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M. Simons R. Kimble S. McPhail Z. Tyack 《Burns : journal of the International Society for Burn Injuries》2019,45(8):1792-1809
BackgroundThe measurement of health-related quality of life (HRQoL) provides information about the perceived burden of the health condition and treatments from a lived experience. The Brisbane Burn Scar Impact Profile (caregiver report for young children, BBSIP0–8), developed in 2013, is a proxy-report measure of burn scar-specific HRQoL. The aim of this study was to report its psychometric properties in line with an evaluative purpose.MethodsCaregivers of children up to 8 years of age at risk of burn scarring were recruited into a prospective, longitudinal cohort study. Caregivers completed the BBSIP0–8, Pediatric Quality of Life Inventory and Patient Observer Scar Assessment Scale at baseline (approximately ≥85% of the total body surface area re-epithelialised), 1–2 weeks after baseline and 1-month after baseline. Psychometric properties measured included internal consistency, test–retest reliability, validity and responsiveness.ResultsEighty-six caregivers of mostly male children (55%), of a median age (IQR) of 1 year, 10 months (2 years, 1 month) and total body surface area burn of 1.5% (3.0%) were recruited. Over one third of participants were grafted and 15% had contractures or skin tightness at baseline. Internal consistency of ten item groups ranged from 0.73 to 0.96. Hypothesised correlations of changes in the BBSIP0–8 items with changes in criterion measures supported longitudinal validity (ρ ranging from ?0.73 to 0.68). The majority of item groups had acceptable reproducibility (ICC = 0.65–0.83). The responsiveness of five item groups was supported (AUC = 0.71–0.90).ConclusionThe psychometric properties tested support the use of the BBSIP0–8 as an evaluative measure of burn scar-related health-related quality of life for children aged below eight years in the early post-acute period of rehabilitation. Further investigation at longer time period after burn injury is indicated. 相似文献
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Judith Brock Andreas Schmid Thomas Karrasch Petra Pfefferle Jutta Schlegel Inga Busse Annette Hauenschild Barbara Schmidt Maria Koukou Efthymia Arapogianni Andreas Schultz Miriam Thomalla Secil Akinci Johannes Kruse Winfried Padberg Andreas Schffler Jens Albrecht 《Clinical endocrinology》2019,91(3):400-410
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Patients have become increasingly well informed with higher expectations to be involved in decision-making processes regarding their care and treatment. However, few studies have examined the impact of patient involvement on health care providers’ partnership-building communication. The aim of this study was to measure and explore the self-reported effects of patient involvement on the work of physicians and nurses. A questionnaire survey was distributed among cardiology staff in 12 Swedish hospitals (N = 488, response rate 67%). The sample was comprised of registered nurses (RNs, n = 303), licensed practical nurses (LPNs, n = 132), and physicians (MDs, n = 53). Confirmatory factor analysis was used to examine seven questionnaire statements concerning implications of patient involvement for one’s clinical work. Regression analyses were used to examine factors associated with staff’s partnership-building communication. Analysis confirmed two distinct factors accounting for 57% of the total variance, representing both negative—“Hassles”—and positive—“Uplifts”—aspects of patient involvement. Regression analyses revealed that only positive aspects (i.e., uplifts) of patient involvement predicted staff behavior aimed at involving patients. Working with actively involved patients may be a source of stress, both negative and positive, for health care professionals. By developing work routines for involving patients in their care, health care workplaces may help health care professionals to buffer the negative effects, and enhance the positive effects, of that stress. 相似文献
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Implications for Practice
Breast cancer is far more curable than in the past but requires multimodality treatment. Great care must be taken to use the least leukemogenic treatment programs that do not sacrifice efficacy. Elimination of radiation and anthracycline/alkylating agent regimens will be helpful where possible, particularly in younger patients and possibly those with homologous repair deficiency (HRD). Use of colony-stimulating factors should be limited to those who truly require them for safe chemotherapy administration. Further study of a possible leukemogenic association with HRD and the various forms of colony-stimulating factors is badly needed.8.
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Judith Bernardini Valerie Price Ana Figueiredo Aase Riemann Dora Leung 《Peritoneal dialysis international》2006,26(6):658-663
OBJECTIVE: To survey nurses around the world about current practices for peritoneal dialysis (PD) home training programs. DESIGN: Random sampling of nurses to complete a written survey from the International Society for Peritoneal Dialysis Nursing Liaison Committee. Settings: United States, Canada, South America (Brazil, Columbia), The Netherlands, Hong Kong. METHODS: Surveys and responses were sent by fax whenever possible, or by regular mail, or hand carried, or conducted by telephone. Results were stratified by geographic areas as well as by cumulative responses and were expressed as medians with ranges. Kruskal-Wallis was used to evaluate differences in responses. Associations between variables were tested with Pearson correlation. Univariate regression analysis was used to evaluate the impact of variables on peritonitis rates. Variables with p < 0.10 were included in a multivariate analysis. RESULTS: A total of 317 nurses responded: 88 in the United States, 46 in Canada, 58 in South America, 58 in Hong Kong, and 67 in The Netherlands. This represented 37% of all surveys distributed. Respondents had a median of 12 years' experience in nephrology (range 1-35 years), but only 31% had a formal background in adult education. Nearly half received their guidance to patient training from a nurse colleague, 11% were guided by a corporate colleague, and 8% were simply self-taught. Clinics responding had a median of 30 PD patients (range 1-400) and reported they trained a median of 8 patients per year (range 0-86). Reported peritonitis rates were a median 0.46 per year or 1 episode every 26 months. Peritonitis rates, however, were not known by 53% of respondents. Total training time per patient had a very wide range of hours, from 6 to 96. There was no correlation between training time and peritonitis rates among the study respondents (p = 0.38), nor with any other variables. CONCLUSIONS: There is wide variation in practices for PD patient training programs within countries and around the world. Training time did not appear to be related to peritonitis rates. Randomized trials of training practices are needed to determine which approaches produce the best outcomes for patients. 相似文献