Shared decision-making endorses intention to follow through treatment or vaccination recommendations: a multi-method survey study among older adults.

BACKGROUND: Previous studies have shown that shared decision-making (SDM) between a practitioner and a patient strengthens the ideal of treatment adherence. This study employed a multi-method approach to SDM in healthcare to reinforce the theoretical and methodological grounds of this argument. As the study design, self-reported survey items and experimental vignettes were combined in one electronic questionnaire. This technique aimed to analyze the effects of previous experiences and the current preferences regarding SDM on the intentions to follow-through with the medical recommendations. METHOD: Using quantitative data collected from the members of the Finnish Pensioners' Federation (N = 1610), this study focused on the important and growing population of older adults as healthcare consumers. Illustrated vignettes were used in the evaluation of expected adherence to both vaccination and the treatment of an illness, depending on the decision-making style varying among the repeated scenarios. In a within-subjects study design, each study subject acted as their own control. RESULTS: The findings demonstrated that SDM correlates with expected adherence to a treatment and vaccination. Both the retrospective experiences and prospective aspirations of SDM in clinical encounters supported the patients' expected adherence to vaccination and treatment while decreasing the probability of pseudo-compliance. The association between SDM and expected adherence was not affected by the perceived health of the respondents. However, the associations among the expected adherence and decision-making styles were found to differ between the treatment and vaccination scenarios. CONCLUSIONS: SDM enables expected treatment adherence among older adults. Thus, the multi-method study emphasizes the importance of SDM in various healthcare encounters. The findings further imply that SDM research benefits from questionnaires combining self-report methods and experimental study designs. Further cross-validation studies using various types of written and illustrated scenarios are encouraged.

Subjective Rationalities of Nonadherence to Treatment and Vaccination in Healthcare Decision-Making.

Objective: In this short report contributing to the literature on treatment and vaccination adherence, nonadherence was examined from the perspective of decision-making (DM) practice in healthcare. The objective of this study was to survey the rationalities given for treatment nonadherence and their association with DM practice. Methods: The Ottawa decision Support Framework was used as a theoretical background for the study. Multiple choice and open-text responses indicating nonadherence were drawn from vignette survey data. The results have been analyzed and reported as descriptive statistics and findings of data-driven content analysis. The number of observatory units was 1032 in the within-subject study design. Results: DM practice was predominantly associated with nonadherence to vaccination, whereas nonadherence to treatment was consistently associated with attitudinal reasons independent of DM practice. Nonadherence to vaccination was most often rationalized by prior negative experiences in simple DM scenarios. After other DM practices, nonadherence was rationalized by uncertainty and criticism about the benefits of the recommended vaccine. Mistrust toward healthcare providers stood out, first in treatment nonadherence generally and, second, in vaccination nonadherence after simple DM where the final decision was left to the patient. Conclusion: In medical DM, adherence to treatment and vaccination may be achieved through a recognition of patients' previous healthcare encounters and potential trust-related concerns, which could pose a risk for nonadherence. To be able to observe these risks, patient engagement and mutual trust should be priorities in decision support in healthcare.

Research on treatment and vaccination adherence aim at increasing knowledge about improving adherence and treatment outcomes. This study examined explanations given for not adhering to treatment and an association between the explanations and medical decision-making practices. Decision-making practices are known to impact patient­physician interaction and the patients' motivation to have an active role at the appointment. In a shared decision-making (SDM) practice, patients' participation is encouraged. SDM is built on both medical expertise of the practitioner and individual views, values and preferences of the patient. As opposed to SDM, authoritarian decision-making refers to a practice in which decisions are made solely by the physician. In guided decision-making, the physician shares information with the patient but makes the final decision. In simple decision-making, the final decision is left to the patient after consultation. This empirical study used illustrated vignette survey data from Finland. Out of the 1935 respondents, 64% were female with an average age of 68. In the study design, nonadherence was presumed to depend on a decision-making practice presented. Primary findings showed that nonadherence to treatment is most correlated with attitudinal predetermination of the patient and mistrust toward healthcare providers. Nonadherence to vaccination had a stronger association with decision-making practices. After simple decision-making, declining vaccination was most often explained by prior negative experiences and mistrust toward healthcare providers. After other decision-making practices, explanations for declining included uncertainty and criticism about the benefits of the recommended vaccine. This study underscores the pivotal role of trust in the patient-physician interaction.

