qolop: the brno quality of life longitudinal study of paediatric oncology patients. developmental...

QOLOP: THE BRNO QUALITY OF LIFE LONGITUDINAL STUDY OF PAEDIATRIC

ONCOLOGY PATIENTS. Developmental approach.

Tomas Kepak1, Marek Blatny2, Alena Slezackova 2, Irena Vlckova1, Kristina Tothova1, Martin Jelinek2, Veronika Sobotkova2, Milan Pilat3, Sarka Karova4, Hana

Hrstkova1, Jaroslav Sterba1

(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

“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

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

strategiesInternational cooperation

Project description•The Brno Quality of Life Longitudinal Study of Pediatric Oncology Patients (“qolop”)


“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

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

• 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


• 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

High Standard Low

Brain tu 58% 42% 0%

leukemia 8% 88% 4%

other solid tumors

23% 70% 7%


• 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 tumors Leukemiaother solid

tumors

88% 25% 57%


• 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)


Study 1 – comparison with healthy children and adolescents

Physical functioningCognitive functioningPsychological functioningSocial functioningIntimate relationshipsOutlook 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)

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)


CDI - subcales Group Mean SD

Negative mood O 0.22 0.24

H 0.38 0.34

C 0.37 0.35

Interpersonal problems O 0.18 0.25

H 0.22 0.31

C 0.19 0.24

Inefficiency O 0.48 0.35

H 0.64 0.46

C 0.54 0.44

Ahedonia O 0.29 0.27

H 0.41 0.32

C 0.38 0.25

Negative self-esteem O 0.32 0.26

H 0.44 0.36

C 0.49 0.34

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

8 - 12 y/o Diagnosis

Brain tumours leukemia other solid tumorsKruskal-Wallis

md md md χ2 p

Conventional involvement

0,63 0,61 0,50 0,74 0,69

Parenting – inconsistency

2,20 2,00 2,00 0,40 0,82

Parenting – involvement

3,17 2,92 3,18 1,68 0,43

Parenting – control

2,50 2,87 2,81 3,02 0,22

Parenting – warmth

3,70 3,60 3,60 0,34 0,84

Depressivness 1,28 1,34 1,30 0,62 0,73

Study 3 – Analysis according to main categories of diagnoses (children)

Sample: 147 children (70 boys, 77 girls) 8-18 y/o

MMQL Diagnosis

(8–12 y/o) Brain tumours leukemia other solid tumorsKruskal-Wallis

md md md χ2 p

Life satisfaction 3,20 3,25 3,44 0,48 0,79

Physical symptoms

1,42 1,50 1,45 0,32 0,85

Physical functioning

2,83 2,83 3,00 1,94 0,38

Psychological functioning

2,87 3,00 2,94 0,59 0,75


Study 3 – Analysis according to main categories of diagnoses (children)

13 - 19 y/o Diagnosis

CNS leukemia other solid tumorsKruskal-Wallis

md md md χ2 p

Conventional involvement

0,33 0,58 0,50 5,88 0,05

Parenting – inconsistency

2,20 2,10 2,00 0,20 0,65

Parenting – involvement

3,00 3,25 3,00 0,86 0,65

Parenting – control

2,13 3,31 2,75 9,05 0,01

Parenting – warmth

3,55 3,30 3,50 0,15 0,93

Depressivness 1,35 1,15 1,30 6,63 0,04


Study 3 – Analysis according to main categories of diagnoses (adolescents)

MMQL (13–18) Diagnosis

CNS leukemia other solid tumors Kruskal-Wallis

md md md χ2 p

Physical functioning

3,28 4,13 3,78 7,23 0,03

Cognitive functioning

3,67 4,11 4,00 1,48 0,48

Psychological functioning

3,94 4,17 3,89 3,49 0,17

Body image 3,67 4,50 4,00 10,15 0,01

Social functioning

3,83 4,50 4,00 8,34 0,02

Life satisfaction 3,33 4,17 4,33 10,06 0,01

Intimate relationships

3,25 4,00 3,75 7,65 0,02


Study 3 – Analysis according to main categories of diagnoses (adolescents)

• 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 …………


Conclusions

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

qolop: the brno quality of life longitudinal study of paediatric oncology patients. developmental...

Documents

university hospital

prospective longitudinal

upof late effects

endocrinological late

yearsseverity of late

stage mmql

time of qolop stage

moment of qolop stage