1. QOLOP: THE BRNO QUALITY OF LIFE LONGITUDINAL STUDY OF PAEDIATRIC ONCOLOGY PATIENTS. Developmental approach. Tomas Kepak 1, Marek Blatny 2, Alena Slezackova 2, Irena Vlckova 1, Kristina Tothova 1, Martin Jelinek 2, Veronika Sobotkova 2, Milan Pilat 3, Sarka Karova 4, Hana Hrstkova 1, Jaroslav Sterba 1 (1) University Hospital Brno, Paediatric Oncology, Brno, Czech republic (2) Czech Academy of Sciences, Institute of Psychology, Brno (3) University Hospital Brno, Paediatric Psychiatry and Clinical Psychology, Brno (4) Masaryk University, Institute of Psychology, Brno, Czech republic 7th PanCare Meeting Brno, April, 2011

2. “qolop” project description “qolop” = quality of life longitudinal study of paediatric oncology patients = prospective longitudinal study, designed to meet contemporary requirements on research methodology Aims to reflect changes in QoL during the time Complex study design in terms of health, social and educational issues, parental-child relationship etc. Focus both on positive and negative outcomes (stress, PTSD, PTG) Research data as a base for future preventive and interventional strategies for Czech/Slovak survivors Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients

3. Longitudinal follow-up of late effects of the treatment - qolop Parents Siblings - Acute needs Reha- bilitation QoL during active treatment QoL in palliative setting Coping strategies International cooperation Project description The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients (“qolop”) Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients

4. “qolop” questionnaire set Methods / Domains: MMQL: health related QoL Modified SQUALA: values + life satisfaction CDI: emotion, depression scale SAHA: –daily routine, activities –abusus –parent – child intearctions HBSC: dietary habits, physical activity Social support measure (based on several scales) NEO-FFI: personality Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patientsc

5. Health and Wellness questionnaire Versions for age brackets: 8 – 12 years 13 – 18 years „mini“ version Parents: - QoL of the child - impact on family life

6. Criteria: 2 – 5 years in remission, 8 – 18 years old Follow-ups: fixed age levels (12, 15, 18, 21, 25 yrs) Asessement: The study was launched in November 2006 229 childhood cancer survivors enrolled (118 M, 111 F) Controls:154 children with chronic diseases (asthma, locomotor diseases), 869 healthy controls Compliance: 97% – single institution study Longitudinal QoL assesment Particular research studies 1st stage MMQL, SQUALA (+ medical data) Broad spectrum of baseline data 2nd stage - PTSD/PTG - Depresivity/coping Sample and assessment plan Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patientsc

7. diagnoses: acute leukemia (26%), brain tumours (18%), extracranial solid tumours (54%) Risk of late effects development: low (5%), standard (70%), high (25%). FU 4.0 years Severity of late effects at the moment of qolop stage 1 assesment: no late effects (46%), mild (28%), moderate (28%), severe (12%). Sample (n=191) Risk of LTE development according to Dg. group HighStandardLow Brain tu58%42%0% leukemia8%88%4% other solid tumors 23%70%7% Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patientsc

8. Endocrinological late effects including growth problems, hypothyreosis, obesity amputations Vision impairment, hearing impairement Neurocognitive impairement Organopaties (kidney, lung, heart etc.) Sample Late effects present at the time of qolop stage 1 assesment (FU 4.0 years) Brain tumorsLeukemia other solid tumors 88%25%57% Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patientsc

9. Sample: 91 children and adolescents (44 M, 47 F), age 8-18 Healthy controls (matched by sex and age, 3 random controls/1 survivor) - MANOVA Variables: –Conventional involvement –Parent-child ineractions Parental INVOLVEMENT Parental CONTROL Parental WARMTH INCONSISTENCY of parenting –Depressivity –MMQL ( 8-12 y/o ) MMQL ( 13-18 y/o) Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients Study 1 – comparison with healthy children and adolescents Physical functioning Cognitive functioning Psychological functioning Social functioning Intimate relationships Outlook on life Physical symptoms (e.g. I am having headaches) Physical functioning (e.g. I have enough energy) Psychological functioning (e.g. I feel lonely) Outlook on life (e,g, I am satisfied with the things how they are)

