sophia basis powerpoint - als centrum · of patients with an niv indication within the following...

Basis powerpointpresentaties

In the Netherlands, ALS patients are seen by a multidisciplinary ALS

care teams. Every three months, patients are invited for a consultation

to monitor their disease progression, in particular their respiratory

functions and complaints of hypoventilation. When it is indicated, they

are referred to a Home Ventilatory Services clinic, where their

respiratory function is monitored more closely. Criteria are a pCO2

larger than 45 millimeter of mercury, FVC lower than 70%predictive

value, symptoms of nocturnal hypercapnia, (such as morning headache,

dyspnoea or orthopnea) or signs of increased breathing activity. At the

first assessment at the HVS, the capillary pCO2 is measured and the

patients are given advice about their treatment options: Non-invasive

ventilation, Invasive ventilation or palliative comfort care. Once again,

the patient is monitored every three months and when respiratory

failure occurs, the patient will receive the ventilatory support.

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There are four HVS clinics in the Netherlands: Utrecht, Rotterdam,

Maastricht and Groningen. Patients of the Radboud UMC are mostly

referred to Utrecht.

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Ideally, patients are referred to the HVS clinic before respiratory failure

occurs. Therefore, they can make a considered choice about their

treatment options. Unfortunately, a recent observational study of

Raaphorst et al. showed that 30% of the ALS patients are referred to

the HVS after already develloping respiratory failure, which means

daytime hypercapnia or urge start of NIV. The referral is mostly based

on the criterion FVC lower than 70%. This causes multiple problems:

-Patients received ventilatory support without the chance to consider

this decision

-An urgent start of NIV was needed, which means starting the

ventilatory support within 48 hours

-16% had an ICU admission

5

Clearly, improvement of the palliative care in ALS is needed.

The more intensive use of other measures could be a solution. At the

radboud, for the past 10 years, the physical therapist Jessica has

measured lung function parameters such as FVC, PCF, MIP, MEP and

SNIP. We hypothesized that these measures would better predict the

need for ventilation in the following three months. This study aimed to

map serial data of the five respiratory tests before receiving a NIV

indication at the HVS, in order to detect the test that best predicts the

need for NIV in the following three months.

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Therefore, data of the trimonthly consultation at the Radboud umc and

Home ventilation services were retrieved and the measurements of the

five respiratory tests were analysed.

As you can see, 78 Patients from Radboud UMC fulfilled our criteria.

52 had multiple measurements at the Radboud, before referred to the

HVS. Form the other 53 patients, data were retrieved at the HVS in

Utrecht. In total, 110 patients were included in the study, of whom 87

received an NIV indication.

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The data were assessed by multiple analysis.

First we evaluated the decline of the five tests by a time-curve of all

patients with two or more consecutive measurements

Then, we looked at the two groups of Radboud patients only, stratified

by NIV indication at the first HVS visit

As a starting point for further research, we determined cut-off values at

a value where 85% of the patients received an NIV indication three

months later.

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Then we compared the two groups. There were 57 patients with

measurements at the radboud, who were divided into a ‘no NIV’ group

of 35, compared to 22 in the ‘NIV’ group. The analysis shows that FVC

does not differ between the two groups. Consistent with other previous

studies, we may once again conclude that FVC is not an ideal test for a

referral indication.

As for the other tests, the PCF significantly discriminates No NIV

patients from NIV patients.

Also, the difference of 12% predicitive value of SNIP is remarkably

high, but not statistically significant, probably due to power issues.

10

Our conclusion: although the FVC is the most frequently used

respiratory function test to monitor ALS patients in the Netherlands,

current study shows a restricted value in determining respiratory

insufficiency timely.

The PCF and SNIP show promosing results and should be further

investigated.

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To determine optimal cut-off values as starting point for further

research, the five respiratory tests were plotted the cumulative percent of patients with an NIV indication within the following three months .

We calculated the cut off values were 85% of the patients are referred

to an HVS in time, which means three months before they receive NIV.

This leaves 15% with untimely referral, which is a reduction by half

compared to the 37% we found in our previous study.

