help other Units address this difficult issue in the future.

HUB Hospital ID

5a % ACP documented (Conservative Pts)

5a % ACP documented

and Discussed (Conservative Pts)

5b % ACP

documented (Dialysis

Pts)

5b % ACP documented &

discussed (Dialysis

Pts)

STG 105 0 35 0 57

HUB 108 39 74 14 57

111 22 22 25 50

112 27 27 28 28

114 80 80 67 76

115 45 73 43 57

117 8 42 8 17

122 0 0 23 39

124 0 0 20 20

STG HUB 21 31 28 40

NEP 202 33 100 55 100

HUB 203 2 3 2 2

209 6 29 12 29

213 50 100 67 100

NEP HUB 7 25 14 27

JHH 301 69 91 50 83

HUB 306 44 44 45 45

312 10 10 0 0

313 10 20 33 33

315 14 29 11 44

317 29 29 18 18

320 30 38 50 50

JHH HUB 38 46 36 41

NSW Total 2017 22 34 26 36

Table 13


Figure 4: KPI 5. % Patient's wishes for end of life care documented and available


KPI 6 and 7: Dietitian and Social Work Assessment

% consulted by a dietitian for Nutritional assessment

% consulted by a Social Worker for Social Work assessment

HUB Hospital ID 6

% consulted by a dietitian

7 % consulted by a

Social Worker

STG HUB 105 44 50

108 58 36

111 20 47

112 63 55

114 81 85

115 52 48

117 29 46

122 0 0

124 30 8

STG HUB 48 43

NEP HUB 202 78 70

203 67 78

209 86 84

213 27 36

NEP HUB 74 78

JHH HUB 301 79 87

306 25 26

312 69 88

313 54 15

315 35 78

317 60 60

320 56 66

JHH HUB 46 53

NSW Total 2017 55 55

Table 14: KPI 6 and 7 summary data 2017


KPI 6: % patients consulted by a dietitian for Nutritional assessment

Definition: The proportion of Renal Supportive Care patients consulted by a dietitian for Nutritional assessment

Numerator: Number of RSC patients consulted by a Dietitian for Nutritional assessment

Denominator: Total number of patients seen by the RSC service

The chart shows the proportion of patients that were seen by a RSC dietitian and “Other”

Renal dietitians

55% of patients attending Renal Supportive Care services have been consulted by a

Dietitian

Figure 5: KPI 6: % patients consulted by a dietitian for Nutritional assessment


KPI 7: % patients consulted by a Social Worker for Social Work assessment

Definition: The proportion of Renal Supportive Care patients consulted by a Social Worker for Social Work assessment

Numerator : Number of RSC patients consulted by a Social Worker for Social Work assessment

Denominator: Total number of patients seen by the RSC service

The chart shows the proportion of patients that were seen by a RSC Social Worker and

“Other” Renal Social Workers

55% of patients attending the Renal Supportive Care Service have been consulted by a

Social Worker

Figure 6: KPI 7: % patients consulted by a Social Worker (SW) for social work

assessment


Renal Supportive Care Research Projects-2017

Concord Hospital

A retrospective chart review to evaluate and compare the quality of death of patients

with renal failure dying in the acute hospital setting before and after implementation of a

renal supportive care service across two tertiary hospitals.

A prospective multi-centre exploratory study looking at nocturia in conservatively

managed patients and dialysis patients attending a renal supportive care service.

Royal North Shore Hospital

Outlook study: Outlook (observational) has consent waived as it is data entry only

following pts with GFR </= 15 mls/min and >/= 75 yrs old as they progress on either a

dialytic pathway or supportive care pathway.

Primary outcome: mortality reported from the point of enrolment in the study. 30 patients

enrolled.

Timely study: The purpose of this study is to better understand the outcomes that older

patients with kidney disease have if they are treated with dialysis or supportive care. We

can use this information in the future to help people make better decisions to improve

the quality of patient care. Timely is a smaller group (consented) who are enrolled in

Outlook and who need not be too infirm and to be able to complete questionnaires:

This looks at QOL at baseline and 6 monthly, Symptom burden at baseline and 6

monthly, Hospitalisations, Cost of medical care-hospital and individual as measured by

MBS and PBS. 2 patients enrolled.

Renal supportive care in the dialysis population (RESCuED) Study: To assess if

regular renal supportive care review significantly changes patient’s quality of life scores

and symptom scoring. Secondary objective: To assess if regular renal supportive care

review changes rates of hospitalisation and /or procedures, and the number of

documented advanced care plans in patients >75 years. Approximately 370 patients.

Eligible haemodialysis, peritoneal dialysis and transplant patients will be approached

and consented. Data collection will occur at baseline and every 3 months. It will include

baseline demographics, hospital admissions and quality of life and symptoms scores.

Patients will be given 3 different surveys to assess their symptom burden, quality of life

and depression scores. Patients who score between 11-21 on the HADS score, and/ or

have any “severe” or “overwhelming” symptoms in the IPOS renal, or “severe”

symptoms EQ-5D-5L will be reviewed by the renal supportive care team. At 3 monthly

intervals patient’s all 3 scoring systems will be reassessed.

