A challenge for AFH Bruxelles Thomas Sanni on behalf of the THE3P - - PowerPoint PPT Presentation

Patients with mild haemophilia :

A challenge for AFH

Half of the haemophiliac population and yet a quasi absence of educational guidance

Bruxelles Thomas Sannié on behalf of the THE3P team and with the help of Lars Lehrmann from the Danish Hamophilia Society EHC Round Table, November 30 2015

Haemophilia

• A rare genetic disorder characterised by bleeding due to a deficiency in clotting

factor VIII or IX

• Affects mainly boys but there are also a few rare cases of girls affected
• The level of factor VIII or IX determines, in principle, the degree of the bleeding

disorder and patient care

< 1 % Severe Haemophilia

• Spontaneous or

frequent bleeds

• self infusion
• Educational program
• ffers(patients and family)

developed by HTC’s and AFH chapters 2167 patients that is 32,85%

1 à 5 % moderate haemophilia

• Bleeds occurring

during traumas or surgery

• Spontaneous rare

bleeding 1123 patients that is 17,02 %

6 to 40 % Mild haemophilia

• Bleeding in case
• f traumas or

surgery

• No spontaneous

bleeds

• Indication fact coag rare
• Desmopressin and first aid

haemostatics

• Educational programs

almost don’t exist

3305 patients that is 50,11 % (mild haemophiia women ++) Source FranceCoag Nov.2015

Mild haemophilia: absent from educational programmes

• Why?

– A forgotten group? – Little use of clotting factors? – Few educational needs expressed by patients? – Educational offers unsuited for these patients? – Low knowledge of who to contact with problems regarding haemophilia?

• However, AFH together with health professionals note that there are

needs to which they must respond:

• To respond to these questions :

– The interdisciplinary group THE3P* has tried to identify the educational needs of people living with mild haemophilia (patients and family)

*Therapeutic Education Patients, Parents and Professionals composed of the community of

healthcares from the various branches (learned societies Cometh, Fidel’hem, Grikh, Permedes), and the patients and families community

• 1. Little qualitative research published
• Individual interviews with 18 young mild

haemophiliacs (aged 17-31) (2012)* :

– Lack of awareness of the % of their deficient factor – Reluctance to acknowledge their haemophilia – Wait and see attitude when hemorrhagic accidents

• ccur

– More confidence in their personal experimentation than in the advice/information provided by the carers – Healthcare professionals seen as “overdoing it”

*Nilson J et al. A qualitative study identifying the knowledge, attitudes and behaviours of young men with mild haemophilia. Haemophilia 2012 ; 18 : e120-e145.

• 1. A Danish quantitative research published rapport
• Methodology:

– Three Quality of Life (QoL) studies have been conducted with questionaire in 1988 (n=135), 2001 (n=164) and 2012 (n=172). – The target group was haemophiliacs in all ages with moderate or mild haemophilia A, B or von Willebrands disease type 3.

*Rapport published by The Danish Haemophilia Society 2013 (only in Danish at the moment): http://www.bloderforeningen.dk/default.asp?MenuID=1129

• 1. A Danish quantitative research published

rapport (2)

• The study show that around 33% of the

haemophiliacs encounter problems getting the right treatment outside opening hours, at the two Danish haemophilia centres.

• Some of these problems are due to not having

the right knowledge of who to contact, and second not being able to self medicate, which is mostly problematic for moderate bleeders because they are not used to self medicate and do not have regular contact with the haemophilia centres.

• 3. Survey carried out under the aegis of the

THE3P interdisciplinary group

• Methodology :

– 3 focus groups (FG) with patients and families living with mild haemophilia (n = 22) 1 of whom is also a healthcare professional (n = 11) – Recruiting of patients and families via regional AFH branches and HTCs No criteria for exclusion of patients and families – No particular grouping in the various groups – 1 moderator (AFH Educationnal project leader) and 1

• bserver (resource patient)

FG composition location FG I FG II FG III

11 healthcare providers + 1 parent + 2 patients (THE3P group)

5 adults patients, 1 parent, 1 sister adult and carrier 3 adults, 4 parents, 3 teenagers, 1 child Paris Paris Bordeaux

Theme

Questions (and follow up questions)

Patients’ views

• n mild

haemophilia

How did you react when you learned that you had mild haemophilia?

Do you feel as a person with a disease ?

Knowledge

What do you know about mild haemophilia? In your opinion, what is it due to? Can there be complications? What do you know about treatments? How do you keep informed? Do you feel sufficiently informed?

• concerning transmission in your family? concerning complications? concerning

treatments?

Experience

• f the

disorder

As a result of mild haemophilia, has anything changed in your life? If so, what? What is your attitude towards telling people you have mild haemophilia or keeping it to yourself? How is information passed on in your family concerning the hereditary risk?

