Palliative assessment tool for Parkinsons Disease Ed Richfield - - PowerPoint PPT Presentation

▶
palliative assessment tool for parkinson s disease
SMART_READER_LITE
LIVE PREVIEW

Palliative assessment tool for Parkinsons Disease Ed Richfield - - PowerPoint PPT Presentation

Sep 25, 2023 480 likes •733 views

Palliative assessment tool for Parkinsons Disease Ed Richfield Consultant Geriatrician North Bristol Trust Respond to need throughout disease trajectory Diagnosi s Symptom s Information Tension Care tension Post Bereavement

slide-1
SLIDE 1

Palliative assessment tool for Parkinson’s Disease

Ed Richfield Consultant Geriatrician North Bristol Trust

slide-2
SLIDE 2

Respond to need throughout disease trajectory

Diagnosi s

Symptom s Information Tension

Advanced Care Planning, Ethical issues, Management of intractable symptoms

Care tension

Diagnosis Death

Post Bereavement

slide-3
SLIDE 3

Identifying unmet need Prognosis: Necessary but not sufficient

Active medical interventions Palliative care

Death

McMahon and Thomas - “Palliative phase” of Parkinson’s disease

slide-4
SLIDE 4

Prognosis is necessary but not sufficient: The elephant in the room

  • Dementia

– 60% at 12 years (Butter et al. Neurology 2008; 70: 1017-22) – MCI twice as likely at diagnosis (Aarsland et al. Neurology 2009: 72; 1121-26)

  • Autonomy
  • Best interest >> ACP

(Richfield et al. [abstract]. Mov Disord 2012; 27 Suppl 1 :551)

slide-5
SLIDE 5

Delivering palliative in PD: The problem of numbers

Negotiating the Chronic : Palliative interface

POS-PD ESES-PD NAT- Parkinson’s

slide-6
SLIDE 6

Models of care: symbiosis

Chronic palliative interface

slide-7
SLIDE 7

3 Stages of Assessment for unmet palliative care need

  • 1 – Rapid Identification
  • Awareness
  • Tool – Fast / Bedside / Limited patient / clinician burden
  • 2- Triage
  • Appropriate response / Sustainable referral
  • 3- Comprehensive palliative assessment
  • Less time dependent
  • Tool – comprehensive symptom assessment
  • Score for comparison over time
slide-8
SLIDE 8

PACA

Lee et al. Parkinsonism Relat. Disord 2007; 13: 284–289

  • PACA - identify breadth of symptom load
  • Step 1: Self (patient) generated list of Sx
  • Step 2: Prompts from Sx check list
  • Step 3: Grade 1 (present) - 3 (dominating day)
slide-9
SLIDE 9

PACA

Advantages

  • Simplicity
  • Well established
  • Identify and grade Sx

Disadvantages

  • Developed in Gen Hospital population
  • No PD specific clinimetric testing
  • Time consuming?
slide-10
SLIDE 10

ESAS PD

Miyasaki et al. Parkinsonism Relat Disord 2012: 18; S6-9

  • Developed from ESAS with addition of 4

domains:

– constipation, – difficulty swallowing, – stiffness – confusion

  • 14 domains each scored 0-10
  • Max score 140
slide-11
SLIDE 11

ESAS PD

  • ESAS PD domains:
  • Pain

Tired

  • Nauseated

Depressed

  • Anxious

Drowsy

  • Appetite

Wellbeing

  • SOB

Other

  • Constipation

Swallowing

  • Stiffness

Confusion

slide-12
SLIDE 12

ESAS PD

Advantages

  • PD specific
  • Quantitative outcome
  • Demonstrated change in response to

interventions

  • Quick to use

Disadvantages

  • Content validity?
  • Clinimetric data for ESAS not ESAS-PD
slide-13
SLIDE 13

POS-S PD

Saleem et al. Palliat Med. 2013;27(8):722-31

  • Adaptation of POS-S
  • 20 domains
  • GI / Neuro-Psych / Motor / Bladder
  • Rate 0 (no effect) – 4 (overwhelming)
  • Max score 80
slide-14
SLIDE 14

POS-S PD

Advantages

  • Comprehensive
  • Quantitative outcome
  • Demonstrated change over time

Disadvantages

  • No change in response to treatment

data yet…

  • Administration burden
  • Clinimetric data in PD?
slide-15
SLIDE 15

Tackling the chronic / palliative interface. NAT: PD-c

  • Developed for cancer (Waller et al 2008)
  • Assess Patient / Carer / Family needs
  • Clinician administered
  • Minimal increase in consultation time (Waller et al 2012)
  • Adapted for other chronic conditions

– Heart failure (Waller et al 2013) – ILD (ongoing)

slide-16
SLIDE 16

Section 1 Red Flags Section 2 Patient wellbein g Section 3 Ability of carer to care for patient Section 4 Carer / family wellbeing Action s

slide-17
SLIDE 17

Triage: NAT: Parkinson’s disease

  • HCP completed
  • Normal consultation
  • No increased clinic time
slide-18
SLIDE 18

NAT: Parkinson’s

Advantages

  • Wide ranging

– Patient / carer / family

  • Clinician rated

– less patient burden

  • Rapid
  • Introduces triage of need

Disadvantages

  • No Quantitative outcome
  • Less effective for response to

treatment

  • Clinimetric qualities modest
  • Lack of peer review
slide-19
SLIDE 19

Issue specific tools in PD

  • Myriad available i.e:
  • Pain
  • Non-motor
  • Anxiety
  • Psycho-social
  • MDS website

https://www.movementdisorders.org/MDS/Education/Rating-Scales.htm

slide-20
SLIDE 20

The Model Service?

NAT:Parkinson’s disease ESAS-PD / POS- PD Symptom specific tools

slide-21
SLIDE 21
slide-22
SLIDE 22
slide-23
SLIDE 23

Construct Comparator tool Correlation

(Kendal’s tau b)

Reliability

(Weighted kappa)

Patient Physical PDQ (mobility)

0.51 0.39

Patient psych. PDQ (emotion)

0.55 0.33

Patient ADL MDSUPDRS - 2

0.62 0.27

Patient Spiritual PDQ (emotion)

0.42 0.21

Patient financial N/A

N/A 0.54

Patient health beliefs SCOPA PS

0.26 0.11

Carer Distress mCSI

0.63 0.62

Carer Physical MDSUPDRS - 2

0.48 0.48

Carer difficulty coping mCSI

0.46 0.48

Carer Inter-personal mCSI

0.32 0.29

Carer / family wellbeing mCSI

0.36 0.28

Carer / family grief mCSI

0.28 −0.01

NAT: Parkinson’s disease Clinimetric properties

slide-24
SLIDE 24

Discussion of results

  • Construct validity

– Majority Moderate or Good validity – Difficulty matching broad constructs – PD tools not designed for palliative constructs

  • Inter-rater reliability

– Majority moderate of fair – Low Kappa at high percentage agreement – Range of assessors likely lowered reliability – Learning effect - ?better in real life