Orange Base Hospital

What is the lived experience of patients living in rural NSW with chronic kidney disease

who are managed by a non-dialysis, supportive care pathway? The aim of this study is

to better understand the effect that chronic kidney disease has on the physiological,

psychosocial and spiritual domains of these patients as well as quality of life and well-

being, with due attention to the impact of co-morbidities and determinants of health. This

qualitative research study will utilise a descriptive phenomenological design, with data

captured via semi-structured interviews with participants residing in the districts of

Orange, Bathurst, Forbes, Parkes and Cowra. Interviews will be audio-recorded,

transcribed verbatim and analysed using Colaizzi's method1. Anticipated outcomes from

this study include the identification of areas of concern expressed by patients and this


will enable the design of more robust organisational structures and processes to better

support these patients in our rural communities.

Liverpool Hospital

A prospective cohort study of the symptom burden of patients with Chronic Kidney

Disease stage 4 and 5 who are not for dialysis.

St George Hospital

Pruritus RCT: A prospective randomised, cross-over trial of the efficacy and side effect

profile of gabapentin in the management of uraemic pruritus in haemodialysis patients

and patients managed conservatively.

Predictive tool for conservative patients: A retrospective study to design a prognostic

tool for ESKD patients on a non-dialysis pathway.

Health Literacy: To measure the rates of health literacy of Renal Supportive Care

patients and, where identified their surrogate decision makers at St George and

Sutherland Hospitals.

Frailty measure: to describe the prevalence of sarcopenia and frailty in a conservatively

managed renal population.

Quality of Life: Patients with end stage kidney failure require dialysis to sustain life. This

is a complex, costly, and time consuming process, requiring specialized equipment.

Patients live longer if an “adequate” amount of dialysis is performed. Often treatments

need to be more vigorous and longer to achieve “adequate” dialysis. Currently, little is

known about how patients actually feel on dialysis, and even less is known about the

impact of delivering “adequate” treatment on their quality of life. The purpose of this

project is to study quality of life in pre dialysis and dialysis patients from the St George

Renal Unit, and to measure whether efforts made to allow patients to live longer actually

make them feel any better?

Audit of ESA use in conservative patients: To determine if there is a relationship

between ESA use, Hb, and fatigue score in the CM population. To compare ESA use

between dialysis and CM populations and determine if Hb targets were achieved.

Prevalence of taste changes in CKD.

The influence of Advance Care Plans in clinical care during hospitalisation.

CKD managed without dialysis: survival symptoms and QOL.

Dialysis/transplant symptoms: To investigate and compare the symptom burden of

dialysis and transplant patients.

How patients feel about their decision to take up dialysis: Assess patients’

understanding of prognosis from ESKD, and potential factors influencing the decision-

making process in the initiation and withdrawal of dialysis.

A study to assess the predictive value of the surprise question and other predictive tools

Dialysis Symptoms: To determine if there is improved symptom scores in ESKD patients

on dialysis after attendance at RSC clinic.


Section 2: NSW Renal Supportive care Cumulative Report

July 2015 - December 2017

Introduction

This section summarises the RSC data provided by Renal Units across NSW between July 2015

and December 2017.

Summary of findings

2325 patients were managed through the RSC program across NSW between July 2015

and December 2017.

The average age of all patients seen by RSC services in NSW is 76 years.

57% of RSC patients were male.

52% were on a conservative non-dialysis pathway, 41% were on dialysis, and a small

proportion (7%) were on a pre-dialysis or undecided pathway.

44% of patients died.



13% of chronic dialysis patients were seen by the RSC program for symptom management.


improvement in their symptoms (a reduction in their iPOS score) between their first and

most recent appointment.


improved or stable functional status between their first and most recent appointment.


improvement in their nutritional status between their first and most recent appointment.

51% of conservative patients and 42% of renal replacement therapy patients maintained

their nutritional status between their first and most recent appointment.

25% of conservatively managed patients and 39% of renal replacement therapy patients

who attend Renal Supportive Care services had an Advance Care Plan documented.

61% of patients attending Renal Supportive Care services had been consulted by a

Dietitian.

56% of patients attending the Renal Supportive Care Service had been consulted by a

Social Worker.


