Download Pasaporte del superviviente de un cáncer infantil o de la adolescencia

Pasaporte del superviviente
de un cáncer infantil o de la
adolescencia
Dra. Catalina Márquez Vega
UGC intercentros de Oncología Pediátrica
Hospital Universitario Virgen del Rocío
—  Introducción
—  Importancia seguimiento a largo plazo
—  Barreras
—  Modelos de cuidados
—  Pasaporte
Incidencia baja: 1%
Mortalidad Infantil
Avances en el tratamiento
70-80%
CIRUGÍA
NUEVAS TERAPIAS
RADIOTERAPIA
QUIMIOTERAPIA
TRATAMIENTO DE SOPORTE
5-10%
A
b
Ac monoclonales
Pequeñas
moléculas
ib
Equipo interdisciplinar
PEDIATRA
DE A.PRIMARIA
ONCÓLOGO PEDIATRA
REHABILITADORES
PATÓLOGOS
CIRUJANO
PEDIATRA
RADIOTERAPEUTA
ENFERMERÍA
PSICÓLOGOS
ASOCIACIONES
PADRES
MAESTROS
TRABAJADORES
SOCIALES
The Lancet Oncology, Volume 15, Issue 1, 2014, 35 - 47
Introducción
—  Supervivencia 75-80%à1/700 adultos sea
superviviente de cáncer
—  Se estima 300-500.000 supervivientes en Europa
—  Cada año se añaden 10.000
—  Secuelas en 70% (30% graves)
“curación a cualquier
precio”
“curación al menor coste”
#complicaciones tardías
Enfermedades
crónicas
FAMILIA
Discapacidad
SERVICIOS
DE SALUD
SOCIEDAD
Cada vez tenemos más información sobre las consecuencias a largo plazo
del tratamiento, pero no sabemos mucho qué hacer para prevenirlas
The
n e w e ng l a n d j o u r na l
of
m e dic i n e
special article
Chronic Health Conditions in Adult
Survivors of Childhood Cancer
Kevin C. Oeffinger, M.D., Ann C. Mertens, Ph.D., Charles A. Sklar, M.D.,
Toana Kawashima, M.S., Melissa M. Hudson, M.D., Anna T. Meadows, M.D.,
Debra L. Friedman, M.D., Neyssa Marina, M.D., Wendy Hobbie, C.P.N.P.,
Nina S. Kadan-Lottick, M.D., Cindy L. Schwartz, M.D., Wendy Leisenring, Sc.D.,
and Leslie L. Robison, Ph.D., for the Childhood Cancer Survivor Study*
A BS T R AC T
Hay una incidencia aumentada de efectos a largo plazo y
Background
actualmente
Only a few small studies have assessed the long-term morbidity that follows the
treatment of childhood cancer. We determined the incidence and severity of chronno se ha llegado a una meseta
ic health conditions in adult survivors.
m Memorial Sloan-Kettering Cancer
er, New York (K.C.O., C.A.S.); the Unity of Minnesota, Minneapolis (A.C.M.);
red Hutchinson Cancer Research Ceneattle (T.K., D.L.F., W.L.); St. Jude Chil’s Research Hospital, Memphis, TN
M.H., L.L.R.); Children’s Hospital of
delphia, Philadelphia (A.T.M., W.H.);
ford University Medical Center, Palo
CA (N.M.); Yale University School of
icine, New Haven, CT (N.S.K.-L.); and
wn Medical School, Providence, RI
S.). Address reprint requests to Dr.
nger at the Department of Pediatrics,
morial Sloan-Kettering Cancer Center,
York Ave., New York, NY 10021, or at
ngk@mskcc.org.
Methods
The Childhood Cancer Survivor Study is a retrospective cohort study that tracks the
health status of adults who received a diagnosis of childhood cancer between 1970
and 1986 and compares the results with those of siblings. We calculated the frequencies of chronic conditions in 10,397 survivors and 3034 siblings. A severity score
Oeffinger et
al. Chronic
in adult survivors
ofwas
childhood
(grades
1 through 4,health
ranging conditions
from mild to life-threatening
or disabling)
assigned2006;
to each 355:
condition.
Cox proportional-hazards models were used to estimate
N Engl J Med
1572-82
hazard ratios, reported as relative risks and 95% confidence intervals (CIs), for
a chronic condition.
mbers of the Childhood Cancer Survivor
cancer.
