4th Joint Meeting on Adolescent Medicine

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4th Joint Meeting on Adolescent Medicine
The adolescent with special needs Ladolescente
con bisogni speciali El adolescente con
necesidades especiales Friday, 15 october
2010 Catanzaro - Italia
Dra. Laura Rosario Batalla Canelones, Uruguay
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Why adolescent has special needs?

• Onset of chronic diseases, such as psychiatric
  disorders or insulin-dependent diabetes.
• For every death that occurs, there are three
  teenagers who do not die, but they have serious
  injuries.
• Greater survival of chronic childhood-onset and
  congenital diseases, and better prognosis of
  surgical procedures in malformations
• Severe acute disease, requiring long and arduous
  treatment or prolonged hospitalization, or
  accidents, even if cured without physical
  sequelae

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THREE SITUATIONS

• A previously healthy teenager, to whom suddenly
  is made a diagnosis that will affect his life
  forever
• a patient who already has a chronic disease that
  will accompany him forever, and that inevitably
  has to go through the adolescent stage
• a serious situation that puts the patient and his
  family in the limits of its adaptability and
  tolerance for adversity is an instance of shock

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STATISTICS

• Worldwide is estimated that Between 5 and 20
  (reportedly) of the population of children and
  adolescents suffer from some type of chronic
  disease.
• Disability prevalence reaches 7.6 of the total
  population. (Uruguay, 2004)

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CHRONIC DISEASE

• Definition A condition that affects daily
  functioning for more than three months a year, or
  requires hospitalization for more than one month
  per year, or puts the patient at risk for any of
  these conditions.1
• 1 Pediatric Update Program S.A.P. Módulo 4

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DISABILITIES

• Definition "Disability is all limitations and
  restrictions on participation, originating from a
  deficiency that affects a person on a permanent
  basis to cope in their daily lives within their
  physical and social environment1
• 1 International Classification of
  Functioning, Disability and Health (CIF),
  adopted by the World Health Assembly on 22 May
  2001.

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• The male population under 30 years showed higher
  incidence of disability than the female of the
  same age.

National Survey of People with Disabilities
Uruguay, 2004
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• Children and young people represent 17.9 of the
  population with at least one disability.
• 9.4 of disabilities
• of all ages are
• a result of
• accidents.

National Survey of People with Disabilities
Uruguay, 2004
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• EDUCATION
• 81.8 and 90.6 for people with and without
  disabilities.

National Survey of People with Disabilities
Uruguay, 2004
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CHRONIC DISEASE

• We can consider chronic disease pathologies as
  diverse as
• asthma, diabetes, multiple sclerosis,
• encephalopathy, epilepsy,
• HIV infection or chronic hepatitis,
• hemato-oncological diseases,
• myopathies, psoriasis ...
• and hay fever

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• WHAT IS OUR ROLE?
• Physicians
• Health team members
• Support
• Healing?
• What is our role?

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DIAGNOSIS IN ADOLESCENCE

• The health team approach is essential.
• The diagnosis should be given clearly and
  accurately, planning the time
• Eventualy, more than a health team member.
• it should be agreed the information that each one
  will give to the patient

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INTERDISCIPLINARY TEAM
A group of people who have different skills, and
depend on each other to work efficiently, to
achieve common goals and objectives
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INTERDISCIPLINARY TEAM
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• Should the adolescent patient be present at the
  time of diagnosis?
• Adolescent has the right to "be heard and get
  answers when making decisions that affect their
  lives
• (Law No. 17823, "Childhood and Adolescence Code,
  Chapter 2, Article 8. Uruguay, 2004)
• But What is the best moment?

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• Time is our most valuable ally
• The time we can give to the family
• The time they need to assimilate the new life
  situation.

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• Emphasize the strengths of the family.
• Give importance to the positive aspects that the
  patient can develop in the future
• Each one must think about which "good thing" may
  be told to that family

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• Many times, in our good intention to seek the
  best professionals to confirm the diagnosis, or
  to find the best treatment, we refer patients to
  other colleagues, without letting them know that
  this is nothing more than a consultation, but we
  will still be their own doctors, and main
  physicians.