Summary of NSW State averages for each KPI

Jul 15 - Dec

16 Jan -

Dec 17 Total

No. patients seen by Renal Supportive Care Service

1304 1021 2325

% Male 56 59 57

% Indigenous 3 5 4

Average Age (years) 76 76 76

% Conservative Care patients 50 54 52

% Deaths 55 30 44

Average Charlson Co-morbidity Score 7 7 7

2a. Number of conservative patients seen by RSC service 654 552 1206

2b. % Dialysis withdrawals managed by RSC Service 60 54 57

2c. % Chronic Dialysis pts seen by RSC for symptom management

15 10 25

3a. % patients with a decrease in POS scores between first and most recent appointment - Conservative 50 53 51

3a. % patients with a decrease in POS scores between first and most recent appointment - RRT 55 58 56

3b. % with improved or stable Karnofsky scores between first and most recent assessment - Conservative 49 66 57

3b. % with improved or stable Karnofsky scores between first and most recent assessment - RRT 50 63 55

3c. % with any improvement between first and most recent nutrition assessment - Conservative 22 25 23

3c. % with any improvement between first and most recent nutrition assessment - RRT 33 33 33

5a. % ACP documented (Conservative Pts) 28 22 25

5a. % ACP documented and Discussed (Conservative Pts) 44 34 39

5b. % ACP documented (Dialysis Pts) 28 26 27

5b. % ACP documented and discussed (Dialysis Pts) 41 36 39

6. % consulted by a dietitian 66 55 61

7. % consulted by a Social Worker 57 55 56

Table 15


KPI 1: Demographic Data NSW results

Definitions: 1a. Age: The average age of all patients seen by the RSC Service 1b. Co-morbidity Measure - Reported as the average Charlson Co-morbidity Index (CCI) for each unit. The CCI is used to measure patients’ comorbid conditions. Each condition is assigned a score of 1, 2, 3, or 6, depending on disease severity. A score for the patients’ age is also included. Scores are added together to provide a total CCI (maximum score = 40) 1c. Gender 1d. Indigenous Status

76 years

7

57% Male

4%

HUB Hospital ID

No. patients seen by Renal

Supportive Care Service

% Male

% Indigenous

Average Age (yrs)

% Conservative Care patients

% Deaths

Average Charlson Co-morb.

Score

STG 105 72 47 0 74 54 28 8

HUB 108 93 63 0 80 78 49 8

111 33 67 0 79 52 48 9

112 456 61 0 77 46 50 7

114 52 62 0 77 19 50 9

115 80 54 0 79 58 43 8

117 90 49 0 76 37 32 6

122 56 61 27 64 32 4 7

124 141 58 13 74 61 23 6

STG HUB 1073 59 3 76 50 40 7

NEP 202 54 54 4 77 70 54 10

HUB 203 270 54 3 71 47 51 7

209 292 52 1 78 57 55 8

213 47 60 2 70 13 26 6

NEP HUB 663 54 2 75 51 52 7

JHH 301 72 65 0 82 67 58 9

HUB 306 176 52 10 73 41 45 9

312 57 56 7 74 49 30 7

313 27 52 0 83 85 37 9

315 33 61 3 78 45 52 7

317 83 64 12 75 42 39 6

320 141 64 6 80 82 36 7

JHH HUB 589 59 7 77 57 42 8

NSW Total 16-17 2325 57 4 76 52 44 7

Table 16: Renal Supportive Care – Demographic Data Combined 2016-2017


HUB Hospital ID

2a Conservative pts seen

by RSC service (count)

2b* % Dialysis withdrawals

managed by RSC Service

2c* % Chronic Dialysis pts seen by RSC for Symp

Mgt

STG 105 39 30 7

HUB 108 73 31 3

111 17 33 4

112 210 100 37

114 10 59 19

115 46

69 7

117 33

122 18 0 21

124 86 29 40

STG HUB 532 54 14

NEP 202 38 33 9

HUB 203 126 39 10

209 167 100 10

213 6 30 14

NEP HUB 337 61 10

JHH 301 48 42 7

HUB 306 72 63 19

312 28 11 13

313 23 - -

315 15 67 11

317 35 100 43

320 116 33 5

JHH HUB 337 58 14

NSW 2016-17 1206 57 13

Table 17: KPI 2

KPI 2: Appropriateness

Number of conservatively managed Stage 4 or 5 CKD patients seen by the RSC service

% chronic dialysis patients withdrawing from dialysis seen by the RSC service

% chronic dialysis patients who are seen by the RSC service for symptom management


Pathways of patients seen by Renal Supportive Care Services

HUB Hospital ID Conservative

n (%) Dialysis

n (%) Other* n (%)