An example of the plot of the PCF is displayed on the screen. The

lower the value is, the higher the chance become to receive a NIV

indication. As for PCF, at a value of 386, 85% of the patient will be

referred in time.

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These cut-off values could be used to select patient for additional

diagnostics, such as a transcutaneous carbon dioxided monitor. This a

non-invasive method of measuring arterial carbon dioxide levels. This

gives a simple and efficient screening for respiratory failure in home

setting and may detect early nocturnal hypercapnia.

Also, ultrasonography of the diafragma is a possible additional

assessment, which evaluates the thickness of the diaphragm. It gives an

indication of the strength of the diafragmic muscle.

13

That brings us to the end of our presentation. Thank you for listening.

I’d be glad to answer any questions you may have.

14

Ervaring in het doen en interpreteren van spirometrie.

Scholingen: focusgroep richtlijn fysiotherapie, CTB scholing

airstacken, Npi Airway clearance technieken, informatieavond met

CTB, werkgroep FT bij ALS

Intern: scholing fysiotherapeuten en artsen die betrokken zijn bij

andere doelgroepen (NMA, orthopedie, CVA, critical illness)

Mantelzorg: airstacken voor betrokkenen, verdacht zijn op symptomen

1e lijn-en thuiszorg: scholen in airstacken en evt manuele compressie

Landelijke scholing: Spirometrie en airstacken bij ALS, ALS-centrum


Hoe vaak?

Wat zegt de richtlijn?

Verschillende periodieken afhankelijk van beloop

Sinds kort geïntroduceerde meetcaroussel

Daarnaast variabele periodieken

Hoe lang?

Afhankelijk van FT/medisch handelen kun je nog iets in je

behandelstrategie? Zijn alle mogelijkheden besproken? PEG/PRG-

plaatsing? Wil de patiënt het nog?

Onderzoek: verzamelen data

Heeft het CTB de patiënt in beeld?


FVC: Sufficiëntie van de longen; indicatie voor fysiotherapeutisch

handelen; CTB

FEV1: Aandacht voor COPD (Tiffenau index); invloed op handelen

PCF: hoestkracht; indicatie voor fysiotherapeutisch handelen; CTB

MIP: om IMT te indiceren

Gezien het beperkte bewijs voor IMT training bij ALS, doen we niet

standaard de MIP.

Indien er motivatie is vanuit patiënt om te trainen en de

beweegmogelijkheden te beperkt zijn nemen we de MIP af om IMT te

indiceren en evt in te stellen

MEP: wij denken dat het uitvoeren van de MEP naast de PCF geen

duidelijke meerwaarde heeft voor ons fysiotherapeutisch handelen

SNIP: Tot nu toe blijkt de SNIP voor ons niet makkelijk bruikbaar. Wij


hebben ermee geoefend en de uitkomsten waren niet betrouwbaar. Mogelijk is de

uitkomst afhankelijk van de “neus” van de patiënt?


Doornemen van de informatie bij de verschillende metingen.


MIP: om IMT te indiceren

Gezien het beperkte bewijs voor IMT training bij ALS, doen we niet

standaard de MIP.

Indien er motivatie is vanuit patiënt om te trainen en de

beweegmogelijkheden te beperkt zijn nemen we de MIP af om IMT te

indiceren en evt in te stellen

MEP: wij denken dat het uitvoeren van de MEP naast de PCF geen

duidelijke meerwaarde heeft voor ons fysiotherapeutisch handelen, al

zegt de richtlijn wel dat de meting als geheel betrouwbaarder wordt als

beide testen afgenomen worden.

SNIP: volgens de literatuur zou de SNIP een betrouwbaarder middel

moeten zijn om de achteruitgang van de respiratoire functie in kaart te

brengen dan de FVC. In onze praktijk blijkt de SNIP niet makkelijk

bruikbaar. Wij hebben ermee geoefend en de uitkomsten waren niet

betrouwbaar. Mogelijk is de uitkomst afhankelijk van de “neus” van de

patiënt.


sophia basis powerpoint - als centrum · of patients with an niv indication within the following...

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