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• And we should not forget that this diagnosis
  falls in the middle of teenage troubles, so both
  the patient and his family are in new situations,
  one of which they never expected to go through.

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THE ARRIVAL OF ADOLESCENCE

• Explain to the family, and as far as possible to
  the teenager himself, which are the changes to
  expect, and what are the consequences they have
  on the underlying disease.

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Carla

• A 14 years patient with diabetes mellitus
  diagnosed at age 5, came to our Department
  because their disease, previously controlled and
  well balanced, had started to become difficult to
  maintain with adequate blood glucose numbers.
  Doses were studied, types of insulin adjusted as
  diet and exercise, but she kept losing weight,
  with widely varying numbers of high glucose and
  glycated hemoglobin. Questioning alone, shows an
  inadequate use of insulin, with lower doses than
  those given with the explicit purpose of
  increasing glycemia and reducing weight.

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PROLONGED OR SEVERE ACUTE PATHOLOGY

• Serious infectious diseases, surgical complicated
  diseases, and mainly in accidents or violence,
  which determine the placement of a teenager in a
  third stage care service.
• We must stay in touch with doctors on call, the
  Emergence, internists, who take care of our
  patients while they are in this situation.

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• We can be very useful
• Explaining what the colleague on duty can not,
• Explaining what they did not understand, in the
  language we know that our patient will
  understand,
• Cooperating with our colleague in deciding the
  best time of discharge and outpatient treatment,
  cause we know better the environment to which the
  patient will return.

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• We must always bear in mind that our patient
  with chronic disease, or disability, may have a
  medical or surgical situation, related or not,
  with their underlying disease.

One patient presented with severe psychiatric
disorders had a major abdominal pain, diffuse,
and that she could hardly precise. With low
fever, very upset by the pain and screaming "I
can not stand the pain, I want to kill myself!",
she was evaluated by a doctor on call, and
diagnosed as a decompensation of the underlying
pathology, with risk of suicide attempt. Entered
into a psychiatric hospital, a nurse, before
giving the powerful sedative indicated, examined
her abdomen and took her temperature. With fever
and a diagnosis of "acute abdomen" was
transferred to a general hospital, where she was
diagnosed with "appendicitis and acute
peritonitis, and underwent emergency surgery.
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CONSULTATION THREE KEY ELEMENTS

• a) growth evaluation, development, nutritional
  status,
• b) extra domestic activities performed by
  adolescents, their inclusion in the peer group
  and social context and
• c) the emergence of sexuality.

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• a) growth evaluation, development, nutritional
  status

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Rodrigo

• A 12 year old patient came to the Adolescent
  Service for health control. He was a healthy
  child up to 9 months of life, when suffered from
  a serious meningococcal meningitis with purpura
  fulminans. The rapid progression of the disease
  forced to amputate both legs, all the fingers of
  his left hand and two of the right hand. With
  such terrible physical injuries, while
  maintaining his intellectual integrity, he
  recovers and start his rehabilitation prostheses
  are placed, that the moment the patient handles
  properly, even playing sports.

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• On arrival at the exam I remark the need to know
  his height and weight. Astonished, he said to me
  that "for years that no one measured or weighed
  me!". The mother said that after beginning the
  use of prostheses had no control over
  anthropometry. I measured and weighed him with
  the prosthesis, and then asked the mother to
  consult the manufacturer about their length and
  weight. A simple subtraction then helped us in
  the following interview, to know these
  fundamental data in adolescence, and follow up.

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• b) extra domestic activities performed by
  adolescents, their inclusion in the peer group
  and social context

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• The achievement of autonomy, impossible in many
  cases, can be negotiated in others and even be
  encouraged.
• Pay atention
• frequent or long hospitalizations
• loss of classes
• delay in performance

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Police HospitalMontevideo - Uruguay

• Project for education to adolescents hospitalized
  for prolonged periods
• Psycho pedagogyc, psychology and psychiatry
• Assist young people who should be admitted in
  hospital, in order not to be delayed the
  acquisition of skills or knowledge
• Avoid the drop out of school.

