Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations.

PURPOSE: Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care. METHODS: Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied. RESULTS: As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers' and care recipients' health status and duration of caregiving were negatively associated with caring experiences. CONCLUSIONS: Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving.

Differences in quality of antenatal care provided by midwives to low-risk pregnant dutch women in different ethnic groups.

INTRODUCTION: The objective of this study was to evaluate whether differences existed in the adherence to the Dutch national guidelines regarding basic antenatal care by Dutch midwives for low-risk women of different ethnic groups. METHODS: This was an observational study using data from electronic antenatal charts of 7 midwife practices (23 midwives), participating in the Generation R Study. The Generation R Study is a multiethnic, population-based, prospective, cohort study that is investigating the growth, development, and health of urban children from fetal life until young adulthood. The study is conducted in Rotterdam, The Netherlands. The antenatal charts of 2093 low-risk pregnant women with an expected birthing date in 2002 through 2004 were used to determine the mean quality of antenatal care scores for 7 ethnic groups. These scores reflected the degree of adherence to the guidelines regarding 10 tests and examinations. RESULTS: Few differences between ethnic groups were found in adherence to the guidelines that addressed the obstetric-technical quality of antenatal care. This finding applied more to nulliparous than to multiparous women. Adherence to guidelines was not always better in the antenatal care provided to native Dutch multiparous women when compared to other ethnic groups. Midwives adhered well to the guidelines regarding most tests. For all women, irrespective of ethnic background, hemoglobin was not measured as often as recommended, and this was especially the case for Moroccan, Surinamese-Creole, and Dutch-Antillean multiparous women. DISCUSSION: The poorer adherence regarding screening for hemoglobin needs further investigation, as women with African or Mediterranean heritage are more at risk for hemoglobinopathies. However, in general, midwives adhered well to the clinical guidelines regarding most tests irrespective of the ethnic background of the pregnant women. When differences were present, these were not systematically less favorable for non-Dutch pregnant women.