Melissa M. Hudson et al. Clinical Ascertainment of Health Outcomes among Adults
Treated for Childhood Cancer: A Report from the St. Jude Lifetime Cohort Study.
JAMA 2013;309:2371-81
A los 45 años, la prevalencia acumulada era:
ü 95,2% de una complicación crónica
(95% CI 94.8-98.6%)
ü 80% de enfermedad severa
o amenazante para la vida
(95% CI 73.0-86.6%)
Mortalidad como indicador de
enfermedad crónica
Mortalidad
Enfermedad crónica
Pediatr Blood Cancer 2014;61:1551–1557
Challenges for Children and Adolescents With Cancer in Europe:
The SIOP-Europe Agenda
Gilles Vassal, MD, PhD,1* Edel Fitzgerald, MA,2 Martin Schrappe, MD, PhD,3 Frédéric Arnold, MSc,4,5
Jerzy Kowalczyk, MD, PhD,6 David Walker, BMedSci, BM, BS,7 Lars Hjorth, MD, PhD,8 Riccardo Riccardi, MD,9
Anita Kienesberger, MA,5 Kathy-Pritchard Jones, PhD, FRCP (Edin),10 Maria Grazia Valsecchi, PhD,11
Dragana Janic, MD, PhD,12 Henrik Hasle, MD, PhD,13 Pamela Kearns, PhD, MBChB, FRCPCH,14 Giulia Petrarulo, MA,2
Francesco Florindi, MA,2 Samira Essiaf, MSc,2 and Ruth Ladenstein, MD, PhD, MBA, cPM15
In Europe, 6,000 young people die of cancer yearly, the
commonest disease causing death beyond the age of 1 year. In
addition, 300,000–500,000 European citizens are survivors of a
childhood cancer and up to 30% of them have severe long-term
sequelae of their treatment. Increasing both cure and quality of cure
are the two goals of the European paediatric haematology/oncology
community. SIOPE coordinates and facilitates research, care and
training which are implemented by the 18 European study groups and
23 national paediatric haematology/oncology societies. SIOPE is the
European branch of the International Society of Paediatric Oncology
and one of the six founding members of the European Cancer
Organisation. SIOPE is preparing its strategic agenda to assure longterm sustainability of clinical and translational research in paediatric
malignancies over the next 15 years. SIOPE tackles the issues of equal
Key words:
Every year in Europe 15,000 children aged 0–14 years and
20,000 teenagers and young adults aged 15–24 years are diagnosed
with cancer [1]. Overall survival at 5 years continuously improved
from 76.1% in 1999–2001 to 79.1% in 2005–2007 [2]. However,
6,000 young people in Europe still die of cancer each year despite
This is an open access article under the terms of the Creative
Commons Attribution-NonCommercial-NoDerivs License, which
permits use and distribution in any medium, provided the original
work is properly cited, the use is non-commercial and no
modifications or adaptations are made.
Abbreviations: CTD, Clinical Trials Directive; ECCO, European
CanCer Organisation; ECRC, European Clinical Research Council;
ENCCA, European Network for Cancer research in Children and
Adolescents; EPAAC, European Partnership for Action Against
Cancer; ExPO-r-Net, European Expert Paediatric Oncology Reference
Network for Diagnostics and Treatment; ICCCPO, International
Confederation of Childhood Cancer Parent Organizations; IntReALL,
International Study for Treatment of Childhood Relapsed Acute
Lymphoblastic Leukaemia; NAPHOS, NAtional Paediatric Haematology Oncology Societies; POETIC, Paediatric Oncology Experimental
Therapeutics Investigators’ Consortium; PPAC, Parents and Patients’
Advocacy Committee; SIOPE, European Society of Paediatric
Oncology; SIOP, International Society of Paediatric Oncology;
TACL, Therapeutic Advances in Childhood Leukemia and Lymphoma
Consortium; TYA, Teenagers and Young Adults
Direction of Clinical Research, Gustave Roussy and Université ParisSud, Villejuif, France; 2SIOP-Europe Office, Brussels, Belgium;
3
University Medical Centre Schleswig-Holstein, Campus Kiel, Kiel,
Germany; 4Union Nationale des Associations de Parents d’Enfants
atteints de Cancer ou Leucémie (Unapecle), Montpellier, France;
5
International Confederation of Childhood Cancer Parent Organiza"
C
# 2014 Wiley-Liss, Inc., A Wiley Company. Pediatric Blood & Cancer
published by Wiley Periodicals, Inc.