Neurologists' Experiences and Attitudes Towards Teleneurology - Has Covid-19 Pandemic Made a Difference?

Teleneurology is an adaption of telemedicine used in neurological practices. Due to the widespread availability of the Internet and the development of information and communication technology (ICT), the use of teleneurology has increased in healthcare systems. This study aimed to determine how the Covid-19 pandemic has affected neurologists' attitudes towards teleneurology as well as their experiences of remote health care before and after the pandemic. The study was conducted as a web-based questionnaire sent to all Finnish neurologists. Two identical surveys were sent via e-mail from the National Neurology Society. The first survey was conducted in spring 2021 and second in spring 2023. The results show that the pandemic moderately increased the use of teleneurology, which enhanced neurologists' technical skills. Neurologists estimated that the use of teleneurology will continue to increase in the future.

Problems Experienced by Health Care Professionals with Do not Attempt Resuscitation (DNAR) Orders - A Qualitative Study.

A 'Do Not Attempt Resuscitation' (DNAR) order is one of the most important yet difficult medical decisions. Despite the recent European guidelines, health care professionals (HCPs) in general perceive challenges in making a DNAR order. We aimed to evaluate the types of problems related to DNAR order making. A link to a web-based multiple-choice questionnaire including open-ended questions was sent by e-mail to all physicians and nurses working in the Tampere University Hospital special responsibility area covering a catchment area of 900,000 Finns. The questionnaire covered issues on DNAR order making, its meaning and documentation. Here we report the analysis of the open-ended questions, examined based on the Ottawa Decision Support Framework with expanded individual decisional needs categories. Qualitative data describing respondents' opinions (N=648) regarding problems related to DNAR order decision making were analysed using Atlas.ti 23.12 software. In total, 599 statements (phrases) dealing with inadequate advice, information, emotional support, and instrumental help were identified. Our results show that HCPs experience lack of support in DNAR decision making on multiple levels. Digital decision-making support integrated into electronic patient records (EPR) to assure timely and clearly visible DNAR orders could be beneficial.

Real-world treatment outcomes and safety of natalizumab in Finnish multiple sclerosis patients.

Objectives: The primary objective was to evaluate long-term treatment persistence and safety of natalizumab in Finnish multiple sclerosis patients. The secondary objectives were to assess patient characteristics, use of natalizumab-related safety protocol, and treatment persistence in patients with different anti-John Cunningham virus antibody statuses (John Cunningham virus status). Materials & Methods: All adult multiple sclerosis patients in the Finnish multiple sclerosis register who started natalizumab between 1/2006 and 12/2018 were included in this study and followed retrospectively until treatment discontinuation or end of follow-up (12/2019). Results: In total, 850 patients were included. Median duration of natalizumab treatment was 7.8 years in John Cunningham virus negative (n = 229) and 2.1 years in John Cunningham virus positive patients (n = 115; p < 0.001). The most common cause for treatment discontinuation was John Cunningham virus positivity. After natalizumab discontinuation, patients who had a washout duration of less than 6 weeks had fewer relapses during the first 6 months (p = 0.012) and 12 months (p = 0.005) compared with patients who had a washout duration of over 6 weeks. During the median follow-up of 3.6 years, 76% of patients remained stable or improved on their Expanded Disability Status Scale. Conclusions: Treatment persistence was very high among John Cunningham virus negative patients. The study supports long-term effectiveness of natalizumab and a washout duration of less than 6 weeks after discontinuation.

Information Provision and Quality. A Pilot Study on Shared Decision-Making in Multiple Sclerosis.

The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.

Lack of Human Resources Leads to Breaches in Information Management Processes.