10. Results summary – study 1 (n=91) QoL of child cancer survivors is not markedly decreased in comparison with healthy children  - conventional involvement (both age groups) - physical functioning (8-12 years) ------------------------------------------------------------------------------  - parent-child relationships (both age groups) - emotional well-being/level of depressivness (13-18 yrs) - cognitive functioning (13-18 years) - overall life satisfaction (13-18 years) Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients

11. CDI - subcalesGroupMeanSD Negative moodO0.220.24 H0.380.34 C0.370.35 Interpersonal problemsO0.180.25 H0.220.31 C0.190.24 InefficiencyO0.480.35 H0.640.46 C0.540.44 AhedoniaO0.290.27 H0.410.32 C0.380.25 Negative self-esteemO0.320.26 H0.440.36 C0.490.34 The influence of age: Both age brackets Older age bracket only Sample: same as in the study 1 (91 children and adolescents cancer survivors) 2 control groups – healthy children (273) and chronically ill children (148) Study 2 – analysis of depressivity

12. 8 - 12 y/o Diagnosis Brain tumoursleukemiaother solid tumors Kruskal- Wallis md χ2χ2 p Conventional involvement 0,630,610,500,740,69 Parenting – inconsistency 2,202,00 0,400,82 Parenting – involvement 3,172,923,181,680,43 Parenting – control 2,502,872,813,020,22 Parenting – warmth 3,703,60 0,340,84 Depressivness1,281,341,300,620,73 Study 3 – Analysis according to main categories of diagnoses (children) Sample: 147 children (70 boys, 77 girls) 8-18 y/o

13. MMQL Diagnosis (8–12 y/o) Brain tumoursleukemiaother solid tumors Kruskal- Wallis md χ2p Life satisfaction3,203,253,440,480,79 Physical symptoms 1,421,501,450,320,85 Physical functioning 2,83 3,001,940,38 Psychological functioning 2,873,002,940,590,75 Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients Study 3 – Analysis according to main categories of diagnoses (children)

14. 13 - 19 y/o Diagnosis CNSleukemiaother solid tumors Kruskal- Wallis md χ2χ2 p Conventional involvement 0,330,580,505,880,05 Parenting – inconsistency 2,202,102,000,200,65 Parenting – involvement 3,003,253,000,860,65 Parenting – control 2,133,312,759,050,01 Parenting – warmth 3,553,303,500,150,93 Depressivness1,351,151,306,630,04 Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients Study 3 – Analysis according to main categories of diagnoses (adolescents)

15. MMQL (13–18) Diagnosis CNSleukemiaother solid tumors Kruskal- Wallis md χ2 p Physical functioning 3,284,133,787,230,03 Cognitive functioning 3,674,114,001,480,48 Psychological functioning 3,944,173,893,490,17 Body image3,674,504,0010,150,01 Social functioning 3,834,504,008,340,02 Life satisfaction3,334,174,3310,060,01 Intimate relationships 3,254,003,757,650,02 Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients Study 3 – Analysis according to main categories of diagnoses (adolescents)

16. QoL of cancer survivors doesn´t differ much compared to healthy children and adolescents, in some areas cancer survivors report even better QoL (PTSD +/- PTG) Brain tumour survivors most impacted Most differences in QoL (both among dg. groups as well as compared to healthy controls) in older age bracket (adolescents – 13-18 y/o) They differ mainly in social functioning & intimate relationships (including satisfaction with her/his body development) as well as in physical functioning (including conventional involvement) Low level of depressivity – ambiguity of the interpretation QoL is a dynamic variable, changes over the time, necessitating an individual approach respecting a developmental stage of each given individual QoL depends on presence/severity of late effects Further research needed ………… Kepak, Blatny et al.: The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients Conclusions

17. PanCare QoL Longitudinal survey? Is there a need of study on QoL within PanCare/ENCCA umbrella? Background: Paucity of longitudinal studies x most appropriate setting Brno expertise (Czech Academy of Sciences, Institute of Psychology) –Qolop since 2006 (250) –SAHA (national probability sample 5000) –Lifespan development since 1961 Plan for Amsterdam PanCare meeting? - methods? (e.g. MMQL based?) - willing to participate (on-line questionnaire to PanCare members?) - multicenter study x national samples? ……plenary discussion