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1.
Front Psychol ; 15: 1345117, 2024.
Article de Anglais | MEDLINE | ID: mdl-39100568

RÉSUMÉ

Background: People with multimorbidity are increasingly engaged, enabled, and empowered to take responsibility for managing their health status. The purpose of the study was to systematically review and appraise the psychometric properties of tools measuring patient engagement in adults with multimorbidity and their applicability for use within engagement programs. Methods: PubMed, Scopus, Web of Science, and PsycInfo were searched from inception to 1 July 2021. Gray literature was searched using EBSCO host-database "Open dissertation". The reference lists of studies meeting the inclusion criteria were searched to identify additional eligible studies. The screening of the search results and the data extraction were performed independently by two reviewers. The methodological quality of the included studies was evaluated with the COSMIN checklist. Relevant data from all included articles were extracted and summarized in evidence synthesis tables. Results: Twenty articles on eight tools were included. We included tools that measure all four dimensions of patient engagement (i.e., engagement, empowerment, activation, and participation). Their psychometric properties were analyzed separately. Most tools were developed in the last 10 years in Europe or the USA. The comparison of the estimated psychometric properties of the retrieved tools highlighted a significant lack of reliable patient engagement measures for people with multimorbidity. Available measures capture a diversity of constructs and have very limited evidence of psychometric properties that are vital for patient-reported measures, such as invariance, reliability, and responsiveness. Conclusion: This review clarifies how patient engagement, as operationalized in measures purporting to capture this concept, overlaps with, and differs from other related constructs in adults with multimorbidity. The methodological quality of psychometric tools measuring patient engagement in adults with multimorbidity could be improved. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=259968, identifier CRD42021259968.

2.
Stud Health Technol Inform ; 316: 1477-1481, 2024 Aug 22.
Article de Anglais | MEDLINE | ID: mdl-39176483

RÉSUMÉ

Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.


Sujet(s)
Dossiers médicaux électroniques , Estonie , Humains , Participation des patients , Données de santé générées par les patients , Personnel de santé , Intégration de systèmes
3.
Global Health ; 20(1): 64, 2024 Aug 20.
Article de Anglais | MEDLINE | ID: mdl-39164710

RÉSUMÉ

Africa's dual burden of rising incidence of infectious diseases and increasing prevalence of non-communicable diseases (NCDs), such as cardiovascular diseases and diabetes, demands innovative approaches to disease surveillance, response, and cross-border health management in response to growing economic integration and global connectivity. In this context, we propose a discursive framework for the development and implementation of a multi-disease digital health passport (MDDHP) in Africa. The MDDHP would serve as a secure platform for storing and sharing individual health data, offering a comprehensive solution to track and respond to infectious diseases, facilitate the management of NCDs, and improve healthcare access across borders. Empowering individuals to proactively manage their health and improve overall outcomes is a key aspect of the MDDHP. In the paper, we examine the key elements necessary to effectively implement MDDHP, focusing on minimizing risks, maintaining efficacy, and driving its adoption while also taking into consideration the unique contexts of the continent. The paper is intended to provide an understanding of the key principles involved and contribute to the discussion on the development and successful implementation of MDDHP in Africa.


Sujet(s)
, Maladies non transmissibles , Humains , Afrique , /organisation et administration , Maladies non transmissibles/prévention et contrôle , Maladies non transmissibles/épidémiologie
4.
Prim Care Diabetes ; 2024 Aug 24.
Article de Anglais | MEDLINE | ID: mdl-39183095

RÉSUMÉ

AIM: To examine the effect of training provided to type 2 diabetes patients according to the theory of planned behavior on self-efficacy and patient empowerment. METHODS: This study, pre-test-post-test active control group single-blind experimental design, was conducted in the internal medicine outpatient clinic of a state hospital between April and October 2023. Participants were randomly assigned to the intervention group (IG; n = 45) and control group (CG; n = 47). The intervention group received a theory-based training program consisting of 5 sessions lasting approximately 40 min. each. Diabetes Management Self-Efficacy Scale, Patient Empowerment Scale and the patient's laboratory results were used for data collection. RESULTS: In the study, while the posttest self-efficacy and patient empowerment scores of the intervention group increased compared to the pretest, there was an decrease in HbA1C level. On the post-test measurements between groups, self-efficacy and patient empowerment scores were higher and effect sizes were higher in the intervention group, while no difference was found in HbA1C values. CONCLUSION: The training program provided according to the theory of planned behavior in diabetes patients provides positive contributions to disease management.

