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Objective: Natural language processing (NLP) can enhance research on activities of daily living (ADL) by extracting structured information from unstructured electronic health records (EHRs) notes. This review aims to give insight into the state-of-the-art, usability, and performance of NLP systems to extract information on ADL from EHRs., Materials and Methods: A systematic review was conducted based on searches in Pubmed, Embase, Cinahl, Web of Science, and Scopus. Studies published between 2017 and 2022 were selected based on predefined eligibility criteria., Results: The review identified 22 studies. Most studies (65%) used NLP for classifying unstructured EHR data on 1 or 2 ADL. Deep learning, combined with a ruled-based method or machine learning, was the approach most commonly used. NLP systems varied widely in terms of the pre-processing and algorithms. Common performance evaluation methods were cross-validation and train/test datasets, with F1, precision, and sensitivity as the most frequently reported evaluation metrics. Most studies reported relativity high overall scores on the evaluation metrics., Discussion: NLP systems are valuable for the extraction of unstructured EHR data on ADL. However, comparing the performance of NLP systems is difficult due to the diversity of the studies and challenges related to the dataset, including restricted access to EHR data, inadequate documentation, lack of granularity, and small datasets., Conclusion: This systematic review indicates that NLP is promising for deriving information on ADL from unstructured EHR notes. However, what the best-performing NLP system is, depends on characteristics of the dataset, research question, and type of ADL., Competing Interests: None declared., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Background: Scientific researchers who wish to reuse health data pertaining to individuals can obtain consent through an opt-in procedure or opt-out procedure. The choice of procedure may have consequences for the consent rate and representativeness of the study sample and the quality of the research, but these consequences are not well known., Objective: This review aimed to provide insight into the consequences for the consent rate and consent bias of the study sample of opt-in procedures versus opt-out procedures for the reuse of routinely recorded health data for scientific research purposes., Methods: A systematic review was performed based on searches in PubMed, Embase, CINAHL, PsycINFO, Web of Science Core Collection, and the Cochrane Library. Two reviewers independently included studies based on predefined eligibility criteria and assessed whether the statistical methods used in the reviewed literature were appropriate for describing the differences between consenters and nonconsenters. Statistical pooling was conducted, and a description of the results was provided., Results: A total of 15 studies were included in this meta-analysis. Of the 15 studies, 13 (87%) implemented an opt-in procedure, 1 (7%) implemented an opt-out procedure, and 1 (7%) implemented both the procedures. The average weighted consent rate was 84% (60,800/72,418 among the studies that used an opt-in procedure and 96.8% (2384/2463) in the single study that used an opt-out procedure. In the single study that described both procedures, the consent rate was 21% in the opt-in group and 95.6% in the opt-out group. Opt-in procedures resulted in more consent bias compared with opt-out procedures. In studies with an opt-in procedure, consenting individuals were more likely to be males, had a higher level of education, higher income, and higher socioeconomic status., Conclusions: Consent rates are generally lower when using an opt-in procedure compared with using an opt-out procedure. Furthermore, in studies with an opt-in procedure, participants are less representative of the study population. However, both the study populations and the way in which opt-in or opt-out procedures were organized varied widely between the studies, which makes it difficult to draw general conclusions regarding the desired balance between patient control over data and learning from health data. The reuse of routinely recorded health data for scientific research purposes may be hampered by administrative burdens and the risk of bias., (©Yvonne de Man, Yvonne Wieland-Jorna, Bart Torensma, Koos de Wit, Anneke L Francke, Mariska G Oosterveld-Vlug, Robert A Verheij. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 28.02.2023.)

