Online veröffentlicht: 5. Juni 2024 ; Gesehen am 22.01.2025
childhood interstitial lung disease; health related quality of life
Introduction Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health-related quality of life (HrQoL) in chILD has become increasingly important in clinical care and research. The aim of this study was to assess differences between patient-reported (self) and caregiver-reported (proxy) HrQoL scores. Methods This study used data obtained from the chILD-EU Register. After inclusion (baseline), the patient's health status was followed up at predefined study visits. At each study visit, caregivers and patients were handed validated, age-specific HrQoL questionnaires. HrQoL data entered at baseline were used to compare self- and proxy-reported HrQoL scores. For the longitudinal analysis, we compared HrQoL scores between the baseline and the next follow-up visit. Results No differences between patient- and caregiver-reported HrQoL scores were found for school functioning, chILD-specific questionnaire score, and physical health summary score. Self-reported HrQoL scores were higher for the subscales emotional functioning (77.4 vs. 70.7; p < .001), social functioning (81.9 vs. 76.2; p < .001), as well as psycho-social summary score (76.5 vs. 71.8; p < .001) and total score (74.7 vs. 70.8; <.001). The longitudinal analysis showed that a significant change in a patient-reported HrQoL score resulted in a significant change in a caregiver-reported HrQoL score after a mean time of 11.0 months (SD 9.4). Conclusions We found a good agreement between children- and caregiver-related HrQoL scores. In chILD, caregivers are able to sense changes in children's HrQoL scores over time and may be used as a proxy for children unable to complete HrQoL questionnaires.
Pediatric pulmonology New York, NY [u.a.] : Wiley-Liss, 1985 59(2024), 10 vom: Okt., Seite 2572-2579 Online-Ressource
von Raymond Voltz ; Gloria Dust ; Nicolas Schippel ; Stefanie Hamacher ; Sheila Payne ; Nadine Scholten ; Holger Pfaff ; Christian Rietz ; Julia Strupp ; Lena Ansmann
adult palliative care; change management; quality in health care
Objectives To set up a pragmatic Plan-Do-Study-Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life. - Design Cross-sectional postbereavement survey. - Setting Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany. - Participants 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded. - Results For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71). - Conclusions Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements. - Trial registration number DRKS00011925.
BMJ open London : BMJ Publishing Group, 2011 10(2020,11) Artikel-Nummer e035988, 10 Seiten Online-Ressource
