A transition model from childhood/adolescence into adulthood ??2013-05-08A transition model from childhood/adolescence into adulthood: the Turin ... •Toxicity from treatment received

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  • Marina Bertolotti Eleonora Biasin

    A transition model from childhood/adolescence

    into adulthood: the Turin experience

    CITTA DELLA SALUTE E DELLA SCIENZA PRESIDIO OSPEDALE INFANTILE REGINA MARGHERITA

    SC ONCOEMATOLOGIA PEDIATRICA

    Servizio di Psiconcologia

  • Genoa, April 2013

    Transition is just one step along the road to a cure and has to be seen as a whole This is the only way if it is to be of any efficacy

    Its the only way for the patient to feel accompanied and not unwanted

  • Genoa, April 2013

    NEW DIAGNOSES 2000-2012

    TOTAL=1592

    LLA 24%

    SNC 23%

    T. OSSEI 9%

    NB 7%

    LMA/LMC 6%

    LH 6%

    LNH 6%

    SARCOMI 4%

    T. WILMS 3%

    ISTIOCITOSI 3%

    RB 1%

    ALTRO 8%

  • Genoa, April 2013

    DIAGNOSIS Medical interview to discuss treatment

    Definition of treatment-related acute risks Definition of treatment-related long-term risks

    OFF THERAPY Revision of the treatment received Definition of any possible complications Education about surveillance and recommended screening Education concerning the right life-style

    TRANSITION

    Presence of personnel trained in dealing with problems associated with long-term survivors Revision of treatment and any pre-existing complications Ongoing education on maintaining the right life-style and on maintaining surveillance

    Nathan et al, Cancer,2011

  • Genoa, April 2013

    PATIENT DISTRIBUTION

    0

    50

    100

    150

    200

    250

    300

    350

    Deceduti

    Persi follow up

    Off therapy

  • Genoa, April 2013

    DIAGNOSIS Medical interview to discuss treatment

    Definition of treatment-related acute risks Definition of treatment-related long-term risks

    OFF THERAPY Revision of the treatment received Definition of any possible complications Education about surveillance and recommended screening Education concerning the right life-style

    TRANSITION Presence of personnel trained in dealing with problems associated with long-term survivors Revision of treatment and any pre-existing complications Ongoing education on maintaining the right life-style and on maintaining surveillance

    Nathan et al, Cancer 2011

  • Genoa, April 2013

    DISCONTINUING TREATMENT

    Interview with patients and parents: . Results of haemato-chemical tests and re-evaluation

    tools . Revision of treatment and any complications . Programme for future controls . Clinical report for the paediatrician or GP

  • Genoa, April 2013

    OFF THERAPY OUTPATIENT CLINIC Dedicated Outpatients Unit

    RELAPSE SURVEILLANCE: specific follow-up for the pathology even > 5 years from off-therapy

    TOXICITY SURVEILLANCE: endocrinologist cardiologist, neurologist, ophthalmologist, ENT specialist, orthoped surgeon, nephrologist, urologist, pneumologist, psychologist

    DIFFERENTIATED FOLLOW-UP PER PROTOCOL

  • Genoa, April 2013

    OUT-PATIENTS OFF-THERAPY ACTIVITY

    N totale di accessi: 1082

    SETTEMBRE 2011/AGOSTO 2012

    0

    20

    40

    60

    80

    100

    120

  • Genoa, April 2013

    In the coming years, 1/570 people between the ages of 20 and 34 will be a long-term survivor of a childhood cancer

    Toxicity from treatment received in childhood may appear years later when the patient is a young adult and not necessarily when discontinuing treatment

    Henderson TO et al., Pediatrics 2010

    TRANSITION

  • Genoa, April 2013

    Previous possible transition difficulties:

    For adolescents, the moment of

    TRANSITION to specialists for adults might

    have represented an experience of the loss

    of relationships with people in whom they

    had placed their trust, who had contributed

    to the successful outcome of their treatment

    and who had been an important point of

    reference for any doubt or anxiety

    concerning their health.

  • Occasionally, adolescents, who had faced a

    serious illness, especially over a number of

    years, in childhood, and depending on the

    family dynamics, had an infantilised and

    dependent image of themselves.

    Thus, the step to adult health services might

    have called for them to be prepared to make

    changes in how they saw themselves.

    Genoa, April 2013

  • In adults, the doctor-patient relationship is a

    personal, not a family, one, and this might

    scare both the adolescent and the family.

