scholarly journals Enhancing Value and Uptake for Whole-Population Cohorts of Children and Parents: Methods to Integrate Registries into the Generation Victoria Cohort

Children ◽  
2021 ◽  
Vol 8 (4) ◽  
pp. 285
Author(s):  
Valerie Sung ◽  
Katrina Williams ◽  
Ella Perlow ◽  
Yanhong J. Hu ◽  
Susannah Ahern ◽  
...  
Keyword(s):  
Quality Of Care ◽  
High Risk ◽  
Long Term Outcomes ◽  
Children And Parents ◽  
Funding Bias ◽  
Almost All ◽  
Over Time ◽  
Morbid Conditions

Health registries are critical to understanding, benchmarking and improving quality of care for specific diseases and conditions, but face hurdles including funding, bias towards clinical rather than population samples, lack of pre-morbid and outcomes data, and absent cross-registry harmonisation and coordination. Children are particularly under-represented in registry research. This paper lays out novel principles, methods and governance to integrate diverse registries within or alongside a planned children’s mega-cohort to rapidly generate translatable evidence. GenV (Generation Victoria) will approach for recruitment parents of all newborns (estimated 150,000) over two years from mid-2021 in the state of Victoria (population 6.5 million), Australia. Its sample size and population denominator mean it will contain almost all children with uncommon or co-morbid conditions as they emerge over time. By design, it will include linked datasets, biosamples (including from pregnancy), phenotypes and participant-reported measures, all of which will span pre-morbid to long-term outcomes. We provide a vignette of a planned new registry for high-risk pregnancies to illustrate the possibilities. To our knowledge, this is the first paper to describe such a methodology designed prospectively to enhance both the clinical relevance of a large multipurpose cohort and the value and inclusivity of registries in a population.

scholarly journals Travel to a high volume hospital to undergo resection of gallbladder cancer: does it impact quality of care and long-term outcomes?

HPB ◽  
2020 ◽  
Vol 22 (1) ◽  
pp. 41-49 ◽  
Author(s):  
Eliza W. Beal ◽  
Rittal Mehta ◽  
Diamantis I. Tsilimigras ◽  
J. Madison Hyer ◽  
Anghela Z. Paredes ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Gallbladder Cancer ◽  
High Volume ◽  
Long Term Outcomes ◽  
High Volume Hospital ◽  
It Impact

scholarly journals Preliminary Results of first Belgian Cohort of Juvenile Idiopathic Arthritis: Where Do we Stand in Terms of Quality of Care and Remission?

2020 ◽  
Author(s):  
Céline La ◽  
Phu Quoc Lê ◽  
Alina Ferster ◽  
Laurence Goffin ◽  
Bernard Lauwerys ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Quality Of Care ◽  
Long Term Outcomes ◽  
Disease Characteristics ◽  
French Speaking ◽  
Das28 Remission ◽  
The Mean

Abstract BackgroundJuvenile idiopathic arthritis (JIA) represents a very heterogeneous disease, and our objectives were to describe the first Belgian cohort of children with JIA, assess their disease characteristics and outcome and identify potential markers of prognosis.MethodsThe CAP48 cohort is a multicentric observational study of children with a recent or well-established diagnosis of JIA (naïve or not to treatment at baseline), evaluated every 6 months during a follow-up of 5 to 10 years.ResultsThere were 125 children included in the cohort, composed of 25 naïve and 100 established patients. The patients had a median age of 6.2 and 4.2 years at onset in the naïve and established cohort respectively, with a predominance of female. All subtypes of JIA were represented in both cohorts. The mean DAS28-CRP and JADAS10-CRP at baseline in naïve patients was 2.52 and 6.0 respectively. Uveitis occurred in 19% of patients and was strongly associated with presence of antinuclear antibodies (odds ratio of 6). Fifty-five percent of naïve patients were in remission at 12 months of follow-up according to the ACR criteria and JADAS10 scores, in contrast with 100% achieving DAS28 remission. ConclusionThis first cohort study in Belgium allowed to compare its data to other existing cohorts and to evaluate quality of care in Belgian French-speaking hospitals. Additionally, it highlighted a superiority of JADAS10 over DAS28 to monitor and evaluate remission in JIA. This study also underlined a need for more accurate markers of prognosis to improve treatment and long-term outcomes.

scholarly journals Pre-habilitation in Enhanced Recovery After Surgery Programs: A New Potential for Balneology and Physical Medicine to Benefit Patients

2019 ◽  
Vol 61 (2) ◽  
pp. 78-80
Author(s):  
David Ferson
Keyword(s):  
Quality Of Care ◽  
21St Century ◽  
Enhanced Recovery ◽  
Enhanced Recovery After Surgery ◽  
Surgical Patient ◽  
Physical Medicine ◽  
Long Term Outcomes ◽  
Multidisciplinary Teamwork

Medicine in the 21st century is becoming more integrated and less episodic. The ERAS programs have demonstrated that developing an organized, multidisciplinary teamwork approach to surgical patient care can significantly improve the quality of care and reduce complications. The next step in further improving the ERAS programs and potentially positively influencing the long-term outcomes for the patients is optimal conditioning and preparation before the surgery.