Background: Optimal care for Parkinson's disease (PD) requires coordination and collaboration between providers within a complex care network. Individual patients have personalised networks of their own providers, creating a unique informal network of providers who treat ('share') the same patient. These 'patient-sharing networks' differ in density, ie, the number of identical patients they share. Denser patient-sharing networks might reflect better care provision, since providers who share many patients might have made efforts to improve their mutual care delivery. We evaluated whether the density of these patient-sharing networks affects patient outcomes and costs., Methods: We analysed medical claims data from all PD patients in the Netherlands between 2012 and 2016. We focused on seven professional disciplines that are commonly involved in Parkinson care. We calculated for each patient the density score: the average number of patients that each patient's providers shared. Density scores could range from 1.00 (which might reflect poor collaboration) to 83.00 (which might reflect better collaboration). This score was also calculated at the hospital level by averaging the scores for all patients belonging to a specific hospital. Using logistic and linear regression analyses we estimated the relationship between density scores and health outcomes, healthcare utilization, and healthcare costs., Results: The average density score varied considerably (average 6.7, SD 8.2). Adjusted for confounders, higher density scores were associated with a lower risk of PD-related complications (odds ratio [OR]: 0.901; P <.001) and with lower healthcare costs (coefficients: -0.018, P =.005). Higher density scores were associated with more frequent involvement of neurologists (coefficient 0.068), physiotherapists (coefficient 0.052) and occupational therapists (coefficient 0.048) ( P values all <.001)., Conclusion: Patient sharing networks showed large variations in density, which appears unwanted as denser networks are associated with better outcomes and lower costs., (© 2022 The Author(s); Published by Kerman University of Medical Sciences This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.)

Objective: To examine the regional variation in hospital care utilization in the last 6 months of life of Dutch patients with lung cancer and to test whether higher degrees of hospital utilization coincide with less general practitioner (GP) and long-term care use., Design: Cross-sectional claims data study., Setting: The Netherlands., Participants: Patients deceased in 2013-2015 with lung cancer (N = 25 553)., Main Outcome Measures: We calculated regional medical practice variation scores, adjusted for age, gender and socioeconomic status, for radiotherapy, chemotherapy, CT-scans, emergency room contacts and hospital admission days during the last 6 months of life; Spearman Rank correlation coefficients measured the association between the adjusted regional medical practice variation scores for hospital admissions and ER contacts and GP and long-term care utilization., Results: The utilization of hospital services in high-using regions is 2.3-3.6 times higher than in low-using regions. The variation was highest in 2015 and lowest in 2013. For all 3 years, hospital care was not significantly correlated with out-of-hospital care at a regional level., Conclusions: Hospital care utilization during the last 6 months of life of patients with lung cancer shows regional medical practice variation over the course of multiple years and seems to increase. Higher healthcare utilization in hospitals does not seem to be associated with less intensive GP and long-term care. In-depth research is needed to explore the causes of the variation and its relation to quality of care provided at the level of daily practice., (© The Author(s) 2020. Published by Oxford University Press in association with the International Society for Quality in Health Care.)

Background: For older adults, a good transition from hospital to the primary or long-term care setting can decrease readmissions. This paper presents the 6-month post-discharge healthcare utilization of older adults and describes the numbers of readmissions and deaths for the most frequently occurring aftercare arrangements as a starting point in optimizing the post-discharge healthcare organization., Methods: This cross-sectional study included older adults insured with the largest Dutch insurance company. We described the utilization of healthcare within 180 days after discharge from their first hospital admission of 2015 and the most frequently occurring combinations of aftercare in the form of geriatric rehabilitation, community nursing, long-term care, and short stay during the first 90 days after discharge. We calculated the proportion of older adults that was readmitted or had died in the 90-180 days after discharge for the six most frequent combinations. We performed all analyses in the total group of older adults and in a sub-group of older adults who had been hospitalized due to a hip fracture., Results: A total of 31.7% of all older adults and 11.4% of the older adults with a hip fracture did not receive aftercare. Almost half of all older adults received care of a community nurse, whereas less than 5% received long-term home care. Up to 18% received care in a nursing home during the 6 months after discharge. Readmissions were lowest for older adults with a short stay and highest in the group geriatric rehabilitation + community nursing. Mortality was lowest in the total group of older aldults and subgroup with hip fracture without aftercare., Conclusions: The organization of post-discharge healthcare for older adults may not be organized sufficiently to guarantee appropriate care to restore functional activity. Although receiving aftercare is not a clear predictor of readmissions in our study, the results do seem to indicate that older adults receiving community nursing in the first 90 days less often die compared to older adults with other types of aftercare or no aftercare. Future research is necessary to examine predictors of readmissions and mortality in both older adult patients discharged from hospital.