cancer; care; education; oncopolicy; research
CANCER IN YOUNG PEOPLE IN EUROPE
1
access to standard care and research across Europe and improvement
of long term follow up. SIOPE defined a comprehensive syllabus for
training European specialists. A strong partnership with parent,
patient and survivor organisations is being developed to successfully
achieve the goals of this patient-centred agenda. SIOPE is advocating
in the field of EU policies, such as the Clinical Trials Regulation and
the Paediatric Medicine Regulation, to warrant that the voice of
young people is heard and their needs adequately addressed. SIOPE
and the European community are entirely committed to the global
agenda against childhood cancers to overcome the challenges to
increasing both cure and quality of cure of young people with cancer.
Pediatr Blood Cancer 2014;61:1551–1557.
best available treatments. No progress has been made for
malignancies with the worst prognosis (brain tumours, neuroblastoma, sarcomas and acute myeloid leukaemia). Across Europe there
are still major disparities in 5-year survival, for example Eastern
Europe reports 10–20% lower survival rates [2]. Cancer remains the
commonest disease causing death beyond the age of 1 year in
Europe. It is estimated that 300,000–500,000 European citizens are
tions (ICCPO), Nieuwegein, The Netherlands; 6Department of
Paediatric Haematology, Oncology and Transplantology, Medical
University, Lublin, Poland; 7Children’s Brain Tumour Research Centre,
Faculty of Medicine and Health Sciences, University of Nottingham,
Nottingham, United Kingdom; 8Department of Paediatrics, Skåne
University Hospital, Clinical Sciences, Lund University, Lund,
Sweden; 9Division of Paediatric Oncology, Policlinico Universitario
“A. Gemelli”, Roma, Italy; 10University College London Institute of
Child Health, London, United Kingdom; 11Centre of Biostatistics for
Clinical Epidemiology, Department of Health Science, University of
Milano-Bicocca, Monza, Italy; 12School of Medicine, University of
Belgrade, and University Children’s Hospital, Belgrade, Serbia;
13
Department of Paediatrics, Aarhus University Hospital Skejby,
Aarhus, Denmark; 14Cancer Research UK Clinical Trials Unit
(CRCTU), School of Cancer Sciences, University of Birmingham,
Birmingham, United Kingdom; 15Children’s Cancer Research Institute,
St. Anna Kinderkrebsforschung e.V., Children’s Cancer Research
Institute, Wien, Austria
Conflict of interest: Nothing to declare.
[The copyright line for this article was changed on 11 July 2014 after
original online publication.]
!
Correspondence to: Gilles Vassal, 114 rue Edouard Vaillant, Villejuif
94805, France. E-mail: gilles.vassal@gustaveroussy.fr
Received 14 December 2013; Accepted 3 March 2014
2014 Wiley-Liss, Inc., A Wiley Company. Pediatric Blood & Cancer published by Wiley Periodicals, Inc.
Barreras en el
seguimiento
—  Del propio paciente
—  Carecer del conocimiento y/o entendimiento de
su diagnóstico, tratamiento y riesgo de salud
—  Falta de accesibilidad a sitios de cuidados
—  Problemas psicosociales: falta confianza en
cuidadores, sobreprotección, ansiedad,
dependencia emocional
Barreras en el
seguimiento
—  Del personal sanitario
—  Difícil acceso a Hª Cªà Escasa información sobre
enfermedad
—  Escasa formación en evaluación y manejo de E.2os
—  Imposibilidad manejo de todas las facetas de cuidados
—  Escasez de tiempo
—  Derivados de los sistemas de salud
—  Escasez profesionales formados
—  Problemas comunicación con grupos de trabajo de
referencia
—  Escasa cobertura de seguros
Modelos de cuidados
TRATAMIENTO
DIAGNÓSTICO
ONCÓLOGO
PEDIATRA
SEGUIMIENTO A LARGO
PLAZO VIGILANDO
SECUELAS/2º
TUMORES
SEGUIMIENTO
A CORTO
PLAZO
TRANSICIÓN DEL
PACIENTE A OTROS
ESPECIALISTAS EN EL
MOMENTO ADECUADO
Patients Who Received
Care/Screening Test (%)
Prevalence or Cumulative
Incidence (proportion)
ceiving inadequate or no medical care (Table 2). Of the 11% of pasurvivor-focused medical care (a medical visit related to their prior
survivors
reported
form29%
of medical
tients inamong
the CCSS
cohort who
without
healthsome
insurance,
reportedcare in
cancer), and 18% reported risk-based, survivor-focused medical care
1.0
53
Chronic health conditions, any grade
years preceding
the
2003
survey,
fewer
than 15%
had been see
having received
no medical
care
in the
preceding
2 years.
