Introduction: Chronic kidney disease (CKD) affects people across their lifespan. Kidney supportive care (KSC) is typically offered for older people for symptom management, education, and/or advance care planning (ACP). However, younger people may also benefit from KSC. This study sought to explore characteristics of working-age adults with CKD accessing KSC. Methods: Using a cross-sectional design, working-age adults (18–64 years) with CKD referred to a KSC service from February 2016 to July 2021 were included. Demographic and clinical data were extracted from patients’ hospital records. Self-reported symptoms (Integrated Palliative Care Outcome Scale renal [IPOS-renal]) and health-related quality of life (European quality of life [EQ-5D-5L]) were assessed. Reasons for referral to KSC, kidney replacement therapy (KRT) pathway at referral, and comorbidity calculated using the Charlson Comorbidity Index were also assessed. Results: One Hundred Fifty-six working-age adults attended the KSC service. Median age was 57 years, with more than half receiving KRT. Weakness (92.2%), poor mobility (83.3%), and pain (82.5%) were the most prevalent and severe symptoms. The majority were referred for symptom management (n = 83, 53.2%) and 27% for ACP (n = 42). The ACP completion rate was low (28.9%). Those on dialysis had significantly higher symptom scores than those not receiving dialysis (p < 0.05). Conclusion: Working-age adults with CKD experience a significant and debilitating symptom burden and need to consider options for treatment. This study provides new understanding about working-age adults with CKD that may help provide the specific support needed to meet their end-of-life care needs.

1.
Kalantar-Zadeh
K
,
Jafar
TH
,
Nitsch
D
,
Neuen
BL
,
Perkovic
V
.
Chronic kidney disease
.
Lancet
.
2021
;
398
(
10302
):
786
802
.
2.
Webster
AC
,
Nagler
EV
,
Morton
RL
,
Masson
P
.
Chronic kidney disease
.
Lancet
.
2017
;
389
(
10075
):
1238
52
.
3.
Charles
C
,
Ferris
AH
.
Chronic kidney disease
.
Prim Care
.
2020
;
47
(
4
):
585
95
.
4.
Yapa
H
,
Purtell
L
,
Chambers
S
,
Bonner
A
.
The relationship between chronic kidney disease, symptoms and health-related quality of life: a systematic review
.
J Ren Care
.
2020
;
46
(
2
):
74
84
.
5.
Almutary
H
,
Bonner
A
,
Douglas
C
.
Symptom burden in chronic kidney disease: a review of recent literature
.
J Ren Care
.
2013
;
39
(
3
):
140
50
.
6.
Murtagh
FE
,
Addington-Hall
J
,
Higginson
IJ
.
The prevalence of symptoms in end-stage renal disease: a systematic review
.
Adv Chronic Kidney Dis
.
2007
;
14
(
1
):
82
99
.
7.
Davison
SN
,
Levin
A
,
Moss
AH
,
Jha
V
,
Brown
EA
,
Brennan
F
.
Executive summary of the kdigo controversies conference on supportive care in chronic kidney disease: developing a roadmap to improving quality care
.
Kidney Int
.
2015
;
88
(
3
):
447
59
.
8.
Papalia
DE
,
Olds
SW
,
Feldman
RD
Human development
11th ed
New York
McGraw-Hill
2009
.
9.
Feldman
RS
Development across the life span
8th ed
New Jersey
Pearson/Prentice Hall
2016
.
10.
Adams
ML
.
Differences between younger and older US adults with multiple chronic conditions
.
Prev Chronic Dis
.
2017
14
E76
.
11.
Salsman
JM
,
Garcia
SF
,
Yanez
B
,
Sanford
SD
,
Snyder
MA
,
Victorson
D
.
Physical, emotional, and social health differences between posttreatment young adults with cancer and matched healthy controls
.
Cancer
.
2014
;
120
(
15
):
2247
54
.
12.
