Additional file 3 of Who lives in care homes in Greenland? A nationwide survey of demographics, functional level, medication use and comorbidities

Additional file 3

Additional file 2 of Who lives in care homes in Greenland? A nationwide survey of demographics, functional level, medication use and comorbidities

Additional file 2

Additional file 1 of Who lives in care homes in Greenland? A nationwide survey of demographics, functional level, medication use and comorbidities

Additional file 1

Who lives in care homes in Greenland? A nationwide survey of demographics, functional level, medication use and comorbidities

Abstract Background Greenland is facing an ageing population, and little is known about the characteristics of the elderly population in Greenland. This study offers both a comparison and a description of the demographics, causes of admission, comorbidities and medication of the residents in care homes in the capital, major and minor towns in four of the five administrative regions of Greenland. Methods The study was conducted from 2010 to 2016 as a descriptive questionnaire-based cross-sectional study. Data from eligible residents from eight care homes were collected from the regular care staff. Data were categorised into three groups based on town size for analysis. Results 244 (100 %) of eligible residents participated in the study. Nearly 100 % were of Greenlandic ethnicity based on parents’ place of birth, and 62 % were women. The median age at admission/study was 69/71 years for men and 77/79 years for women (both p = 0.001). The median Body Mass Index was 25.6 kg/m2, more than half of the population were previous- or never-smokers and less than ten per cent consumed more than ten drinks of alcohol per week. The most common causes of admission were dementia (25.4 %), stroke (19.3 %) and social causes (11.1 %), while stroke (30.7 %), dementia (29.5 %) and musculoskeletal diseases (25.8 %) were the most common diagnoses at the time of the study. The Barthel Index was used to estimate the residents’ level of independence, and residents in smaller towns were found to have a higher level of independence than residents in the capital. The median number of prescribed medications was five, and more residents in the capital were prescribed more than ten medications than elsewhere in Greenland. Conclusions This study is the first to describe care home residents in Greenland. We found a population younger than residents in comparable Danish care homes and that women were older than men at admission. In addition, care home residents in the capital had a lower level of independence and a higher number of prescribed medications, which could relate to differences in morbidity, access to health care services and differences in social circumstances influencing the threshold for care home admission

The PROMova study comparing active and passive use of patient-reported outcome measures in ovarian cancer follow-up: effect on patient-perceived involvement, satisfaction with care, and usefulness

Patients with ovarian cancer often experience substantial health problems and side effects resulting in reduced quality of life (QoL). Different models of using patient-reported outcome measures (PROMs) during follow-up may improve the quality of care. This national, multicenter observational study investigated the effect of active use of PROMs on patient-perceived involvement, satisfaction with care, unmet needs, and QoL during follow-up of ovarian cancer. Ovarian cancer patients were recruited at the end of primary treatment at eight centers in Denmark. During 18 months of follow-up patients repeatedly completed European Organization for Research and Treatment of Cancer (EORTC) questionnaires covering health related QoL and symptoms. At the sites using PROMs actively (ACT), the clinician had access to an overview of the patient's scores during the clinical encounter. Clinicians using PROMs passively were alerted in case of severe development of symptoms. Following each encounter, patients evaluated their health service experience by completing the CollaboRATE scale of involvement in decision making, the Patient Experience Questionnaire, and ad hoc questions covering patient-perceived usefulness of the PROMs. A total of 223 patients were enrolled, i.e., 168 (75.3%) at five sites using ACT and 53 (23.8%) at three sites using them passively. We found no statistically significant difference in involvement in the decision making, satisfaction with care, unmet needs, and QoL between the two groups. The majority of patients found it useful to complete the PROMs, although it did not seem to significantly support them in raising issues with the oncologist. Active use of PROMs did not improve patients’ experience of involvement in follow-up care as compared to passive use

The PROMova study comparing active and passive use of patient-reported outcome measures in ovarian cancer follow-up: effect on patient-perceived involvement, satisfaction with care, and usefulness

