Download qolop - CEQOL

CEQOL, 01/31/08
The Brno Quality Of Life Longitudinal
Study of Pediatric Oncology Patients
(“qolop”)
Tomáš Kepák, Marek Blatný, Irena Vlčková,
Milan Pilát, Petra Navrátilová, Martin Jelínek,
Šárka Kárová, Jaroslav Štěrba
The Faculty Hospital Brno, The Children's Medical Center, Brno
Inst. of Psychology, Czech Academy of Sciences, Brno
Masaryk University, Brno
Childhood cancer survivors
• The likelihood of a 5-year survival has increased from
less than 30% in 1960 to more than 80% today.
• The paradigm in paediatric oncology has changed:
towards current expectation of “cure” and survival
into adulthood  cancer in children is now perceived
to be a chronic disease.
• Thus, childhood cancer survivors represent a growing,
at-risk population with a need of specialized healthcare and psychosocial support.
Cure rates of childhood cancer
5-year survival (%)
100
All cancers
Gonadal germ cell
Hodgkin’s
CNS
Osteosarcoma
Acute lymphoblastic leukaemia
80
60
40
20
0
1962–66 1967–71 1972–76 1977–81 1982-86 1987–91 1992-96
Year of treatment
SIGN, 2004 (http://www.sign.ac.uk/guidelines/fulltext/76/section1.html).
Main causes of success in PO
• Multidisciplinary and centralized approach to the
treatment
• Consecutive clinical trials leading to a gradual
optimalisation of treatment regimens
• Advances in chemotherapy and irradiation techniques
• Advances in supportive care
– Antimicrobial treatment and haematology
supportive care
– Psychosocial support concurrently with surgery,
irradiation and chemotherapy
Quality of Life
• Along with the increasing cure rates the QUALITY of
SURVIVAL instead of the survival itself has become
the marker of cancer treatment success.
• Survivors experience a spectrum of cancer-related
morbidity that affects both physical and mental
health.
• 2/3 of childhood cancer survivors suffer from at least
one of serious late sequalae of the cancer treatment!
(Geenen, JAMA, 2007, Oeffinger, NEJM, 2006)
PRIZE for CURE  survivors´well-being
• Physical problems
– Growth
– Fertility
– Organ function impairements
(heart, lungs, kidneys etc.)
– Physical restrictions
– Risk of premature onset of
common conditions
associated with aging (e.g.
Diabetes mellitus,
cardiovascular disease,
hypertension,
hyperlipidemia)
– Risk of premature death
• Psychosocial and
Educational problems
–
–
–
–
–
–
–
–
–
–
–
PTSD
Learning, memory
Educational achievement
Lack of self-confidence
Compromised opportunities
Social isolation
Social competence
Lower self-image
Lower marital rates
Underemployment
Independent living etc.
Paediatric Onco-Psychology
• There is a continuing international cooperation in
Paediatric Oncology (SIOP, COG, UKCCSG, BFM, SFOP
…), focusing on late effects and QoL issues.
• QoL is currently being implemented to the clinical
trials as the important end-point of new clinical trials
(Hodgkins, sarcomas etc.).
• A new research area “Onco-Psychology” has been
established.
HOWEVER ….
QoL research challenges
• Still a paucity of research on QoL in children cancer
survivors
 Prospective longitudinal studies are vital!
 Complex study design in terms of health, social and
educational issues, parental-child relationship etc.
• Much of the current research with sufficient sample
size, appropriate age- and gender-matched controls
is prevalently retrospective and focused on particular
determinants
(Barrera M. et al, Cancer 2005, De Clercq, J Ped Psych, 2004,
Oeffinger K., NEJM 2006, Upton&Eiser, Child Care Health Dev,
2006…)
www.qolop.eu
Research on childhood cancer survivors
•
current research on the quality of life
in children with cancer is facing
methodological problems
(Eiser, Hill, Vance, 2000, Wallace et al., 2001,
Patenaude, Kupst, 2005, Last, Grootenhuis, Eiser,
2005)
•
„qolop“ project designed to meet
contemporary requirements on
research methodology
Methodological requirements
1.
methodology reflecting the multiple-sources &
multidimensional nature of ‘quality of life’
(not only HR-QoL)
2.
longitudinal research design
3.
implementation of developmental approach (changes
in the criteria of the quality of life over time)
4.
multi-informant perspective
5.
systems approach (family, siblings!)
6.
comparison with healthy population & other chronic
ill children
„qolop“ design...
1.
multidimensional nature of ‘quality of life’


