Marten J. Poley - Erasmus Universiteit Rotterdam

Informal Care for Children Born with Major Congenital Anomalies 91Caregiving and forgone activitiesWe investigated whether or not it was the parents' impression that their childdemanded above-average care and, if so, using an open-ended question, whatactivities were involved. The parents were questioned about the amount of extrahours spent per week on caregiving compared with other children of the sameage. Moreover, we studied whether the parents had to forgo paid work andunpaid activities, expressed as number of hours per week, in order to provideinformal care. These questions were taken from a preliminary version of theHealth and Labor Questionnaire. 28Measuring parents' health-related quality of lifeGeneric HRQoL measures—encompassing physical, mental, and social domains—are common and easy-to-use measures that apply to a wide range of conditionsor populations. 29,30 We aimed at applying an easy-to-use, straightforwardinstrument to measure informal caregivers' HRQoL. The parents were administeredthe EQ-5D questionnaire. In the EQ-5D approach, HRQoL is conceptualized ashaving physical, mental, and social domains. The parents were first asked toclassify their health on the EQ-5D descriptive system. 31 This involved respondersclassifying themselves on five dimensions of health, each with three levels ofdysfunction: mobility, self-care, usual activities, pain/discomfort, andanxiety/depression. This 'descriptive system' generates 243 theoretically possiblehealth states. Building on earlier work in the UK that elicited valuations for asubset of health states from a general population sample, Dolan published a valueset for all the possible health states using modeling techniques. 32 This resulted inan index that assigned a value 1 to normal health and 0 to death. We calculatedthe parents' EQ-5D index scores using this model. These scores were comparedto age- and sex-specific scores elicited in the general population. 33 Differenceswere considered significant if P is less than 0.05.Second, the parents were asked to rate their current health state on the EQ-VAS,a 20 cms vertical rating scale calibrated from 0 (worst imaginable health state) to100 (best imaginable health state). 31 This provided information on their selfassessedHRQoL and the scores were also compared to general populationratings. 33Third, the parents rated their health state on the EQ-VAS on the assumption thatsomeone will take over their informal caregiving activities completely and free ofcharge, so that they will no longer have to spend time on their current caregivingtasks. This hypothetical scenario will hereafter be cited within the text as theCareQol scenario or the CareQol scale.More details on the EQ-5D descriptive system and the EQ-VAS are availablethrough http://www.euroqol.org.