Narrative medicine as a tool to detect the burden of illness: an application to myelofibrosis. Progetto realizzato da ISTUD per Novartis. Presentazione di Maria Giulia Marini.

1. www.fondazioneistud.it
Narrative medicine as a tool to
detect the burden of illness:
an application to myelofibrosis
Maria Giulia Marini – Fondazione ISTUD
Stockholm, June 13

2. The Burden of Illness and Quality of Life
• Burden of Illness means both the impact caused by the
“living with the disease” of the patient and the burden that
the disease brings to the patient’s community.
• The Burden of Illness investigates several items: physical,
psychological, relational, economics, occupational, spiritual,
ontological and depends on the mortality and morbidity and
loss of function caused by the disease.
• In terms of a subjective burden, a measure of these aspects is
the change, in most of cases a decrease in quality of life
(QoL).
Up to few years ago and still now, the scientific validated
measurement tool to explore quality of live was and is
quantitative questionnaire.

3. Between disease and illness
• Disease is the side of the mechanics, the performance
and the causal effects of treatments bound primarily to
the functionality of the "body" or even more of a “target
organ”
• Illness concerns the conscious or unconscious
perception that the subject has of the disease, how is
the living with, thus transforming the patient from object
of care to a human subject who feels and thinks and
perceives the disease.
By Arthur Kleinmann: in 2006 Kleinman received the Lifetime Achievement Award from the
Society for Medical Anthropology ,and in 2004, he was awarded the Doubleday Medal in
Medical Humanities by University of Manchester. In 2007 he received an award in the
medical humanities at Imperial College in London.

4. Narrative medicine and its scopes
Personalization: Narrative medicine is what happens
between the health provider and the patient: from the
collection of information of events before the occurrence of
the disease, how the disease showed up, with attention to
physical, psychological, social and ontological features.
Attention is therefore to the Burden of Illness and to find the
best way to personalize strategy of care. Greenhalgh and
Hurtwitz of King’s College, BMJ, 1999: “Narrative based
medicine in an evidence based world”.

5. Narrative medicine and its scopes
Organization: “Narrative Medicine fortifies clinical practice
with the narrative competence to recognize, absorb,
metabolize, interpret, and be moved by the stories of
illness:… helps doctors, nurses, social workers, and
therapists to improve the effectiveness of care by
developing the capacity for attention, reflection,
representation and affiliation with patients and
colleagues.” Rita Charon, JAMA, 2001

6. Narrative medicine is democratic: doesn’t
belong to a particular profession or role,
but to all individuals
• Every human being has or will have to deal with the
balance/unbalance of health and illness: this is why this
discipline should not be confined just to a specific field of
competence, but it crosses all roles and specialties.
• It has to be carried out with a systemic approach and not only
through the listening of patients’ voices but also of their
caregivers, carers, friends, employers, teachers, and citizens.
It’s a bottom – up governance tool
Maria Giulia Marini; La Repubblica, June 12, 2012

7. The possible linear plot of illness
The appearance of an illness breaks a balance of the individual
patient
1.Falling ill (first part of the story... early signs for the diagnosis)
2.Being ill (second part of the story... indications for
interventions with possible success or failure)
3.Getting worse of getting better (end of the story: could be
total healing, or not healing but development of capability of
coping, such as in chronic conditions, or in end of life.)
Each case study is a story to listen to and decode and to write
and cannot be reproduced,
however it has yet common occurrences.
Moving from Singularia to Pluralia

8. Narrative medicine: our experience
• 2006: climate analysis on pain therapists.
• 2008: collecting stories from people with Amiotrophic Lateral
Sclerosys; burden of communication of diagnosis .
• 2010: people with Spinal Cord Injury and their wandering for the
correct place of care. Burden of enthropic care.
• 2010: ONICE, story telling of the obesity in Italy, toward an effective
care.
• 2011-2012: VEDUTA, study on the social role of pain therapy and
the pain therapists’ needs.
• 2012-2013: Life stories in Silver Age, listening stories of over eighty
aged people, to understand the way of living their elderly, toward a
new healthcare and social organization.
• 2012-2013: "Back to life", living with Myelofibrosis
• 2013- Growing, stories of teenagers with GH deficit, their parents,
siblings, and doctors

9. «Back to Life» project’s outline is
quite innovative: stories and
numbers to evaluate Burden of
Disease of Myelofibrosis

10. «Back to Life» project
OBJECTIVES
•Quantify the humanistic and financial burden of illness for
patients affected by myelofibrosis
•Sensitize decision makers at local and national level, as well as
scientific community, on devastating effect on myelofibrosis on
patients’ lives
METHODOLOGY
•Dispense a short questionnaire to 94 patients with questions on
illness experience and impact on social aspects of daily life
(reached 133 questionnaires gathered)
•Collect 30 stories of patients talking about their disease, using
recurrent tags (reached 97 stories)

11. Patients’ features
• Average age: 66.18 years
• Prevalence of Men (54%)
• “Traditional” family
composition
Gender
M W
54% 46%
Age
MEDIAN 67 years
MEAN 66 years
Moda 63 years
Min 27 years
Max 88 years
Patients reported that, before the treatment, they had to cease a
majority of their daily activities, ranging from simplest activities like
eating, washing and dressing up to complicated and energy
consuming actions as going for a walk or riding the bicycle: after
treatment, during the interview period, 91% patients on ruxolitinib
were able to restart the daily activities, whereas 29% of cases on
other therapies could catch up the lost activities.

