2019 APLC Publications

Development of the Asia Pacific Lupus Collaboration cohort
This manuscript describes how the Asia Pacific Lupus Collaboration (APLC) came together to develop one of the largest, contemporary SLE cohorts in the world, with a substantial representation of Asian Ethnicity. It gives an overview of the organisation and governance of the APLC, methodology of patient recruitment and consent; data collection, data transfer and data management. Pubmed link

Does expert opinion match the operational definition of the lupus low disease activity state (LLDAS)? A case based construct validity study
The operational definition of LLDAS was tested against expert opinion. Fifty SLE case summaries based on real patients were assessed for disease activity state by fifty SLE experts.  Agreement between expert opinion and LLDAS was assessed using Cohen’s Kappa. Overall agreement between expert opinion and the operational definition of LLDAS was 77.96%.  LLDAS was more stringent than expert opinion at defining a low disease activity state, with the majority of disagreement where experts classified the case as remission/low activity but the operational definition of LLDAS was not met. Common reasons for discordance were assignment to remission/low activity of cases with higher corticosteroid doses than defined in LLDAS (prednisolone≤7.5mg) or with SLEDAI-2K>4 due to serological activity (high anti-dsDNA antibody and/or low complement).  Pubmed link


Association of the Lupus Low Disease Activity State (LLDAS) with Health-Related Quality of Life in a Multinational Prospective Study
Health related quality of life (HR-QoL) was measured using the Medical Outcomes Study 36-item Short Form Health Survey (SF-36v2) in a prospective study of 1422 patients. Significant differences in were found between patients stratified by ethnic group, education level, damage score, and with the presence of active musculoskeletal or cutaneous manifestations. Patients in LLDAS had better physical and mental component summary scores and significantly better scores in multiple individual SF-36 domain scores.  Pubmed link


Frequency and Predictors of the Lupus Low Disease Activity State (LLDAS) in a Multi-National and Multi-Ethnic Cohort
Frequency and predictors of the Lupus Low Disease Activity State (LLDAS) were assessed in a multinational cohort of 1846 SLE patients. LLDAS was observed in 44% of patients with SLE at a single point in time. Patients with shorter disease duration, with a history of cutaneous disease, renal disease, elevated double stranded DNA or hypocomplementaemia were less likely to be in LLDAS. When countries were compared, higher national social wealth as measured by the Gross Domestic Product per capita was positively associated with LLDAS, but not ethnicity.  Pubmed link


Definition and Initial Validation of a Lupus Low Disease Activity State (LLDAS)
The definition of LLDAS was generated using Delphi and nominal group technique, which support face and content validity. Criterion validity of LLDAS was assessed by measuring the ability of LLDAS attainment to predict non-accrual of irreversible organ damage using a single centre SLE cohort. This initial validation study demonstrated that LLDAS attainment was associated with improved outcomes including lower disease activity scores (SLEDAI-2k); fewer flares and reduced organ damage.  Pubmed link