5.
J Parkinsons Dis ; 14(s1): S173-S180, 2024.
Article de Anglais | MEDLINE | ID: mdl-39121135

RÉSUMÉ

Parkinson's disease (PD) poses a number of challenges for individuals, affecting them physically, mentally, emotionally, and socially. The complex nature of PD necessitates empowering patients to address their unique needs and challenges, fostering improved health outcomes and a better quality of life. Patient empowerment is a multifaceted concept crucial to enhancing healthcare outcomes, particularly in chronic conditions such as PD. However, defining patient empowerment presents challenges due to its varied interpretations across disciplines and individuals. Essential components include access to information, development of self-care skills, and fostering a supportive environment. Strategies for patient empowerment encompass health literacy, education, and shared decision-making within a trusted healthcare provider-patient relationship. In PD, patient empowerment is crucial due to the disease's phenotypic variability and subjective impact on quality of life. Patients must navigate individualized treatment plans and advocate for their needs, given the absence of objective markers of disease progression. Empowerment facilitates shared decision-making and enables patients to communicate their unique experiences and management goals effectively. This paper provides a comprehensive overview of the dimensions and strategies associated with patient empowerment, its definition and the facilitators that are necessary, emphasizing its critical importance and relevance in Parkinson's management. At the end of this review is a personal perspective as one of the authors is a person with lived experience.


Sujet(s)
Autonomisation , Maladie de Parkinson , Humains , Maladie de Parkinson/psychologie , Participation des patients , Qualité de vie , Autosoins , Prise de décision partagée , Compétence informationnelle en santé
6.
Stud Health Technol Inform ; 316: 1018-1022, 2024 Aug 22.
Article de Anglais | MEDLINE | ID: mdl-39176963

RÉSUMÉ

Health literacy empowers people to access, understand and apply health information to effectively manage their own health and to be an active participant in healthcare decisions. In this paper we propose a conceptual model for cognitive factors affecting health literacy and related socioeconomic aspects. Then we develop the HEALIE Knowledge Graph to represent the model, drawing from various medical ontologies, resources, and insights from domain experts. Finally, we combine the Knowledge Graph with a Large Language Model to generate personalised medical content and showcase the results through an example.


Sujet(s)
Compétence informationnelle en santé , Humains , Participation des patients , Médecine de précision , Traitement du langage naturel , Autonomisation
7.
Front Health Serv ; 4: 1399621, 2024.
Article de Anglais | MEDLINE | ID: mdl-39165627

RÉSUMÉ

In recent years, rapidly changing disease profile patterns, shortage & uneven utilization of healthcare professionals contributed massive burden on the Indian healthcare system, which resulted in varying, fragmented, inconsistent healthcare delivery to the patients and poor patient management. Patients often face and experience many challenges like lack of accessibility, poor patient-healthcare provider relationships, and inadequate quality of care, resulting in unnecessary economic burden in managing their health conditions. Thus Indian healthcare reform is essential in enhancing its capacity to fulfill patients' health needs that can be addressed by focusing on key sustainable strategies and initiatives meant for enhancing coordination of care, expanding services accessibility, redeveloping healthcare infrastructure, implementing workforce innovation and strong governance with the incorporation of core principles such as patient-centeredness, integrated care and collaborative care approaches. The clinical and ambulatory pharmacy practice are fragment of the healthcare delivery which delivers pharmaceutical care and fulfils the needs of patients across healthcare settings. This paper focuses on the present & future perspectives of ambulatory pharmacy practice in India and the factors to be considered for implementing it in patient care.