Total

STG 105 39 (54) 30 (42) 3 (4) 72

HUB 108 73 (78) 18 (19) 2 (2) 93

111 17 (52) 9 (27) 7 (21) 33

112 210 (46) 197 (43) 49 (11) 456

114 10 (19) 39 (75) 3 (6) 52

115 46 (58) 28 (35) 6 (8) 80

117 33 (37) 38 (42) 19 (21) 90

122 18 (32) 38 (68) 0 (0) 56

124 86 (61) 53 (38) 2 (1) 141

STG HUB 532 (50) 450 (42) 91 (8) 1073

NEP 202 38 (70) 13 (24) 3 (6) 54

HUB 203 126 (47) 136 (50) 8 (3) 270

209 167 (57) 115 (39) 10 (3) 292

213 6 (13) 27 (57) 14 (30) 47

NEP HUB 337 (51) 291 (44) 35 (5) 663

JHH 301 48 (67) 23 (32) 1 (1) 72

HUB 306 72 (41) 95 (54) 9 (5) 176

312 28 (49) 26 (46) 3 (5) 57

313 23 (85) 4 (15) 0 (0) 27

315 15 (45) 12 (36) 6 (18) 33

317 35 (42) 45 (54) 3 (4) 83

320 116 (82) 18 (13) 7 (5) 141

JHH HUB 337 (57) 223 (38) 29 (5) 589

NSW Total 16-17 1206 (52) 964 (41) 155 (7) 2325

Table 18: KPI 2a * Other includes patients on pre-dialysis pathway or undecided

Figure 7: KPI 2a

KPI 2a: Conservatively managed Stage 4 or Stage 5 CKD patients seen by the RSC program

Definition: The number of conservatively managed Stage 4 or 5 CKD patients who are seen by the Renal Supportive Care service.


Denominator data obtained from the ANZDATA 2016 and 2017 Reports.



Figure 8: KPI 2b

Figure 9: KPI 2c

KPI 2b: Chronic dialysis patients withdrawing from dialysis seen by the RSC service

Definition: The proportion of chronic dialysis patients who withdrew from dialysis, seen by the RSC service

Numerator : Number of patients who withdrew from dialysis seen by RSC

Denominator: Total number of dialysis patients who withdrew from dialysis


All denominator data was obtained from the ANZDATA 2016-17 Reports.

13% of chronic dialysis patients are seen by the RSC service for symptom management

Figure 10: KPI 2c

Figure 11: KPI 2c

KPI 2c: Chronic dialysis patients who are seen by the RSC service for symptom management

Definition: The proportion of chronic dialysis patients who are seen by the RSC service for symptom management

Numerator : Number of chronic dialysis patients seen by RSC

Denominator: Total number of chronic dialysis patients


KPI 3a: Change in Symptom burden

Definition: Change in Symptom burden from first to most recent appointment using the iPOS-Renal Symptom Severity Score Symptoms are measured using the iPOS -Renal. Symptoms are scored from 0 to 4 (0- not at all,

4-overwhelming).

The total symptom score is calculated by summing the 17 symptoms scores (maximum value 68 - a very high and distressing symptom burden).


Patients with more than one

completed POS form (n, (%))

Average POS Score

at 1st appointment

Average POS Score

at most recent appt

% patients with

improved symptoms between first and

most recent appt

Average time

between first and

most recent appt

(weeks)

HUB Hosp ID Conser. RRT Conser. RRT Conser. RRT Conser. RRT Conser. RRT

STG HUB 105 12 (17) 11 (15) 21 19 19 17 58 55 26 20

108 40 (43) 5 (5) 10 18 10 8 55 100 25 35

111 6 (18) 1 (3) 14 7 16 10 33 0 28 80

112 74 (16) 55 (12) 18 17 16 15 53 53 38 37

114 9 (17) 24 (46) 28 32 18 22 89 67 19 16

115 15 (19) 10 (13) 18 29 16 24 53 50 26 18

117 2 (2) 5 (6) 27 27 18 22 50 80 15 7

122 0 0

124 25 (18) 21 (15) 7 7 5 5 60 62 32 43

STG HUB 183 (17) 132 (12) 15 20 13 16 56 59 31 31

NEP HUB 202 29 (54) 6 (11) 11 18 13 13 38 83 36 25

203 17 (6) 19 (7) 20 21 17 16 65 63 26 26

209 45 (15) 22 (8) 15 22 17 16 47 55 33 43

213 5 (11) 19 (40) 18 14 18 20 60 32 41 59

NEP HUB 96 (14) 66 (10) 15 19 16 17 48 53 33 41

JHH HUB 301 23 (32) 5 (7) 15 24 15 27 43 40 26 16

306 13 (7) 19 (11) 14 19 15 21 38 37 39 18

312 3 (5) 8 (14) 34 15 22 12 67 63 3 28

313 10 (37) 1 (4) 12 35 16 11 30 100 55 3

315 0 0

317 11 (13) 16 (19) 14 20 14 18 36 69 42 46

320 39 (28) 1 (1) 13 22 13 22 51 0 28 1

JHH HUB 99 (17) 50 (8) 14 19 14 19 44 52 33 28

NSW Total 16-17 378 (16) 248 (11) 15 20 14 17 51 56 32 33

Table 19: KPI 3a - 51% of conservative patients and 56% of renal replacement therapy patients had an improvement in their symptoms (a reduction in their iPOS score) between their first and most recent appointment


Percentage of patients with improved symptoms –2016-17

1. Conservative patients

Figure 12: Improved symptoms – conservative

2. Renal Replacement Therapy patients

Figure 13: Improved symptoms – Renal Replacement


57% of conservative patients and 55% of renal replacement therapy patients had an improved

or stable functional status between their first and most recent appointment.