Effective information management promotes safe patient care. Lack of human resources can cause failures when managing patient information. The aim of this study was to analyse the nature of reported patient safety incidents and their location in Choo's information management process model phases when the contributing factor of the incidents was related to human resources and the consequence of the incident was related to harm to the organization's corporate image. Data consisted of the information management related patient safety incident reports (n = 475) from 49 health and social care organizations from 2007-2016 in Finland. Deductive analysis and descriptive statistics were used to analyse the data. The results of the study indicated that the shortage of human resources contributed to incomplete documentation, insufficient information sharing between professionals and documenting of information in the wrong place. The majority of the incidents occurred during the information organizing and storage and information distribution phases of the information management process model. Despite the use of electronic health records and electronic patient data, a lack of human resources can lead to breaches in information management processes and harm an organization's corporate image in health and social care contexts.

Finnish multiple sclerosis patients treated with cladribine tablets: a nationwide registry study.

BACKGROUND: Cladribine tablets for adult patients with highly active relapsing multiple sclerosis (MS) have been available in Finland since 2018. Real-world data from different genetic and geographical backgrounds are needed to complement data from clinical trials. METHODS: We investigated the use of cladribine tablets in Finland in a non-interventional cohort study, based on real-world data from the nationwide Finnish MS registry. All eligible patients who had initiated treatment with cladribine tablets in 2018-2020 were included. Descriptive analyses for outcomes were conducted using summary statistics. Time-dependent endpoints were analyzed using cumulated events analysis based on 1-Kaplan-Meier estimates and curves. Subgroups were analyzed separately according to the number of previous disease-modifying therapies (DMTs) and the most common last preceding therapies. RESULTS: Data of 179 patients were analyzed. Median follow-up time was 19.0 months (interquartile range [IQR] 12.0-26.2). Of the 134 patients who were followed for at least 12 months, 112 patients (83.6%) remained relapse-free during follow-up. Mean annualized relapse rate (ARR) was 1.0 (standard deviation [SD] 0.89) at baseline, and 0.1 (SD 0.30) at follow-up. Patients with two or more previous DMTs had shorter time to first relapse (median 2.5 months, IQR 0.6-9.3) when compared to patients with 0-1 previous DMTs (median 11.4 months, IQR 8.7-13.1) (p=0.013). After excluding patients switching from fingolimod (n=33), a statistically significant difference in time to first relapse was no longer observed between the two groups (p=0.252). Adverse events (AEs) were reported in 30 patients (16.8%). The most frequent AE was headache (n=14, 7.8%). One patient (0.6%) died of cardiac arrest. Discontinuation of cladribine tablets was reported in nine patients (5.0%). CONCLUSION: The mean ARR observed in this cohort was similar to what has been reported in clinical trials. Approximately half of the patients had used two or more previous DMTs before cladribine tablets. These patients had a shorter time to first relapse when compared to patients with 0-1 previous DMTs, mostly driven by early relapses in patients switching from fingolimod.

Patient-generated data in epilepsy care decisions: a scoping review protocol.

OBJECTIVE: This scoping review will explore the meaning and content of patient-generated data in epilepsy care decisions. INTRODUCTION: Clinical decisions about management of long-term conditions such as epilepsy are based on multiple factors, including efficacy and safety of interventions, experiences of professionals as well as patient preferences and values. Patient-generated data integrates patient values and preferences into clinical decision-making. However, more information is needed about the meaning and content of patient-generated data when making clinical decisions in epilepsy care. INCLUSION CRITERIA: This scoping review will consider studies focusing on patient-generated data and clinical decision-making in epilepsy management. Studies will be included if they concern adult patients with epilepsy, their family members/guardians, or health professionals who treat patients with epilepsy in any health care facility or eHealth services. All studies will be included regardless of methodology. Text and opinion papers will also be considered. Study protocols will be excluded. METHODS: The databases to be searched include MEDLINE, CINAHL, Scopus, PsycINFO, and Cochrane Central Register of Controlled Trials. Sources of unpublished studies and gray literature will include websites of relevant epilepsy organizations and DART-Europe E-theses Portal. The data will be extracted by two independent reviewers using a tool created for the study purpose. Along with a narrative summary, the results will be presented in tabular or graphical format in a manner that aligns with the review objective and questions. There will be no time limit on the search. Studies published in English, Finnish, Swedish, and German will be included.

