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Development of a case definition for polycystic ovary syndrome using administrative health data: a validation study

Por: Salem · J. N. · Vettese · R. · Yamamoto · J. M. · Koshy · S. · Harrison · T. · Stephenson · N. · Ronksley · P. E. · Metcalfe · A. · Brennand · E. A. · Benham · J. L.
Objectives

To develop and validate a polycystic ovary syndrome (PCOS) case definition using administrative health data sources.

Design

A validation study.

Setting

Secondary care centre outpatient gynaecology clinic in Calgary, Alberta, Canada.

Participants

3951 electronic health records of women aged 18–45 years who presented to a gynaecology clinic in Calgary, Canada, between January 2014 and December 2019 were reviewed. We identified 180 patients with PCOS using the Rotterdam criteria. Participants were excluded if they were biologically male, pregnant at the time of the consultation, did not meet the date criteria or if their consultation note was missing. The chart data were connected to the Practitioner Claims and the Discharge Abstract Database by personal health number.

Primary and secondary outcome measures

Sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) of 68 case definitions for PCOS were estimated. Case definition performance was graded.

Results

Of the 68 case definitions tested, none had high validity. The best performing case definitions were: (1) ≥3 instances of International Classification of Diseases-9 code 256.4 (polycystic ovaries) with exclusion codes (sensitivity 23.89%, specificity 99.59%, PPV 74.14%, NPV 96.35%) and (2) 626.X (irregular menstruation), 704.1 (hirsutism) and ≥3 instances of code 256.4 with exclusion codes (sensitivity 2.78%, specificity 99.97%, PPV 83.33%, NPV 95.40%).

Conclusions

We identified several case definitions for PCOS of moderate validity with high PPV (>70%) for case ascertainment in PCOS research in jurisdictions with similar administrative health data. These case definitions are limited by low sensitivity, which should be considered when interpreting research findings.

Consensus on addressing HIV-related stigma and achieving the societal enabler targets using an adapted Delphi process

Por: Molesworth · K. · Nkosi · S. · Camacho · S. · Caswell · G. · Salem · S. · Baral · S. · Kamarulzaman · A. · Sprague · L. · Stackpool-Moore · L.
Objectives

To seek consensus among global experts on concepts, measures and approaches to guide national and global action to address HIV-related stigma and formulate a call to action. This outlines priorities to unite actors in more effectively responding to and resourcing efforts to address HIV-related stigma.

Design

An adapted Delphi consensus-building process using two rounds of online questionnaires.

Setting

Online questionnaires sent to a global expert panel.

Participants

50 global experts on HIV-related stigma and discrimination representing sectors including civil society, people living with HIV and key populations, research and academia, clinical practice, law, non-profit organisations, the United Nations, and policy and donor organisations.

Results

The panel reached consensus on 55 points relating to the 12 broad themes extracted from the evidence base. These comprised the importance of addressing HIV-related stigma at scale; HIV-related stigma terms and definitions; Frameworks; Programming and approaches; Community leadership in HIV-related stigma-reduction implementation; Intersectional stigma and discrimination; Stigma and discrimination measures and assessment scales; Monitoring and evaluation; Stakeholder and community participation in monitoring and evaluation; Knowledge gaps and research needs; Funding and Commitment calls. From these, a consensus statement and call to action were formulated on priorities for strong political and financial commitments by all countries to reduce and mitigate HIV-related stigma and achieve global HIV targets adopted in 2021.

Conclusions

This study illustrated that global experts across sectors consider that action is needed to support the three critical enablers of the HIV response—society, systems and services—to ensure that HIV services are non-discriminatory and person-centred. The importance of attention and action to reduce stigma is critical in the current geopolitical and funding crisis affecting HIV and global health.

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