Post on 12-Sep-2020
Queensland University of Technology
CRICOS No. 00213J
How do we relieve uraemic symptoms?
Prof Ann Bonner PhD RNSchool of Nursing, Queensland University of Technology
Email: ann.bonner@qut.edu.au
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[What’s] always been a big thing for me is the doctor’s check-up. Oh yeah, all your bloods are good, your fluids, you’re doing wonderful, you’re taking your tablets, all that, so you must be really feeling well,
and you go “No, I feel like crap”.
One thing that doctors should say is it doesn’t matter what it says on the paper work—it’s easiest just to say how do you feel? How are things going with you? Bugger all the bloods; bugger all what fluid and that but how do you feel in yourself? And that’s when you get down to how a person is going.
~Patient 5
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What are symptoms?
• Symptoms may or may not be related specifically to a medical problem and may have a strong psychosocial element
• Signs are objective, observable, and mostly measurable
• Symptoms are not observable
– perceived and verified only by the person experiencing the event
– cannot be observed, perceived, or verified by other persons
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• Symptom experience - the patient’s perception and response to symptom occurrence
• Symptom occurrence
– Frequency (the number of times the event occurs within a given time frame)
– Duration (the persistence or continuance of the prevailing subjective happening)
– Severity (the amount and degree of discomfort) with which the symptom occurs
• Symptom distress - the degree or amount of physical and mental upset, anguish, or suffering experienced from the specific symptom
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♂
CKD: Symptoms and Signs
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Comparison of Symptom Burden
adapted from Murtagh et al 2010 and Teunissen et al 2007
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Why are symptoms important?
• Largely overlooked in routine renal care – focus on numbers (blood results, BP, etc) → “objectivity”
• Patient-reported → “subjectivity”
• Frequently identified by nurses
• Can be assessed (measured)
Patient-reported outcome measures (PROMs)
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CKD Symptom Burden
Almutary, H., Bonner, A., & Douglas, C. (2013).
Symptom burden in chronic kidney disease: A review
of recent literature. Journal of Renal Care, 39(3):140-
150.
• Most prevalent symptoms – fatigue, feeling drowsy, pain & pruritus
• Symptoms studied in isolation
• Focus - on a single dimension
• Missed severity and frequency
• Limited to the dialysis population
• Paucity of studies in CKD stage 4 & 5
• PROM – Dialysis Symptom Index
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How does symptom burden differ in people with advanced CKD who are non-dialysis or
currently receiving dialysis?
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Palliative care
Outcome Scale-
Symptoms – renal
(POS-S)
Chronic Kidney Disease
Symptom Burden Index
No. of
symptoms
17 + 3 free fields 32 + 3 free fields
Ideal
population
CKD stage 5 (RSC) - only CKD stage 4 & 5
Prevalence
Distress (0-4) (0-10)
Severity × (0-10)
Frequency × (0-10)
Benefits Simple
Quick
Easy to use
Clinical application
Comprehensive
Multidimensional
Clinical & research
applications
Different CKD populations
Limitations Tested only in RSC
Limited dimension Long
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Research
Aims1. Examine symptom burden in advanced CKD (stages 4 and 5)
2. Compare the symptom experience between those receiving dialysis or those who are non-dialysis
• Design: Cross-sectional
• Setting: 3 renal units
• Inclusion criteria• Adults (≥18 years)
• Diagnosed with CKD (eGFR <30 mls/min/m2)
• Cognitively capable to consent
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Sample n = 436
107
(24.5 %)
329
(75.5 %)
Non-dialysis Dialysis
Results
Stage 4 (69)
Stage 5 (38)
HD (287)
PD (42)
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Symptom dimensions and CKD
** p < 0.001
CKD
Mean (SD)
Prevalence Distress Severity Frequency