HUB Hospital

ID

Patients with more than one

Karnofsky completed (n, (%))

Average Karnofsky

at 1st appointment

Average Karnofsky

at most recent appointment

% with improved or

stable functional

status between first and most

recent assessment


and most recent

assessment (weeks)

Conserv RRT Conserv RRT Conserv RRT Conserv RRT Conserv RRT

STG 105 18 (25) 20 (28) 60 60 60 50 61% 50% 24 14

HUB 108 50 (54) 10 (11) 60 60 60 60 64% 70% 32 37

111 7 (21) 2 (6) 50 50 40 50 43% 50% 27 59

112 76 (17) 54 (12) 70 70 60 70 54% 52% 37 39

114 9 (17) 21 (40) 50 40 40 40 22% 67% 27 19

115 18 (23) 17 (21) 60 60 50 50 61% 41% 19 17

117 5 (6) 0 50 40 20% 6

122 0 0

124 0 0

STG HUB 183 (17) 124 (12) 60 60 60 60 55% 54% 31 29

NEP 202 14 (26) 4 (7) 60 50 60 40 64% 50% 15 12

HUB 203 47 (17) 48 (18) 60 60 50 50 47% 48% 15 24

209 97 (33) 68 (23) 60 60 50 50 54% 62% 30 28

213 5 (11) 15 (32) 60 60 50 60 40% 60% 50 44

NEP HUB 163 (25) 135 (20) 60 60 50 50 52% 56% 25 28

JHH 301 22 (31) 6 (8) 70 70 70 50 64% 50% 25 16

HUB 306 51 (29) 78 (44) 60 60 50 50 67% 54% 21 21

312 7 (12) 14 (25) 60 60 50 50 57% 57% 22 26

313 13 (48) 3 (11) 60 40 50 30 54% 33% 50 2

315 0 0

317 12 (14) 17 (20) 70 60 60 60 50% 65% 39 39

320 31 (22) 5 (4) 60 60 60 40 74% 20% 30 11

JHH HUB 136 (23) 123 (21) 60 60 60 50 65% 54% 28 23

NSW Total 16-17 482 (21) 382 (16) 60 60 60 50 57% 55% 28 26

Table 20: KPI 3b

KPI 3b: Change in Functional Status

Definition: Change in Functional Status from first to most recent appointment (Karnofsky performance scale) The Karnofsky performance scale is used to measure the patient’s overall performance status (their ability to perform their activities of daily living). The score ranges between 10 and 100. A score of 100 signifies normal physical abilities with no evidence of disease. Decreasing numbers indicate a reduced performance status.


Percentage of patients with improved/ stable Functional status –2016-17

1. Conservative patients

Figure 14: Improved/stable Functional status - conservative

2. Renal Replacement Therapy patients

Figure 15: Improved/stable Functional status - Renal replacement


KPI 3c: Change in Nutritional Status

Definition: Change in Nutritional Status from first to most recent appointment (Subjective Global Assessment Score (SGA)- 7 point) The SGA-7 point tool assesses the risk of malnutrition and identifies patients who would benefit from nutritional support. Scores range from A7-A6 (well nourished), B5-3 (moderately malnourished) C2-1 (severely malnourished).

First appointment

For patients with more than one SGA

Most recent appointment

HUB Hospital

ID

Patient Count Conservative

(%) RRT (%) Patient Count

Conservative (%)

RRT (%)