Smouldering multiple sclerosis: the 'real MS'.

Using a philosophical approach or deductive reasoning, we challenge the dominant clinico-radiological worldview that defines multiple sclerosis (MS) as a focal inflammatory disease of the central nervous system (CNS). We provide a range of evidence to argue that the 'real MS' is in fact driven primarily by a smouldering pathological disease process. In natural history studies and clinical trials, relapses and focal activity revealed by magnetic resonance imaging (MRI) in MS patients on placebo or on disease-modifying therapies (DMTs) were found to be poor predictors of long-term disease evolution and were dissociated from disability outcomes. In addition, the progressive accumulation of disability in MS can occur independently of relapse activity from early in the disease course. This scenario is underpinned by a more diffuse smouldering pathological process that may affect the entire CNS. Many putative pathological drivers of smouldering MS can be potentially modified by specific therapeutic strategies, an approach that may have major implications for the management of MS patients. We hypothesise that therapeutically targeting a state of 'no evident inflammatory disease activity' (NEIDA) cannot sufficiently prevent disability accumulation in MS, meaning that treatment should also focus on other brain and spinal cord pathological processes contributing to the slow loss of neurological function. This should also be complemented with a holistic approach to the management of other systemic disease processes that have been shown to worsen MS outcomes.

Healthcare Professionals' Perceptions and Opinions on "Do not Attempt Resuscitation" (DNAR) Order and Documentation.

Insights on end-of-life care decisions, such as do not attempt resuscitation (DNAR), vary between institutions and individual health care professionals. At the era of electronic patient records (EPR), the information of DNAR order may still be recorded in multiple locations making it difficult to find and interpret. A link to a structured web-based questionnaire was sent to all physicians and nurses working in Tampere University Hospital special responsibility area covering a catchment area of 900 000 Finns. Perceptions on DNAR order and documentation was surveyed. In total 934 subjects responded, of which 727 (77%) were nurses and 219 (23%) physicians covering all specialties. We found substantial variation in DNAR order interpretation and documentation among all health care professionals possibly causing information breakdown and compromised end-of-life care.

Safety of alemtuzumab in a nationwide cohort of Finnish multiple sclerosis patients.

BACKGROUND: Alemtuzumab is an effective disease-modifying therapy (DMT) for highly active multiple sclerosis (MS). However, safety concerns limit its use in clinical practice. OBJECTIVES: To evaluate the safety of alemtuzumab in a nationwide cohort of Finnish MS patients. METHODS: In this retrospective case series study, we analyzed the data of all but two MS patients who had received alemtuzumab in Finland until 2019. Data were systematically collected from patient files. RESULTS: Altogether 121 patients were identified, most of whom had received previous DMTs (82.6%). Median follow-up time after treatment initiation was 30.3 months and exceeded 24 months in 78 patients. Infusion-associated reactions (IARs) were observed in 84.3%, 57.3%, and 57.1% of patients during alemtuzumab courses 1-3, respectively. Serious adverse events (SAEs) were observed in 32.2% of patients, serious IARs in 12.4% of patients, and SAEs other than IARs in 23.1% of patients. Autoimmune adverse events were observed in 30.6% of patients. One patient died of hemophagocytic lymphohistiocytosis, and one patient died of pneumonia. A previously unreported case of thrombotic thrombocytopenic purpura was documented. CONCLUSIONS: SAEs were more frequent in the present cohort than in previous studies. Even though alemtuzumab is a highly effective therapy for MS, vigorous monitoring with a long enough follow-up time is advised.

Health Professionals' Perceptions and Reactions to ICT-Related Patient Safety Incidents.

Patient incident reporting is an important way to promote safer health care. The barriers for reporting can be organizational (leadership, culture, lack of feedback, etc.) or individual (time pressure, perceived competence, attitude, etc.). In this study, we examined what kinds of ICT-related incidents health professionals observe in Finland, how they react to them and the reasons for non-reporting. Our data was collected using a nationwide survey during the Spring of 2020. The theory of planned behaviour by Ajzen served as our framework for explaining non-reporting behaviour. While we found that attitudes, subjective norms and perceived behavioural control all explain non-reporting, our factor model based on our confirmatory factor analysis did not directly match Ajzen's theory.