8.
J Anesth Analg Crit Care ; 4(1): 42, 2024 Jul 08.
Article de Anglais | MEDLINE | ID: mdl-38978057

RÉSUMÉ

BACKGROUND: Value-based healthcare (VBHC) is an approach that focuses on delivering the highest possible value for patients while driving cost efficiency in health services. It emphasizes improving patient outcomes and experiences while optimizing the use of resources, shifting the healthcare system's focus from the volume of services to the value delivered. Our study assessed the effectiveness of implementing a VBHC-principled, tailored preoperative evaluation in enhancing patient care and outcomes, as well as reducing healthcare costs. METHODS: We employed a quality improvement, before-and-after approach to assessing the effects of implementing VBHC strategies on the restructuring of the preoperative evaluation clinics at Humanitas Research Hospital. The intervention introduced a VBHC-tailored risk matrix during the postintervention phase (year 2021), and the results were compared with those of the preintervention phase (2019). The primary study outcome was the difference in the number of preoperative tests and visits at baseline and after the VBHC approach. Secondary outcomes were patient outcomes and costs. RESULTS: A total of 9722 patients were included: 5242 during 2019 (baseline) and 4,480 during 2021 (VBHC approach). The median age of the population was 63 (IQR 51-72), 23% of patients were classified as ASA 3 and 4, and 26.8% (2,955 cases) were day surgery cases. We found a considerable decrease in the number of preoperative tests ordered for each patient [6.2 (2.5) vs 5.3 (2.6) tests, p < 0.001]. The number of preoperative chest X-ray, electrocardiogram, and cardiac exams decreased significantly with VBHC. The length of the preoperative evaluation was significantly shorter with VBHC [373 (136) vs 290 (157) min, p < 0.001]. Cost analysis demonstrated a significant reduction in costs, while there was no difference in clinical outcomes. CONCLUSIONS: We demonstrated the feasibility, safety, and cost-effectiveness of a tailored approach for preoperative evaluation. The implementation of VBHC enhanced value, as evidenced by decreased patient time in preoperative evaluation and by a reduction in unnecessary preoperative tests.

9.
Pharmacy (Basel) ; 12(4)2024 Jul 12.
Article de Anglais | MEDLINE | ID: mdl-39051391

RÉSUMÉ

United States healthcare outcomes, including avoidable mortality rates, are among the worst of high-income countries despite the highest healthcare spending per capita. While community pharmacies contribute to chronic disease management and preventive medicine, they also offer consumer products that increase mortality risks and the prevalence of cardiovascular diseases, diabetes, cancer, and depression. To resolve these contradictions, our perspective article describes opportunities for major pharmacy chains (e.g., CVS Pharmacy and Walgreens) to introduce digital health aisles dedicated to prescription and over-the-counter digital therapeutics (DTx), together with mobile apps and wearables that support disease self-management, wellness, and well-being. We provide an evidence-based rationale for digital health aisles to replace spaces devoted to sugar-sweetened beverages and other unhealthy commodities (alcohol, tobacco) that may increase risks for premature death. We discuss how digital health aisles can serve as marketing and patient education resources, informing customers about commercially available DTx and other technologies that support healthy lifestyles. Since pharmacy practice requires symbiotic balancing between profit margins and patient-centered, value-based care, replacing health-harming products with health-promoting technologies could positively impact prevention of chronic diseases, as well as the physical and mental health of patients and caregivers who visit neighborhood pharmacies in order to pick up medicines.

10.
J Hosp Infect ; 151: 109-115, 2024 Jul 18.
Article de Anglais | MEDLINE | ID: mdl-39032572

RÉSUMÉ

BACKGROUND: Half of hospitalized patients receive antibiotics, but they are rarely involved in shared decision making (SDM) on antibiotic therapy. We sought to understand the association between patient empowerment and their involvement in SDM on antibiotic therapy. METHODS: From March 2021 to April 2022, we conducted a cross-sectional survey on hospitalized patients receiving antibiotic therapy for ≥1 day in a 1600-bed adult general hospital in Singapore. The questionnaire included seven items (five-point Likert scale) on involvement in SDM from SDM-Q-9 and 10 items (four-point Likert scale) on patient empowerment from HCEQ-10. A multi-variable logistic regression model was constructed to assess for independent associations between the three constructs of patient empowerment and involvement in SDM on antibiotic therapy. RESULTS: Of 636 hospitalized patients, mean age was 57.6 (SD 15.5) years, 61% were males and 37% had tertiary-level education. The majority (90%) were aware that they were on antibiotic therapy, but only 11% of them knew the name of the antibiotic given. After adjusting for age, gender, ethnicity, educational level, and duration of hospital stay, patients with a high-level of involvement in decisions (adjusted odds ratio (AOR) 3.63, 95% confidence interval (CI) 2.19-6.01), interactions with healthcare professionals (AOR 1.77, 95% CI 1.03-3.02), and degree of control over their hospital care (AOR 1.90, 95% CI 1.15-3.12) were more likely to have a high-level of involvement in SDM on antibiotic therapy. CONCLUSIONS: Empowering hospitalized patients with involvement in decisions, interactions with healthcare professionals, and control of their hospital care can increase their participation in SDM on antibiotic therapy in hospitals.