Conservative RRT %A %B %C %A %B %C Conservative RRT %A %B %C %A %B %C

STG 105 19 10 63 37 0 10 70 20 7 5 71 29 0 40 40 20

HUB 108 19 2 74 26 0 50 50 0 8 0 50 50 0

111 2 3 100 0 0 33 67 0 2 1 100 0 0 0 0 100

112 64 100 56 41 3 51 44 5 23 17 48 48 4 59 41 0

114 4 29 25 75 0 45 48 7 1 9 0 100 0 11 78 11

115 13 16 46 38 15 31 44 25 4 5 0 75 25 20 60 20

117 10 9 60 30 10 44 56 0 0 0

122 0 0 0 0

124 26 38 31 54 15 61 34 5 9 21 33 56 11 43 48 10

STG HUB 157 207 54 40 6 48 45 7 54 58 46 48 6 40 50 10

NEP 202 10 4 50 50 0 25 50 25 4 2 50 50 0 0 100 0

HUB 203 70 108 37 56 7 41 48 11 43 79 47 44 9 46 41 14

209 81 35 69 26 5 60 26 14 60 18 60 38 2 67 28 6

213 4 14 100 0 0 79 21 0 2 11 100 0 0 55 36 9

NEP HUB 165 161 55 39 5 48 41 11 109 110 55 40 5 49 39 12

JHH 301 31 8 55 45 0 38 50 13 6 0 67 33 0

HUB 306 11 9 55 36 9 56 44 0 1 2 0 0 100 50 50 0

312 17 21 12 76 12 0 86 14 8 17 13 88 0 12 82 6

313 9 0 56 44 0 5 0 60 40 0

315 4 3 25 75 0 0 67 33 0 0

317 16 24 69 25 6 42 58 0 3 7 67 33 0 29 57 14

320 79 5 38 48 14 0 40 60 25 0 40 32 28

JHH HUB 167 70 43 48 9 26 63 11 48 26 42 42 17 19 73 8

NSW 16-17 489 438 51 43 7 44 46 9 211 194 50 43 8 42 47 11

Table 21: KPI 3c


Patients with repeated SGA scores

HUB Hospital ID

Patient Count

% with any improvement between first and most

recent nutrition assessment

% with no change between first and most

recent nutrition assessment

Conservative RRT Conservative RRT Conservative RRT

STG HUB 105 7 5 29 80 14 20

108 8 0 38 13

111 2 1 0 0 100 0

112 23 17 9 41 52 53

114 1 9 0 22 0 33

115 4 5 25 20 50 60

117 0 0

122 0 0

124 9 21 11 33 67 33

STG HUB 54 58 17 36 44 40

NEP HUB 202 4 2 0 50 50 50

203 43 79 35 32 40 39

209 60 18 20 33 65 56

213 2 11 0 27 100 36

NEP HUB 109 110 25 32 55 42

JHH HUB 301 6 0 17 50

306 1 2 100 50 0 50

312 8 17 38 29 50 59

313 5 0 0 100

315 0 0

317 3 7 0 29 100 29

320 25 0 28 36

JHH HUB 48 26 25 31 50 50

NSW Total 16-17 211 194 23 33 51 42

Table 22: KPI 3c – repeated SGA scores


improvement in their nutritional status between their first and most recent appointment.

51% of conservative patients and 42% of renal replacement therapy patients maintained their

nutritional status between their first and most recent appointment.


Percentage of patients with any improvement in nutrition assessment–2016-17

1. Conservative patients with repeated SGA score

Figure 16: KPI 3c

2. Renal Replacement Therapy patients with repeated SGA score

Figure 17: KPI 3c repeated SGA scores


25% of conservative patients and 27% of renal replacement therapy patients who attend Renal

Supportive Care services had an Advance Care Plan documented.

Table 23: KPI 5

KPI 5: Patient's wishes for End of Life care documented and available

Definition: The proportion of RSC Patient's whose wishes for End of Life care are documented and available

Numerator: Number of patients with documented Advance Care Planning (ACP). Includes Advance Care Plans, Advance Care Directives and Enduring Guardianship.

Denominator: Total number of patients seen by the RSC service. Patients who had dementia (or were incompetent) (n=7) were excluded from these figures

HUB Hospital ID

5a % ACP

documented (Conservative Pts)

5a % ACP

documented and Discussed

(Conservative Pts)

5b % ACP

documented

(Dialysis Pts)

5b % ACP

documented and discussed (Dialysis

Pts)

STG HUB 105 15 38 10 50

108 46 76 28 83

111 29 35 33 56

112 28 28 28 28

114 90 90 77 87

115 62 78 50 61

117 4 43 5 18

122 0 0 21 39

124 3 3 21 21

STG HUB 27 37 29 39

NEP HUB 202 50 91 62 100

203 10 22 12 18

209 4 33 17 47

213 50 100 59 70

NEP HUB 11 36 21 38

JHH HUB 301 58 90 22 83

306 49 49 46 48

312 11 14 4 4

313 39 57 50 50

315 8 15 25 50

317 11 11 9 16

320 35 45 56 56

JHH HUB 36 46 31 41

NSW 2016-17 25 39 27 39


Figure 18: KPI 5

Figure 19: KPI 5


KPI 6 and 7: Dietitian and Social Work Assessment

% consulted by a dietitian for Nutritional assessment

% consulted by a Social Worker for Social Work assessment

HUB Hospital ID 6

% consulted by a dietitian

7 % consulted by a

Social Worker

STG HUB 105 44 49

108 49 35

111 33 64

112 66 49

114 85 85

115 63 38

117 32 28

122 0 0

124 58 18

STG HUB 55 41

NEP HUB 202 59 56

203 79 83

209 75 78

213 53 57

NEP HUB 74 77

JHH HUB 301 68 82

306 26 35

312 86 82

313 63 48

315 45 73

317 66 69

320 70 75

JHH HUB 56 62

NSW 2016-17 61 56

Table 24: KPI 7


The chart shows the proportion of patients that were seen by a RSC dietitian and “Other” Renal

dietitians.

61% of patients attending Renal Supportive Care services have been consulted by a Dietitian.

Figure 20: KPI 6

Figure 21: KPI 6

KPI 6: % patients consulted by a dietitian for Nutritional assessment

Definition: The proportion of Renal Supportive Care patients consulted by a dietitian for Nutritional assessment.

Numerator : Number of RSC patients consulted by a Dietitian for Nutritional assessment.

Denominator: Total number of patients seen by the RSC service.


