The burden of non-motor symptoms in PD

Pablo Martinez-MartinMadrid, Spain

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Burden of disease – WHO criteria

Burden of disease conceptBurden of disease – concept• Burden of disease definition: The impact of premature

mortality and disability due to a given medical conditionB d f di i l l t d i di bilit dj t d • Burden of disease is calculated using disability-adjusted life years (DALY)

• DALY is a composite measure of premature mortality d di bilit i l t t f h lth lif l t d and disability, equivalent to years of healthy life lost due

to a given condition• DALY, thus, represent the sum of years of life lost (YLL)

d li d ith di bilit (YLD)and years lived with disability (YLD)• Discrepancies in study outcomes arise because either of

two methods of calculating disability weights can be emplo edemployed

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Burden of Disease (BoD) Related to Parkinson’s Disease in Spain in the

Burden of disease

Parkinson s Disease in Spain in the Year 2000

E. Cubo et al.

Burden of diseaseGeneva: World Health Organization 2001

Based on the WHO BoD study in 2000, PD DALY contributed: • 0.1% of the Global Burden of Disease (GBD) in the world• 0 6% in the European A subregion• 0.6% in the European A subregion• 0.5% of the GBD in Spain

In accordance with such data for the European A subregion, in Spain, PD represented approximately 1/200 of the GBD lower than the represented approximately 1/200 of the GBD, lower than the corresponding figures for other frequent ageing-related diseases such as dementia (8/200) and cerebrovascular disease (12/200)

To view abstract, click Abstracts link above 3

Non-motor symptoms of PD

Chaudhuri et al. Lancet Neurol 2006;5:235–45.

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NMS questionnaire – symptom prevalence

NMS questionnaireNMS questionnaire

Average NMS per patient = 10

(as per the NMS Quest; n = 525)

% indicates % patients with NMS

AAMemory: apathy/attention/memory

Martinez-Martin et al. Mov Disord 2007;22:1623–29.

% indicates % patients with NMS

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Non-Motor Symptom scale –

symptom severitycore

NMS scale

symptom severityN

MS

S T

ota

l sc

.01

NMS scaleHaehn & Yahr-based severity levels

.00

5

Den

sity

0

0 50 100 150 200 250

Total NMSS

Non-Motor Symptom Scale score = 56.5 ± 40.7

( 242)

Severity of NMS increased with increasing disease severity.

(n= 242)

Chaudhuri et al. Mov Disord 2007;22:1901–11.

y g ySleep-Fatigue was the NMSS domain with highest (standardized) severity score.

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Only symptoms which were

Patient reported

Only symptoms which were expressed by greater than 10% of patients are listed n = 123

symptomsA total of 90 different symptoms

were reported by patients. This list accounted for 1551

(88.3%) of the total symptom count

21 of these 32 symptoms (65.6%) were NMS

Lee et al. Parkinsonism Relat Disord 2007;13:284–9.

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Of the symptoms reported: • 948 (54.0%) were simply present• 526 (29.9%) were having a moderate affect on the day ( ) g y• 283 (16.1%) were having a dominating affect on the day

The 10 most common symptoms that PD patients reported were dominating their day

Frequency of symptoms

do a g day

7 of these 10 symptoms (70%) were NMS

Lee et al. Parkinsonism Relat Disord 2007;13:284–9.

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Non-motor fluctuations (NMF) in PD

• Most frequent NMF: anxiety (66%) drenching • Most frequent NMF: anxiety (66%), drenching sweats (64%), slowness of thinking (58%), fatigue(56%), and akathisia (54%)S h i d • Some symptoms such as anxiety or dyspnoea correlated with a greater level of disability

• Total number of NMF was found to be correlated with the motor disability

Suprisingly 28% of the patients stated that NMF Suprisingly, 28% of the patients stated that NMF involved a greater degree of disability than motor fluctuations

Witjas et al. Neurology 2002;59:408–13.