11.
J Med Internet Res ; 26: e55757, 2024 Jul 22.
Article de Anglais | MEDLINE | ID: mdl-39037772

RÉSUMÉ

BACKGROUND: The proliferation of digital technology has the potential to transform diabetes management. One of the critical aspects of modern diabetes management remains the achievement of glycemic targets to avoid acute and long-term complications. OBJECTIVE: This study aims to describe the landscape of evidence pertaining to the relative effectiveness or efficacy and safety of various digital interventions for the self-management of type 2 diabetes mellitus (T2DM), with a primary focus on reducing glycated hemoglobin A1c (HbA1c) levels. METHODS: A systematic literature review (SLR) was conducted by searching Embase, MEDLINE, and CENTRAL on April 5, 2022. Study selection, data extraction, and quality assessment were performed by 2 independent reviewers. Eligibility criteria for the SLR included randomized controlled trials (RCTs) and comparative observational studies evaluating interventions containing both human (eg, coaching) and digital components (eg, glucose meter) in adult patients with T2DM. The primary meta-analysis was restricted to studies that reported laboratory-measured HbA1c. In secondary analyses, meta-regression was performed with the intensity of coaching in the digital intervention as a categorical covariate. RESULTS: In total, 28 studies were included in this analysis. Most studies (23/28, 82%) used the reduction of HbA1c levels as the primary end point, either directly or as a part of a multicomponent outcome. In total, 21 studies reported statistically significant results with this primary end point. When stratified into 3 intervention categories by the intensity of the intervention supporting the digital health technology (analyzing all 28 studies), the success rate appeared to be proportional to the coaching intensity (ie, higher-intensity studies reported higher success rates). When the analysis was restricted to RCTs using the comparative improvement of HbA1c levels, the effectiveness of the interventions was less clear. Only half (12/23, 52%) of the included RCTs reported statistically significant results. The meta-analyses were broadly aligned with the results of the SLR. The primary analysis estimated a greater reduction in HbA1c associated with digital interventions compared with usual care (-0.31%, 95% CI -0.45% to -0.16%; P<.001). Meta-regression estimated reductions of -0.45% (95% CI -0.81% to -0.09%; P=.02), -0.29% (95% CI -0.48% to -0.11%; P=.003), and -0.28% (95% CI -0.65% to 0.09%; P=.20) associated with high-, medium-, and low-intensity interventions, respectively. CONCLUSIONS: These findings suggest that reducing HbA1c levels in individuals with T2DM with the help of digital interventions is feasible, effective, and acceptable. One common feature of effective digital health interventions was the availability of timely and responsive personalized coaching by a dedicated health care professional.


Sujet(s)
Diabète de type 2 , Hémoglobine glyquée , Gestion de soi , Diabète de type 2/thérapie , Diabète de type 2/sang , Humains , Gestion de soi/méthodes , Hémoglobine glyquée/analyse , Essais contrôlés randomisés comme sujet , Autosurveillance glycémique/méthodes
12.
Health Expect ; 27(4): e14133, 2024 Aug.
Article de Anglais | MEDLINE | ID: mdl-38988044

RÉSUMÉ

BACKGROUND: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient-led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi-CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi-CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi-CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi-CI programme development process and its impact on professional CI rehabilitation and research. METHODS: Programme development was described using a 3-layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video-recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. RESULTS: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI-rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. CONCLUSION: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. PATIENT OR PUBLIC CONTRIBUTION: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write-up of the results, and co-authored this paper.


Sujet(s)
Implants cochléaires , Humains , Musique , Mise au point de programmes , Participation des patients , Perte d'audition/rééducation et réadaptation , Musicothérapie , Évaluation de programme
13.
Immunotherapy ; : 1-7, 2024 Jul 29.
Article de Anglais | MEDLINE | ID: mdl-39073437

RÉSUMÉ

Aim: To assess a patient empowerment program (PEP) for children/adolescents with primary immunodeficiency (PID) on IgG replacement therapy regarding quality of life (QoL) in patients and proxy. Patients & methods: Health-related QoL was assessed using KIDSCREEN-27 and DISABKIDS-37 before and 6 months after PID-PEP kids in 19 children/adolescents and their parents. Results: The following three dimensions of the KIDSCREEN-27 significantly increased in children/adolescents after PID-PEP kids as compared with baseline: Psychological Well-Being, Parents & Autonomy and School Environment. Total DISABKIDS-37 index, as well as 5 of the 6 DISABKIDS-37 dimensions, significantly increased, in other words, Independence, Emotion, Social Inclusion, Social Exclusion and Physical. Evaluation of proxy instruments showed comparable results. Conclusion: PID-PEP kids significantly improved QoL in patients with PID.