The chart shows the proportion of patients that were seen by a RSC Social Worker and “Other”

Renal Social Workers

56% of patients attending the Renal Supportive Care Service have been consulted by a Social

Worker

Figure 22: KPI 7

Figure 23: KPI 7 - 2016 and 2017

KPI 7: % patients consulted by a Social Worker for Social Work assessment

Definition: The proportion of Renal Supportive Care patients consulted by a Social Worker for Social Work assessment.

Numerator : Number of RSC patients consulted by a Social Worker for Social Work assessment.

Denominator: Total number of patients seen by the RSC service.


Quality of Life: EQ-5D-5L

Key findings:

Of 1255 patients from 22 renal units, managed through the service between January 2016

and September 2017, 353 completed the EQ-5D-5L questionnaire at baseline (referral into

the service); 67 completed at 6-months follow-up; 12 at 12-months and 2 at 18-months

follow-up.

Of QOL surveys completed at baseline (28%) response rate, the missing data within

surveys was very low (i.e very good) suggesting people find the task easy to do.

Of 353 people completing baseline EQ-5D questionnaires the mean score (on a 0=death,

1= full health scale) for people on a conservative pathway (non-dialysis) was 0.49 (n=174),

for people on dialysis was 0.40 (n=135), for people pre-dialysis was 0.47 (n=24), for

transplant recipients was 0.30 (n=10), and for those with a pathway unrecorded was 0.61

(n=10).

At baseline, the domains of QOL that were most affected were: mobility, pain, and usual

activities.

Key messages:

Less than a third of people referred to the RSC clinics are completing EQ-5D, resulting in a

'selected' sample and possibly not representative of statewide service users.

Repeated collection of EQ-5D at 6-month time points is necessary to show any effect of the

RSC service on QOL.

Analysis is ongoing as more data is received.


Appendices

Appendix 1: Charlson Co-morbidity Score

Co-morbidities Score Description

Myocardial

Infarction

1 Myocardial infarction (MI) includes patients with one or

more definite or probable MI. These patients should have

been hospitalised for chest pain or an equivalent clinical

event and have had electrocardiographic and/or enzyme

changes. Patients with electrocardiographic changes

alone who have no clinical history are not designated as

having had an infarction.

Congestive

Heart Failure

1 Congestive Heart Failure includes patients who have had

exertional or paroxysmal nocturnal dyspnea and who have

responded symptomatically (or on physical examination)

to digitalis, diuretics, or afterload reducing agents. It does

not include patients who are on one of those medication

but who have had no response and no evidence of

improvement of physical signs with treatment.

Peripheral

Vascular

Disease

1 Peripheral Vascular Disease includes patients with

intermittent claudication or those who had a bypass for

arterial insufficiency, those with gangrene or acute arterial

insufficiency, and those with a treated or untreated

thoracic or abdominal aneurysm (6cm or more).

Cerebrovascula

r Disease

1 Cerebrovascular disease includes patient with a history of

a cerebrovascular accident with minor or no residua, and

patients who have had transient ischaemic attacks. If the

CVA resulted in hemiplegia, code only hemiplegia.

Dementia 1 Dementia includes patients with moderate to severe

chronic cognitive deficit resulting in impaired function from

any cause.

COPD 1 Pulmonary disease includes patients with asthma, chronic

bronchitis, emphysema, and other chronic lung disease

who have ongoing symptoms such as dyspnea or cough,

with mild or moderate activity. This includes patients who

are dyspneic with slight activity, with or without treatment

and those who are dyspneic with moderate activity despite

treatment, as well as patient who are dyspneic at rest,

despite treatment, those who require constant oxygen,

those with CO2 retention and those with a baseline PO2

below 50 torr.

Connective

Tissue Disease

1 Includes patients with systemic lupus erythematous,

polymyositis, mixed connective tissue disease, rheumatoid

arthritis, polymyositis, polymyalgia rheumatic, vasculitis,

sarcoidosis, Sjogrens syndrome or any other

systemicvasculitis.


Peptic Ulcer

Disease

1 Peptic Ulcer disease includes patients who have required

treatment for ulcer disease, including those who have bled

from ulcers.

Diabetes

Mellitus -

uncomplicated

1 Includes patients with diabetes treated with insulin or oral

hypoglycemic, but not diet alone. Diabetes during

pregnancy alone is not counted.

Diabetes

Mellitus - end-

organ damage

2 This includes patients with retinopathy, neuropathy, or

neuropathy attributable to diabetes.

Moderate to

Severe CKD

2 Moderate renal sufficiency includes patients with a serum

creatinine >3mg/dl. Severe renal disease includes patients

on dialysis, those who had a transplant and those with

uremia.

Hemiplegia 2 This includes patients with a hemiplegia or paraplegia,

whether it occurred as a result of a cerebrovascular

accident or other condition.

Leukaemia 2 Leukaemia includes patients with acute or chronic

myelogenous leukaemia, acute and chronic lymphocytic

leukaemia, and polycythemia vera.

Malignant

Lymphoma

2 Lymphoma includes patients with Hodgkins,

Lymphosarcoma, Waldenstrom’s macroglobulinemia,

myeloma, and other lymphomas.

