Family caregiver distress with children having rare genetic disorders: a qualitative study involving Russell-Silver Syndrome in Taiwan

2011 ◽  
Vol 21 (1-2) ◽  
pp. 160-169 ◽  
Author(s):  
Hsin-Ju Weng ◽  
Dau-Ming Niu ◽  
Sue Turale ◽  
Lee-Ing Tsao ◽  
Fu-Jong Shih ◽  
...  
2015 ◽  
Vol 49 (2) ◽  
pp. 443-444 ◽  
Author(s):  
Kathi Mooney ◽  
Patricia Berry ◽  
Bob Wong ◽  
Gary Donaldson

2019 ◽  
Vol 57 (2) ◽  
pp. 510-511
Author(s):  
Sandhya Mudumbi ◽  
Macy Stockdill ◽  
Nicholas Hoppmann ◽  
James Dionne-Odom ◽  
Brendan McGuire ◽  
...  

Author(s):  
Chetna Malhotra ◽  
Mohamad Hazirah ◽  
Lay Ling Tan ◽  
Rahul Malhotra ◽  
Philip Yap ◽  
...  

2017 ◽  
Vol 16 (1) ◽  
pp. 23-31 ◽  
Author(s):  
Sriram Yennurajalingam ◽  
Yu Jung Kim ◽  
Yi Zhang ◽  
Jichan Park ◽  
Joseph Arthur ◽  
...  

ABSTRACTObjective:The aim of this study was to determine the factors associated with a feeling of well-being using the Edmonton Symptom Assessment Scale (ESAS)–Feeling of Well-Being item (ESAS–FWB; where 0 = best and 10 = worst) among advanced lung or non-colonic gastrointestinal cancer patients who were referred to an outpatient palliative care clinic (OPCC). We also examined the association of performance on the ESAS–FWB with overall survival (OS).Method:We reviewed the records of consecutive patients with incurable advanced lung cancer and non-colonic gastrointestinal cancer presenting to an OPCC from 1 January 2008 through to 31 December 2013. Descriptive statistics were employed to summarize patient characteristics. Multivariate regression analysis was used to determine the factors associated with ESAS–FWB severity. We also examined the association of ESAS–FWB scores and survival using Kaplan–Meier survival analysis.Results:A total of 826 evaluable patients were analyzed (median age = 62 years, 57% male). Median ESAS–FWB scores were five times the interquartile range (5 × IQR; 3–7). ESAS–FWB score was found to be significantly associated with ESAS fatigue (OR = 2.31, p < 0.001); anxiety (OR = 1.98, p < 0.001); anorexia (OR = 2.31, p < 0.001); cut down, annoyed, guilty, eye opener (CAGE) score (hazard ratio [HR] = 1.80, p = 0.008); and family caregiver distress (HR = 1.93, p = 0.002). A worse ESAS–FWB score was significantly associated with decreased OS (r = –0.18, p < 0.001). However, ESAS–FWB score was not independently associated with OS in the final multivariate model (p = 0.35), which included known major clinical prognostic factors.Conclusions:Worse ESAS–FWB scores were significantly associated with high scores on ESAS fatigue, anorexia, anxiety, CAGE, and family caregiver distress. More research is necessary to understand how palliative care interventions are capable of improving the contributory factors related to ESAS–FWB score.


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