Societal preferences in the treatment of pediatric medulloblastoma: Balancing risk of death and quality of life

2016 ◽  
Vol 64 (6) ◽  
pp. e26340 ◽  
Author(s):  
Amir Khakban ◽  
Tima Mohammadi ◽  
Larry D. Lynd ◽  
Don Mabbott ◽  
Eric Bouffet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Of Death ◽  
Pediatric Medulloblastoma ◽  
Societal Preferences

scholarly journals Estimating sign-dependent societal preferences for quality of life

2015 ◽  
Vol 43 ◽  
pp. 229-243 ◽  
Author(s):  
Arthur E. Attema ◽  
Werner B.F. Brouwer ◽  
Olivier l’Haridon ◽  
Jose Luis Pinto
Keyword(s):  
Quality Of Life ◽  
Societal Preferences

scholarly journals Frailty and the Kidney Transplant Wait List: Protocol for a Multicenter Prospective Study

2020 ◽  
Vol 7 ◽  
pp. 205435812095743
Author(s):  
Karthik K. Tennankore ◽  
Lakshman Gunaratnam ◽  
Rita S. Suri ◽  
Seychelle Yohanna ◽  
Michael Walsh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Kidney Transplant ◽  
Repeated Measures ◽  
Primary Outcome ◽  
Frailty Index ◽  
Wait List ◽  
Relative Hazard ◽  
Risk Of Death ◽  
Secondary Outcomes

Background: Understanding how frailty affects patients listed for transplantation has been identified as a priority research need. Frailty may be associated with a high risk of death or wait-list withdrawal, but this has not been evaluated in a large multicenter cohort of Canadian wait-listed patients. Objective: The primary objective is to evaluate whether frailty is associated with death or permanent withdrawal from the transplant wait list. Secondary objectives include assessing whether frailty is associated with hospitalization, quality of life, and the probability of being accepted to the wait list. Design: Prospective cohort study. Setting: Seven sites with established renal transplant programs that evaluate patients for the kidney transplant wait list. Patients: Individuals who are being considered for the kidney transplant wait list. Measurements: We will assess frailty using the Fried Phenotype, a frailty index, the Short Physical Performance Battery, and the Clinical Frailty Scale at the time of listing for transplantation. We will also assess frailty at the time of referral to the wait list and annually after listing in a subgroup of patients. Methods: The primary outcome of the composite of time to death or permanent wait-list withdrawal will be compared between patients who are frail and those who are not frail and will account for the competing risks of deceased and live donor transplantation. Secondary outcomes will include number of hospitalizations and length of stay, and in a subset, changes in frailty severity over time, change in quality of life, and the probability of being listed. Recruitment of 1165 patients will provide >80% power to identify a relative hazard of ≥1.7 comparing patients who are frail to those who are not frail for the primary outcome (2-sided α = .05), whereas a more conservative recruitment target of 624 patients will provide >80% power to identify a relative hazard of ≥2.0. Results: Through December 2019, 665 assessments of frailty (inclusive of those for the primary outcome and all secondary outcomes including repeated measures) have been completed. Limitations: There may be variation across sites in the processes of referral and listing for transplantation that will require consideration in the analysis and results. Conclusions: This study will provide a detailed understanding of the association between frailty and outcomes for wait-listed patients. Understanding this association is necessary before routinely measuring frailty as part of the wait-list eligibility assessment and prior to ascertaining the need for interventions that may modify frailty. Trial Registration: Not applicable as this is a protocol for a prospective observational study.

