Child and parental adaptation to pediatric oncology Vrijmoet-Wiersma, J.

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Child and parental adaptation to pediatric oncology

Vrijmoet-Wiersma, J.

Citation

Vrijmoet-Wiersma, J. (2010, January 14). Child and parental adaptation to pediatric oncology. Retrieved from https://hdl.handle.net/1887/14561

Version: Corrected Publisher’s Version

License: Licence agreement concerning inclusion of doctoral thesis in the Institutional Repository of the University of Leiden Downloaded

from: https://hdl.handle.net/1887/14561

Note: To cite this publication please use the final published version (if applicable).

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Table 1. Description of LCH Study Group

No. Sex /Age

(years) System involved

Age at diagnosis (years)

Duration treatment (years)

Years since end treatment

CNS Involve- ment

DI Chemo

therapy Permanent consequences

1 M /10 Skin, Pituitary, GI, Liver * 2 3 5 + + + Growth hormone deﬁ ciency, vision

problems

2 F / 16 Pituitary 15 1 0 - + - Fluid balance problems

3 M / 9 Bone 4 3 2 - - - Muscle pains

4 M /11 Bone, Skin 2 9 0 - - + Hearing problems

5 M / 9 Bone, Liver * .9 1 0 - - + Back pain

6 F / 12 Bone 3 8 1 - - + Headache, fatigue

7 M / 17 Bone, Pituitary, Skin 1 1 15 + + + -

8 M / 11 Skin .6 10 1 - - - -

9 F / 10 Bone 1 2 7 - - + Obesity

10 M /10 Bone 9 0.5 1 - - - -

11 M / 10 Bone, Lymph nodes, GI 4 0.5 6 - - - -

12 M / 13 Skin 1 0.3 12 - - - Lung-, bladder- and ear infections

13 F / 10 Bone, Skin .3 0.5 9 - - + -

14 F / 10 Bone, Skin 3 7 1 - + + Wheezing, does not go outside

15 M / 16 Bone, Sinuses, Mouth 2 2 13 + - + Behavior problems

16 M / 9 Bone 6 0.5 3 - + + Skin problems

17 F / 7 Bone, Skin, GI .9 1 7 - + + Vaginal discharge, fatigue

18 M / 14 Bone, Brain * 2 1 12 + + + Infections of ear, bronchia & teeth.

Headaches

19 M / 13 Bone, Skin, Mouth, Liver,

Kidney * .1 7 6 - - + Headaches

20 M / 8 Bone 1 0.5 7 - - + -

21 F / 16 Bone 16 1 0 - - + Fatigue, obstipation, infections

22 M / 9 Bone, Skin 1 1 8 - - - Bumps on the skull

23 M / 11 Bone, Lymph nodes 8 1 3 - - - -

24 M / 10 Bone, Skin, GI, Brain * .4 3 7 + + + Growth hormone deﬁ ciency, obesity

M 11.9 SD 2.9

M 3.4 SD 4.5

M 2.7 SD 3.0

M 3.4 SD 3.2

+ 5 (20.8%)

+ 8 (33.3%)

+ 16 (66.7%) CNS, Central Nervous System; DI, Diabetes Insipidus; GI, gastro-intestinal; * Risk organs

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Table 2. IQ-subtest scores

WISC III-NL Subtest Norm score*

Mean (SD)

-1 SD N (%) Information (general factual knowledge & long-term

memory)

9.8 (3.7) 6 (25)

Coding (visual motor coordination, speed &

concentration)

8.3 (3.2) 9 (38)

Arithmetic (attention, concentration & numerical reasoning

9.7 (3.1) 6 (25)

Digit Span (short-term auditory memory &

concentration)

12.1 (4.4) 4 (17)

Number of subtests ≤ 1 SD N (%)

0 subtest 11 (46)

1 subtest 7 (29)

2 subtests 2 (8)

3 subtests 4 (17)

WISC III-NL, Wechsler Intelligence Scale for Children, Dutch version;

* Norm scores range from 0-20, the average score lies between 7 and 13.

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Table 3. Problem behavior reported by children, parents and teachers

Parents (N=24) (CBCL)

Mean (SD) Clinical N (%)

Teachers (N=22) (TRF)

Mean (SD) Clinical N (%)

Children (N=14) (YSR)

Mean (SD) Clinical N (%) Internalising

behavior Sample Norm group

10.17 (8.2) * 4.5 (4.3)

9 (30) 7

9.8 (9.7) * 5.0 (5.6)

7 (32) 7

10.4 (5.1) 8.4 (5.5)

1 (7) 7 Externalising

behavior Sample Norm group

6.6 (5.3) 8,2 (6.3)

1 (4) 7

7.3 (10.2) 6.7 (8.4)

4 (17) 7

11.0 (7.1) 11.2 (6.4)

2 (14) 7 Total problems

Sample Norm group

31.5 (20.4) * 21.3 (14)

4 (14) 7

32.4 (29.1) 21.9 (21.4)

5 (23) 7

30.4 (13.8) 32.8 (16.3)

0 (0) 7

CBCL, Child Behavior Checklist; TRF, Teachers Report Form; YSR, Youth Self Report; * Signiﬁ cant difference with the norm group (p ≤ .05); Clinical, scores above the 93^rd percentile; Signiﬁ cant differences with the norm group (p ≤ .05) are printed in bold.

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Items and scores of the LHC DUX

Item Mean score*

Having to take medications, I ﬁ nd… 35**

1.

Not being able to play with other children makes me feel… 15**

2.

Giving a class presentation about ICD is… 56 3.

How the doctors speak with me, I ﬁ nd… 58 4.

How my parents deal with my LCH, I think is… 70 5.

Doing what the doctor says I ﬁ nd… 52 6.

About my LCH I often feel… 45

7.

Not being able to go to school because of my LCH is… 21**

8.

Compared to other children, I feel… 29**

9.

Talking about LCH with other children I ﬁ nd… 41 10.

Taking medication in front of others I ﬁ nd… 46 11.

Later, when I’ll be older, my LCH will be… 67 12.

Going to the hospital is… 44

13.

When I am visiting someone I feel… 85

14.

At this moment I think about my LCH as… 48 15.

What I know about LCH is… 56

16.

Explaining LCH to others is… 41 17.

At school my LCH is… 72

18.

At home my LCH is… 74

19.

Doing sports for me is… 72

20.

Taking a rest in the daytime is… 46

21.

Having to do everything on time is… 56 22.

Total score LCH DUX child form 59 (SD 14)

* Scores range from 0-100, a higher score means a higher quality of life; **

1 SD or more below the total mean score

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Child and parental adaptation to pediatric oncology Vrijmoet-Wiersma, J.