12. The initial burden: the communication of
the diagnosis
"All the doctors tell me that you can not heal"
This sentence, reported differently in different stories,
then combined to information available on the web about
myelofibrosis indicates a way of communicating the
news, that is perceived by patients as a time of great
fear and daunting.
The associate a time for empathy, advice and support may
be the key to give the patient a fund of serenity.
"The doctor spent an hour to cheer me up"

13. The physical burden of the disease
“My body was suffering and I was in a state of depression”
"My body was suffering and I didn’t’ know what to do because I didn’t know the symptoms of the disease and
these symptoms were weighing more and more"
"My body was suffering and my life was changed with the limitations: I was always at home"
"I suffered from abdominal pain due to spleen sweating so much and so tired"
"My body was suffering and I grit my teeth not to complain"
"My body was suffering and I was fighting"

14. The burden of the disease at home
"I used to live from bed to chair without strength”
“I was continuously fainting on my legs”
“I used to think about what I was able to do in life (the teacher), and that would no longer be
able to perform as before"
"I didn’t want to talk, I felt very isolated“
"I felt always very sad“
“I had to give up my daily activities”
“I was always thinking to the disease”
“I was fearing to leave my beloved ones alone”

15. The impact on the job
36% of the patients was working, whereas 65% of the
population declared they were in retirement at the moment
of the study: only 41% of the interviewed people were
retired at the time of diagnosis of myelofibrosis, indicating
therefore an increase of 23% retired people following after
the diagnosis of myelofibrosis.
Out of a 36% patients who had an impact on income, 89%
reported less earnings up to 1.000 Euro per month
(12.000 Euro per year) and in 11% of patients the
diminished income reached 2.000 Euro per month (24.000
Euro per year)

16. The burden of the disease at work
“I used to feel helpless against fatigue ...“
“I asked for an earlier retirement”
"I did not want to talk to anyone ..."
"I used to not being able to do everything ..."
"I used to fall asleep on pc keyboard ..."
"I could not hold rhythms of stressful work and give up to
travel abroad ..."

17. Family is the center of caring
Paid caregiver
• The majority of patients (57%) refers to
family members for their assistance.
• The average number of hours for
dedicated support by the family is 11
hours per day.
• Paid carers are used very seldom
mainly due to the phenomenon of
unemployment / layoffs which reduces
incomes, but allows time for
assistance.
Caregiver

18. Relationship within the families
In the patients’ stories, family members are described in
many different ways:
•extraordinarily supportive and inclusive although
objectively present and close, and lands on which to
vent their nervousness and anguish
•in some cases life and relationship with the
family are called "normal“. What is the bar to set
the "normal“ standard?
•patients claim to be "I'm away“, "I tend to isolate myself”,
"symptoms of depression in place.
It will be interesting to ask to family member which are
their real life experiences. Therefore what is the burden of
illness of carers….

19. The narrative language between
disease and illness in Back to Life
• 49 people primarily describe their illness, telling their
inner realm, with their own emotions and their outer
realm, the simple everyday life
• 19 people tell meticulously stages of their medical
journey, the performance of their medical tests and care
without describing what impact they had in their daily
lives and becoming mirrors of medical terminology, with
an approach according to the disease
• 29 people use a mixed language which indicates a
framework including both illness that disease, in a
mature balance between attention to the path of care
and to their daily lives and their feelings

20. The future: Back to life,
still to explore in Italy
• …the living with the illness of patients affected by
myelofibrosis, still in productive age and active aging
• …the living with the illness of caregivers, who are family
members

21. A men, 88 years old, before….
I was on vacation at the beach with my grandchildren. …I was so tired and had
bruises all over the body.
Then I decided to go to the doctor to do the tests. I resulted very anemic and I was
referred to the hematologist …. At the end, the experts told me it was a rare disease
called myelofibrosis. The moment they told me the disease I felt I was in crisis
because the prognosis was fatal, and I thought I would die for what they had told the
doctors: we knew nothing about this disease and I decided to treat myself. At home I
was always tired … at first I blamed my age: I could not go no fishing, I could not play
more bowls, not walked. I slept everywhere, and I had hip pain. …. With my loved ones
I was nervous. My body was suffering and my life had changed with the limitations: I
was always at home….
I was referring always to the same center because I felt that they were curing me
properly: for this I was very grateful. …
The people close to me were very close and very caring because I don’t want
strangers.
It seemed to me that my illness had the best over me: at day time I was tired and I had
hip pain and, at night time I was sweating hot or cold.

22. And now…
Now I feel better today and the disease is under control.
My body and my feelings have changed because now I move
and get out to the gardens to watch the kids playing.
I watch television and I’m able to understand.
I move more.
My feelings are of greater tranquility At home I get on moving I
feel better
With my loved ones I feel more serene and they are less
nervous.
I think that the treatments were effective and in particular the
treatment with ruxolitinib have been very effective.
I would like to happen tomorrow I can return to the sea to go
fishing…

23. Maria Giulia Marini
Fondazione ISTUD
mmarini@istud.it
www.istud.it