Prognostic Value of Changes in Health-Related Quality of Life Scores During Curative Treatment for Esophagogastric Cancer

2010 ◽  
Vol 28 (10) ◽  
pp. 1666-1670 ◽  
Author(s):  
Therese Djärv ◽  
Chris Metcalfe ◽  
Kerry N.L. Avery ◽  
Pernilla Lagergren ◽  
Jane M. Blazeby
Keyword(s):  
Quality Of Life ◽  
Physical Function ◽  
Prognostic Value ◽  
Curative Treatment ◽  
Health Related Quality ◽  
Risk Of Death ◽  
Esophagogastric Cancer ◽  
Related Quality ◽  
Health Related

Purpose Accumulating evidence suggests that health-related quality of life (HRQL) data before treatment predict survival, but the prognostic value of changes in HRQL scores after treatment is unknown. The aim of this study was to explore whether changes in HRQL scores in esophagogastric cancer predict survival. Patients and Methods Consecutive patients undergoing curative treatment completed HRQL questionnaires (EORTC QLQ-C30) at baseline and after six months and were followed up for at least five years. Cox proportional hazard models with adjustments assessed associations between baseline HRQL and survival and between changes in HRQL before and after treatment and survival. Results Overall, 216 patients initiated curative therapy, of whom169 completed treatment and survived 6 months. Of these, 132 (7%) had two complete HRQL assessments. Analyses adjusted for age, sex, performance status, tumor stage, and disease site revealed that a 10-point poorer dyspnea score at baseline was significantly associated with an 18% higher risk of death. Additional analyses to adjust for baseline HRQL and treatment showed that a 10-point change in physical function (hazard ratio [HR], 0.85; 95% CI, 0.76 to 0.96; P = .007), pain (HR, 1.20; 95% CI, 1.09 to 1.33; P < .001), and fatigue (HR, 1.16; 95% CI, 1.04 to 1.30; P = .009) scores was associated with better survival. Conclusion This exploratory study found longer survival beyond the 6 months after starting treatment to be associated with fewer problems with dyspnea before treatment and better recovery of physical function, pain, and fatigue after treatment. More research to confirm these findings and understand the results is needed.

scholarly journals What Does the Public Want? Structural Consideration of Citizen Preferences in Health Care Coverage Decisions

2018 ◽  
Vol 3 (2) ◽  
pp. 238146831879962
Author(s):  
Irina Cleemput ◽  
Stephan Devriese ◽  
Laurence Kohn ◽  
Carl Devos ◽  
Janine van Til ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
General Public ◽  
Decision Makers ◽  
Added Value ◽  
Policy Makers ◽  
Health Care Coverage ◽  
Criteria Weights ◽  
Societal Preferences

Background. Multi-criteria decision analysis can improve the legitimacy of health care reimbursement decisions by taking societal preferences into account when weighting decision criteria. This study measures the relative importance of health care coverage criteria according to the Belgian general public and policy makers. Criteria are structured into three domains: therapeutic need, societal need, and new treatments’ added value. Methods. A sample of 4,288 citizens and 161 policy makers performed a discrete choice experiment. Data were analyzed using multinomial logistic regression analysis. Level-independent criteria weights were determined using the log-likelihood method. Results. Both the general public and policy makers gave the highest weight to quality of life in the appraisal of therapeutic need (0.43 and 0.53, respectively). The general public judged life expectancy (0.14) as less important than inconvenience of current treatment (0.43), unlike decision makers (0.32 and 0.15). The general public gave more weight to “impact of a disease on public expenditures” (0.65) than to “prevalence of the disease” (0.56) when appraising societal need, whereas decision makers’ weights were 0.44 and 0.56, respectively. When appraising added value, the general public gave similar weights to “impact on quality of life” and “impact on prevalence” (0.37 and 0.36), whereas decision makers judged “impact on quality of life” (0.39) more important than “impact on prevalence” (0.29). Both gave the lowest weight to impact on life expectancy (0.14 and 0.21). Limitations. Comparisons between the general public and policy makers should be treated with caution because the policy makers’ sample size was small. Conclusion. Societal preferences can be measured and used as decision criteria weights in multi-criteria decision analysis. This cannot replace deliberation but can improve the transparency of health care coverage decision processes.

scholarly journals Treatment restrictions in patients with severe stroke are associated with an increased risk of death