Expectations Now after your experience, what would you like to know a little bit more about that would

be useful in your daily life ? What advice would you give to a patient who has just learned he has mild haemophilia? In retrospect, what are your expectations concerning health professional in general? In your opinion, what would help you to follow the advice of health professionals? We plan to set up some training on mild haemophilia : what it is, what the treatment is, what should be done in case of a knock or a bang, transmission in the family, information to pass on … we would like to know what you think about this. What would be the advantage

• f an educational programme over the various sources of information at your disposal?

Educational program

How do you imagine the sessions? individual, in a group ? where? how long ?

Guide for interviewing the focus groups

3 .Results

• Patients and families describe a paradox :
• neglect and playing down the disorder on the one hand and the

difficulties of living with it on the other hand

• Communication with healthcare professionals is usually not very
• r not at all appropriate to their situation
• Healthcare professionals express difficulties in finding the

appropriate terms, probably linked to their wish to both reassure patients and to warn them about the risks

3 .Results (2)

• Patients and families describe a paradox :
• Even if patients and families acknowledge they are sufficiently

informed about the disorder, they feel misunderstood and would like healthcare professionals to take into account their own experience as a patient of mild haemophilia, more empathy, and the possibility of sharing with the professionals an a priori assessment of risk situations and an analysis afterwards of incidents already experienced

• In an emergency, they point out their limits and dread

underestimation by emergency professionals

• 4. Results in terms of needs analysis, educational and skills needs
• From a needs analysis by the 3 Focus Groups the GT

THE3P defined the educational needs and suggested the associated skills. The result was 4 main themes :

• Disorders and patient care (follow up)
• Experience of the disorder : feelings relating to the

disorder, peer support, PPR support

• Relationship with healthcare professionals :

Haemophilia Treatment Centres, emergency professionals, general practitioners

• Emotional, social and professional life : information from

third parties, professionals, physical and sporting activities, practical everyday life and rights

• 4. Results: 2 examples in terms of educational needs and suggested skills
• Educational needs for

EXPERIENCE OF THE DISORDER (subjective experience of the disorder)

• to be understood in the duality of being haemophiliac (I

am normal/I am not normal - I am symptomatic/I am asymptomatic)

• to receive individualised adapted responses
• to construct personal views (adolescent, young adult) –

be accepted in various stages of adaptation to mild haemophilia

• to be guided (at the right time) through the various

phases of the disorder (silent and active)

• to be guided in spite of the weak expression of mild

haemophilia

• to get individualised answers to a specific expression of

haemophilia

• to have the guilt lifted in relation to the word « disease »

when it is seen as derogative

• to get explanations on the specifics of the « mild » aspect
• f haemophilia
• to have the choice between “knowing” or “not knowing”

respected

• to widen knowledge through multiple sources

(healthcare professionals, family, peers, internet etc.)

• Associated skills
• Expressing views on

the disorder

• Expressing experience

(positive, negative or neutral) felt at the time

• f the diagnosis and

certain bleeding episodes

• Identifying the

possibilities of guidance (including exchanges with peers)

• 4. Results: 2 examples in terms of educational needs and

suggested skills (2)

• Educational needs for

Relationship with healthcare professionals

• to receive consistent and coherent (even if

different) messages from the health professionals

• to be able to experiment personally – the

right to make a mistake

• not to be lectured
• to be taken seriously
• to be recognised as having knowledge (as a

« knower ») by the healthcare professionals whomever they are (HTCs, emergency professionals, general practitioners)

• to trust personal healthcare professionals
• to understand that the healthcare

professional also has feelings (ex : fear)

• to know how to use new technologies (ex :

Smartphone) to explain the disorder and to understand it

• Associated skills
• to assert one’s rights and one’s

position with the healthcare professionals

• to highlight with the healthcare

professionals knowledge acquired during personal experiments

• to justify and explain personal

choices

• to take into account the feelings of

the healthcare professionals

• to use the technologies at one’s

disposal (ex : Smartphone, etc.) to communicate with the healthcare professionals concerning mild haemophilia

• 5. Conclusions
• These results confirm a real educational need for a group

that the term « mild » has up to now been played down

• Concerning the format, it should be adapted to a group

that infrequently consults healthcare professionals

• Avenues of digital learning solutions to reinforce the

educational workshops for people with mild haemophilia were projected and…

– AFH and the THE3P have just won the bid after a call of project from the MOH to develop a MOOC dedicated to patient with mild haemophilia : it is 92.000 € project with French and English language (to be seen in october 2016).

Merci, thanks, obrigado, danke, multumesc, благодаря, kiitos, спасибо, gracias, dankjewel, aitäh ! And to the THE3P team