Background: In the Netherlands, the health care system and related information technology landscape are fragmented. Recently, hospitals have started to launch patient portals. It is not clear how these portals are used by patients and their health care providers (HCPs)., Objective: The objective of this study was to explore the adoption, use, usability, and usefulness of a recently introduced patient portal in an academic hospital to learn lessons for the implementation of patient portals in a fragmented health care system., Methods: A mixed methods study design was used. In the quantitative study arm, characteristics of patients who used the portal were analyzed, in addition to the utilization of the different functionalities of the portal. In the qualitative study arms, think-aloud observations were made to explore usability. Focus group discussions were conducted among patients and HCPs of the dermatology and ophthalmology outpatient departments. Thematic content analysis of qualitative data was carried out and overarching themes were identified using a framework analysis., Results: One year after the introduction of the portal, 24,514 patients, 13.49% of all patients who visited the hospital, had logged in to the portal. Adoption of the portal was associated with the age group 45 to 75 years, a higher socioeconomic status, and having at least one medical diagnosis. Overarching themes from the qualitative analyses were (1) usability and user-friendliness of the portal, (2) HCP-patient communication through the portal, (3) usefulness of the information that can be accessed through the portal, (4) integration of the portal in care and work processes, and (5) HCP and patient roles and relationships., Conclusions: One year after the introduction of the patient portal, patients and HCPs who used the portal recognized the potential of the portal to engage patients in their care processes, facilitate patient-HCP communication, and increase patient convenience. Uncertainties among patients and HCPs about how to use the messaging functionality and limited integration of the portal in care and work processes are likely to have limited portal use and usefulness., (©Maria M T Vreugdenhil, Sander Ranke, Yvonne de Man, Maaike M. Haan, Rudolf B. Kool. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 20.08.2019.)

Objective: To reconstruct a sex-specific patient journey for Dutch persons with Parkinson's disease (PD) during the first 5 years after diagnosis. Method: We analyzed a national administrative medical claims database containing data of all patients newly diagnosed with PD between 2012 and 2016 in the Netherlands. We performed time-to-event analysis to identify the moments when patients received care from neurologists, allied healthcare therapists or general practitioners. We also extracted relevant clinical milestones: unexpected hospitalization for PD, pneumonia, orthopedic injuries, nursing home admission, and death. Using these data, we constructed the patient journey stratified for sex. Results: We included claims data of 13,518 men and 8,775 women with newly diagnosed PD in the Netherlands. While we found little difference in neurologist consultations, women visited general practitioners and physiotherapists significantly earlier and more often (all p -values < 0.001). After 5 years, 37.9% ( n = 3,326) of women had visited an occupational therapist and 18.5% ( n = 1,623) a speech and language therapist at least once. This was 33.1% ( n = 4,474) and 23.7% ( n = 3,204) for men. Approximately 2 years after diagnosis, PD-related complications (pneumonia, orthopedic injuries, and PD-related hospitalization) occurred for the first time (women: 1.8 years; men: 2.3 years), and after 5 years, 72.9% ( n = 6,397) of women, and 68.7% ( n = 9,287) of men had experienced at least one. Discussion: Considering the strengths and limitations of our methods, our findings suggest that women experience complications and access most healthcare services sooner after diagnosis and more frequently than men. The identified sex differences extend the debate about phenotypical differences in PD between men and women.

