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Summary Central disorders of hypersomnolence (CDH) are chronic diseases that significantly impact the lives of affected individuals. We aimed to explore the perspectives of individuals with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH), and the challenges they encounter in their daily lives and within the healthcare systems in the Nordics. Interviews with patients (N = 41) and healthcare professionals (n = 14) and a patient survey (n = 70) were conducted in 2022 in Denmark, Sweden, Finland, and Norway to develop a patient journey map that visualises the patient with CDH journey and provides insights into the difficulties faced by these individuals. The patient journey mapping approach was chosen to focus on the processes and experiences of patients, highlighting the challenges they confront. Our findings revealed that the process of receiving a CDH diagnosis, as well as subsequent misdiagnoses and treatment, can be protracted and burdensome. CDH diagnoses remain poorly understood by neurologists, general practitioners, and the public, resulting in adverse consequences, with patients reporting a mean (standard deviation [SD]) time from symptom onset to diagnosis of 8.4 (5.11) years and a mean (SD) of 5.5 (4.17) productive hours lost/day. The available non‐pharmaceutical support for patients with CDH, encompassing medical, psychological, educational, and professional assistance, was insufficient. The generalisability of the findings to one specific diagnosis is limited due to the collective analysis of the CDH. These findings are invaluable for identifying disruptions in the patient with CDH journeys and for designing improved pathways for those with NT1, NT2, and IH in the future. [ABSTRACT FROM AUTHOR]

Objectives: The Finnish dental care market operates as a dual system, divided between a regulated, affordable public sector and a less regulated, more expensive private sector that receives public subsidies. In 2015 and 2016, two policy interventions were introduced to reduce these subsidies for private dental services. The aim of this study was to evaluate the impact of these policy changes on the dental care market. Methods: This study was a realist evaluation. Context‐Intervention‐Mechanism‐Outcome‐configurations were applied to elicit an initial program theory (IPT) for the policy interventions. The IPT allowed a complicated system to be reduced to the main components, allowing for better understanding of the underlying mechanisms and the chain of events started by the interventions. The resulting hypotheses about the chain of events and outcomes were tested against a dataset collected from the Social Insurance Institution of Finland (SII) registries on public and private dental visits in the cities of Espoo, Helsinki and Oulu during the years 2010–2016. The used dataset consisted of N = 17 111 625 dental procedures or N = 8 139 990 individual visits (which can include several procedures) at a public (n = 9 097 407 procedures, n = 4 083 475 visits) or a private (n = 8 014 218 procedures or n = 4 056 515 visits) dental clinic. The system was studied during three time periods related to the two interventions in 2015 and in 2016. Changes were evaluated by statistically analysing changes in several key metrics: mean subsidy, mean out‐of‐pocket price, mean (non‐subsidized) price, number of patients treated, number of professionals, procedures per professional, Case‐Mix adjusted procedures per professional, patient‐to‐professional ratio, total procedures. Results: The 2015 and 2016 reductions to the subsidization of private dental care reduced the average subsidies paid to the private dental sector by 49% [−49.1, −38.8]. A 26% [25.2, 26.7] increase in the out‐of‐pocket price paid in the private sector was observed. Over the 2 years, 12.2% of patients left the private sector and an increase of 13% was observed in the number of patients treated in the public sector. The public sector increased its number of dental care professionals by 2.3% and the patient‐to‐professional ratio increased by 9.9% over the 2 years, while the private sector lost 4.6% of its dental care professionals and increased its prices by 4.0% [3.5, 4.5]. Conclusions: The policy changes had tangible effects on both the private and public sectors of the Finnish dental care market. By reducing subsidies, the private sector became more expensive for patients, causing many to transition to the public sector for their dental needs. While the public sector increased its capacity to accommodate the rise in patients, the demand still outpaced the growth in professionals, hinting at capacity or resource constraints in the public sector. The results also show initial evidence that contrary to the objectives, the policy changes increased the cost to the public sector as subsidized patient cared for in the private sector costs less to the government than treating that same patient in the public sector. [ABSTRACT FROM AUTHOR]

