Marten J. Poley - Erasmus Universiteit Rotterdam

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54Chapter 4Outcome measuresThe patients or their parents were asked to complete both a symptom checklistcreated by ourselves and an existing generic HRQoL questionnaire. The formerserved to measure symptoms. A symptom is defined as a patient's perception ofan abnormal physical, emotional, or cognitive state. 13 Patients aged from 12years filled in the symptom checklist themselves. Parents filled in proxy versionsof the questionnaires on behalf of younger patients.Because of the rapid developmental change in children, different HRQoLquestionnaires had to be used for three age groups. These were the TNO-AZLInfant Quality of Life (TAIQOL) questionnaire (ages 1-4), the TNO-AZL Children'sQuality of Life (TACQOL) questionnaire (ages 5-15), and the MOS Short-Form 36(SF-36) questionnaire (ages 16+). The HRQoL questionnaires were selfadministeredfrom 16 years on.Symptom checklists. The symptom checklist for ARM patients was comprised ofseven items, among which were lack of urge sensation, inability to hold feces, theuse of aids for defecation and diapers, and urinary incontinence (see Table 4.1).The total symptom score ranges from 0 to 12, representing maximumsymptomatology. The CDH symptom checklist, covering 14 items, dealt withseveral respiratory difficulties and stomach problems (see Table 4.2). Again,higher scores correspond to more severe symptomatology, with a maximum scoreof 45.Table 4.1 Symptom Checklist for ARM PatientsItemReponse categories and scoring0 1 21. Soiling Never Sometimes One or moretimes per day2. Urge sensation Yes No3. Ability to hold feces 1 to 10minutes4. Ability to recognise the type of feces Yes(solid feces, liquid feces, or gas)10 to 60seconds5. Using therapeutic aids for defecation Never 2 to 3 times aweek6. Using diapers, pantyliners, and/or plugs Never On someoccasions7. Ability to hold urine Always Sometimes(at times an'accident')NoLess than 10secondsEvery dayEvery dayNeverTranslated version. The questionnaire we used was in Dutch.A symptom score was constructed using the sum of the numeric labels presented in the table.The total score ranges from 0 to 12, representing maximum symptomatology.
Short-Term and Long-Term Health-Related Quality of Life after ARM and CDH 55Table 4.2 Symptom Checklist for CDH PatientsItemReponse categories and scoring0 1 2 3 41. Respiratory difficulties * Never Sometimes Regularly Often Almostalways †2. Shortness of breath whenperforming heavy physicalactivities3. Shortness of breath whenperforming light physicalactivities4. Tightness of the chest duringsleep5. Having a cold or a stuffed-up orrunny nose6. Inflammation of the respiratorytract during the last yearNever Sometimes Regularly Often AlwaysNever Sometimes Regularly Often AlwaysNever Sometimes Regularly Often AlwaysNever Sometimes Regularly Often Chronically †Never Sometimes Chronically †7. Taking respiratory medications Never 2 to 3 timesper weekEvery day8. Experiencing constraints as aresult of respiratory difficultiesNever Sometimes Regularly9. Number of days per week withonly few respiratory difficultiesEverydayAlmost everyday3 or 4 days 1 or 2daysNo days10. Suffering from hiccupping (forexample, due to its intensity orduration)Never Sometimes Regularly Often Always11. Heartburn Never Sometimes Regularly Often Always12. Stomach ache Never Sometimes Regularly Often Always13. Other stomach complaints Never Sometimes Chronically †14. Suffering from chronicobstructive pulmonary disease orallergic reactions of therespiratory tractNoYes*†Translated version. The questionnaire we used was in Dutch.The numeric labels shown in the table were summed to arrive at a symptom score. Higherscores correspond to more severe symptomatology, with a maximum score of 45.Six different respiratory difficulties (i.e., 1) non-productive coughing, 2) sputum retention,3) coughing up sputum when waking up, 4) coughing involving significant sputumproduction, 5) wheezing, and 6) wheezing and tachypnea), all using these responsecategories. In the symptom score we used the average score of these six symptoms.The respondents were instructed that 'almost always' or 'chronically' meant 5 or more daysper week during the past three months.