Objectives: The aim of this study is to evaluate the effectiveness of two tapering strategies after achieving controlled disease in patients with rheumatoid arthritis (RA), during 1 year of follow-up., Methods: In this multicentre single-blinded (research nurses) randomised controlled trial, patients with RA were included who achieved controlled disease, defined as a Disease Activity Score (DAS) ≤ 2.4 and a Swollen Joint Count (SJC) ≤ 1, treated with both a conventional synthetic disease-modifying antirheumatic drugs (csDMARD) and a TNF inhibitor. Eligible patients were randomised into gradual tapering csDMARDs or TNF inhibitors. Medication was tapered if the RA was still under control, by cutting the dosage into half, a quarter and thereafter it was stopped. Primary outcome was proportion of patients with a disease flare, defined as DAS > 2.4 and/or SJC > 1. Secondary outcomes were DAS, European Quality of Life-5 Dimensions (EQ5D) and functional ability (Health Assessment Questionnaire Disability Index [HAQ-DI]) after 1 year and over time., Results: A total of 189 patients were randomly assigned to tapering csDMARDs (n = 94) or tapering anti-TNF (n = 95). The cumulative flare rates in the csDMARD and anti-TNF tapering group were, respectively, 33 % (95% CI,24% to 43 %) and 43 % (95% CI, 33% to 53 % (p = 0.17). Mean DAS, HAQ-DI and EQ-5D did not differ between tapering groups after 1 year and over time., Conclusion: Up to 9 months, flare rates of tapering csDMARDs or TNF inhibitors were similar. After 1 year, a non-significant difference was found of 10 % favouring csDMARD tapering. Tapering TNF inhibitors was, therefore, not superior to tapering csDMARDs. From a societal perspective, it would be sensible to taper the TNF inhibitor first, because of possible cost reductions and less long-term side effects., Trial Registration Number: NTR2754., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Understanding the overuse and underuse of health-care services in the end-of-life (EoL) phase for patients with lung cancer (LC) and colorectal cancer (CRC) is important, but knowledge is limited. To help identify inappropriate care, we present the health-care utilization profiles for hospital care at the EoL of patients with LC (N = 25 553) and CRC (N = 14 911) in the Netherlands between 2013 and 2015. An administrative database containing all in-hospital health-care activities was analyzed to investigate the association between the number of days patients spent in the emergency department (ED) or intensive care unit (ICU) and their exposure to chemotherapy or radiotherapy. Fewer patients received hospital care as death neared, but their intensity of care increased. In the last month of life, the average numbers of hospital bed days, ICU days, and ER contacts were 9.0, 5.5, and 1.2 for patients with CRC, and 8.9, 6.2 and 1.2 for patients with LC in 2015. On the other hand, the occurrence of palliative consultations ranged from 1% to 4%. Patients receiving chemotherapy 6 months before death spent fewer days in ICU than those who did not receive this treatment (odds ratios: CRC = 0.6 [95% confidence interval: 0.4-0.8] and LC = 0.7 [0.5-0.9]), while those receiving chemotherapy 1 month before death had more ED visits (odds ratios: CRC = 17.2 [11.8-25.0] and LC = 15.8 [12.0-20.9]). Our results showed that patients who were still receiving hospital care when death was near had a high intensity of care, yet palliative consultations were low. Receiving chemotherapy or radiotherapy in the final month of life was significantly associated with more ED and ICU contacts in patients with LC.

Purpose: The purpose of this study is to describe and compare the relation between treatment aims, hospitalizations, and hospital mortality for Dutch patients who died from lung, colorectal, breast, prostate, or pancreatic cancer., Methods: A mortality follow-back study was conducted within a sentinel network of Dutch general practitioners (GPs), who recorded the end-of-life care of 691 patients who died from one of the abovementioned cancer types between 2009 and 2015. Differences in care by type of cancer were analyzed using multilevel analyses to control for clustering within general practices., Results: Among all cancer types, patients with prostate cancer most often and patients with pancreatic cancer least often had a palliative treatment aim a month before death (95% resp. 84%). Prostate cancer patients were also least often admitted to hospital in the last month of life (18.5%) and least often died there (3.1%), whereas lung cancer patients were at the other end of the spectrum with 41.8% of them being admitted to hospital and 22.6% dying in hospital. Having a palliative treatment aim and being older were significantly associated with less hospital admissions, and having a palliative treatment aim, having prostate cancer, and dying in a more recent year were significantly associated with less hospital deaths., Conclusion: There is large variation between patients with different cancer types with regard to treatment aims, hospital admissions, and hospital deaths. The results highlight the need for early initiation of GP palliative care to support patients from all cancer types to stay at the place they prefer as long as possible.

