Narrative medicine as a tool to detect the burden of illness
www.fondazioneistud.itNarrative medicine as a tool todetect the burden of illness:an application to myelofibrosisMaria Giulia Marini – Fondazione ISTUDStockholm, June 13
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 thatthe 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 andloss of function caused by the disease.• In terms of a subjective burden, a measure of these aspects isthe change, in most of cases a decrease in quality of life(QoL).Up to few years ago and still now, the scientific validatedmeasurement tool to explore quality of live was and isquantitative questionnaire.
Between disease and illness• Disease is the side of the mechanics, the performanceand the causal effects of treatments bound primarily tothe functionality of the "body" or even more of a “targetorgan”• Illness concerns the conscious or unconsciousperception that the subject has of the disease, how isthe living with, thus transforming the patient from objectof care to a human subject who feels and thinks andperceives the disease.By Arthur Kleinmann: in 2006 Kleinman received the Lifetime Achievement Award from theSociety for Medical Anthropology ,and in 2004, he was awarded the Doubleday Medal inMedical Humanities by University of Manchester. In 2007 he received an award in themedical humanities at Imperial College in London.
Narrative medicine and its scopesPersonalization: Narrative medicine is what happensbetween the health provider and the patient: from thecollection of information of events before the occurrence ofthe disease, how the disease showed up, with attention tophysical, psychological, social and ontological features.Attention is therefore to the Burden of Illness and to find thebest way to personalize strategy of care. Greenhalgh andHurtwitz of King’s College, BMJ, 1999: “Narrative basedmedicine in an evidence based world”.
Narrative medicine and its scopesOrganization: “Narrative Medicine fortifies clinical practicewith the narrative competence to recognize, absorb,metabolize, interpret, and be moved by the stories ofillness:… helps doctors, nurses, social workers, andtherapists to improve the effectiveness of care bydeveloping the capacity for attention, reflection,representation and affiliation with patients andcolleagues.” Rita Charon, JAMA, 2001
Narrative medicine is democratic: doesn’tbelong to a particular profession or role,but to all individuals• Every human being has or will have to deal with thebalance/unbalance of health and illness: this is why thisdiscipline should not be confined just to a specific field ofcompetence, but it crosses all roles and specialties.• It has to be carried out with a systemic approach and not onlythrough the listening of patients’ voices but also of theircaregivers, carers, friends, employers, teachers, and citizens.It’s a bottom – up governance toolMaria Giulia Marini; La Repubblica, June 12, 2012
The possible linear plot of illnessThe appearance of an illness breaks a balance of the individualpatient1.Falling ill (first part of the story... early signs for the diagnosis)2.Being ill (second part of the story... indications forinterventions with possible success or failure)3.Getting worse of getting better (end of the story: could betotal healing, or not healing but development of capability ofcoping, such as in chronic conditions, or in end of life.)Each case study is a story to listen to and decode and to writeand cannot be reproduced,however it has yet common occurrences.Moving from Singularia to Pluralia
Narrative medicine: our experience• 2006: climate analysis on pain therapists.• 2008: collecting stories from people with Amiotrophic LateralSclerosys; burden of communication of diagnosis .• 2010: people with Spinal Cord Injury and their wandering for thecorrect place of care. Burden of enthropic care.• 2010: ONICE, story telling of the obesity in Italy, toward an effectivecare.• 2011-2012: VEDUTA, study on the social role of pain therapy andthe pain therapists’ needs.• 2012-2013: Life stories in Silver Age, listening stories of over eightyaged people, to understand the way of living their elderly, toward anew 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
«Back to Life» project’s outline isquite innovative: stories andnumbers to evaluate Burden ofDisease of Myelofibrosis
«Back to Life» projectOBJECTIVES•Quantify the humanistic and financial burden of illness forpatients affected by myelofibrosis•Sensitize decision makers at local and national level, as well asscientific community, on devastating effect on myelofibrosis onpatients’ livesMETHODOLOGY•Dispense a short questionnaire to 94 patients with questions onillness experience and impact on social aspects of daily life(reached 133 questionnaires gathered)•Collect 30 stories of patients talking about their disease, usingrecurrent tags (reached 97 stories)
Patients’ features• Average age: 66.18 years• Prevalence of Men (54%)• “Traditional” familycompositionGenderM W54% 46%AgeMEDIAN 67 yearsMEAN 66 yearsModa 63 yearsMin 27 yearsMax 88 yearsPatients reported that, before the treatment, they had to cease amajority of their daily activities, ranging from simplest activities likeeating, washing and dressing up to complicated and energyconsuming actions as going for a walk or riding the bicycle: aftertreatment, during the interview period, 91% patients on ruxolitinibwere able to restart the daily activities, whereas 29% of cases onother therapies could catch up the lost activities.