    Some parents, in whom worry about the

    illness contributed to keeping their child

    small and dependent, often tended to

    sabotage the TRANSITION if they felt

    excluded from the decisional moments in the

    new type of approach.

    Genoa, April 2013

  • Genoa, April 2013

    Previous possible transition difficulties:

    Paediatricians, after years of having a close

    relationship with their patients who had been

    part of their clinical success, might have found it hard to let their patients go. At times, paediatricians might have had a

    low sense of confidence in the adolescents capacity to be self-sufficient and responsible

    for their health, and they might also have

    been somewhat doubtful of adult health care

    services.

  • Although paediatricians might have been

    unaware of their own uncertainties and

    feelings, their patients might have perceived

    them, also through non-verbal messages,

    because they themselves might have had

    similar doubts and feelings.

    One real issue for paediatricians might also

    have been a fear of losing long-term-

    survivors, who were important for

    longitudinal studies.

    Genoa, April 2013

  • Genoa, April 2013

    Previous possible transition difficulties:

    Physicians for adults: the physician who usually

    looked after adults might have had little interest for, or

    worry about, the arrival of a patient who had been

    affected by a typical childhood illness, or an illness

    that might have had long-term outcomes or effects.

    Adolescents and their parents might have been

    destabilized by the physician's attitude towards the

    new young patient and by clinical organizations or the

    application of instrumental examinations.

  • Getting over difficulties

    These difficulties highlight the need to plan, build and share the transition PROCESS with all those involved.

    This is so that the patients, families and health care professionals (including physicians, paediatricians and psycho-oncologists) can all fully participate in the transition from paediatric to adult health care.

    Difficulties can be overcome and there may be a collaborative atmosphere with an efficient, effective health service.

    Genoa, April 2013

  • Genoa, April 2013

    I.T.G

    INTERDISCIPLINARY TREATMENT GROUP There is an effective modus operandi thanks to the interdisciplinary work carried out by all the health care professionals involved in the diagnostic-therapeutic process. The interdisciplinary clinical approach arises from an overall view of the patients and their pathology

    I.T.G. SECONDARY TUMOURS AND LATE

    TOXICITY 3/9/2008

  • Genoa, April 2013

    ITG SECONDARY TUMOURS AND LATE TOXICITY

    MONTHLY MULTIDISCIPLINARY MEETING WITH THE FOLLOWING OBJECTIVES: Discussion of clinical cases needing a multidisciplinary approach

    Presentation of off-therapy patients, with general and patient-specific follow-ups

    Presentation of transition patients Presentation and discussion of organ-specific follow-ups

  • Genoa, April 2013

    TRANSITION AT THE COES CENTRE TRANSITION UNIT FOR CHILDHOOD CANCER SURVIVALS

    (Dr. Enrico Brignardello)

    -Age>18 years -Off therapy for at least 5 years in relation to the evaluation of individual variables

    PATIENTS FROM 2001: 341 males: 198 females: 143

    LLA 33%

    SARCOMI 3%

    SNC 14%

    T. WILMS 2%

    LH 18%

    ISTIOCITOSI 1%

    LNH 9%

    NB 1%

    T. OSSEI 8%

    RB 1% LMA/LMC

    7%

    ALTRO 3%

  • Genoa, April 2013

    DIAGNOSIS Interview about the therapy

    Definition COPY SEE ABOVE SLIDES of acute risks correlated to the treatment Definition of treatment related long-term risks

    OFF THERAPY Revision of treatment Definition of any complications at the time of off-therapy Education about recommended surveillance and screening Education about the right life style

    TRANSITION Personal trained to deal with the issues of the patients long-term survival Revision of the treatment and any pre-existing complications Ongoing education concerning the right life-style and continuing surveillance

    Nathan et al, Cancer 2011

  • From the Turin experience (Dr. Brignardello)

    1) The dual value of the first consultation (a strong feeling of continuing care; sharing information upon which the surveillance protocol might be tailored.

    2) Dedicated" personnel for the follow-up (a network of "committed" specialists has been created) and the simplification of pathways (e.g., using e-mail or a "dedicated" telephone number).

    3) Behaviour, that is neither intrusive, nor lacking

    All these points lead to a low "drop-out" rate (under 15%) and a lengthy follow-up period. And various late developing complications have been found thanks to this approach.

  • Genoa, April 2013

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