Patients with ovarian cancer often experience substantial health problems and side effects resulting in reduced quality of life (QoL). Different models of using patient-reported outcome measures (PROMs) during follow-up may improve the quality of care. This national, multicenter observational study investigated the effect of active use of PROMs on patient-perceived involvement, satisfaction with care, unmet needs, and QoL during follow-up of ovarian cancer. Ovarian cancer patients were recruited at the end of primary treatment at eight centers in Denmark. During 18 months of follow-up patients repeatedly completed European Organization for Research and Treatment of Cancer (EORTC) questionnaires covering health related QoL and symptoms. At the sites using PROMs actively (ACT), the clinician had access to an overview of the patient's scores during the clinical encounter. Clinicians using PROMs passively were alerted in case of severe development of symptoms. Following each encounter, patients evaluated their health service experience by completing the CollaboRATE scale of involvement in decision making, the Patient Experience Questionnaire, and ad hoc questions covering patient-perceived usefulness of the PROMs. A total of 223 patients were enrolled, i.e., 168 (75.3%) at five sites using ACT and 53 (23.8%) at three sites using them passively. We found no statistically significant difference in involvement in the decision making, satisfaction with care, unmet needs, and QoL between the two groups. The majority of patients found it useful to complete the PROMs, although it did not seem to significantly support them in raising issues with the oncologist. Active use of PROMs did not improve patients’ experience of involvement in follow-up care as compared to passive use

Identification and Functional Characterization of a Novel Susceptibility Locus for Small Vessel Vasculitis with MPO-ANCA

Objective To identify and characterize genetic loci associated with the risk of developing ANCA-associated vasculitides (AAV). Methods Genetic association analyses were performed after Illumina sequencing of 1853 genes and subsequent replication with genotyping of selected single nucleotide polymorphisms in a total cohort of 1110 Scandinavian cases with granulomatosis with polyangiitis or microscopic polyangiitis, and 1589 controls. A novel AAV-associated single nucleotide polymorphism was analysed for allele-specific effects on gene expression using luciferase reporter assay. Results PR3-ANCA+ AAV was significantly associated with two independent loci in the HLA-DPB1/HLA-DPA1 region [rs1042335, P = 6.3 × 10−61, odds ratio (OR) 0.10; rs9277341, P = 1.5 × 10−44, OR 0.22] and with rs28929474 in the SERPINA1 gene (P = 2.7 × 10−10, OR 2.9). MPO-ANCA+ AAV was significantly associated with the HLA-DQB1/HLA-DQA2 locus (rs9274619, P = 5.4 × 10−25, OR 3.7) and with a rare variant in the BACH2 gene (rs78275221, P = 7.9 × 10−7, OR 3.0), the latter a novel susceptibility locus for MPO-ANCA+ granulomatosis with polyangiitis/microscopic polyangiitis. The rs78275221-A risk allele reduced luciferase gene expression in endothelial cells, specifically, as compared with the non-risk allele. Conclusion We identified a novel susceptibility locus for MPO-ANCA+ AAV and propose that the associated variant is of mechanistic importance, exerting a regulatory function on gene expression in specific cell types

Qualitative longitudinal research in health research: a method study

Abstract Background Qualitative longitudinal research (QLR) comprises qualitative studies, with repeated data collection, that focus on the temporality (e.g., time and change) of a phenomenon. The use of QLR is increasing in health research since many topics within health involve change (e.g., progressive illness, rehabilitation). A method study can provide an insightful understanding of the use, trends and variations within this approach. The aim of this study was to map how QLR articles within the existing health research literature are designed to capture aspects of time and/or change. Methods This method study used an adapted scoping review design. Articles were eligible if they were written in English, published between 2017 and 2019, and reported results from qualitative data collected at different time points/time waves with the same sample or in the same setting. Articles were identified using EBSCOhost. Two independent reviewers performed the screening, selection and charting. Results A total of 299 articles were included. There was great variation among the articles in the use of methodological traditions, type of data, length of data collection, and components of longitudinal data collection. However, the majority of articles represented large studies and were based on individual interview data. Approximately half of the articles self-identified as QLR studies or as following a QLR design, although slightly less than 20% of them included QLR method literature in their method sections. Conclusions QLR is often used in large complex studies. Some articles were thoroughly designed to capture time/change throughout the methodology, aim and data collection, while other articles included few elements of QLR. Longitudinal data collection includes several components, such as what entities are followed across time, the tempo of data collection, and to what extent the data collection is preplanned or adapted across time. Therefore, there are several practices and possibilities researchers should consider before starting a QLR project