(a medical visit related to their prior
cancer in which screening tests
In contrast,
Visit to cancer center within past 2 yr
53
0.9 or ordered or the survivor was counseled on how to
center.
from
the CCSS
cohort su
were discussed
only 9%cancer
of survivors
withUnfortunately,
health insurancedata
had not
received
medical
53
thoseperiod.
patients
whogroups
are seen
by aofprimary
care
a
reduce his/her
care in that
the same
Other
at risk
receiving
noclinician
care
0.8 specific risks). Consistent with the baseline study,
thoseand
whosurvivors
are seen at
a cancer
centerincomes
to receive
includedlikely
malethan
survivors
with
household
lessan ind
most survivors
0.7 (89%) reported some contact with the medical system;
than $40,000
per year. Among
survivors
did report some(35%
form vof62%; F
however, fewer than one third reported an encounter related to their
echocardiogram
(22%
v 53%)who
or mammogram
0.6
medicalAlthough
care, black50%
survivors,
the
uninsured,
and
survivors
who
were riskprior cancer, and fewer than one of five survivors reported a visit in
of survivors seen at a cancer center reported
0.5
older atsurvivor-focused
the time of interview
less likely
to of
have
received
which they discussed ways to reduce their risks. A concerning trend is
care were
(the highest
level
care
on the riskhierarchy)
based, survivor-focused
care.
As
might
be
expected,
survivors
who
evident when
0.4comparing data from the baseline survey with that from
12% of those seen in the community reported such care. Because
have already
developed
sequelae ofwill
their
(such as pain,
the 2003 survey: although the risk of developing a late effect of therapy
primary
care physicians
seecancer
few, iftherapy
any, childhood
cancer sur
0.3
1
anxiety, or a severe or life-threatening chronic condition) are more
increases as survivors grow older, the frequency of cancer-related
in their practice, their unfamiliarity with the specific health risks
0.2(42% v 32%) and of visits to a cancer center (19% v
likely to report having received risk-based, survivor-focused care. In
medical visits
by this population is a major barrier to appropriate survivor c
0.1 In essence, as risk increases, risk-based care decreases.
contrast, it seems that many asymptomatic survivors who are at risk of
15%) decreased.
However, it is unlikely that cancer survivor programs will be a
serious morbidity are not receiving the recommended surveillance.
The observation that most survivors do not receive appropriate
accommodate
theofgrowing
population
of adult survivors
0
5
15 of recommended
20
25Survivors’
poor knowledge
their prior
therapy is probably
a major of
risk-based medical
care is supported
by10the low rates
hood
Improvements
risk-based
care will require pr
contributor
tocancer.
such inadequate
care. Forin
example,
in a cross-sectional
surveillance tests to detect
lateFrom
effectsCancer
before they
become(years)
clinically
Interval
Diagnosis
ing primary care clinicians with the necessary resources (incl
evident. Among the participants who completed the 2003 survey and
information about their patients’ prior treatment, long-term
who Fig
were
at increased
risk for with
developing
orpast
breast
2. Percentage
of survivors
a visit to cardiomyopathy
a cancer center in the
2 years and
recommended screening practices, and bidirectional communi
cancer
as a result
of their
therapy,
only
511 (28%)
of 1,810
cumulative
incidence
of any
chronic
condition
by years
since participants
cancer diagnosis.
Community care (n = 7,276)
100 the cancer center)
with
tocenter/long-term
follow thisfollow-up
population.
and 169 (41%) of 414 participants had undergone a recommended
Cancer
program (n =Most
1,246) import
90
echocardiogram or mammogram, respectively, within the precedsurvivors must be familiarized with 81
their own risks and empowe
80
53
ing11%
2 years.