Stone
D
,
Ganz
P
,
Pavlish
C
,
Robbins
W
,
Stone
DS
,
Ganz
PA
.
Young adult cancer survivors and work: a systematic review
.
J Cancer Surviv
.
2017
;
11
(
6
):
765
81
.
13.
Zebrack
BJ
.
Psychological, social, and behavioral issues for young adults with cancer
.
Cancer
.
2011
117
10 Suppl
2289
94
.
14.
Krischock
L
,
Kennedy
SE
,
Hayen
A
.
Multicentre study of treatment outcomes in Australian adolescents and young adults commencing dialysis
.
Nephrology
.
2017
;
22
(
12
):
961
8
.
15.
Murray
PD
,
Dobbels
F
,
Lonsdale
DC
,
Harden
PN
.
Impact of end-stage kidney disease on academic achievement and employment in young adults: a mixed methods study
.
J Adolesc Health
.
2014
;
55
(
4
):
505
12
.
16.
Murray
PD
,
Brodermann
MH
,
Gralla
J
,
Wiseman
AC
,
Harden
PN
.
Academic achievement and employment in young adults with end-stage kidney disease
.
J Ren Care
.
2019
;
45
(
1
):
29
40
.
17.
Reid
C
,
Seymour
J
,
Jones
C
.
A thematic synthesis of the experiences of adults living with hemodialysis
.
Clin J Am Soc Nephrol
.
2016
;
11
(
7
):
1206
18
.
18.
Mok
M
,
Liu
C
,
Lam
MF
,
Kwan
L
,
Chan
G
,
Ma
M
.
A longitudinal study on the prevalence and risk factors for depression and anxiety, quality of life, and clinical outcomes in incident peritoneal dialysis patients
.
Perit Dial Int
.
2019
;
39
(
1
):
74
82
.
19.
Von Elm
E
,
Altman
DG
,
Egger
M
,
Pocock
SJ
,
Gotzsche
PC
,
Vandenbroucke
JP
STROBE Initiative
.
The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies
.
Ann Intern Med
.
2007
;
147
(
8
):
573
7
.
20.
Cicely Saunders Institute. Palliative care outcome scale: IPOS-Renal [cited 2021 Nov 1]. Available from: https://pos-pal.org/maix/ipos-renal-in-english.php.
21.
EuroQol. EQ-5D-5L samples/demos [cited 2021 Nov 1]. Available from: https://euroqol.org/eq-5d-instruments/sample-demo/.
22.
Charlson
M
. Charlson comorbidity index. MDCALC [cited 2021 Nov 1]. Available from: https://www.mdcalc.com/charlson-comorbidity-ubdex-cci.
23.
Australian Institute of Health and Welfare
. Resource utilisation groups activities of daily living [cited 2021 Nov 1]. Available from: https://meteor.aihw.gov.au/content/index.phtml/itemId/495909.
24.
Abernethy
AP
,
Shelby-James
T
,
Fazekas
BS
,
Woods
D
,
Currow
DC
.
The Australia-modified Karnofsky performance status (AKPS) scale: a revised scale for contemporary palliative care clinical practice
.
BMC Palliat Care
.
2005
;
4
(
1
):
1
12
.
25.
IBM SPSS TM statistics for Windows. Version 27.0
Armonk, NY
IBM Corp
2015
.
26.
Field
A
Discovering statistics using IBM SPSS statistics
SAGE publications
2013
.
27.
Li
H
,
Xie
L
,
Yang
J
,
Pang
X
.
Symptom burden amongst patients suffering from end-stage renal disease and receiving dialysis: a literature review
.
Int J Nurs Sci
.
2018
;
5
(
4
):
427
31
.
28.
Brown
SA
,
Tyrer
FC
,
Clarke
AL
,
Lloyd-Davies
LH
,
Stein
AG
,
Tarrant
C
.
Symptom burden in patients with chronic kidney disease not requiring renal replacement therapy
.