MMQL (Bhatia et al., 2002, Bhatia et al., 2004)
•
Objective indicators: mobility, sensory functions
•
Subjective indicators: moods and feelings, life satisfaction
Methods measuring other determinants of QoL besides
health:
•
child personality (temperament)
•
parent/child relationships
•
friends
•
social support in general
…„qolop“ design...
2.
longitudinal design & developmental approach

Original method controlling sources of QoL:
children assess not only satisfaction, but also
importance (value) of life domains – 30 domains
How important is for you…
…to be healthy, to have good relationships with people, etc.
How are you satisfied with your…
…health, relationships with people etc.
…„qolop“ design
3.
multi-informant perspective

Information from physicians, children, parent(s)
4.
systems approach (family, siblings!)
5.
comparison with healthy population & other
chronic ill children

Expected sample size = 300 children
(criteria: 2 – 5 years in remission, 8 – 18 years old)

Will be compared with 300 healthy children and 300
chronic ill children (e.g. asthma)
Health and Wellness Questionnaire
A version for survivors and for parents/guardians
Administered under standard circumstances
Time for completion 45-60 minutes
Components / Domains:
•
•
•
•
•
MMQL (HRQoL)
HBSC (dietary habits, physical activities)
CDI (emotion, depression scale)
Modified SQUALA (values + life satisfaction)
SAHA (daily routine, activities, abusus, academic
•
•
achievement, family and social relationships)
Social support measure (based on several scales)
NEO-FFI (personality)
Health and Wellness Questionnaire
Study progress of the „qolop“
project
2005 – Interdisciplinary working party for quality of life of
children with chronic diseases established in Brno
2006 – the QOLOP (Health and Wellness) Questionnaire
constructed
- commencement of the accrual (11/11/06)
2006-2008 Neurocognitive functioning in children cancer
survivors (Czech Science Foundation – GACR, No.
406/05/0603)
2007-2010 Quality of life in children surviving cancer
(Czech Science Foundation – GACR, No. 406/07/1384)
Study progress of the „qolop“
project
2007 – Center for Quality of Life Clinical Research, Masaryk
University in Brno & Czech Academy of Sciences CEQOL (www.ceqol.cz)
- collaboration with other centers in the Czech
Republic (Prague) and Slovakia (Bratislava)
2008  International collaboration:
Interdisciplinary Research Collaboratory on Cancer
and Children (IRCCC), coordinated by Christine and
Richard Eiser, University of Sheffield, UK
Study progress of the „qolop“
project
Current status (12/2007):
•
53 childhood cancer survivors assessed,
•
80 children and adolescents with chronic diseases
(asthma bronchiale, locomotor diseases),
•
200 matched controls.
350
300
accrual
250
200
150
100
50
0
1_1
1_2
1_3
1_4
1_5
1_6
1_7
1_8
1_9 1_10 1_11 1_12 2_1
2_2
2_3
2_4
2_5
2_6
2_7
time
2_8
2_9 2_10 2_11 2_12 3_1
3_2
3_3
3_4
3_5
3_6
3_7
3_8
3_9 3_10 3_11 3_12
Study progress of the „qolop“
project
Too early to draw conclusions regarding QoL
Excellent compliance: 53/55 entered (96%)
Future directions:
Validation and standardization of methods (CZE, SK)
2008-2009
QoL not only in survivors but also during treatment
(assessment since diagnosis; palliative setting)
since 2009
benefits - post traumatic growth
-
Pediatric oncology as a potential model for adult
oncology and possibly for other chronic diseases?
The „qolop“ prospective outcomes
•
Therapeutic modifications to reduce cancer-related
morbidity
•
Survivor education based on individual specific
treatment risk
•
Fact sheets and educational materials for patients
and their parents
•
Interventions to enhance resilience following
cancer experience
•
Reccommendations for healthy lifestyle behaviors
•
Educational programmes and materials for
caregivers - physicians, nurses, psychologists,
teachers
Thank you for your attention!
www.qolop.eu