What is this study about? This study evaluated a patient empowerment program (PEP) for children and adolescents with primary immunodeficiency (PID) on immunoglobulin replacement therapy. The goal was to see if the program improved quality of life (QoL). Two commonly administered questionnaires were used to measure QoL before and 6 months after participating in the program.What were the results? Significant improvements were found in several dimensions including Psychological Well-Being, Parents & Autonomy and School Environment. Additionally, overall QoL scores and dimensions such as Independence, Emotion, Social Inclusion, Social Exclusion and Physical also improved. Assessments by the parents confirmed these findings.What do the results mean? The PID-PEP kids program significantly improved the QoL for these young patients.

14.
Saudi Med J ; 45(6): 617-625, 2024 Jun.
Article de Anglais | MEDLINE | ID: mdl-38830649

RÉSUMÉ

OBJECTIVES: To analyze the relationship between chronically ill patients' behaviors in acquiring and verifying health information from a digital environment with health literacy and patient empowerment using a structural equation modeling approach. METHODS: This study was carried out in a public hospital in Turkey between February and May 2023. The study consisted of 365 participants and used descriptive and correlation-based designs for statistical analyses. It also executed computations for descriptive statistics and correlations to carry out a path analysis to assess model fitness and to identify direct and indirect effects. RESULTS: This study identified that Web 1.0 and health information acquisition and digital verification variables statistically and significantly affected access to information, understanding information, appraisal (valuing)/evaluation, and application/use variables. The study also found that access to information variables was statistically significant on identity/identicalness, self-control, decision-making, and recognition and comprehension. The tested model fit the data well and adequately explained the direct effects of the variables. CONCLUSION: The study concluded by suggestively improving the chronically ill patients' media or digital literacy levels through special training to stimulate their internet use effectively.


Sujet(s)
Compétence informationnelle en santé , Humains , Maladie chronique , Femelle , Mâle , Adulte , Adulte d'âge moyen , Autonomisation , Turquie , Jeune adulte , Comportement de recherche d'information , Sujet âgé , Internet , Information en santé des consommateurs ,
15.
Health Expect ; 27(3): e14094, 2024 Jun.
Article de Anglais | MEDLINE | ID: mdl-38881096

RÉSUMÉ

INTRODUCTION: Patient and public involvement is vital for high-quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice-based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. METHODS: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. RESULTS: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. CONCLUSION: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. PATIENT OR PUBLIC CONTRIBUTION: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co-production of interventions and information material, and the interpretation of data.


Sujet(s)
Comités consultatifs , Médecine de famille , Recherche qualitative , Personnel de recherche , Humains , Mâle , Femelle , Participation des patients , Adulte d'âge moyen , Adulte
16.
BMC Med Inform Decis Mak ; 24(1): 185, 2024 Jun 28.
Article de Anglais | MEDLINE | ID: mdl-38943152

RÉSUMÉ

INTRODUCTION: This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. BACKGROUND: The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up. METHODS: ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients' clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the "SHARE approach' for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox. RESULTS: User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated. CONCLUSIONS: Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel.


Sujet(s)
Prise de décision partagée , Participation des patients , Mesures des résultats rapportés par les patients , Humains , Maladie chronique/thérapie , Autonomisation
17.
Clin Chem Lab Med ; 2024 Jun 25.
Article de Anglais | MEDLINE | ID: mdl-38910538

RÉSUMÉ

The introduction of the vacuum tube in 1949 revolutionized blood collection, significantly improving sample quality and patient comfort. Over the past 75 years, laboratory diagnostics have evolved drastically, from manual to automated processes, reducing required test volumes by over 1,000 times. Despite these advancements, venous blood collection presents logistical challenges, including centralized scheduling and a large volume of biological waste due to the imbalance between the needed blood volume (often very little) and the collected volume (often in excess). The COVID-19 pandemic further emphasized the need for decentralized healthcare solutions and patient empowerment. Capillary blood collection, widely used in point-of-care testing, offers a promising alternative, particularly for patients facing frequently, or difficulties with, venous sampling. The Leiden University Medical Center in the Netherlands experienced a 15 % reduction in volume of laboratory tests during and after the pandemic, attributed to patient preference for local blood collection and testing. To address these challenges, self-sampling devices are emerging, empowering patients and streamlining sample logistics. However, challenges such as cost, transportation regulations, and sample volume adequacy persists. Robust devices tailored for total lab automation and sustainable practices are crucial for widespread adoption. Despite hurdles, the integration of self-sampling into diagnostic processes is inevitable, heralding a shift towards patient-centered, proactive healthcare. Practical recommendations include robust device design, ease of use, affordability, sustainability, sufficient quality and acceptability by seamless integration into laboratory workflows. Although obstacles remain, self-sampling represents the future of laboratory diagnostics, offering convenience, cost-effectiveness, interoperability and patient empowerment.