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COST-EFFECTIVENESS OF NEONATAL SURG
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DOCTORAL COMMITTEEPromotors:Prof.dr
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PUBLICATIONSChapters 2 to 7 are bas
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6ChapterINFORMAL CARE FOR CHILDREN
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2Chapter 11.1 BACKGROUND AND MOTIVA
Page 16 and 17: 4Chapter 1provides a good overview
Page 18 and 19: 6Chapter 1disability, and death of
Page 21: Introduction 9particular equity pri
Page 25 and 26: Introduction 1320. Oostenbrink JB,
Page 27 and 28: Introduction 1554. Heyman MB, Harma
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Page 52 and 53: 40Chapter 3child's date of birth) a
Page 54 and 55: 42Chapter 3diaphragm was closed (Ta
Page 56 and 57: 44Chapter 3Total costs of treatment
Page 58 and 59: 46Chapter 3Regarding the treatment
Page 60 and 61: 48Chapter 3REFERENCES1. Stolk EA, P
Page 62 and 63: 50Chapter 332. Jaillard S, Pierrat
Page 64 and 65: 52Chapter 4ABSTRACTAims:To examine
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Page 70 and 71: 58Chapter 4The respondents did not
Page 72 and 73: 60Chapter 4Table 4.4TAIQOL Scores o
Page 74 and 75: 62Chapter 44.4 DISCUSSIONIn this pa
Page 76 and 77: 64Chapter 4ACKNOWLEDGMENTSWe are in
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Page 80 and 81: 68Chapter 5ABSTRACTObjective:Extrac
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Page 88 and 89: 76Chapter 5Table 5.3 Direct Medical
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Page 92 and 93: 80Chapter 5severely ill newborns—
Page 94 and 95: 82Chapter 5REFERENCES1. Bartlett RH
Page 96 and 97: 84Chapter 533. Meinert CL: Extracor
Page 98 and 99: 86Chapter 568. Hui TT, Danielson PD
Page 100 and 101: 88Chapter 6ABSTRACTObjective:To inv
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Page 104 and 105: 92Chapter 6Regression analysis of h
Page 106 and 107: 94Chapter 6that caregiving for thei
Page 108 and 109: 96Chapter 6Table 6.5 CareQol Compar
Page 110 and 111: 98Chapter 6children with a disabili
Page 112 and 113: 100Chapter 6This study was of impor
Page 114 and 115: 102Chapter 618. Poley MJ, Stolk EA,
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104Chapter 654. Boman KK, Viksten J
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106Chapter 7ABSTRACTMortality rates
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108Chapter 77.2 THE RELEVANCE OF CO
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110Chapter 7In the early 2000s, our
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112Chapter 7Table 7.1 Economic Eval
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114Chapter 7More from a policy pers
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116Chapter 7also expect that life-s
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118Chapter 7entirely justified, for
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120Chapter 723. Sydorak RM, Nijagal
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122Chapter 765. Glaser AW, Davies K
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GENERAL DISCUSSION:A GUIDED TOURPRO
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General Discussion: A Guided Tour P
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142GlossaryCharge (or: tariff)A pri
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144Glossaryefficient one. We are th
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SUMMARY
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Summary 149mortality. Finally, it i
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Summary 151neonatal surgery. It is
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SAMENVATTING
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Samenvatting 155zoals directe niet-
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Samenvatting 157Hoofdstuk 6 gaat ve
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Samenvatting 159vereisen, waarvoor
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162AcknowledgmentsAlthough I am ind
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About the AuthorBorn in De Meern (N
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Marten J. Poley - Erasmus Universiteit Rotterdam

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