The Real Life (La Vraie Vie)

Survey 2013

By SILLC, sole CLL and MW patient advocate association in France

Purpose

• What is not measured has very little

chance for improvement

• What about the patient’s journey and

feelings related to his or her disease ?

• Key elements:

– Measurement

– Analyse

– Adaptation

Action

• In 2013, first survey ever, focused on

patients with CLL (and Waldenström’s

disease) in France

• 4000 questionnaires (with 20 questions)

distributed to patients, in close cooperation

with haematologists

• 1000 answers (25% ratio) : a real success

Who answered ?

Desease:

− CLL: 830

− Waldenström : 134

CLL (87%) Waldenström (13%)

Age (median) 67 years 68 years

Male (%) 62% 59%

Married (%) 81% 78%

Country people 28% 23%

Retired 76% 80%

Highly educated 28% 46%

Age

Retired

Working

200

150

100

50

<=35 <=40 <=45 <=50 <=55 <=60 <=65 <=70 <=75 <=80 <=85 <=90 <=95

Working &

Sick

Diagnosis trigger:

1. Check up 2. Symptoms

60%

50%

40%

30%

20%

10%

CLL

MW

Occasional check up

Routine check up

Symptoms Family circle

initiative

Symptoms: fatigue first

Wait time for diagnosis…

5 0 0

4 5 0

4 0 0

3 5 0

3 0 0

2 5 0

2 0 0

1 5 0

1 0 0

50

0

… after the first consult

< 1m

ois

1 Mois

2 Mois

3 Mois

4 Mois

5 Mois

6 M

ois

8 M

ois

10 M

ois

11 M

ois

12 M

ois

14 M

ois

15 M

ois

18 M

ois

20 M

ois

24 M

ois

30 M

ois

36 M

ois

48 M

ois

Who tells the patient: mainly the haematologist

Summary: Symptoms and announcement

% CLL Waldenström

Symptoms 49 73

of which Fatigue 37 53

% CLL Waldenström

Specialized consultation before 6 months

81 78

Haematologist 55 63

Second opinion 15 21

Opinion about the way the diagnosis has been

made: mainly satisfactory

CLL

W

Very

satisfactory Satisfactory Barely

satisfactory

Unsatisfactory Others

10%

20%

30%

40%

50%

60%

By diagnosis announcement

Alone Accompanied

50%

40%

30%

State of mind before announcement

260 quiet or neutral

(43 %)

350 worried

(57%)

Impact of the diagnosis announcement

State of mind before and after the diagnosis

Impact on the accompanying person

%

Worried (33)

Comforting (15)

Surprised (12)

How haematologists explained the disease ?

Nature, medical analysis, evolution, treatments

Understanding the disease

− between 1/4 and 1/3 of the patients tell they need more than one consultation to understand their desease

− CLL : 65 % of the patients understood quickly (W : 50%)

− Almost 10% of the W patients still don’t understand their desease

− ¾ of the patients are seeking information (80% via internet and

25% by the general practitioner)

Stage of the desease: for CLL, more than 50%

have not had treatment …

No

treatment Waiting

Under

treatment

Remission

> 6

months

Remission

> 2 years

Remission

> 5 years

Relapse Relapse after

new treatment

CLL W

10%

20%

30%

40%

50%

Clinical trial

− 36% (CLL) / 44% (W) of the patients know what clinical trial means

− 43% (CLL) / 18% (W) of the treated patients were proposed a clinical trial

− 83% (CLL) / 75% (W) did accept the clinical trial when proposed

Co-morbidity

CLL W

10%

30%

50%

70%

Whom did you tell? Family rather than (and

before) friends and colleagues

Immidiately

Shortly after

Long after

Never

10%

30%

50%

70%

90%

Spouse

or

Partner

Children

Family

Friends

Colleagues

Who is helping ? Above all family and

haematologist

10%

30%

50%

Life with CLL: fatigue most common complaint

Important

Not

important

Life with Waldenström: fatigue most common

complaint…

Not important

Important

Types of fatigue

60%

50%

40%

30%

20%

10%

0%

L

No fatigue Lasting

fatigue

Waves of

tiredness

CLL

W

Major impacts of the disease

−Various areas affected;

−Family, social life, business activities, sexual life, personal image;

−Only 30% of the patients actually inform thier general practitioner;

−Fatigue is the main concern.

Expectations towards SILLC: information,

support and lobbying

Important

Less imp.

Little imp.

Not important

Don’t know

Main lessons

- Patients need information and support

- Haematologists play a key role

- Patients need to b supported

throughout journey

- Patients advocates are welcome

- Life is deeply affected by the disease

- Fatigue is the main concern (this has

been revealed by the survey)

What comes next ?

- Try and get international comparisons

SILLC is at the disposal of its peer associations for

methodological support

- Launch a new survey in 2017…

- …focused on :

- the patient’s journey

- the treatments: effectiveness, side effects,

compliance

To find out more about SILLC and the survey

SILLC Website www.sillc-asso.org

Thank you for your attention !