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
•It’s 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 patient’s 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
EVIDENCE from LITERATURE At present, there are contradictory results from studies on the QoL of survivors of childhood and adolescent cancers: - Adverse events - QoL and satisfactory social adaptation - Similar levels of depression to the healthy population
Genoa, April 2013
WHY? - VARIOUS DIAGNOSES IN THE STUDY COHORTS - THE TIME FROM DIAGNOSIS - VARIOUS SCREENING TOOLS AND METHODS
Genoa, April 2013
- Few studies solely on the long-term emotive level - Few patients return for a psychological consultation at the centre where they had been treated - Patients usually contact centres for adults or private practitioners
Genoa, April 2013
Clinical evidence : - there are long-term side-effects, including psychological ones - there is no single pathway towards being healed or towards adulthood - there are various “outcomes” (positive ones, too)
Genoa, April 2013
Our children’s QoL depends on the interaction of various factors: -biological -psychological -social -assistential
Genoa, April 2013
- Objective Factors: realty/seriousness of the illness - Personal Factors: age, high or low capacity to face the illness - Social Factors: quality of family and social relationships, and of the treatment Are all factors that help or hinder during treatment
Genova, apile 2013
ITG SECONDARY TUMOURS AND LATE
TOXICITY
… ONGOING STUDIES IN TURIN • applying the psycho-oncological complexity form to off-therapy patients at the time of TRANSITION • cardio-vascular study proposal for off-therapy patients • evaluation of gonad function in patients who undergo allogeneic haemopoietic stem cell transplantation
Genoa, April 2013
Healing and growth are closely
linked and have a very personal
prospective for each individual.
Genoa, April 2013
The experience of their illnesses can make the former child/adolescent patients become stronger, or weaker, adults. They could also become adults with some strong and some fragile aspects just like most other individuals. Because light and darkness are both part of everyone’s lives.
“I came to see you because I was here with my wife who was at the St Anna hospital for a check-up [smiles] … and now I see all you “old folks” [apologises and asks after some doctors] with great pleasure, but you don’t know just how emotional I feel when I come here … but I was just seven years old and now I’m over thirty … a whole bag of emotions : joy, nostalgia, certainty, hope … yet when (very rarely) whenever I’m near here it’s feels as if it were just yesterday, and I must say it’s more for the good memories than the bad ones. And now I must say if it hadn’t been for the help I got from those great adults, as I’d like to think I am now, I’m not sure whether I could come back here ….a child can’t always understand by him/herself. You can grow up and lots of things may happen to you, both good and bad … perhaps it’s true that life really is made up of darkness and light …”
Francesco (32)
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