Clin Kidney J
.
2017
;
10
(
6
):
788
96
.
29.
Senanayake
S
,
Gunawardena
N
,
Palihawadana
P
,
Bandara
P
,
Haniffa
R
,
Karunarathna
R
.
Symptom burden in chronic kidney disease: a population based cross sectional study
.
BMC Nephrol
.
2017
;
18
(
1
):
228
.
30.
Yapa
HE
,
Purtell
L
,
Chambers
S
,
Bonner
A
.
Alterations in symptoms and health-related quality of life as kidney function deteriorates: a cross-sectional study
.
J Clin Nurs
.
2021
30
11–12
1787
96
.
31.
Moskovitch
JT
,
Mount
PF
,
Davies
MR
.
Changes in symptom burden in dialysis patients assessed using a symptom-reporting questionnaire in clinic
.
J Palliat Care
.
2020
;
35
(
1
):
59
65
.
32.
Artom
M
,
Moss-Morris
R
,
Caskey
F
,
Chilcot
J
.
Fatigue in advanced kidney disease
.
Kidney Int
.
2014
;
86
(
3
):
497
505
.
33.
Nowe
E
,
Friedrich
M
,
Leuteritz
K
,
Sender
A
,
Stöbel-Richter
Y
,
Schulte
T
.
Cancer-related fatigue and associated factors in young adult cancer patients
.
J Adolesc Young Adult Oncol
.
2019
;
8
(
3
):
297
303
.
34.
Corey
AL
,
Haase
JE
,
Azzouz
F
,
Monahan
PO
.
Social support and symptom distress in adolescents/young adults with cancer
.
J Pediatr Oncol Nurs
.
2008
;
25
(
5
):
275
84
.
35.
Murnane
A
,
Kiss
N
,
Fraser
SF
,
Lewin
J
.
Health-related quality of life, fatigue and health behaviours in Australian adolescent and young adult cancer survivors
.
Pediatr Blood Cancer
.
2021
;
68
(
10
):
e29243
.
36.
Nixon
AC
,
Wilkinson
TJ
,
Young
H
,
Taal
MW
,
Pendleton
N
,
Mitra
S
.
Symptom-burden in people living with frailty and chronic kidney disease
.
BMC Nephrol
.
2020
;
21
(
1
):
411
.
37.
Ren
Q
,
Shi
Q
,
Ma
T
,
Wang
J
,
Li
Q
,
Li
X
.
Quality of life, symptoms, and sleep quality of elderly with end-stage renal disease receiving conservative management: a systematic review
.
Health Qual Life Outcomes
.
2019
;
17
(
1
):
78
.
38.
Purtell
L
,
Sowa
PM
,
Berquier
I
,
Scuderi
C
,
Douglas
C
,
Taylor
B
.
The kidney supportive care programme: characteristics of patients referred to a new model of care
.
BMJ Support Palliat Care
.
2018
; bmjspcare-2018-001630.
39.
Huang
CW
,
Wee
PH
,
Low
LL
,
Koong
YL
,
Htay
H
,
Fan
Q
.
Prevalence and risk factors for elevated anxiety symptoms and anxiety disorders in chronic kidney disease: a systematic review and meta-analysis
.
Gen Hosp Psychiatry
.
2021
;
69
:
27
40
.
40.
Song
M
,
Ward
SE
,
Hladik
GA
,
Bridgman
JC
,
Gilet
CA
.
Depressive symptom severity, contributing factors, and self-management among chronic dialysis patients
.
Hemodial Int
.
2016
;
20
(
2
):
286
92
.
41.
Pereira
B
,
Fernandes
N
,
De Melo
NP
,
Abrita
R
,
Grincenkov
FR
,
Fernandes
N
.
Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers
.
Health Qual Life Outcomes
.
2017
;
15
(
1
):
74
.
42.
