adherence in multiple sclerosis: neurologist s view...the definition “...the extent to which a...

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Jaume Sastre-Garriga Unitat de Neuroimmunologia Clínica Centre dEsclerosi Múltiple de Catalunya CEMCat Hospital Universitari Vall dHebron, Barcelona Adherence in multiple sclerosis: Neurologist s view

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Page 1: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Jaume Sastre-Garriga

Unitat de Neuroimmunologia Clínica

Centre d’Esclerosi Múltiple de Catalunya – CEMCat

Hospital Universitari Vall d’Hebron, Barcelona

Adherence in multiple sclerosis: Neurologist’s view

Page 2: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Adherence

http://www.instablogsimages.com/images/2008/02/26/global-warming-myth_65.jpg

Page 3: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The definition

“...the extent to which a person’s behaviour –

taking medication, following a diet, and/or

executing lifestyle changes – corresponds with

agreed recommendations from a healthcare

provider.” (OMS –WHO)

http://www.who.int/chp/knowledge/publications/adherence_report/en/print.html

Page 4: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The definition

“... Strong emphasis was placed on the need to

differentiate adherence from compliance.

The main difference is that adherence requires

the patient’s agreement to the

recommendations..”

(OMS –WHO)

http://www.who.int/chp/knowledge/publications/adherence_report/en/print.html

Page 5: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The definition

Downloaded from: http://alignmap.com/2008/10/01/you-say-compliance-i-say-adherence-who-cares/

Page 6: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The definition

Page 7: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Outline

Non-adherence to treatment in Multiple Sclerosis

1. The magnitude

2. Factors related with non-adherence

3. The consequences

4. Key points

Page 8: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Page 9: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Page 10: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

14% Relapsing Remitting MS

23% Secondary Progressive MS

Page 11: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Page 12: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Yeaw et al., J Manag Care Pharm 2009

Page 13: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Page 14: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Authors n* Follow-up Stopping**

Portaccio et al. 225 / -- 50mo (5%) / 45%

Río et al. 488 / 134 47mo 17% / (22%)

O’Rourke et al. 246 / 148 49mo 28% / --

Mohr et al. -- / 939 8.3mo 7.35% / --

Clerico et al. 162 / 31 -- 19%

Tremlett et al. 844 23mo (13%) / 33%

* Relapsing-Remitting / Secondary Progressive

** Stoppers / Stoppers plus switchers

Page 15: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

From: http://www.acpm.org/?MedAdherTT_ClinRef

Page 16: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Blaschke, Osterberg, Vrijens, Urquhart, Ann Rev Pharmacol Toxicol 2012

Page 17: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Devonshire et al., Eur J Neurol 2011

Page 18: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Devonshire et al., Eur J Neurol 2011

Page 19: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Adherence defined as

MPR≥80%

Page 20: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Fernandez et al., PLOS ONE 2012

The magnitude

Adherence: 79.2%

(never forgot to take an injection in the last four weeks)

Page 21: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

Page 22: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The magnitude

CONCLUSIONS

Up to 30% of patients discontinue Disease Modifying Drugs

This figure is lower in clinical trials and in patients with Relapsing Remitting Multiple Sclerosis compared to routine clinical practice and patients with Secondary Progressive Multiple Sclerosis

Discontinuation mostly occurs in the first two years, but lingers for at least to 8 years

In a further percentage of patients a switch to a different Disease Modifying Drug is needed

Page 23: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Factors related with non-adherence

Page 24: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Treatment discontinuation due to lack of efficacy may be prompted by the physician

This may actually not be considered as real lack of adherence

Physician-rated

lack of efficacy

Patient-perceived

lack of efficacy

Factors related with non-adherence

Page 25: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Factors related with non-adherence

Authors n* Follow-up Stopping** Reasons for stopping (% of n)

Lack of Efficacy Side effects Other

Portaccio et al. 225 / -- 50mo (5%) / 45% 28.9% 14.7% 2.2%

Río et al. 488 / 134 47mo 17% / (22%) 9% 2.7% 5.3%

O’Rourke et al. 246 / 148 49mo 28% / -- 13.8% 14.2% 0%

Mohr et al. -- / 939 8.3mo 7.35% / -- -- -- --

Clerico et al. 162 / 31 -- 19% 12% 3% 4%

Tremlett et al. 844 23mo (13%) / 33% 10% 17% 6%

* Relapsing-Remitting / Secondary Progressive

** Stoppers / Stoppers plus switchers

Page 26: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

BETTER ADHERENCE WAS ACHIEVED

If sites were…

• …more empathetic

• …instilling a sense of purpose in the patient

• …promoting less formal relationships

If sites paid attention to…

• …patients’ emotional status

• …patients’ expectations of trial participation

Factors related with non-adherence

Mohr et al., Mult Scler 1999

Page 27: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The consequences

Page 28: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The consequences

“To the extent that treatment response is related to the dose and schedule of a therapy, non-adherence reduces treatment benefits and can bias assessment of the efficacy of treatments” Haynes RB, Ackloo E, Sahota N, McDonald HP, Yao X. Interventions for enhancing medication adherence. Cochrane Database of Systematic Reviews 2008, Issue 2. Art. No.: CD000011. DOI: 10.1002/14651858.CD000011.pub3.