Quality of care and short‐ and long‐term outcomes of laryngeal cancer care in the elderly

2015 ◽  
Vol 125 (10) ◽  
pp. 2323-2329 ◽  
Author(s):  
Christine G. Gourin ◽  
Heather M. Starmer ◽  
Robert J. Herbert ◽  
Kevin D. Frick ◽  
Arlene A. Forastiere ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Laryngeal Cancer ◽  
Cancer Care ◽  
The Elderly ◽  
Long Term Outcomes ◽  
Short And Long Term

Implementation of an Inpatient IBD Service Is Associated with Improvement in Quality of Care and Long-Term Outcomes

2021 ◽  
Author(s):  
Simon J. Hong ◽  
Janice Jang ◽  
Dana Berg ◽  
Tarik Kirat ◽  
Feza Remzi ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Long Term Outcomes

scholarly journals Prospective Changes in Health-Related Quality of Life and Emotional Outcomes in Kidney Transplantation over 6 Years

2011 ◽  
Vol 2011 ◽  
pp. 1-12 ◽  
Author(s):  
Konstadina Griva ◽  
Jan Stygall ◽  
Juan Hui Ng ◽  
Andrew Davenport ◽  
Mike J. Harrison ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Kidney Transplantation ◽  
Health Related Quality ◽  
Long Term Outcomes ◽  
Emotional Outcomes ◽  
Related Quality ◽  
Health Related ◽  
Over Time

Little is known on long-term outcomes in kidney transplantation. This study evaluated changes and predictors of generic and transplantation-specific health-related quality of life (HQoL) over six years inN=102kidney transplant survivors using the Short-form Health Survey-36 and the Transplant Effects questionnaire. Mixed models analysis was used to determine long-term outcomes. Emotional HQoL improved over time: Mental Component score, Mental Health, Energy (Ps=.000). Physical HQoL deteriorated: Physical Component Score (P=.001), Pain (P=.002). LRD transplant recipients had greater decline in physical functioning (P=.003) and PCS (P=.000) compared to cadaver recipients. Worry about the transplant (P=.036) and feelings of responsibility (P=.008) increased significantly over time. Worry about the transplant and perceived ability to work predicted 12.7% and 31.1% in variance in MCS and PCS, respectively. Efforts should be made to maintain HQoL and emotional outcomes with ongoing monitoring and support programs throughout the course of posttransplant care.

scholarly journals Improving the quality of care in health systems: towards better strategies

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Jennifer Dixon
Keyword(s):  
Health Care ◽  
Quality Of Care ◽  
New Technologies ◽  
Critical Mass ◽  
National Level ◽  
Short Term ◽  
The Future ◽  
Over Time

AbstractImproving the quality of health care across a nation is complex and hard. Countries often rely on multiple single national level programmes to make progress. But the key is to use a framework to develop a balanced overall strategy, and evaluate the main elements continuously and over time. Achieving that requires having a critical mass of leaders who collectively can see the bigger picture now, envision a roadmap for the future to chart an intelligent course, and course correct regularly. This is a long-term agenda requiring commitment, careful stewardship, different perspectives, trust, and the building of knowledge and experience over time. It is also almost completely at odds with much current policymaking which is short term, reactive and demands hard results. Many countries are making progress. But the rapid introduction of new types of care during the COVID 19 pandemic, such as online and digital, the use of new technologies which could soon revolutionalise the way care is delivered, experienced and evaluated, and the huge pressures on spending on health care in future mean we will have to do better. Achieving system-wide quality of care requires having a critical mass of leaders who collectively can see the bigger picture now, envision a roadmap for the future to chart a balanced intelligent course. For the Israeli health system, the recent IJHPR article by Dreiher et al. will help, but it will be important, in the future, to analyse how Israel measures up on the framework outlined above. This ideally would be supplemented with a survey of key leaders for their assessment, and both would be a regular (say 5 yearly) exercise and would help inform future strategies.

scholarly journals Prophylactic Haloperidol Effects on Long-term Quality of Life in Critically Ill Patients at High Risk for Delirium