The Effect of Chronic Diseases on the Use of Health Technology and Digital Services in the Elderly Population in Finland.

Digital services are growing in the health-care field. The population in Europe is aging, and digital services are on the rise. There are also plenty of new health-care devices on the market. The aim of this study was to survey how elderly people cope with digital services or devices, especially if they are chronically ill. This quantitative study focuses on the impact of chronic diseases on the use of health technology and digital services. The target group of this study is Finnish people aged 65 or over. Based on the results, a chronic disease or disability is not an obstacle to the use of digital services or health-care technology in the Finnish elderly population. The main obstacles to the use of health technology or digital services are complexity, obscure text, or small font size. According to this study, elderly people seem to trust the device or application. Devices, applications, and online services should be designed so that elderly people's diseases or ability to function are considered.

Lipid Profile Alterations during Fingolimod Treatment in Multiple Sclerosis Patients.

Fingolimod reduces inflammatory activity in multiple sclerosis (MS) by acting as a functional antagonist of sphingosine 1-phosphate (S1P) receptors. It has been suggested that S1P might also contribute to the antiatherogenic effect of high-density lipoprotein (HDL). We conducted a retrospective observational study using data of 72 MS patients from two Finnish hospital districts to find out whether lipid profiles change during treatment with fingolimod. A mixed-effects model with patient as a random effect was used to analyze lipid profile alterations. We found a statistically significant elevation in both total cholesterol (0.12 mmol/L per year) and HDL (0.04 mmol/L per year) during a median follow-up of 12 months, while low-density lipoprotein (LDL) and triglycerides remained unchanged. Since the mean elevation observed in both lipid values seems to be modest, we suggest that routine lipid profile monitoring is unnecessary during fingolimod treatment in MS patients without pre-existing cardiovascular comorbidities. Graphical abstract.

Patient Awareness of the Severity of Their Information and Medication Management-Related Adverse Events.

Adverse events (AEs) in healthcare are commonly reported internationally. However, the structure of event reporting varies based on the healthcare service system, legislation, and the safety culture among service providers. Based on several studies, medication management-related errors have a long history of being reported. However, there is evidence that information management-related errors increase workload, costs, and patient suffering. This study focuses on AEs reported in the categories of medication and information management in a national reporting system. Our aim was to determine whether patients were informed about these errors and whether there were any relationships between the severity of these errors and the disclosure to patients. Based on the results, almost all errors in both categories without any harm to patients were disclosed to patients. Patients were not informed about 40% of information management-related AEs that caused severe harm.

Medication adherence/persistence among patients with active multiple sclerosis in Finland.

OBJECTIVES: To explore adherence, persistence, and treatment patterns in patients with multiple sclerosis (MS) in Finland treated with disease-modifying therapies (DMTs) for active MS in 2005-2018. MATERIALS AND METHODS: The study cohort was identified using the Drug Prescription Register of Social Insurance Institute, Finland. All patients had at least one prescription of glatiramer acetate (GA), beta-interferons, teriflunomide, or delayed-release dimethyl fumarate (DMF). Adherence was calculated using proportion of days covered (PDC) (cutoff ≥0.8). Time to non-persistence was calculated by the number of days on index DMT treatment before the first treatment gap (≥90 days) or switch and analyzed with time-to-event methodology. RESULTS: The cohort included 7474 MS patients (72.2% female; mean age 38.9 years). Treatment switches were steady over 2005-2012, peaked in 2015. PDC means (standard deviations) were GA, 0.87 (0.17); beta-interferons, 0.88 (0.15); DMF, 0.89 (0.14); teriflunomide, 0.93 (0.10). Adherence frequencies were GA, 78.4%; beta-interferons, 81.3%; DMF, 86.9%; teriflunomide, 91.7%. Logistic regression showed that age group, DMT and the starting year, sex, and hospital district independently affected adherence. Patients receiving teriflunomide and DMF, males, and older patients were more likely to persist on treatment. There was no difference in persistence between patients prescribed teriflunomide and DMF, or between GA and beta-interferons. CONCLUSIONS: Oral DMTs had greater adherence and persistence than injectable DMTs.