18.
Med Health Care Philos ; 27(3): 399-405, 2024 Sep.
Article de Anglais | MEDLINE | ID: mdl-38850497

RÉSUMÉ

In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients' knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption.


Sujet(s)
Prise de décision , Autonomie personnelle , Humains , Prise de décision/éthique , Déontologie médicale , Philosophie médicale
19.
High Blood Press Cardiovasc Prev ; 31(4): 341-357, 2024 Jul.
Article de Anglais | MEDLINE | ID: mdl-38913296

RÉSUMÉ

INTRODUCTION: Widespread use of smartphone applications has opened new perspectives for home Blood Pressure monitoring based on mobile health (mHealth) technologies. Patient engagement has been dubbed 'the silver bullet of the century'. AIM: The aim was to identify the impact of engagement in patients with blood pressure using mHealth. METHODS: This scoping review was conducted in accordance with the Ark0sey and O'Malley framework. DATABASE: Pubmed, CINAHL, Scopus and PsycInfo. This review considered both qualitative and quantitative primary searches. We excluded articles belonging to grey literature, secondary literature and paediatric setting. Between September and November 2023, the review was carried out. RESULTS: A total of 569 documents were retrieved from the four databases. After the deduplication process, five articles were removed. The selection process based on titles and abstracts included 133 records. Ten studies were selected and analysed. The reviewers identified the following themes: device type and mobile applications, engagement, blood pressure control, health behaviours and hypertension knowledge. Self-management using digital technologies in the home is strongly linked to engagement, reduction and control of Blood Pressure, improved health practices and increased knowledge of hypertension. Healthcare interventions using IT platforms have had a significant impact on the health outcomes of patients diagnosed with hypertension. CONCLUSIONS: The review findings suggest the value of these technologies in improving patient engagement and, consequently, adherence to antihypertensive treatment and achieving blood pressure control rates, potentially reducing cardiovascular risk.


Sujet(s)
Pression sanguine , Connaissances, attitudes et pratiques en santé , Hypertension artérielle , Participation des patients , Télémédecine , Humains , Hypertension artérielle/physiopathologie , Hypertension artérielle/diagnostic , Hypertension artérielle/thérapie , Hypertension artérielle/traitement médicamenteux , Pression sanguine/effets des médicaments et des substances chimiques , Applications mobiles , Mâle , Femelle , Résultat thérapeutique , Adulte , Adulte d'âge moyen , Surveillance ambulatoire de la pression artérielle/instrumentation , Sujet âgé , Antihypertenseurs/usage thérapeutique
20.
Nephrol Nurs J ; 51(2): 143-152, 2024.
Article de Anglais | MEDLINE | ID: mdl-38727590

RÉSUMÉ

A large portion of new patients with end stage kidney disease initiates dialysis in the acute setting and continue with outpatient dialysis at in-center facilities. To increase home dialysis adoption, programs have successfully operationalized Urgent Start peritoneal dialysis to have patients avoid in-center dialysis and move straight to home. However, Urgent Start home hemodialysis (HHD) has not been a realistic option for providers or patients due to complex machines and long training times (greater than four weeks). The landscape of dialysis treatment is evolving, and innovative approaches are being explored to improve patient outcomes and optimize health care resources. This article delves into the concept of directly transitioning incident patients from hospital admission to HHD, bypassing traditional in-center dialysis training. This forward-thinking approach aims to empower patients, enhance their treatment experience, maximize efficiency, and streamline health care operations. A large hospital organization in the Northeast was able to successfully transition three patients from hospital "crash" starts on hemodialysis directly to HHD.


Sujet(s)
Hémodialyse à domicile , Défaillance rénale chronique , Humains , Défaillance rénale chronique/thérapie , Éducation du patient comme sujet , Mâle , Femelle , Adulte d'âge moyen , Transfert de patient
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