Among
female care,
respondents
on the general
baselinemedical
survey, care (a
70
advocate
for risk-based care.
reported
no medical
57% reported
70
64
62
only
62%
reported
a
clinical
breast
examination
in
the
preceding
vulnerable
medical visit unrelated to their prior cancer), 14% reported general
60 Several subgroups of patients are particularly
53
54
50
year.
Frequencies ofmedical
breast self-examination
and testicular
ceiving
inadequate or no medical care (Table 2). Of the 11%
survivor-focused
care (a medical(27%)
visit related
to their prior
50
self-examination
(17%)
were
similarly
low.
Although
the
efficacy
of
40
35
tients
in the CCSS30 cohort without health insurance,
29% rep
cancer), and 18% reported risk-based, survivor-focused medical
care
55,56
self-examination
in
the
general
population
has
been
questioned,
30
22
having received
no medical care in the preceding
2 years.53 In con
(a medical visit related to their prior cancer in which screening tests
20
these low rates in cancer survivors (in 1994 through 1995) are further
20
12 health insurance had not received m
11
were discussed or ordered or the survivor was counseled on how to
only
9% of survivors
with
10
evidence of the poor uptake of risk-based
care
strategies.
Because
reduce his/her specific risks).53 Consistent with the baseline study,
care
0 in the same period. Other groups at risk of receiving no
participants in the CCSS study have access to the newsletters, CCSS
General
Risk-based
Dental
EchoMammoincluded
male General
survivors
and survivors
with
household
incom
most
(89%)
reported
contact
withthe
theCCSS
medical
medical care survivorsurvivorvisit in
cardiogram
gram
Web
sitesurvivors
for questions,
and
furthersome
research
studies,
datasystem;
focused
focused
past
year
than $40,000 per year. Among survivors who did report some fo
however,
fewer than
third reported
an encounter
related
probably
overestimate
theone
risk-based
care received
by childhood
can-to their
care
care
medical care, black survivors, the uninsured, and survivors who
cancer,
and fewer than one of five survivors reported a visit in
cerprior
survivors
in general.
Careof
orinterview
Screeningwere
Testless
Received
older at the time
likely to have received
which
theythe
discussed
ways
to reduce
their risks.
concerning
Ideally,
receipt
medical
care Ashould
not betrend is
Nathan
et al.of
Jrisk-based
Clin
Oncol.
2009
based,
survivor-focused care. As might be expected, survivor
evident when
comparing
data
fromtheir
the baseline
that fromFig 3. Levels
contingent
on whether
survivors
receive
ongoingsurvey
care at awith
cancer
of medical care, dental care, and indicated screening practices (in
already
developed
the 2003
although the
risk
of developing
a late effect
of therapy
center
or in survey:
their community
from
a primary
care provider.
In fact,
high-risk have
groups)
by location
of care. sequelae of their cancer therapy (such as
1
¿Cómo hacer transferencia?
Planeaa
Coordinada
Multidisciplinar
Flexible
Modelos de cuidados
—  Oncólogo pediatra
—  Unidad de efectos a largo plazo especializada
—  Cuidado compartido
—  Transición a Unidad de adolescentes
—  Cuidado de atención primaria
—  Modelo basado en las necesidades
—  Información y educación a supervivientes y equipos
sanitarios sobre importancia de la continuidad de
cuidados de estos pacientes.
—  Establecimiento de planes de cuidados a largo
plazo
PASAPORTE
Dr. Poplack
—  USA 2003-2006 en Centro Oncológico Texas
Children´s y Facultad de Medicina de Baylor College
—  Soporte papelàherramienta informática
—  Resumen detallado del diagnóstico y tratamiento
—  Recomendaciones seguimiento adaptadas (COG)
Marc Horowitz
—  Dr. Poplack:
—  “Ofrece toda la información que el paciente necesita saber”
—  Da la oportunidad de compartir esta información con los
profesionales que participan en el cuidado del
pacienteà”cualquier médico se convierte en un experto en el
seguimiento de supervivientes de cáncer”
Cancersurvivor.passportforcare.org
•  Riccardo Haupt
•  Silvia Caruso
•  Francesca Bagnasco
• 
• 
• 
• 
Giulia Stabile
Maurizio Ortali
Davide Saraceno
Roberta Amato
IGG
CINECA
•  Sabine Karner
•  Anita Kienesberger
ICCPO
All partners of:
ENCCA: WP 13
PanCareSurFup: WP6
¿Qué podemos ofrecer
a los supervivientes?