2017 ◽  
Vol 2 (3) ◽  
pp. 244-249 ◽  
Author(s):  
Marjolein Geurts ◽  
Floor AS de Kort ◽  
Paul LM de Kort ◽  
Julia H van Tuijl ◽  
Ghislaine JMW van Thiel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Visual Analogue Scale ◽  
Functional Outcome ◽  
Analogue Scale ◽  
Modified Rankin Scale ◽  
Severe Stroke ◽  
Risk Of Death ◽  
Increased Risk ◽  
Treatment Restrictions

Introduction Treatment restrictions in the first 2 days after intracerebral haemorrhage have been independently associated with an increased risk of early death. It is unknown whether these restrictions also affect mortality if these are installed several days after stroke onset. Patients and methods Sixty patients with severe functional dependence at day 4 after ischaemic stroke or intracerebral haemorrhage were included in this prospective two-centre cohort study. The presence of treatment restrictions was assessed at the day of inclusion. Information about mortality, functional outcome (modified Rankin scale) score and quality of life (visual analogue scale) was recorded 6 months after stroke onset. Poor outcome was defined as modified Rankin scale >3. Satisfactory quality of life was defined as visual analogue scale ≥ 60. Results At 6 months, 30 patients had died, 19 survivors had a poor functional outcome and 9 patients had a poor quality of life. Treatment restrictions were independently associated with mortality at 6 months (adjusted relative risk, 1.30; 95% confidence interval, 1.06–1.59; p = 0.01), but not with functional outcome. Discussion Our findings were observed in 60 selected patients with severe stroke. Conclusion The instalment of treatment restrictions by itself may increase the risk of death after stroke, even if the first 4 days have passed. In future stroke studies, this potential confounder should be taken into account. Quality of life was satisfactory in the majority of the survivors, despite considerable disability.

The role of annual personal health visits (APHV) on patients' with cancer knowledge and perceptions of the harms of continued smoking.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 152-152
Author(s):  
Delaram Farzanfar ◽  
Lin Lu ◽  
Jie Su ◽  
Devon Alton ◽  
Rahul Mohan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Cancer Survivors ◽  
Cancer Patients ◽  
Primary Care Providers ◽  
Smoking History ◽  
Care Providers ◽  
Risk Of Death ◽  
Increase Risk

152 Background: With improvements in cancer detection and therapies, important secondary prevention measures in survivorship include smoking cessation. Primary care providers have an opportunity to discuss these measures with cancer survivors at APHV. We evaluated whether having a recent APHV is associated with cancer patients’ awareness and perceptions of the harms of continued smoking. Methods: Cancer survivors were surveyed from April 2014 to May 2016 with respect to their smoking history, knowledge and perceptions of the harms of continued smoking along with the date of their most recent APHV (term changed from annual health physical examination in 2013). Multivariable logistic regression analyses assessed the association of having an APHV with knowledge and perceptions of the harms of continued smoking. Results: Of 985 cancer patients, 23% smoked at diagnosis; 34% quit > 1 year prior to diagnosis; 55% had tobacco-related cancers; 77% received curative therapy. From a knowledge viewpoint, over 52% reported being unaware that smoking negatively impacts cancer outcomes; despite this, most perceived smoking to negatively influence quality of life (75%), survival (76%), and fatigue (73%). Within the last year, 48% had an APHV, while 84% had an APHV at any time in the past; 18 (2%) reported not having a family doctor. Patients who had an APHV in the last year were more likely to be aware that continued smoking can increase risk of death (adjusted odds ratio (aOR)=1.49, 95% CI [1.13-1.96], P=0.004), and more likely to perceive smoking to negatively impact quality of life (aOR=1.37 [0.94-1.99], P=0.10), survival (aOR=1.60 [0.95-2.71], P=0.08), and fatigue (aOR=1.63 [1.11-2.39], P=0.01). Those ever having an APHV were more likely aware that smoking can increase risk of death (aOR=1.61 [1.07-2.43], P=0.02) and second primaries (aOR=1.53 [1.02-2.33], P=0.04). Conclusions: Having a recent APHV was associated with improved awareness and perceptions of the harms of continued smoking, but it is unclear whether this is related to provider counseling or a healthy bias effect. APHV may be an appropriate time for primary care providers to treat tobacco addiction in their cancer survivors.