Objectives: To examine in patients with early rheumatoid arthritis (RA) whether quality of life (QoL), independently of disease activity, is affected by tight control treatment strategy schemes., Methods: In the Computer Assisted Management in Early RA (CAMERA) trials, patients with early RA, disease duration <1 year, no prior use of DMARDs) had been randomised to a methotrexate (MTX)-based tight control strategy or usual care (CAMERA study) or to 10 mg/d prednisone or placebo both added from start to a MTX-based tight control strategy (CAMERA-II study). In either study, randomisation to the more intensive strategy resulted in lower disease activity. To assess QoL, the 'Influence of Rheumatic Diseases on General Health and Lifestyle' questionnaire (IRGL) was used. Baseline and 1- and/or 2-year measurements were analysed with regression analyses with the IRGL (sub)scales as outcome variables and treatment strategy and disease activity assessing 28 joints (DAS28) as independent variables, correcting for baseline values of each scale and possible confounders (gender, age, rheumatoid factor status)., Results: There was no clear association between either of the treatment strategies and QoL, but a decrease in DAS28 was associated with improvement in the majority of QoL (sub)scales., Conclusions: No independent effect of the specific tight control strategies schemes on QoL was found, while there was a clear disease activity related effect. Thus frequent outpatient visits or the inclusion of prednisone in a tight control strategy did not negatively influence QoL.

Background: Anorexia nervosa is associated with somatic complications. Mildly abnormal liver tests are frequently seen; however, severe acute liver injury is rare in anorexia., Case Description: A 23-year-old woman was admitted with acutely elevated liver enzymes and hypoglycemia. All diagnostic tests for acute hepatitis were negative. Therefore, we made the diagnosis of 'acute liver injury due to anorexia'. With supportive care such as rehydration, drip-feed and infusions with glucose, the patient recovered and her liver tests improved., Conclusion: Severe acute liver injury is a rare but life-threatening complication of anorexia nervosa. Its aetiology is unknown. Autophagy of hepatocytes, hypoperfusion of the liver and oxidative stress may play a role in the pathogenesis. Treatment consists of rehydration and nutritional support.

Background: Pregnancy is associated with changes in the immune system. Although previous studies have focussed mainly on adaptive immunity, there are indications that components of innate immunity, such as mannose-binding lectin (MBL), are associated with pregnancy outcome. Although this would suggest that pregnancy also involves adaptations in innate immunity, there are few studies in this area. Therefore, we aimed to determine whether MBL concentrations and the following steps in complement pathway activation are influenced by pregnancy., Methods: MBL and Ficolin-2 concentrations, MBL-MBL-associated serine protease (MASP) complex activity, MBL pathway activity and classical complement pathway activity were determined by enzyme-linked immunosorbent assay (ELISA) in sera from pregnant women (n=32) during each trimester and post-partum. MBL genotyping was performed by PCR., Results: During pregnancy, MBL concentrations increased to 140% [interquartile range (IQR) 116-181%, P < 0.0001]. This increase was already present at 12 weeks of pregnancy and was most pronounced in the high-production AA-genotype. Directly Post-partum MBL concentrations dropped to 57% of baseline (IQR 44-66%, P < 0.0001). Variations in MBL levels were reflected by similar changes in the following steps of complement activation, r > 0.93 (P < 0.01). Ficolin-2 levels and classical complement pathway activity were not similarly influenced by pregnancy., Conclusions: Pregnancy and the post-partum period profoundly influence MBL serum concentration and MBL complement pathway activity.