Background: Patient pathways (PPs) are presented as a panacea solution to enhance health system functions. It is a complex concept that needs to be described and communicated well. Modeling plays a crucial role in promoting communication, fostering a shared understanding, and streamlining processes. Only a few existing systematic reviews have focused on modeling methods and standardized modeling languages. There remains a gap in consolidated knowledge regarding the use of diverse visual modeling languages., Objective: This scoping review aimed to compile visual modeling languages used to represent PPs, including the justifications and the context in which a modeling language was adopted, adapted, combined, or developed., Methods: After initial experimentation with the keywords used to describe the concepts of PPs and visual modeling languages, we developed a search strategy that was further refined and customized to the major databases identified as topically relevant. In addition, we consulted gray literature and conducted hand searches of the referenced articles. Two reviewers independently screened the articles in 2 stages using preset inclusion criteria, and a third reviewer voted on the discordance. Data charting was done using an iteratively developed form in the Covidence software. Descriptive and thematic summaries were presented following rounds of discussion to produce the final report., Results: Of 1838 articles retrieved after deduplication, 22 satisfied our inclusion criteria. Clinical pathway is the most used phrase to represent the PP concept, and most papers discussed the concept without providing their operational definition. We categorized the visual modeling languages into five categories: (1) general purpose-modeling language (GPML) adopted without major extension or modification, (2) GPML used with formal extension recommendations, (3) combination of 2 or more modeling languages, (4) a developed domain-specific modeling language (DSML), and (5) ontological modeling languages. The justifications for adopting, adapting, combining, and developing visual modeling languages varied accordingly and ranged from versatility, expressiveness, tool support, and extensibility of a language to domain needs, integration, and simplification., Conclusions: Various visual modeling languages were used in PP modeling, each with varying levels of abstraction and granularity. The categorization we made could aid in a better understanding of the complex combination of PP and modeling languages. Standardized GPMLs were used with or without any modifications. The rationale to propose any modification to GPMLs evolved as more evidence was presented following requirement analyses to support domain constructs. DSMLs are infrequently used due to their resource-intensive development, often initiated at a project level. The justifications provided and the context where DSMLs were created are paramount. Future studies should assess the merits and demerits of using a visual modeling language to facilitate PP communications among stakeholders and use evaluation frameworks to identify, modify, or develop them, depending on the scope and goal of the modeling need., (©Binyam Bogale, Märt Vesinurm, Paul Lillrank, Elisabeth Gulowsen Celius, Ragnhild Halvorsrud. Originally published in the Interactive Journal of Medical Research (https://www.i-jmr.org/), 15.11.2024.)

Background: Helsinki University Hospital has developed a digital care pathway (DCP) for people with multiple sclerosis (MS) to improve the care quality. DCP was designed for especially newly diagnosed patients to support adaptation to a chronic disease., Objective: This study investigated the MS DCP user behavior and its impact on patient education-mediated changes in health care use, patient-perceived impact of MS on psychological and physical functional health, and patient satisfaction., Methods: We collected data from the service launch in March 2020 until the end of 2022 (observation period). The number of users, user logins, and their timing and messages sent were collected. The association of the DCP on health care use was studied in a case-control setting in which patients were allowed to freely select whether they wanted to use the service (DCP group n=63) or not (control group n=112). The number of physical and remote appointments either to a doctor, nurse, or other services were considered in addition to emergency department visits and inpatient days. The follow-up time was 1 year (study period). Furthermore, a subgroup of 36 patients was recruited to fill out surveys on net promoter score (NPS) at 3, 6, and 12 months, and their physical and psychological functional health (Multiple Sclerosis Impact Scale) at 0, 3, 6, and 12 months., Results: During the observation period, a total of 225 patients had the option to use the service, out of whom 79.1% (178/225) logged into the service. On average, a user of the DCP sent 6.8 messages and logged on 7.4 times, with 72.29% (1182/1635) of logins taking place within 1 year of initiating the service. In case-control cohorts, no statistically significant differences between the groups were found for physical doctors' appointments, remote doctors' contacts, physical nurse appointments, remote nurse contacts, emergency department visits, or inpatient days. However, the MS DCP was associated with a 2.05 (SD 0.48) visit increase in other services, within 1 year from diagnosis. In the prospective DCP-cohort, no clinically significant change was observed in the physical functional health between the 0 and 12-month marks, but psychological functional health was improved between 3 and 6 months. Patient satisfaction improved from the NPS index of 21 (favorable) at the 3-month mark to the NPS index of 63 (excellent) at the 12-month mark., Conclusions: The MS DCP has been used by a majority of the people with MS as a complementary service to regular operations, and we find high satisfaction with the service. Psychological health was enhanced during the use of MS DCP. Our results indicate that DCPs hold great promise for managing chronic conditions such as MS. Future studies should explore the potential of DCPs in different health care settings and patient subgroups., (©Märt Vesinurm, Anna Maunula, Päivi Olli, Paul Lillrank, Petra Ijäs, Paulus Torkki, Laura Mäkitie, Sini M Laakso. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 07.08.2024.)