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Transcript of The Real Life (La Vraie Vie) - CLL Advocates Network · The Real Life (La Vraie Vie) Survey 2013 By...
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
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
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%
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
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
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