scholarly journals Health-related quality of life as a predictor of mortality in patients on peritoneal dialysis

2016 ◽  
Vol 24 (0) ◽  
Author(s):  
Marília Pilotto de Oliveira ◽  
Luciana Kusumota ◽  
Vanderlei José Haas ◽  
Rita de Cássia Helú Mendonça Ribeiro ◽  
Sueli Marques ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Peritoneal Dialysis ◽  
Physical Functioning ◽  
Short Form ◽  
Health Related Quality ◽  
Risk Of Death ◽  
Increased Risk ◽  
Related Quality ◽  
Health Related

Objective: to characterize deaths that occurred, and the association between socio-demographic, clinical, laboratory variables and health-related quality of life and the outcome of death in patients on peritoneal dialysis, over a two year period after an initial assessment. Method: observational, prospective population study with 82 patients on peritoneal dialysis. The instruments used for the first stage of data collection were the mini-mental state examination, a sociodemographic, economic, clinical and laboratory questionnaire and the Kidney Disease and Quality of Life-Short Form. After two years, data for characterization and occurrence of death in the period were collected. The relative risk of death outcome was calculated through statistical analysis; the risk of death was estimated by the survival Kaplan-Meier curve, and determined predictors of death by the Cox Proportional Hazards Model. Results: of the 82 original participants, 23 had as an outcome death within two years. The increased risk for the outcome of death was associated with a lower mean score of health-related quality of life in the physical functioning domain. Conclusion: the worst health-related quality of life in the physical functioning domain, could be considered a predictor of death.

scholarly journals GAMBARAN KESINTASAN PASIEN KO-INFEKSI TB-HIV BERDASARKAN LOKASI ANATOMI TUBERKULOSIS DI RUMAH SAKIT PENYAKIT INFEKSI PROF. DR. SULIANTI SAROSO TAHUN 2010-2013

2017 ◽  
Vol 2 (1) ◽  
pp. 26
Author(s):  
Nor Efendi ◽  
Tri Yunis Miko Wahyono ◽  
Titi Sundari
Keyword(s):  
Quality Of Life ◽  
Medical Records ◽  
Random Sampling ◽  
Retrospective Cohort ◽  
Sampling Technique ◽  
Simple Random Sampling ◽  
Anatomical Site ◽  
Proper Treatment ◽  
Risk Of Death

