quality registry
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Karen M. Barclay ◽  
Monique F. Kilkenny ◽  
Sibilah J. Breen ◽  
Olivia F. Ryan ◽  
Kathleen L. Bagot ◽  

2022 ◽  
Vol 19 (1) ◽  
Nina Sundström ◽  
Johanna Rydja ◽  
Johan Virhammar ◽  
Lena Kollén ◽  
Fredrik Lundin ◽  

Abstract Background The aim of this study was to describe the outcome measure timed up and go (TUG) in a large, nationwide cohort of patients with idiopathic normal pressure hydrocephalus (iNPH) pre- and post-operatively. Furthermore, to compare the TUG test to the 10-m walk test (10MWT), the iNPH scale, the modified Rankin scale (mRS) and the Mini Mental State Examination (MMSE), which are commonly applied in clinical assessment of iNPH. Methods Patients with iNPH (n = 1300), registered in the Swedish Hydrocephalus Quality Registry (SHQR), were included. All data were retrieved from the SHQR except the 10MWT, which was collected from patient medical records. Clinical scales were examined pre- and 3 months post-operatively. Data were dichotomised by sex, age, and preoperative TUG time. Results Preoperative TUG values were 19.0 [14.0–26.0] s (median [IQR]) and 23 [18–30] steps. Post-operatively, significant improvements to 14.0 [11.0–20.0] s and 19 [15–25] steps were seen. TUG time and steps were higher in women compared to men (p < 0.001) but there was no sex difference in improvement rate. Worse preoperative TUG and younger age favoured improvement. TUG was highly correlated to the 10MWT, but correlations of post-operative changes were only low to moderate between all scales (r = 0.22–0.61). Conclusions This study establishes the distribution of TUG in iNPH patients and shows that the test captures important clinical features that improve after surgery independent of sex and in all age groups, confirming the clinical value of the TUG test. TUG performance is associated with performance on the 10MWT pre- and post-operatively. However, the weak correlations in post-operative change to the 10MWT and other established outcome measures indicate an additional value of TUG when assessing the effects of shunt surgery.

2022 ◽  
Vol 22 (1) ◽  
Ylva Haig ◽  
Eli Feiring

Abstract Background Clinical quality registries (CQRs) can likely improve quality in healthcare and research. However, studies indicate that effective use of CQRs is hindered by lack of engagement and interest among stakeholders, as well as factors related to organisational context, registry design and data quality. To fulfil the potential of CQRs, more knowledge on stakeholders’ perceptions of the factors that will facilitate or hamper the development of CQRs is essential to the more appropriate targeting of registry implementation and the subsequent use of the data. The primary aim of this study was to examine factors that can potentially affect the development of a national CQR for interventional radiology in Norway from the perspective of stakeholders. Furthermore, we wanted to identify the intervention functions likely to enable CQR development. Only one such registry, located in Sweden, has been established. To provide a broader context for the Norwegian study, we also sought to investigate experiences with the development of this registry. Methods A qualitative study of ten Norwegian radiologists and radiographers using focus groups was conducted, and an in-depth interview with the initiator of the Swedish registry was carried out. Questions were based on the Capability, Opportunity and Motivation for Behaviour Model and the Theoretical Domains Framework. The participants’ responses were categorised into predefined themes using a deductive process of thematic analysis. Results Knowledge of the rationale used in establishing a CQR, beliefs about the beneficial consequences of a registry for quality improvement and research and an opportunity to learn from a well-developed registry were perceived by the participants as factors facilitating CQR development. The study further identified a range of development barriers related to environmental and resource factors (e.g., a lack of organisational support, time) and individuallevel factors (e.g., role boundaries, resistance to change), as well as several intervention functions likely to be appropriate in targeting these barriers. Conclusion This study provides a deeper understanding of factors that may be involved in the behaviour of stakeholders regarding the development of a CQR. The findings may assist in designing, implementing and evaluating a methodologically rigorous CQR intervention.

