RESUMO
OBJECTIVE: To investigate the acceptability, feasibility, and preliminary effectiveness of "SupportED," a novel, online, self-paced skills-based program for carers/support people of those with lived and/or living experience of an eating disorder (ED). METHOD: Carers of a loved one with an ED were invited to undertake a five-module skills-based (one core module, four optional modules) online program at their own pace. Modules cover general information about EDs, communication, practical skills, treatment engagement, and recovery. Participants completed demographics and were assessed using EDSIS, CASK, and DASS-21 for caregiver burden, skills, and distress, respectively, at program completion and 3-month follow-up. Feedback on the program and modules was also collected. RESULTS: Most carers (65%; 82/126) completed the core module of the program, which is on par with other online learning programs. Nearly half of program completers responded to the 3-month follow-up (n = 39). On average, carers rated the program as relevant and useful and found the information validating and easy to understand, albeit a few carers found the program time-consuming and technically challenging. Intent-to-treat (ITT) linear mixed models demonstrated the preliminary effectiveness of the program for improving carer burden and skills, although the change in carer distress was non-significant. CONCLUSIONS: Results of this case series evaluation suggest SupportED is an acceptable and feasible program for carers and may improve burden and support skill development. Although the online, self-paced format was highly rated, small improvements to improve acceptability were suggested. Reasons for a lack of impact on carer distress are discussed. PUBLIC SIGNIFICANCE: This article describes a case series evaluation of "SupportED," an online skills-based support program for families, carers, and supporters of people with lived experience of an eating disorder. This is the first online carer support program that is designed to be inclusive of all carer types (e.g., partners, siblings) for all eating disorder presentations. Findings suggest the program's suitability and helpfulness for reducing carers' load and bolstering skills and knowledge.
Assuntos
Cuidadores , Transtornos da Alimentação e da Ingestão de Alimentos , Humanos , Transtornos da Alimentação e da Ingestão de Alimentos/terapia , Comportamentos Relacionados com a Saúde , Inquéritos e Questionários , IntençãoRESUMO
PURPOSE: To demonstrate how the current concept of recurrent ovarian carcinoma (ROC) as a chronic disease resulted in developments in the systemic treatment strategies and outcome over time. METHODS: We compared therapy type and course of a population-based cohort whose recurrent disease was diagnosed from 1990 to 2006. We divided the patients into two subgroups depending on the year of diagnosis of ROC (group A 1990-1997, n = 70; group B 1998-2006, n = 63). RESULTS: Both study groups showed similar results in survival (median recurrent disease-specific survival-A 18 months vs. B 19 months; P = 0.549). In group B, the patients had significantly fewer combination therapies administered [12.0% vs. 24.1%; odds ratio (OR) 0.43; 95% confidence interval (CI) 0.23-0.81; P = 0.0057], received more therapy lines (> or =3 lines 56.1% vs. 31.1%; OR 3.10; 95% CI 1.37-7.17; P = 0.005) and had significantly longer times of treatment (TT) in relation to the survival time (ST; mean TT/ST-ratio 57.5% vs. 47.5%; difference of the mean values B-A = -10.02; 95%CI -17.99 to -2.05; P = 0.014). CONCLUSIONS: The finding that survival of ROC patients could not be improved over time should not necessarily be viewed with undue pessimism regarding the general therapy situation. In the more recent study period, a similar outcome could be achieved with less aggressive treatment regimens, i.e., with fewer combination therapies and with longer treatment periods using less toxic agents. When a disease which requires periodic chemotherapy to control progressive course is increasingly treated with a strategy that permits stabilization with limited cumulative toxicity, then the requirements of a chronic disease management have been fulfilled.