scholarly journals 65 Quality of death of renal patients dying in acute hospital – does renal supportive care (rsc) lead to better deaths?

Author(s):  
Kat Urban ◽  
Celine Foote ◽  
Frank Brennan ◽  
Mark Brown ◽  
Jenny Burman ◽  
...  
2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Daren K. Heyland ◽  
J. Paige Pope ◽  
Xuran Jiang ◽  
Andrew G. Day

Abstract Background People are living longer than ever before. However, with living longer comes increased problems that negatively impact on quality of life and the quality of death. Tools are needed to help individuals assess whether they are practicing the best attitudes and behaviors that are associated with a future long life, high quality of life, high quality of death and a satisfying post-death legacy. The purpose of paper is to describe the process we used to develop a novel questionnaire (“Preparedness for the Future Questionnaire™ or Prep FQ”) and to define its psychometric properties. Methods Using a multi-step development procedure, items were generated, for the new questionnaire after which the psychometric properties were tested with a heterogeneous sample of 502 Canadians. Using an online polling panel, respondents were asked to complete demographic questions as well as the Prep-FQ, Global Rating of Life Satisfaction, the Keyes Psychological Well-Being scale and the Short-Form 12. Results The final version of the questionnaire contains 34 items in 8 distinct domains (“Medico-legal”, “Social”, “Psychological Well-being”, “Planning”, “Enrichment”, “Positive Health Behaviors”, “Negative Health Behaviors”, and “Late-life Planning”). We observed minimum missing data and good usage of all response options. The average overall Prep FQ score is 51.2 (SD = 13.3). The Cronbach alphas assessing internal reliability for the Prep FQ domains ranged from 0.33 to 0.88. The intra-class correlation coefficient (ICC) used to assess the test–retest reliability had an overall score of 0.87. For the purposes of establishing construct validity, all the pre-specified relationships between Prep FQ and the other questionnaires were met. Conclusion Analyses of this novel measure offered support for its face validity, construct validity, test–retest reliability, and internal consistency. With the development of this useful and valid scale, future research can utilize this measure to engage people in the process of comprehensively assessing and improving their state of preparedness for the future, tracking their progress along the way. Ultimately, this program of research aims to improve the quality and quantity of peoples live by helping them ‘think ahead’ and ‘plan ahead’ on the aspects of their daily life that matter to their future.


2019 ◽  
Vol 47 (9) ◽  
pp. 1208-1215 ◽  
Author(s):  
Jun Yeun Cho ◽  
Ju-Hee Park ◽  
Junghyun Kim ◽  
Jinwoo Lee ◽  
Jong Sun Park ◽  
...  

2002 ◽  
Vol 20 (10) ◽  
pp. 2429-2440 ◽  
Author(s):  
Lewis R. Silverman ◽  
Erin P. Demakos ◽  
Bercedis L. Peterson ◽  
Alice B. Kornblith ◽  
Jimmie C. Holland ◽  
...  

PURPOSE: Patients with high-risk myelodysplastic syndrome (MDS) have high mortality from bone marrow failure or transformation to acute leukemia. Supportive care is standard therapy. We previously reported that azacitidine (Aza C) was active in patients with high-risk MDS.PATIENTS AND METHODS: A randomized controlled trial was undertaken in 191 patients with MDS to compare Aza C (75 mg/m2/d subcutaneously for 7 days every 28 days) with supportive care. MDS was defined by French-American-British criteria. New rigorous response criteria were applied. Both arms received transfusions and antibiotics as required. Patients in the supportive care arm whose disease worsened were permitted to cross over to Aza C.RESULTS: Responses occurred in 60% of patients on the Aza C arm (7% complete response, 16% partial response, 37% improved) compared with 5% (improved) receiving supportive care (P < .001). Median time to leukemic transformation or death was 21 months for Aza C versus 13 months for supportive care (P = .007). Transformation to acute myelogenous leukemia occurred as the first event in 15% of patients on the Aza C arm and in 38% receiving supportive care (P = .001). Eliminating the confounding effect of early cross-over to Aza C, a landmark analysis after 6 months showed median survival of an additional 18 months for Aza C and 11 months for supportive care (P = .03). Quality-of-life assessment found significant major advantages in physical function, symptoms, and psychological state for patients initially randomized to Aza C.CONCLUSION: Aza C treatment results in significantly higher response rates, improved quality of life, reduced risk of leukemic transformation, and improved survival compared with supportive care. Aza C provides a new treatment option that is superior to supportive care for patients with the MDS subtypes and specific entry criteria treated in this study.


2014 ◽  
Vol 118 (4) ◽  
pp. 695-697 ◽  
Author(s):  
Aryeh Shander ◽  
Nisha Gandhi ◽  
Rebecca A. Aslakson
Keyword(s):  

BMJ Open ◽  
2020 ◽  
Vol 10 (3) ◽  
pp. e033114 ◽  
Author(s):  
Svetlana V Doubova ◽  
Ingrid Patricia Martinez-Vega ◽  
Marcos Gutiérrez-De-la-Barrera ◽  
Claudia Infante-Castañeda ◽  
Carlos E Aranda-Flores ◽  
...  

ObjectivesTo develop and validate a Patient-Centred Quality of Cancer Care Questionnaire in Spanish (PCQCCQ-S) appropriate to the Mexican context.DesignPsychometric validation of a questionnaire.SettingTwo public oncology hospitals in Mexico City.Participants1809 patients with cancer aged ≥18 years.Source of informationCross-sectional survey.MethodsThe validation procedures comprised (1) content validity through a group of experts and patients; (2) item reduction and evaluation of the factor structure, through an exploratory factor analysis based on the polychoric correlation matrix; (3) internal consistency using Cronbach’s alpha; (4) convergent validity between the PCQCCQ-S and supportive care needs scale; (5) correlation analysis between the PCQCCQ-S and quality of life scale by calculating Spearman’s rank-correlation coefficient; and (6) differentiation by ‘known groups’ through the Wilcoxon rank-sum test.ResultsThe PCQCCQ-S has 30 items with the following five factors accounting for 96.5% of the total variance: (1) timely care; (2) clarity of the information; (3) information for treatment decision-making; (4) activities to address biopsychosocial needs; and (5) respectful and coordinated care. Cronbach’s alpha values ranged from 0.73 to 0.90 among the factors. PCQCCQ-S has moderate convergent validity with supportive care needs scale, revealing that higher quality is correlated with lower patient needs. PCQCCQ-S has acceptable ability to differentiate by ‘known groups’, showing that older patients and those with low levels of education perceived lower total quality of care as compared with their counterparts.ConclusionPCQCCQ-S has acceptable psychometric properties and can be used to measure quality of patient-centred cancer care in Mexico and serve as a reference to develop PCQCCQ-S in other Spanish-speaking countries.


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