Stage 4 6.6 ± 5.45 20.35 ± 18.2 19.98 ± 19.4 25.24 ± 21.53
Stage 5 7.16 ± 5.7 23.06 ± 24.36 22.09 ± 24.43 27.46 ± 26.66
HD 15.16 ± 7.77** 72.24 ± 55.9** 70.39 ± 55.3** 73.5 ± 53.6**
PD 9.76 ± 4.26 41.18 ± 24.76 34.1 ± 20.77 34.18 ± 19.78
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Symptom Prevalence (%)
51.1
30.4
40.6
27.5
52.6
42.147.4
39.5
83.3
71.466.6
57.1
95.2
5054.8 52.4
0
10
20
30
40
50
60
70
80
90
100
Feeling tired or lack
of energy
Bone or joint pain Pruritus Decreased appetite
Stage 4 Stage 5 HD PD
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4.263.9
2.132.38
2.57
4.35
3.38
21.75
2.78
6.1 6.025.75
5.46 5.61
6.95
4.3
5.29
4.33
3.48
0
1
2
3
4
5
6
7
8
Feeling tired or
lack of energy
Bone or joint pain Feeling irritable Decreased
interest in sex
Pruritus
Stage 4 Stage 5 HD PD
Symptom Distress (mean, max = 10)
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Symptom Severity (mean, max = 10)
4.63
3.67
4.34
3.48
2.6
4
4.54.25
2.692.94
6.946.61
6.03 5.855.48
4
5
6.55
3.152.82
0
1
2
3
4
5
6
7
8
Decreased
interest in sex
Difficulty to
becoming
sexually aroused
Feeling tired or
lack of energy
Bone or joint
pain
Pruritus
Stage 4 Stage 5 HD PD
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Symptom Frequency (mean, max = 10)
0
1
2
3
4
5
6
7
8
Decreased
interest in
sex
Difficulty to
becoming
sexually
aroused
Feeling
tired or lack
of energy
Bone or
joint pain
Pruritus Trouble
falling
asleep
Worrying Depression Feeling
nervous
Stage 4 Stage 5 HD PD
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Patients seldom present with a single symptom—which may perhaps explain
why treating one symptom may not necessarily improve health-related quality
of life
Queensland University of Technology
CRICOS No. 00213J
Symptom Clusters
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Symptom Cluster
• Two or more symptoms that occur together, are stable and relatively independent of other clusters
• Symptoms in a cluster may or may not share the same aetiology (Kim et al., 2005)
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Why are symptom clusters important?
• Provide better method of assessment as it can assist with anticipating other symptoms within the cluster
• Assist in prioritising assessment and management by targeting the clusters that strongly predict patients’ outcomes
• To facilitate development of effective intervention strategies
• Improve patient outcomes (e.g. health-related quality of life)
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Evidence of Symptom Clusters
• The majority of studies have explored symptom clusters in oncology
• Research suggests that symptom clusters independently predict
– functional status
– quality of life
– mortality rate
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Cluster Core Symptoms
Fluid volume symptoms Cough
Shortness of breath
Chest pain
Light headedness or dizziness
Difficulty concentrating
Neuromuscular symptoms Muscle soreness
Numbness or tingling in feet
Sexual symptoms Decreased interest in sex
Difficulty becoming sexually aroused
Psychological symptoms Feeling anxious
Worrying
Feeling sad
Depression
Feeling nervous
Gastrointestinal symptoms Vomiting
Nausea
Pattern and structural cut-off > 0.50
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A
1. Fluid volume symptom cluster
2. Neuromuscular symptom cluster
3. Gastrointestinal symptom cluster
4. Sexual symptom cluster
5. Psychological symptom cluster
B
Fatigue
1
5
4 3
2
Restless legs
Sleep disturbance
1
CKD Symptom Clusters
Almutary et al. J Adv Nurs, 2016;72(10):2389-2400.
Queensland University of Technology
CRICOS No. 00213J
Symptom Theory
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Theory of Unpleasant Symptoms
Lenz, E. R., et a.. (1997). The
middle-range Theory of
Unpleasant Symptoms: an
update. Advances in Nursing
Science, 19(3), 14-27.
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Theory of Unpleasant Symptoms - CKD
Almutary et al. 2017. Towards a symptom cluster model in chronic
kidney disease: A structural equation approach. J Adv Nurs
DOI 10.1111/jan.13303
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Almutary H, Douglas C, Bonner A. Journal of Advanced Nursing, 2017;73:2450-2461.
