CEQOL, 013108

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CEQOL, 01/31/08
The Brno Quality Of Life Longitudinal Study of
Pediatric Oncology Patients (qolop)
Tomá Kepák, Marek Blatný, Irena Vlcková, Milan
Pilát, Petra Navrátilová, Martin Jelínek, árka
Kárová, Jaroslav terba The Faculty Hospital
Brno, The Children's Medical Center, Brno Inst.
of Psychology, Czech Academy of Sciences,
Brno Masaryk University, Brno
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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 health-care and psychosocial support.

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Cure rates of childhood cancer
CNS Osteosarcoma Acute lymphoblastic leukaemia
All cancers Gonadal germ cell Hodgkins
100
80
60
5-year survival ()
40
20
0
196266
196771
197276
197781
198791
1982-86
1992-96
Year of treatment
SIGN, 2004 (http//www.sign.ac.uk/guidelines/fullt
ext/76/section1.html).
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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

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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)

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PRIZE for CURE ? survivorswell-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.

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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 .

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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, UptonEiser, Child
  Care Health Dev, 2006)

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www.qolop.eu
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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

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Methodological requirements

• methodology reflecting the multiple-sources
  multidimensional nature of quality of life
  (not only HR-QoL)
• longitudinal research design
• implementation of developmental approach (changes
  in the criteria of the quality of life over time)
• multi-informant perspective
• systems approach (family, siblings!)
• comparison with healthy population other
  chronic ill children

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qolop design...

• 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

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qolop design...

• 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.

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qolop design

• multi-informant perspective
• Information from physicians, children, parent(s)
• systems approach (family, siblings!)
• 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)

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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)

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Health and Wellness Questionnaire
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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)
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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
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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.

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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?

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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

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www.qolop.eu
Thank you for your attention!