how do we relieve uraemic symptoms? · 2018. 10. 24. · neuromuscular symptoms muscle soreness...

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: [email protected]

a university for the worldrealR

[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


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


• 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


♂

CKD: Symptoms and Signs


Comparison of Symptom Burden

adapted from Murtagh et al 2010 and Teunissen et al 2007


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)


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


How does symptom burden differ in people with advanced CKD who are non-dialysis or

currently receiving dialysis?


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


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


Sample n = 436

107

(24.5 %)

329

(75.5 %)

Non-dialysis Dialysis

Results

Stage 4 (69)

Stage 5 (38)

HD (287)

PD (42)


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


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


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


Symptom Distress (mean, max = 10)


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



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



Patients seldom present with a single symptom—which may perhaps explain

why treating one symptom may not necessarily improve health-related quality

of life


CRICOS No. 00213J

Symptom Clusters


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)


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)


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


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


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.


CRICOS No. 00213J

Symptom Theory


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.


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


Almutary H, Douglas C, Bonner A. Journal of Advanced Nursing, 2017;73:2450-2461.


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


ANZDATA Registry 40th Report (2018)


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


CRICOS No. 00213J

Conservative Care or is it Supportive Care?

And who should receive it?


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


CRICOS No. 00213J

INTEGRATING RENAL

AND

PALLIATIVE CARE


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


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


CRICOS No. 00213J

Renal carePalliative

care

Kidney

supportive care

Patient choices Symptom management

PURPOSE


Integrated KSCp

Clinical Nurse

Consultant

Palliative Care

Physician

Adv Trainee (Nephrology)

Social Worker

Renal Pharmacist

Patient

(& Carer)


Dialysis

General nephrology service


KSCp model of care


Symptom Management Strategies


Fatigue

• Debilitating and difficult to manage

Management:

– Optimise Hb 110-120 g/L

– Encourage simple activity

– Strategies to conserve energy

– Assess for depression


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


Restless legs syndrome

• Urge to move limbs when at rest

• Worst at night

Management:

– Clonazepam

– Pramipexole (dopamine agonist)

– Gabapentin


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)


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


Nausea

• Mechanisms include uraemia, dehydration, gastroparesis, medications

Management:

– Haloperidol


Diarrhoea

• Can be related to medications or autonomic nervous system

Management:

– Decrease caffeine

– Rationalise medications

– Bulking agents (metamucil)

– Anticholinergics (not codeine)


Depression

• Present in ~25-30% of patients on HD

• Linked to poor quality of life

Management:

– Social work/psychology/psychiatry

– SSRIs, tricyclic antidepressants, SNRIs


Sexual dysfunction

• ED, decreased libido, decreased fertility

• Often poorly recognised

Management:

– Sildenafil for ED

– Oral zinc (?)


Questions


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

how do we relieve uraemic symptoms? · 2018. 10. 24. · neuromuscular symptoms muscle soreness...

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