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Are symptoms multidimensional? YES
Are there differences in symptom burden between CKD stage and treatment modality? YES
Do symptoms cluster (occur) together? YES
Are there consequences of symptom burden? YES
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ANZDATA Registry 40th Report (2018)
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Integrating Palliative Care into Teams
• Compelling evidence for early integration of PC into usual cancer, heart failure and respiratory care:– Better symptom control and HRQoL
– Less anxiety and depression
– Greater prognostic awareness
– Less futile care
– Less caregiver distress
– Equal or better survival
– Modulates expected escalation of health service use
1. Temel et al. NEJM, 2010;363:733-742
2. Bakitas et al. J Oncol Prac, 2017;13(9):557-566
3. Brannstrom et al. Euro J Heart Fail, 2014;16:1142-1151
4. Higginson et al. Lancet Resp Med, 2014;2:979-987
5. Gunjur Lancet Oncol, 2015;16(7): e321
Queensland University of Technology
CRICOS No. 00213J
Conservative Care or is it Supportive Care?
And who should receive it?
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Kidney* (or Renal) Supportive Care
For all CKD/ESKD patients (focus on frailty regardless of its cause and CKD stage)
• Includes people CKD stage 4 ESKD on dialysis and/or failing transplant
• Similar holistic person-centred care Shared decision making in a safe (‘ethos’) environment Coaching and support patient/family in self-discovery; dealing
with unfinished business in life Advance Care Planning Social and family support, etc… Emphasis on symptom-burden reduction and health-related
quality of life Planned withdrawal from dialysis
• Emphasis on symptom-burden reduction and health-related quality of life
• Planned withdrawal from dialysis
Queensland University of Technology
CRICOS No. 00213J
INTEGRATING RENAL
AND
PALLIATIVE CARE
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Metro North Hospital and Health Service
Kidney Health Service 9 sites
2 x hospitals 2 x satellite dialysis units Home training (PD & HD) 4 x Community outpatient clinics
Performed 1st dialysis in Australia (1955)
>3,000 CKD stages 3-5 2 Nurse Practitioners Nurse-led CKD model of care
Size = 4,157 km2
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Kidney Health Service
Palliative & Supportive Care Service
Kidney Supportive Care Program
Symptom management
Support for dialysis decision-making
Psychosocial support
Planning for end-of-life
Queensland University of Technology
CRICOS No. 00213J
Renal carePalliative
care
Kidney
supportive care
Patient choices Symptom management
PURPOSE
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Integrated KSCp
Clinical Nurse
Consultant
Palliative Care
Physician
Adv Trainee (Nephrology)
Social Worker
Renal Pharmacist
Patient
(& Carer)
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Dialysis
General nephrology service
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KSCp model of care
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Symptom Management Strategies
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Fatigue
• Debilitating and difficult to manage
Management:
– Optimise Hb 110-120 g/L
– Encourage simple activity
– Strategies to conserve energy
– Assess for depression
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Itch
• Mechanism unclear (dry skin, immune dysfunction, stimulation of C fibres)
Management:– 15 minute bath every day
– Moisturiser use
– Evening primrose oil (100-200mg bd)
– Gabapentin
– Thalidomide
– Naltrexone, antihistamines, ondansetron
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Restless legs syndrome
• Urge to move limbs when at rest
• Worst at night
Management:
– Clonazepam
– Pramipexole (dopamine agonist)
– Gabapentin
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Dyspnoea
• Common at end-of-life
• Can rapidly progress and cause severe distress
Management:– Non-pharmacological (calm reassurance, fan, open
window, sitting upright)
– Pharmacological (oxygen, opioids, sedatives, antisecretoryagents)
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Pain
• Chronic, non-malignant origin (e.g. osteoarthritis, peripheral neuropathy, cramps)
Management:
– Step 1: paracetamol 1g qid
– Step 2: tramadol 50-100mg bd
– Step 3: oxycodone, hydromorphone, fentanyl
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Nausea
• Mechanisms include uraemia, dehydration, gastroparesis, medications
Management:
– Haloperidol
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Diarrhoea
• Can be related to medications or autonomic nervous system
Management:
– Decrease caffeine
– Rationalise medications
– Bulking agents (metamucil)
– Anticholinergics (not codeine)
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Depression
• Present in ~25-30% of patients on HD
• Linked to poor quality of life
Management:
– Social work/psychology/psychiatry
– SSRIs, tricyclic antidepressants, SNRIs
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Sexual dysfunction
• ED, decreased libido, decreased fertility
• Often poorly recognised
Management:
– Sildenafil for ED
– Oral zinc (?)
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Questions
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All the patients of the Kidney Support Care program who participated in the research
Carol Douglas
Katrina Kramer Bernie Taylor
Isle Berquier
Louise Purtell
Helen Healy
Carla Scuderi
Ann Bonner Wendy Hoy
Marcin Sowa