Page 29: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The consequences

“... Increasing the effectiveness of adherence

interventions may have a far greater impact on

the health of the population than any

improvement in specific medical treatments”..”

(Haynes RB. Interventions for helping patients to follow prescriptions for medications.

Cochrane Database of Systematic Reviews, 2001, Issue 1.)

http://www.who.int/chp/knowledge/publications/adherence_report/en/print.html

Page 30: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

The consequences

Page 31: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Key points

Page 32: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Manage expectations: efficacy

Authors n* Follow-up Stopping** Reasons for stopping (% of n)

Lack of Efficacy Side effects Other

Portaccio et al. 225 / -- 50mo (5%) / 45% 28.9% 14.7% 2.2%

Río et al. 488 / 134 47mo 17% / (22%) 9% 2.7% 5.3%

O’Rourke et al. 246 / 148 49mo 28% / -- 13.8% 14.2% 0%

Mohr et al. -- / 939 8.3mo 7.35% / -- -- -- --

Clerico et al. 162 / 31 -- 19% 12% 3% 4%

Tremlett et al. 844 23mo (13%) / 33% 10% 17% 6%

* Relapsing-Remitting / Secondary Progressive

** Stoppers / Stoppers plus switchers

Page 33: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

PREVENT MISPLACED EXPECTATIONS

Make sure patients know:

1. They may still suffer relapses

2. Disability will not improve

3. Symptoms will not improve

4. Side effects are not severe but frequent and unsettling

5. The best available way to manage side effects

Manage expectacions

Page 34: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

PREVENT MISPLACED EXPECTATIONS

Before educational sessions

Unrealistically optimistic expectations are common

• Regarding attack rate reduction - 57% of patients

• Regarding functional improvement - 34% of patients

Mohr et al., Mult Scler 1996

Manage expectations: efficacy

Page 35: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Manage side effects

Authors n* Follow-up Stopping** Reasons for stopping (% of n)

Lack of Efficacy Side effects Other

Portaccio et al. 225 / -- 50mo (5%) / 45% 28.9% 14.7% 2.2%

Río et al. 488 / 134 47mo 17% / (22%) 9% 2.7% 5.3%

O’Rourke et al. 246 / 148 49mo 28% / -- 13.8% 14.2% 0%

Mohr et al. -- / 939 8.3mo 7.35% / -- -- -- --

Clerico et al. 162 / 31 -- 19% 12% 3% 4%

Tremlett et al. 844 23mo (13%) / 33% 10% 17% 6%

* Relapsing-Remitting / Secondary Progressive

** Stoppers / Stoppers plus switchers

Page 36: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Manage side effects

Page 37: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Cohen BA. Int J Clin Pract 2007:1922-30

Co-medication to reduce flu-like symptoms

Auto-injection devices to make self-injection easier

New formulations of interferons

Emphasis on induction training by skilled nurses

Ongoing reinforcement of adherence

Manage side effects

Page 38: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Co-medication to reduce flu-like symptoms.

Manage side effects

Page 39: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

MS Nurse Team at Cemcat, Barcelona

Manage side effects

Page 40: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

TEAMWORK

Manage side effects and expectations

Clinical Neuroimmunology Unit

Neurorehabilitation Unit

Page 41: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. P M Rothwell, et al. BMJ 1997

Understanding patients needs

Page 42: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Respect for their choice

Page 43: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Respect for their choice

Page 44: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Take home

Page 45: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Some words from WHO

http://www.who.int/chp/knowledge/publications/adherence_report/en/print.html

Poor adherence to treatment of chronic diseases is a worldwide problem of striking magnitude

The impact of poor adherence grows as the burden of chronic disease grows worldwide

The consequences of poor adherence are poor health outcomes and increased health care costs

Improving adherence also enhances patients’ safety

Health systems must evolve to meet new challenges

Patients need to be supported, not blamed

Adherence is simultaneously influenced by several factors

Patient-tailored interventions are required

Adherence is a dynamic process that needs to be followed up

Health professionals need to be trained in adherence

Family, community and patients’ organizations: a key factor for success

A multidisciplinary approach towards adherence is needed

Page 46: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Many thanks to all of you for your kind attention

To all my colleagues at CEM-Cat

And specially to María Jesús Arévalo, Jordi Río & Xavier Montalban

Page 47: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

UNiC 2010

UNeR 2008

CARM 2010

Page 48: Adherence in multiple sclerosis: Neurologist s view...The definition “...the extent to which a person’s behaviour – taking medication, following a diet, and/or executing lifestyle

Jaume Sastre-Garriga

Unitat de Neuroimmunologia Clínica

Centre d’Esclerosi Múltiple de Catalunya – CEMCat

Hospital Universitari Vall d’Hebron, Barcelona

Adherence in multiple sclerosis: Neurologist’s view