Christine Chidiac ◽  
N. Sundström ◽  
M. Tullberg ◽  
L. Arvidsson ◽  
M. Olivecrona

Abstract Introduction Idiopathic normal pressure hydrocephalus (iNPH) is a disease that comes with a great impact on the patient’s life. The only treatment for iNPH, which is a progressive disease, is shunt surgery. It is previously indicated that early intervention might be of importance for the outcome. Aim To investigate if a longer waiting time for surgery, negatively influences the clinical outcome. Methods Eligible for this study were all iNPH patients (n = 3007) registered in the Swedish Hydrocephalus Quality Registry (SHQR) during 1st of January 2004–12th of June 2019. Waiting time, defined as time between the decision to accept a patient for surgery and shunt surgery, was divided into the intervals ≤ 3, 3.1–5.9 and ≥ 6 months. Clinical outcome was assessed 3 and 12 months after surgery using the modified iNPH scale, the Timed Up and Go (TUG) test and the mini mental state examination (MMSE). Results Three months after surgery, 57% of the patients with ≤ 3 months waiting time showed an improvement in modified iNPH scale (≥ 5 points) whereas 52% and 46% of patients with 3.1–5.9 and ≥ 6 months waiting time respectively improved (p = 0.0115). At 12 months of follow-up, the corresponding numbers were 61%, 52% and 51% respectively (p = 0.0536). Conclusions This population-based study showed that in patients with iNPH, shunt surgery should be performed within 3 months of decision to surgery, to attain the best outcome.

2021 ◽  
pp. 175857322110560
Wesley WH Teoh ◽  
Corey Scholes ◽  
Harry Clitherow

Background The choice of patient-reported outcome measure (PROM) used in shoulder studies varies based on clinician's preference and location. This creates difficulties when attempting to compare studies which have used different PROMs as their outcome measure. This study aims to assess the agreement between the American Shoulder and Elbow Surgeons score (ASES) and the Oxford Shoulder Score (OSS), and identify factors associated with agreement. Methods Patients with shoulder pathology were identified from a multi-cohort observational practice registry. 1050 paired ASES and OSS pre-treatment scores were prospectively collected. Linear regression was performed to assess the agreement between the PROMs. Mixed-effects analysis of variance was performed to assess the influence of factors associated with agreement. Results Regression for mean total and mean function ASES and OSS demonstrated good fit (adjusted R2 57.7%, P < 0.001; and 63.9%, P < 0.001). Mean pain subscore demonstrated a poorer fit (adjusted R2 39.4%, P < 0.001). Crosswalks to convert between mean scores were produced with reasonable precision. Veterans RAND 12-Item Health Survey score, age and diagnosis cohort influenced agreement. Conclusion Mean total and mean function ASES and OSS scores agree well with each other. This allows for a more informed comparison of studies using either PROMs as their outcome measure.

Lotte Assing Winckelmann ◽  
Sigrid Bjerge Gribsholt ◽  
Lene Ring Madsen ◽  
Bjørn Richelsen ◽  
Elisabeth Svensson ◽  

Lianne D. Peppel ◽  
Majanka H. Heijenbrok-Kal ◽  
Thomas A. Van Essen ◽  
Godard C. W. De Ruiter ◽  
Wilco C. Peul ◽  

Objective: To select a set of rehabilitation outcome instruments for a national Neurotrauma Quality Registry (Net-QuRe) among professionals involved in the care of patients with traumatic brain injury. Design: A 3-round online Delphi procedure. Subjects: Eighty professionals from multiple disciplines working in 1 of the 8 participating rehabilitation centres were invited to participate. The response rate varied from 70% to 76% per round. Methods: For the Delphi procedure, multiple outcome categories were defined based on the International Classification of Functioning, Disability and Health (ICF) with concomitant measurement instruments. For each category we strived for consensus on one instrument of at least 75%. Results: After the first round, consensus was reached for the category subjective cognitive functioning. After the second round for quality of life, pain, general functioning, anxiety and depression, general psychological functioning, communication (impairment), and personal factors. Finally, after the third round, consensus was reached for activities of daily living, participation, self-awareness, and aphasia. No consensus was reached for the categories motor function, cognitive function, comorbidity, fatigue, and employment status. Conclusion: Consensus was reached in 12 out of 17 outcome categories. A Delphi procedure seems to be a feasible method to collectively select measurement instruments for a multicentre study.