Variable entre países y dentro de un mismo país
— Acceso a herramientas:
—  Resumen de tratamientos
—  Guías de seguimiento
—  Material informativo
— Personal que realiza el seguimiento:
—  Médico de atención primaria
—  Oncólogo médico
—  Oncólogo pediatra
— Personal de contacto: por ejemplo la existencia de
enfermera especializada
¿Qué debe ser el pasaporte?
PARTE 1: RESUMEN DEL TRATAMIENTO
- Documento que se dé a
cada paciente en el
momento de finalizar el
tratamiento, que contenga
información de la historia de
cáncer y tratamiento
DATOS&PERSONALES!
Nombre:!
!
F.!Nacimiento:!
NHC:!
Sexo:!
!!Hombre!
!!Mujer!
!!Otros!
DIAGNÓSTICO&
Diagnóstico:!
Estadio:!
- Soporte papel y/o
electrónico, escrito en forma
sencilla, con imágenes u
otros documentos médicos
relevantes.
F.!diagnóstico:!
Localización:!
!
!
Protocolo:!
Nombre:!
Fecha!inicio!de!tratamiento:!
Fecha!fin!de!tratamiento:!
¿Qué debe ser el
pasaporte?
—  Proporcionar consejos y guías para el
seguimiento específico a largo plazo de
posibles efectos tardíos
—  Traducido en todas las lenguas de UE
Poplack, D. G. et al. (2014) Childhood cancer survivor care: development of the
Passport for Care. Nat. Rev. Clin. Oncol. doi:10.1038/nrclinonc.2014.175
Database
Guías de
seguimiento
Pasaporte del
paciente
basado en
WEB
¿Por qué es necesario?
—  Transferir información a otros profesionales
—  Herramienta para los supervivientes
—  Conocer la historia médica
—  Los supervivientes podrían no estar enterados o no bien
informados del riesgo potencial de efectos a largo plazo
(o bien olvidarlo)
—  Conocer que hacer tras finalizar el tratamiento (qué,
cuando y por qué)
—  Los que entiendan mejor las razones, mejor adherencia a
estos programas
—  Educación sobre su propia enfermedad, optimización de
prevención y cuidados
Pediatr Blood Cancer 2015;62:859-866
Online tool demo
The Survivorship passport
Printable passport available
The survivorship passport data flow
Data Input
Passport
dedicated
database
Secure Web
Access rules
Clinical trials
databases
National/ Hospital
databases
Passport
Data
download
Experiencia
—  Evaluación a los 10 años de implantación del
pasaporte
—  Encuesta a médicos, enfermeras, trabajadores
sociales,etc.
—  64% de los encuestados
—  Facilidad de introducción de datos
—  Satisfacción:
—  Mejor comunicación con sus pacientes al hablar de los
E. 2º y dar recomendaciones de estilo de vida
—  Mejor transferencia de información
—  Adherencia
Poplack, D. G. et al. (2014) Childhood cancer survivor care: development of the Passport for Care
Nat. Rev. Clin. Oncol.
Conclusiones
—  Aumento supervivencia de niños y adolescentes con
cáncer à alto porcentaje de efectos a largo plazo
—  Necesidad del desarrollo y mejoras en los programas
de seguimiento, reconocidos como esenciales en la
continuidad de cuidados de estos pacientes: cuidado
clínico, soporte psicosocial, educación de pacientes,
familiares y profesionales de la salud, investigación
—  Diferentes modelos de cuidados y barreras
—  Herramientas para destruir barreras: guías de
seguimientos y creación pasaporte de cuidados
Conclusiones
—  Herramienta útil para los supervivientes:
información y recomendaciones
—  Profesionales sanitarios:
—  información
—  orientación sobre el riesgo potencial
—  Recomendaciones de seguimiento
—  Armonización de los cuidados a nivel mundial para
que todos tengan las mismas oportunidades de
acceso a programas de seguimiento individualizado
según el riesgo