Solid Tumour-

non metastatic

2 Solid tumor consists of patients with solid tumors without

documented metastases, including breast, colon, lung,

prostate, and a variety of other tumors.

Solid Tumour-

metastatic

6 Metastatic cancer includes patients with metastatic solid

tumors, including breast, lung, colon and other tumors.

Liver Disease –

mild

1 Mild Liver disease consists of chronic hepatitis (B or C) or

cirrhosis without portal hypertension.

Liver Disease -

moderate to

severe

3 Moderate liver disease consists of cirrhosis with portal

hypertension, but without bleeding. Severe liver disease

consists of patients with ascites, chronic jaundice, portal

hypertension or a history of variceal bleeding of those who

have had liver transplant.

AIDS 6 Acquired immune deficiency syndrome includes patients

with definite or probable AIDS ie: AIDS related complex,

and those who are HIV positive and asymptomatic.

Age

<50 years

50-59 years

60-69 years

70-79 years

≥ 80 years

0

1

2

3

4

*Charlson ME: http://www.rtog.org/LinkClick.aspx?fileticket=8o6FpyC8s9w%3D&tabid=290

http://www.rtog.org/LinkClick.aspx?fileticket=8o6FpyC8s9w%3D&tabid=290


Appendix 2: IPOS

IPOS Renal: http://pos-pal.org/

http://pos-pal.org/


Appendix 3: Karnofsky

Karnofsky

Circle

appropriate

score

Definition Criteria Score

Able to carry on

normal activity

and to work. No

special care

needed

Normal, no complaints, no evidence of

disease

100

Able to carry on normal activity, minor

signs of symptoms of disease

90

Normal activity with effort, some signs

of symptoms of disease

80

Unable to work.

Able to live at

home, care for

most personal

needs. A varying

amount of

assistance is

needed

Cares for self. Unable to carry on

normal activity or to do active work

70

Requires occasional assistance but is

able to care for most needs

60

Requires considerable assistance and

frequent medical care

50

Unable to care

for self.

Requires

equivalent of

institutional or

hospital care.

Disease may be

progressing

rapidly

Disabled requires special care and

assistance

40

Severely disabled, hospitalisation is

indicated although death not imminent

30

Very sick, hospitalisation necessary,

active supportive treatment necessary

20

Moribund, fatal processes progressing

rapidly

10


Appendix 4: SGA 7 point


Appendix 5: Patient and Carer satisfaction surveys

Renal Supportive Care Clinic – Patient Satisfaction Survey We are interested in your honest opinion regarding the care you received during your most recent

visit at our Renal Supportive Care Clinic. All responses will be treated as anonymous and will be

used to improve the services we provide.

1. How long have you been coming to the Renal Supportive Care clinic

Less than 3 month Between 3-6 months Between 6-12 months More than a year

Please indicate the level to which you agree

with the statements below.

Strongly

Agree Agree Uncertain

Disagre

e

Strongly

Disagree

2. I was able to get an appointment as soon as I needed

1 2 3 4 5


1 2 3 4 5


1 2 3 4 5

5. I was pleased with the time I had to wait to be seen by clinic staff

1 2 3 4 5


1 2 3 4 5

7. When I left the clinic I had an understanding of the discussions and a clear understanding of future care

1 2 3 4 5

8. I was pleased with the speed with which symptoms were treated

1 2 3 4 5

9. I was pleased with how family are included in treatment and care decisions

1 2 3 4 5

10. Thinking about all aspects of my clinic visit, I was very satisfied

1 2 3 4 5

11. Do you have any further comments you would like to make

Thank you for completing the survey,

if you have any questions contact the Renal Supportive Care Clinic


Renal Supportive Care Clinic - Carer Satisfaction Survey

We are interested in your honest opinion regarding the care that your family member/ person you

are caring for received during their most recent visit to our Renal Supportive Care Clinic. All

responses will be treated as anonymous and will be used to improve the services we provide.

1. How long has your family member/ person you are caring for been coming to the Renal

Supportive Care clinic

Less than 3 month Between 3-6 months Between 6-12 months More than a year

Please indicate the level to which you agree

with the statements below.

Strongly


Strongly

Disagree

2. We were able to get an appointment as soon as it was needed

1 2 3 4 5


1 2 3 4 5


1 2 3 4 5

5. I was pleased with the time we had to wait to be seen by clinic staff

1 2 3 4 5


1 2 3 4 5

7. When we left the clinic I had an understanding of the discussions and a clear understanding of future care

1 2 3 4 5

8. I was pleased with the speed with which my relative’s symptoms were treated

1 2 3 4 5

9. I was pleased with how I was included in treatment and care decisions

1 2 3 4 5

10. Thinking about all aspects of the clinic visit, I was very satisfied

1 2 3 4 5

11. Do you have any further comments you would like to make

Thank you for completing the survey,

if you have any questions contact the Renal Supportive Care Clinic

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