The rate of neuropsychological assessments in multiple sclerosis has increased-A retrospective study in a Finnish Central Hospital.

OBJECTIVE: To investigate possible changes in the rate of conducted neuropsychological assessments and rehabilitation process for patients with multiple sclerosis (pwMS) during the last two decades. The change in the rate of vocational rehabilitation process was also evaluated. BACKGROUND: Cognitive deficits are frequent among pwMS and negatively affect patients' working ability and quality of life. Preliminary evidence suggests that neuropsychological rehabilitation positively affects cognitive symptoms. Vocational approaches are widely recommended for pwMS. METHODS: A retrospective survey of all multiple sclerosis (MS) patients diagnosed and treated at the Department of Neurology in Kanta-Häme Central Hospital over the period 1988-2013 was conducted using hospital records. The rate of neuropsychological assessment and rehabilitation processes as well as vocational rehabilitation processes were evaluated. RESULTS: A total of 417 pwMS were identified. A neuropsychological assessment was performed for 104 (24.9%) of these patients, of whom 21 (20.2%) were evaluated between 1988 and 1999 and 83 (79.8%) between 2000 and 2013. Of the 417 patients, eight (1.9%) received neuropsychological rehabilitation, each of these after the year 2000. Only 25 (6.0%) of the 417 pwMS received vocational rehabilitation. Fourteen (56.0%) of the 25 patients received vocational rehabilitation between 1988 and 1999 and 11 (44.0%) between 2000 and 2013. CONCLUSIONS: Neuropsychological assessment has been a rarity in MS in Finland, but a marked increase in frequency has occurred since the year 2000. Although understanding of MS-related cognitive impairment and its impact on working ability has increased, the rate of neuropsychological and vocational rehabilitation has remained low.

Risk factors for reactivation of clinical disease activity in multiple sclerosis after natalizumab cessation.

BACKGROUND: Natalizumab (NTZ) is widely used for highly active relapsing-remitting multiple sclerosis (MS). Inflammatory disease activity often returns after NTZ treatment discontinuation. We aimed to identify predictive factors for such reactivation in a real-life setting. METHODS: We conducted a retrospective survey in four Finnish hospitals. A computer-based search was used to identify all patients who had received NTZ for multiple sclerosis. Patients were included if they had received at least six NTZ infusions, had discontinued treatment for at least three months, and follow-up data was available for at least 12 months after discontinuation. Altogether 89 patients were analyzed with Cox regression model to identify risk factors for reactivation, defined as having a corticosteroid-treated relapse. RESULTS: At 6 and 12 months after discontinuation of NTZ, a relapse was documented in 27.0% and 35.6% of patients, whereas corticosteroid-treated relapses were documented in 20.2% and 30.3% of patients, respectively. A higher number of relapses during the year prior to the introduction of NTZ was associated with a significantly higher risk for reactivation at 6 months (Hazard Ratio [HR] 1.65, p < 0.001) and at 12 months (HR 1.53, p < 0.001). Expanded Disability Status Scale (EDSS) of 5.5 or higher before NTZ initiation was associated with a higher reactivation risk at 6 months (HR 3.70, p = 0.020). Subsequent disease-modifying drugs (DMDs) failed to prevent reactivation of MS in this cohort. However, when subsequent DMDs were used, a washout time longer than 3 months was associated with a higher reactivation risk at 6 months regardless of whether patients were switched to first-line (HR 7.69, p = 0.019) or second-line therapies (HR 3.94, p = 0.035). Gender, age, time since diagnosis, and the number of NTZ infusions were not associated with an increased risk for reactivation. CONCLUSION: High disease activity and a high level of disability prior to NTZ treatment seem to predict disease reactivation after treatment cessation. When switching to subsequent DMDs, the washout time should not exceed 3 months. However, subsequent DMDs failed to prevent the reactivation of MS in this cohort.