Jung
H
,
Tanaka
S
,
Iwamoto
Y
,
Yamasaki
M
,
Tanaka
R
.
Relationship between mobility-related activities of daily living and health-related quality of life among healthy older adults: a cross-sectional study using structural equation modeling
.
Gerontol Geriatr Med
.
2021
;
7
:
23337214211013166
.
43.
Hordon
L
.
Limited joint mobility and other musculoskeletal problems in diabetes
.
Diabetes Prim Care
.
2017
;
19
(
1
):
29
34
.
44.
Junqué Jiménez
A
,
Esteve Simó
V
,
Andreu Periz
L
,
Segura Ortí
E
.
The relationship between physical activity levels and functional capacity in patients with advanced chronic kidney disease
.
Clin Nurs Res
.
2021
;
30
(
3
):
360
8
.
45.
Tsai
Y
,
Chen
H
,
Hsiao
S
,
Chen
C
,
Lin
M
,
Chiu
Y
.
Association of physical activity with cardiovascular and renal outcomes and quality of life in chronic kidney disease
.
PLoS One
.
2017
;
12
(
8
):
e0183642
.
46.
Artzi-Medvedic
R
,
Kob
R
,
Fabbietti
P
,
Lattanzio
F
,
Corsonello
A
,
Corsonello
A
.
Impaired kidney function is associated with lower quality of life among community-dwelling older adults
.
BMC Geriatr
.
2020
;
20
(
1
):
1
10
.
47.
Oskoui
T
,
Pandya
R
,
Weiner
DE
,
Wong
JB
,
Koch-Weser
S
,
Ladin
K
.
Advance care planning among older adults with advanced non–dialysis-dependent CKD and their care partners: perceptions versus reality
.
Kidney Med
.
2020
;
2
(
2
):
116
24
.
48.
Saeed
F
,
Sardar
MA
,
Davison
SN
,
Murad
H
,
Duberstein
PR
,
Quill
TE
.
Patients’ perspectives on dialysis decision-making and end-of-life care
.
Clin Nephrol
.
2019
;
91
(
5
):
294
300
.
49.
Wachterman
MW
,
Lipsitz
SR
,
Lorenz
KA
,
Marcantonio
ER
,
Li
Z
,
Keating
NL
.
End-of-life experience of older adults dying of end-stage renal disease: a comparison with cancer
.
J Pain Symptom Manage
.
2017
;
54
(
6
):
789
97
.
50.
Bernacki
GM
,
McDermott
CL
,
Matlock
DD
,
O'Hare
AM
,
Brumback
L
,
Bansal
N
.
Advance care planning documentation and intensity of care at the end of life for adults with congestive heart failure, chronic kidney disease, and both illnesses
.
J Pain Symptom Manage
.
2022 Feb
63
2
e168
175
.
51.
Ducharlet
K
,
Philip
J
,
Kiburg
K
,
Gock
H
.
Renal supportive care, palliative care and end-of-life care: perceptions of similarities, differences and challenges across Australia and New Zealand
.
Nephrology
.
2021
;
26
(
1
):
15
22
.
52.
Kermel-Schiffman
I
,
Werner
P
.
Knowledge regarding advance care planning: a systematic review
.
Arch Gerontol Geriatr
.
2017
;
73
:
133
42
.
53.
Hole
B
,
Hemmelgarn
B
,
Brown
E
,
Brown
M
,
McCulloch
MI
,
Zuniga
C
.
Supportive care for end-stage kidney disease: an integral part of kidney services across a range of income settings around the world
.
Kidney Int Suppl
.
2020
;
10
(
1
):
e86
e94
.
54.
Murtagh
FEM
,
Burns
A
,
Moranne
O
,
Morton
RL
,
Naicker
S
.
Supportive care: comprehensive conservative care in end-stage kidney disease
.
Clin J Am Soc Nephrol
.
2016
;
11
(
10
):
1909
14
.
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