The Real Life (La Vraie Vie) Survey 2013 By SILLC, sole CLL and MW patient advocate association in France

Transcription

1 The Real Life (La Vraie Vie) Survey 2013 By SILLC, sole CLL and MW patient advocate association in France

2 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

3 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

4 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%

5 Age Working & Sick Retired Working 50 <=35 <=40 <=45 <=50 <=55 <=60 <=65 <=70 <=75 <=80 <=85 <=90 <=95

6 Diagnosis trigger: 1. Check up 2. Symptoms 60% 50% 40% CLL 30% 20% MW 10% Occasional check up Routine check up Symptoms Family circle initiative

7 Symptoms: fatigue first

8 < 1mois 1 Mois 2 Mois 3 Mois 4 Mois 5 Mois 6 Mois 8 Mois 10 Mois 11 Mois 12 Mois 14 Mois 15 Mois 18 Mois 20 Mois 24 Mois 30 Mois 36 Mois 48 Mois Wait time for diagnosis after the first consult

9 Who tells the patient: mainly the haematologist

10 Summary: Symptoms and announcement % CLL Waldenström Symptoms of which Fatigue Specialized consultation before 6 months % CLL Waldenström Haematologist Second opinion 15 21

11 Opinion about the way the diagnosis has been made: mainly satisfactory 60% 50% 40% CLL 30% 20% W 10% Very satisfactory Satisfactory Barely satisfactory Unsatisfactory Others

12 By diagnosis announcement 50% 40% 30% Alone Accompanied

13 State of mind before announcement 350 worried (57%) 260 quiet or neutral (43 %)

14 Impact of the diagnosis announcement State of mind before and after the diagnosis

15 Impact on the accompanying person % Worried (33) Comforting (15) Surprised (12)

16 How haematologists explained the disease? Nature, medical analysis, evolution, treatments

17 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)

18 Stage of the desease: for CLL, more than 50% have not had treatment 50% 40% CLL W 30% 20% 10% No treatment Waiting Under treatment Remission > 6 months Remission > 2 years Remission > 5 years Relapse Relapse after new treatment

19 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

20 Co-morbidity 70% 50% 30% 10% CLL W

21 Whom did you tell? Family rather than (and before) friends and colleagues 90% 70% 50% Immidiately Shortly after 30% Long after Never 10% Spouse or Partner Children Family Friends Colleagues

22 Who is helping? Above all family and haematologist 50% 30% 10%

23 Life with CLL: fatigue most common complaint Important Not important

24 Life with Waldenström: fatigue most common complaint Important Not important

25 Types of fatigue 60% 50% 40% 30% 20% L CLL W 10% 0% No fatigue Lasting fatigue Waves of tiredness

26 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.

27 Expectations towards SILLC: information, support and lobbying Important Less imp. Little imp. Not important Don t know

28 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)

29 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 focused on : - the patient s journey - the treatments: effectiveness, side effects, compliance

30 To find out more about SILLC and the survey SILLC Website Thank you for your attention!