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Police HospitalMontevideo - Uruguay
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• c) the emergence of sexuality.

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• The adolescent sexuality is a conflictive issue
  for the family, and even for professionals who
  are not trained in its approach. Moreover if the
  adolescent has a chronic illness, and even more
  so if he carries a disability. But sexuality does
  not drown into disability or illness.

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• it can be a side to work for the acquisition of
  autonomy
• it can be a side in the inclusion of the
  adolescent's peer group
• In the case of chronic diseases will be very
  important genetic counseling
• what is the best contraceptive method to use, for
  women and men
• In extreme cases it should be considered with
  parents or guardians, the possibility of
  permanent sterilization.

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CARING FOR THE CAREGIVER

• We must remember
• that the patient's family
• cares FOREVER

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CARING FOR THE CAREGIVER

• The patient may require
• total care (chronic encephalopathy, severe
  sequelae of accidents),
• comprehensive monitoring (psychiatric illnesses
  that preclude autonomy, as intellectual
  retardation or chronic psychosis)
• sporadic monitoring (chronical deseases than
  determining disability periods that alternate
  with periods of autonomy, such as demyelinating
  diseases or neoplasms).1

• 1 Fernández Moya, Jorge "Chronic Disease",
  presentation at VI Pan American Congress of
  Systemic Therapy, Association of Systemic
  Psychotherapy in Buenos Aires, 1 to 3 October 2009

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CARING FOR THE CAREGIVER

• promote the alternation in the care of patients
  for the family post relay
• crisis of care
• assist in the weaving of these decisions who
  cares, what, when, how.
• The family is often overwhelmed by the daily
  cares, and need "view from the outside"

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EDINSON AND ERIKA

• Edinson and Erika are two teenage brothers, 18
  and 17 years respectively. Both were diagnosed at
  8 years of disease ataxia telangiectasia or Louis
  Bar. This determines impaired balance and
  stereotyped movements, which cause a very severe
  difficulty in walking. They live in the
  countryside, about 15 km from the nearest town in
  the deep inside of my Uruguay. Every three months
  they come to visit. Their father is a policeman
  and mother a housewife. They have a younger
  brother, healthy. This family may be worthy of
  commiseration. Quite the contrary, has developed
  plans for their children, who deserve our
  admiration and respect both of the study Edinson
  agriculture tasks and Erika as a cook. Both help
  with the field tasks. Their father has
  manufactured a "walker", adapted to the rough and
  uneven terrain of the establishment in which they
  live. And their mother takes them on a bike to
  their place of study, on alternate days each.
  These parents are showing and example of how
  disability can be lived in several ways, and as
  they say
• "we could have chosen to complain, but we choose
  to grow them."

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BRUNO

• Bruno always liked football, but could not find a
  place where he could go, not only economically,
  but also because he can not go alone anywhere,
  except to school where he walks. A classmate told
  him about a team and took a bus to Portones.
  Since then, they started to come together on the
  bus. This is how Bruno first started riding buses
  alone. Beyond that, he found a peer group with
  which he shares not only a love for sport, but
  they identify within the same group, although all
  have different capabilities (microcephaly,
  deafness, Down syndrome). The first competition
  was in October, in Fray Bentos and they won the
  National Special Olympics, his first medal. My
  parents thought it was not going to last for
  long. Meanwhile, Bruno was going training.

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BRUNO

• A day he comes home and says he is going to
  Puerto Rico. Nobody paid any attention, we all
  thought it was "some stuff of his" until the
  teacher calls home and says that Bruno was
  selected to go on to play in Puerto Rico. Our
  concern was that Bruno never went anywhere alone
  and we were very scared. I was terrified that he
  might get lost, missbehave or not pay attention
  to teachers. The only thing he lost was some
  clothes, but really it was an unforgettable
  experience for him the competition, the airline,
  travel, meet new people, be without his family.
  Olympic Committee told us that all was well, and
  when we went to the airport they say they brought
  a silver medal. It was also nice to see the
  ceremony on the Internet, filmed marching, he and
  his friend. It was beautiful!

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THANK YOU VERY MUCH!