2019 ◽  
Vol 131 (2) ◽  
pp. 328-335
Author(s):  
Paul J. T. Rood ◽  
Marieke Zegers ◽  
Arjen J. C. Slooter ◽  
Albert Beishuizen ◽  
Koen S. Simons ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care Unit ◽  
Intensive Care ◽  
Placebo Group ◽  
High Risk ◽  
Critically Ill ◽  
Mental Component Summary ◽  
Long Term Outcomes

Abstract Editor’s Perspective What We Already Know about This Topic What This Article Tells Us That Is New Background Delirium incidence in intensive care unit patients is high and associated with impaired long-term outcomes. The use of prophylactic haloperidol did not improve short-term outcome among critically ill adults at high risk of delirium. This study evaluated the effects of prophylactic haloperidol use on long-term quality of life in this group of patients and explored which factors are associated with change in quality of life. Methods A preplanned secondary analysis of long-term outcomes of the pRophylactic haloperidol usE for DeliriUm in iCu patients at high risk for dElirium (REDUCE) study was conducted. In this multicenter randomized clinical trial, nondelirious intensive care unit patients were assigned to prophylactic haloperidol (1 or 2 mg) or placebo (0.9% sodium chloride). In all groups, patients finally received study medication for median duration of 3 days [interquartile range, 2 to 6] until onset of delirium or until intensive care unit discharge. Long-term outcomes were assessed using the Short Form-12 questionnaire at intensive care unit admission (baseline) and after 1 and 6 months. Quality of life was summarized in the physical component summary and mental component summary scores. Differences between the haloperidol and placebo group and factors associated with changes in quality of life were analyzed. Results Of 1,789 study patients, 1,245 intensive care unit patients were approached, of which 887 (71%) responded. Long-term quality of life did not differ between the haloperidol and placebo group (physical component summary mean score of 39 ± 11 and 39 ± 11, respectively, and P = 0.350; and mental component summary score of 50 ± 10 and 51 ± 10, respectively, and P = 0.678). Age, medical and trauma admission, quality of life score at baseline, risk for delirium (PRE-DELIRIC) score, and the number of sedation-induced coma days were significantly associated with a decline in long-term quality of life. Conclusions Prophylactic haloperidol use does not affect long-term quality of life in critically ill patients at high risk for delirium. Several factors, including the modifiable factor number of sedation-induced coma days, are associated with decline in long-term outcomes.

scholarly journals Preliminary Results of first Belgian Cohort of Juvenile Idiopathic Arthritis: Where Do we Stand in Terms of Quality of Care and Remission?

2021 ◽  
Author(s):  
Céline La ◽  
Phu Quoc Lê ◽  
Alina Ferster ◽  
Laurence Goffin ◽  
Bernard Lauwerys ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Quality Of Care ◽  
Age At Onset ◽  
Long Term Outcomes ◽  
Disease Characteristics ◽  
French Speaking ◽  
Das28 Remission

Abstract IntroductionJuvenile idiopathic arthritis (JIA) represents a very heterogeneous disease. As such, it has been a challenge to describe the disease activity of JIA cohorts. Our objective was to describe the first Belgian cohort of children with JIA by assessing their disease characteristics, outcomes, and potential markers of prognosis.MethodsThe CAP48 cohort is a multicentric observational study of children with recent or well-established diagnosis of JIA (naïve or not to treatment at baseline), evaluated every 3 to 6 months during a follow-up of 10 years.ResultsThere were 125 children included, composing of 25 naïve and 100 established patients. Their median age at onset was 6.2 and 4.2 years in the naïve and established cohort respectively, with a predominance of female. All subtypes of JIA were represented in both cohorts. The mean DAS28-CRP and JADAS10-CRP at baseline in naïve patients was 2.52 and 6.0 respectively. Uveitis occurred in 19% of patients and was strongly associated with presence of antinuclear antibodies (odds ratio of 6). Among naïve patients, 55% were in remission at 12 months according to ACR criteria and JADAS10 scores, in contrast with 100% achieving DAS28 remission. ConclusionThis first cohort study in Belgium allowed to compare its data to other existing cohorts and to evaluate quality of care in Belgian French-speaking hospitals. Additionally, it highlighted a superiority of JADAS10 over DAS28 to monitor and evaluate remission in JIA. This study also underlined a need for more accurate markers of prognosis to improve treatment and long-term outcomes.

Measuring quality of care and long term outcomes for those registered on the Bi-National Burns Registry (Bi-NBR)

Injury ◽  
2010 ◽  
Vol 41 ◽  
pp. S60-S61
Author(s):  
D. Watterson ◽  
B. Gabbe ◽  
N. Picton ◽  
A. Hannaford ◽  
P.A. Cameron
Keyword(s):  
Quality Of Care ◽  
Long Term Outcomes
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