How do we relieve uraemic symptoms?

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1 How do we relieve uraemic symptoms? Prof Ann Bonner PhD N School of Nursing, Queensland University of Technology ann.bonner@qut.edu.au Queensland University of Technology CICOS No J

2 [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 ly 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

3 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

4 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

5 CKD: Symptoms and Signs

6 Comparison of Symptom Burden adapted from Murtagh et al 2010 and Teunissen et al 2007

7 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 (POMs)

CKD Symptom Burden Almutary, H., Bonner, A., & Douglas, C. (2013). Symptom burden in chronic kidney disease: A review of recent literature. Journal of enal Care, 39(3):140-150.

8 CKD Symptom Burden Almutary, H., Bonner, A., & Douglas, C. (2013). Symptom burden in chronic kidney disease: A review of recent literature. Journal of enal Care, 39(3): 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 POM Dialysis Symptom Index

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

10 No. of symptoms Ideal population Palliative care Outcome Scale- Symptoms renal (POS-S) Limitations Tested only in SC a university for the Limited dimension Chronic Kidney Disease Symptom Burden Index free fields free fields CKD stage 5 (SC) - 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 Long

11 esearch Aims 1. 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 (egf <30 mls/min/m 2 ) Cognitively capable to consent

12 Sample n = 436 esults PD (42) Stage 4 (69) Non-dialysis Dialysis Stage 5 (38) HD (287) 107 (24.5 %) 329 (75.5 %)

13 Symptom dimensions and CKD CKD Mean (SD) Prevalence Distress Severity Frequency Stage ± ± ± ± Stage ± ± ± ± HD ± 7.77** ± 55.9** ± 55.3** 73.5 ± 53.6** PD 9.76 ± ± ± ± ** p < 0.001

14 Symptom Prevalence (%) Feeling tired or lack of energy Bone or joint pain Pruritus Decreased appetite Stage 4 Stage 5 HD PD

15 Symptom Distress (mean, max = 10) Feeling tired or lack of energy Bone or joint pain Feeling irritable Decreased interest in sex Stage 4 Stage 5 HD PD Pruritus

16 Symptom Severity (mean, max = 10) 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

17 Symptom Frequency (mean, max = 10) Decreased interest in sex Difficulty to becoming sexually aroused Feeling tired or lack of energy Bone or joint pain Pruritus Trouble falling asleep Stage 4 Stage 5 HD PD Worrying Depression Feeling nervous

19 Patients seldom present with a single symptom which may perhaps explain why treating one symptom may not necessarily improve health-related quality of life

20 Symptom Clusters CICOS No J Queensland University of Technology

21 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)

22 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)

23 Evidence of Symptom Clusters The majority of studies have explored symptom clusters in oncology esearch suggests that symptom clusters independently predict functional status quality of life mortality rate

25 Cluster Fluid volume symptoms Neuromuscular symptoms Sexual symptoms Psychological symptoms Gastrointestinal symptoms Pattern and structural cut-off > 0.50 Core Symptoms Cough Shortness of breath Chest pain Light headedness or dizziness Difficulty concentrating Muscle soreness Numbness or tingling in feet Decreased interest in sex Difficulty becoming sexually aroused Feeling anxious Worrying Feeling sad Depression Feeling nervous Vomiting Nausea

26 CKD Symptom Clusters A 1 B 5 Fatigue estless legs 2 1. Fluid volume symptom cluster 2. Neuromuscular symptom cluster 3. Gastrointestinal symptom cluster 4. Sexual symptom cluster 5. Psychological symptom cluster Sleep disturbance Almutary et al. J Adv Nurs, 2016;72(10):

27 Symptom Theory CICOS No J Queensland University of Technology

28 Theory of Unpleasant Symptoms Lenz, E.., et a.. (1997). The middle-range Theory of Unpleasant Symptoms: an update. Advances in Nursing Science, 19(3),

29 Theory of Unpleasant Symptoms - CKD Almutary et al Towards a symptom cluster model in chronic kidney disease: A structural equation approach. J Adv Nurs

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

31 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

32 ANZDATA egistry 40 th eport (2018)

33 Integrating Palliative Care into Teams Compelling evidence for early integration of PC into usual cancer, heart failure and respiratory care: Better symptom control and HQoL 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: Bakitas et al. J Oncol Prac, 2017;13(9): Brannstrom et al. Euro J Heart Fail, 2014;16: Higginson et al. Lancet esp Med, 2014;2: Gunjur Lancet Oncol, 2015;16(7): e321

34 Conservative Care or is it Supportive Care? And who should receive it? CICOS No J Queensland University of Technology

35 Kidney* (or enal) 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 a university withdrawal for the from dialysis

36 INTEGATING ENAL AND PALLIATIVE CAE CICOS No J Queensland University of Technology

Community outpatient clinics Performed 1 st dialysis in Australia (1955)

37 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 1 st dialysis in Australia (1955) >3,000 CKD stages Nurse Practitioners Nurse-led CKD model of care Size = 4,157 km 2

38 Symptom management Psychosocial support Support for dialysis decision-making Planning for end-of-life Kidney Health Service Kidney Supportive Care Program Palliative & Supportive Care Service

39 PUPOSE enal care Kidney supportive care Palliative care Queensland University of Technology Patient choices Symptom management CICOS No J

40 Integrated KSCp Clinical Nurse Consultant enal Pharmacist Patient (& Carer) Palliative Care Physician Social Worker Adv Trainee (Nephrology)

41 General nephrology service Dialysis

42 KSCp model of care

43 Symptom Management Strategies

44 Fatigue Debilitating and difficult to manage Management: Optimise Hb g/l Encourage simple activity Strategies to conserve energy Assess for depression

45 Itch Mechanism unclear (dry skin, immune dysfunction, stimulation of C fibres) Management: 15 minute bath every day Moisturiser use Evening primrose oil ( mg bd) Gabapentin Thalidomide Naltrexone, antihistamines, ondansetron

46 estless legs syndrome Urge to move limbs when at rest Worst at night Management: Clonazepam Pramipexole (dopamine agonist) Gabapentin

47 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, antisecretory agents)

48 Pain Chronic, non-malignant origin (e.g. osteoarthritis, peripheral neuropathy, cramps) Management: Step 1: paracetamol 1g qid Step 2: tramadol mg bd Step 3: oxycodone, hydromorphone, fentanyl

49 Nausea Mechanisms include uraemia, dehydration, gastroparesis, medications Management: Haloperidol

50 Diarrhoea Can be related to medications or autonomic nervous system Management: Decrease caffeine ationalise medications Bulking agents (metamucil) Anticholinergics (not codeine)

51 Depression Present in ~25-30% of patients on HD Linked to poor quality of life Management: Social work/psychology/psychiatry SSIs, tricyclic antidepressants, SNIs

52 Sexual dysfunction ED, decreased libido, decreased fertility Often poorly recognised Management: Sildenafil for ED Oral zinc (?)

53 Questions

54 Carol Douglas Isle Berquier Helen Healy Ann Bonner Wendy Hoy Katrina Kramer Carla Scuderi Bernie Taylor Louise Purtell Marcin Sowa All the patients of the Kidney Support Care program who participated in the research

Regional Renal Training

Regional Renal Training Palliative and End of Life Care Dr Clare Kendall North Bristol NHS Trust Advanced Kidney Disease Dialysis/Transplant Conservative Management Deteriorating despite dialysis/failing