Abstrak : Penelitian ini bertujuan untuk mengetahui gambaran kesintasan 2 tahun setelah diagnosis pasien ko-infeksi TB-HIV berdasarkan lokasi anatomi Tuberkulosis (TB). Penelitian ini menggunakan desain kohort restrospektif dinamik menggunakan 177 rekam medik pasien ko-infeksi TB-HIV di RSPI Prof. Dr Sulianti Saroso Jakarta yang terdaftar tahun 2010-2013, diambil secara simple random sampling Kesintasan pasien ko-infeksi TB-HIV 2 tahun setelah diagnosa dengan lokasi anatomi TB di ekstra paru sebesar 86%, lebih rendah dibandingkan dengan lokasi anatomi TB di paru sebesar 98%. Lokasi anatomi TB di ekstra paru beresiko lebih cepat mengalami kematian pada pasien ko-infeksi TB-HIV (HR 1,47, 95% CI : 0,55-3,90). Infeksi HIV mengakibatkan kerusakan sistem imunitas tubuh yang luas sehingga infeksi dan penyebaran kuman TB juga akan meluas seperti ke kelenjar getah bening, pleura dan organ lainnya. TB ekstra paru memiliki beban bakteri TB yang lebih tinggi dan menunjukkan progresifitas perjalanan penyakit semakin parah yang mengakibatkan probabilitas ketahanan hidup (kesintasan) penderitanya semakin menurun. Perlu dilakukan screening lebih intensif terhadap pasien ko-infeksi TB-HIV untuk menemukan kemungkinan TB di ekstra paru sedini mungkin agar dapat diberikan penatalaksanaan yang tepat dalam rangka meningkatkan kualitas hidup penderitanya.Abstract : The study aims to describe the overview of survival for 2 years after diagnosed of patients co-infection with TB-HIV based on the anatomical site of Tuberculosis (TB). The design of this study was dynamic retrospective cohort with 177 medical records of TB-HIV co-infection patients in the Center of infection hospital Prof. Dr. Sulianti Saroso, Jakarta, from 2010 to 2013, taken by simple random sampling technique. The survival of TB-HIV co-infection for 2 years after it was diagnosed in patients with anatomical site of TB in the extrapulmonary was 86% and it was lower compared to patient with the anatomical site in the pulmonary which was 98%. Anatomical site of TB in the extrapulmonary had risk of death faster toward TB-HIV co-infection patients (HR 1,47, 95% CI : 0,55-3,90). HIV infection cause the widespreading damage in the immunity system therefor the infection of TB microbe also spreading to other organ such as lymph nodes and pleura. Extrapulmonary TB has much more TB microbe that worsen the progressivity of the disease and decrease the probability of the patient’s survival. Intensive screening are needed for TB/HIV co-infection patients to diagnosed the possibility of TB infection in the extrapulmonary as early as possible to increase the quality of life of its patients by finding the proper treatment.

scholarly journals MO131THE SHRUNKEN PORE SYNDROME IS ASSOCIATED WITH POOR PROGNOSIS AND LOWER QUALITY OF LIFE IN HEART FAILURE PATIENTS- THE HARVEST-MALMÖ STUDY

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Liana Xhakollari ◽  
Anders Grubb ◽  
Amra Jujic ◽  
Erasmus Bachus ◽  
Peter M Nilsson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Poor Prognosis ◽  
Kansas City ◽  
Cox Regression ◽  
Cardiorenal Syndrome ◽  
Risk Of Death ◽  
Increased Risk ◽  
Health Related Qol

Abstract Background and Aims The cardiorenal syndrome was studied in heart failure (HF) patients with respect to the “Shrunken pore syndrome” (SPS) that is characterized by a difference in renal filtration between cystatin C and creatinine, resulting in a low eGFRcystatin C/eGFRcreatinine-ratio. Method 373 patients hospitalized for HF were retrieved from the HeARt and brain failure inVESTigation trial (HARVEST-Malmö). We used CKD-EPI formulas for estimated glomerular filtration rate (eGFR). Presence of SPS was defined as eGFRcystatinC ≤60% of eGFRcreatinine. In Cox regression multivariate models, associations between SPS, risk of death and risk of 30-day re-hospitalization were studied. Associations between SPS and impaired quality of life (QoL) were studied using multivariate logistic regressions. Results SPS was associated with all-cause mortality (124 events; hazard ratio (HR) 2.35; confidence interval (CI95%) 1.17-4.71; p=0.016 and with 30-day re-hospitalization (70 events; HR 1.82; CI95% 1.04-3.18; p=0.036). Analyses of QoL, based on a Kansas City Cardiomyopathy Questionnaire overall score &lt;50, revealed that SPS was associated with increased risk of low health-related QoL (odds ratios (OR) 2.15 (CI95% 1.03-4.49; p=0.042). Conclusion The results of this observational study show for the first time an association between SPS and poor prognosis in HF. Further studies are needed to confirm the results in HF cohorts and experimental settings to identify pathophysiological mechanisms.

scholarly journals Estimating Sign-Dependent Societal Preferences for Quality of Life

2014 ◽  
Author(s):  
Arthur E. Attema ◽  
Werner Brouwer ◽  
Olivier l'Haridon ◽  
Jose Luis Pinto-Prades
Keyword(s):  
Quality Of Life ◽  
Societal Preferences
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