Carla Santos-Araújo ◽  
Pedro Mota Veiga ◽  
Mário João Santos ◽  
Lidia Santos ◽  
Catarina Romãozinho ◽  

Abstract Background Vaccination programs are essential for the containment of the COVID-19 pandemic, which has affected hemodialysis populations especially hard. Early reports suggest a reduced immunologic response to SARS-Cov-2 vaccines in dialysis patients, in spite of a high degree of seroconversion. We aimed to identify risk factors for a reduced efficacy of an mRNA vaccine in a cohort of hemodialysis patients. Method In a multicenter study, including 294 Portuguese hemodialysis patients who had received 2 doses of BNT162b2 with a three week interval, IgG-class antibodies against the SARS-CoV-2 spike protein were determined 3 weeks after the first dose (M1) and 6 weeks after the second dose (M2). The threshold for seroconversion was 10UR/mL. Demographic and clinical data was retrieved from a quality registry. Adverse events were registered using a questionnaire. Results At M2, seroconversion was 93.1% with a median antibody level of 197.5U/mL (1.2–3237.0) and a median increase of 180.0U/mL (-82.9–2244.6) from M1. Age (beta -8.9; 95%CI: -12.88 to -4.91; P &lt; 0.0001), ferritin &gt; 600ng/mL (beta 183.93;  95%CI: 74.75 to 293.10; P = 0.001) and physical activity (beta 265.79; 95%CI: 30.7 to 500.88; P = 0.03) were independent predictors of SARS-Cov-2 antibody levels after two vaccine doses. Plasma albumin &gt; 3.5g/dL independently predicted the increase of antibody levels between both doses (OR 14.72; 95%CI: 1.38 to 157.45; P = 0.03). Only mild adverse reactions were observed in 10.9% of patients. Conclusions The SARS-Cov-2 vaccine BNT162b2 is safe and effective in hemodialysis patients. Besides age, iron status and nutrition are possible modifiable modulators of the immunologic response to SARS-Cov-2 mRNA vaccines. This data suggests the need for an early identification of populations at higher risk for diminished antibody production and the potential advantage of the implementation of oriented strategies to maximize the immune response to vaccination in these patients.

Georgina M Chambers ◽  
Stephanie K.Y. Choi ◽  
Katie Irvine ◽  
Christos Venetis ◽  
Katie Harris ◽  

IntroductionAssisted reproductive technologies (ART), such as in-vitro fertilisation (IVF), have revolutionised the treatment of infertility, with an estimated 8 million babies born worldwide. However, the long-term health outcomes for women and their offspring remain an area of concern. Linking IVF treatment data to long-term health data is the most efficient method for assessing such outcomes. ObjectivesTo describe the creation and performance of a bespoke population-based data linkage of an ART clinical quality registry to state-based and national administrative datasets. MethodsThe linked dataset was created by deterministically and probabilistically linking the Australia and New Zealand Assisted Reproduction Database (ANZARD) to New South Wales (NSW) and Australian Capital Territory (ACT) administrative datasets (performed by NSW Centre for Health Record Linkage (CHeReL)) and to national claims datasets (performed by Australian Institute of Health and Welfare (AIHW)). The CHeReL's Master Linkage Key (MLK) was used as a bridge between ANZARD's partially identifiable patient data (statistical linkage key) and NSW and ACT administrative datasets. CHeReL then provided personal identifiers to the AIHW to obtain national content data. The results of the linkage were reported, and concordance between births recorded in ANZARD and perinatal data collections (PDCs) was evaluated. ResultsOf the 62,833 women who had ART treatment in NSW or ACT, 60,419 could be linked to the CHeReL MLK (linkage rate: 96.2%). A reconciliation of ANZARD-recorded births among NSW residents found that 94.2% (95% CI: 93.9--94.4%) of births were also recorded in state/territory-based PDCs. A high concordance was found in plurality status and birth outcome (≥99% agreement rate, Cohen's kappa ranged: 0.78--0.98) between ANZARD and PDCs. ConclusionThe data linkage resource demonstrates that high linkage rates can be achieved with partially identifiable data and that a population spine, such as the CHeReL's MLK, can be successfully used as a bridge between clinical registries and administrative datasets.

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