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The many faces of BoD

BoD may be understood as the whole range of physical, mental, and socioeconomic problems experienced by patients

Health-related quality of life (HRQoL) means the

and socioeconomic problems experienced by patients

Physical, mental and social well-being

q y ( Q )

perception and evaluation by patients of the

impact on their lives caused by the

disease and its consequences. Martínez-Martín, Personal communication, 1997

Definition of healthWHO, 1947

Basic components of the HRQoLWHO, 1947 the HRQoL

Martinez-Martin et al. J Neurol 1998;245(Suppl 1):39–41.

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Why HRQoL should be measured?

HRQ L i l t i h i di bli di th t l k HRQoL is relevant in chronic disabling diseases that lack a cure

– Main objective of caring is to improve patients’ quality of life (QoL)(Q )

• HRQoL provides unique information directly from patients

– This cannot be obtained by any other clinical method

• HRQoL is a complement to the clinical evaluation

– Focuses on aspects of interest to the patient

• HRQoL helps to understand discrepancies between doctor and • HRQoL helps to understand discrepancies between doctor and patient perceptions

– It is not equivalent to clinical measures

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Health related QoL

Based on a literature review and consultation with HRQoL experts, five clinicians and three patients 12 areas of HRQoL were identified as

• Physical function • Communication

clinicians and three patients, 12 areas of HRQoL were identified as particularly relevant to PD:

y• Mental health/emotional

well being• Self-image• Social function

• Sleep and rest• Eating• Role function• Energy/fatigue

Those highlighted represent the areas associated with non-motor symptoms.

• Health-related distress • Cognitive function

Energy/fatigue• Sexual function

Damiano et al. Qual Life Res 1999;8:235–43.

To view abstract, click Abstracts link above 12

Review MJ Forjaz B Frades P Martinez-MartinMJ Forjaz, B Frades, P Martinez-Martin

R i f 56 t di HRQ L i PD t f d l • Review of 56 studies on HRQoL in PD not focused on scale validation or effect of treatments

• Average sample size: 179 ± 174 patients (range: 21–902 g p p ( gpatients)

• Only summary indexes or total scores were considered

Forjaz et al. Rev Neurol (Accepted 2009).

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HRQoL determinants and associated factors

M t if t tiMotor manifestations• Motor impairment• Gait disorder• Dyskinesias and fluctuations• Dyskinesias and fluctuations• Axial manifestations• Tremor

NMS• Fatigue• Sleep disturbances• Pain • Sweating• Nausea• Orthostatism

Forjaz et al. Rev Neurol (Accepted 2009).

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Quality of life and depression in PD

Anette Schrag

While the association between PD and reduced HRQoL is greater in advanced disease stages there is no close relationship between

g

advanced disease stages, there is no close relationship between disease duration and impact on QoL, and the relationship between clinical rating scales and HRQoL scores is only moderate. On the other hand, the presence and severity of depression in PD t l l t ith HRQ L d b f t di h strongly correlates with HRQoL scores, and a number of studies have

reported depression as the main determinant of poor HRQoL scores

Schrag et al. J Neurol Sci 2006;248:151–7.

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What contributes to QoL in patients with PD?

Anette Schrag, Marjan Jahanshahi, Niall Quinng, j , Q

Conclusion— Depression, disability, postural instability, and cognitive impairment have the greatest influence on QoL in PD.

Schrag et al. J Neurol Neurosurg Psychiatry 2000;69:308–12.

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Question 1. On average, how many non-motor symptoms does each patient with PD experience?symptoms does each patient with PD experience?

A) 5A) 5

B) 10

C) 15C) 15

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Question 2. What proportion of the 10 most common symptoms that patients with PD report to dominate h dtheir day are non-motor symptoms?

A) 20%A) 20%

B) 50%

C) 70%C) 70%

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Question 3. What is the main factor reported to be associated with poor HRQoL in patients with PD?associated with poor HRQoL in patients with PD?

A) SleepinessA) Sleepiness

B) Depression

C) AnxietyC) Anxiety

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Copyright statements

Slide 4 ©2006 reproduced with permission from Slide 4 ©2006, reproduced with permission from Elsevier

Slide 5 ©2007, reproduced with permission from John Wil d S IWiley and Sons, Inc

Slide 7 ©2007, reproduced with permission from Elsevier

Slide 8 ©2007, reproduced with permission from Elsevier

Slide 16 ©2000, reproduced with permission from the © , p pBMJ Publishing Group

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