The initial burden: the communication ofthe 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 aboutmyelofibrosis indicates a way of communicating thenews, that is perceived by patients as a time of greatfear and daunting.The associate a time for empathy, advice and support maybe the key to give the patient a fund of serenity."The doctor spent an hour to cheer me up"
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 andthese 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"
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 beable 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”
The impact on the job36% of the patients was working, whereas 65% of thepopulation declared they were in retirement at the momentof the study: only 41% of the interviewed people wereretired at the time of diagnosis of myelofibrosis, indicatingtherefore an increase of 23% retired people following afterthe 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 thediminished income reached 2.000 Euro per month (24.000Euro per year)
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 totravel abroad ..."
Family is the center of caringPaid caregiver• The majority of patients (57%) refers tofamily members for their assistance.• The average number of hours fordedicated support by the family is 11hours per day.• Paid carers are used very seldommainly due to the phenomenon ofunemployment / layoffs which reducesincomes, but allows time forassistance.Caregiver
Relationship within the familiesIn the patients’ stories, family members are described inmany different ways:•extraordinarily supportive and inclusive althoughobjectively present and close, and lands on which tovent their nervousness and anguish•in some cases life and relationship with thefamily are called "normal“. What is the bar to setthe "normal“ standard?•patients claim to be "Im away“, "I tend to isolate myself”,"symptoms of depression in place.It will be interesting to ask to family member which aretheir real life experiences. Therefore what is the burden ofillness of carers….
The narrative language betweendisease and illness in Back to Life• 49 people primarily describe their illness, telling theirinner realm, with their own emotions and their outerrealm, the simple everyday life• 19 people tell meticulously stages of their medicaljourney, the performance of their medical tests and carewithout describing what impact they had in their dailylives and becoming mirrors of medical terminology, withan approach according to the disease• 29 people use a mixed language which indicates aframework including both illness that disease, in amature balance between attention to the path of careand to their daily lives and their feelings
The future: Back to life,still to explore in Italy• …the living with the illness of patients affected bymyelofibrosis, still in productive age and active aging• …the living with the illness of caregivers, who are familymembers
A men, 88 years old, before….I was on vacation at the beach with my grandchildren. …I was so tired and hadbruises all over the body.Then I decided to go to the doctor to do the tests. I resulted very anemic and I wasreferred to the hematologist …. At the end, the experts told me it was a rare diseasecalled myelofibrosis. The moment they told me the disease I felt I was in crisisbecause the prognosis was fatal, and I thought I would die for what they had told thedoctors: we knew nothing about this disease and I decided to treat myself. At home Iwas always tired … at first I blamed my age: I could not go no fishing, I could not playmore bowls, not walked. I slept everywhere, and I had hip pain. …. With my loved onesI was nervous. My body was suffering and my life had changed with the limitations: Iwas always at home….I was referring always to the same center because I felt that they were curing meproperly: for this I was very grateful. …The people close to me were very close and very caring because I don’t wantstrangers.It seemed to me that my illness had the best over me: at day time I was tired and I hadhip pain and, at night time I was sweating hot or cold.
And now…Now I feel better today and the disease is under control.My body and my feelings have changed because now I moveand 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 Ifeel betterWith my loved ones I feel more serene and they are lessnervous.I think that the treatments were effective and in particular thetreatment with ruxolitinib have been very effective.I would like to happen tomorrow I can return to the sea to gofishing…
Maria Giulia MariniFondazione ISTUDmmarini@istud.itwww.istud.it