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1.
Crit Rev Clin Lab Sci ; 61(6): 458-472, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38523480

ABSTRACT

Natriuretic peptides (NP) play an essential role in heart failure (HF) regulation, and their measurement has improved diagnostic and prognostic accuracy. Clinical symptoms and objective measurements, such as NP levels, should be included in the HF definition to render it more reliable and consistent among observers, hospitals, and healthcare systems. BNP and NT-proBNP are reasonable surrogates for cardiac disease, and their measurement is critical to early diagnosis and risk stratification of HF patients. NPs should be measured in all patients presenting with dyspnea or other symptoms suggestive of HF to facilitate early diagnosis and risk stratification. Both BNP and NT-proBNP are currently used for guided HF management and display comparable diagnostic and prognostic accuracy. Standardized cutoffs for each NP assay are essential for data comparison. The value of NP testing is recognized at various levels, including patient empowerment and education, analytical and operational issues, clinical HF management, and cost-effectiveness.


Subject(s)
Heart Failure , Natriuretic Peptides , Humans , Heart Failure/blood , Heart Failure/diagnosis , Natriuretic Peptides/blood , Natriuretic Peptides/analysis , Natriuretic Peptide, Brain/blood , Biomarkers/blood , Peptide Fragments/blood , Prognosis
2.
Clin Chem Lab Med ; 2024 Jun 25.
Article in English | MEDLINE | ID: mdl-38910538

ABSTRACT

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.

3.
Int Urogynecol J ; 35(2): 381-389, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37979041

ABSTRACT

INTRODUCTION AND HYPOTHESIS: We sought to understand factors that are important to patients for the management of recurrent urinary tract infections (UTI) during both an acute episode and for the prevention of future episodes. METHODS: This was a qualitative study with focus groups in women with recurrent UTIs. Participants filled out information about prior recurrent UTI treatment and the Belief about Medicines Questionnaire (BMQ). Each 90-minute focus group was moderated by a nonphysician psychologist. Line-by-line coding of each transcript by three independent physicians was used to develop emergent concepts and themes using Grounded Theory methodology. RESULTS: Twenty-six women participated in six focus groups. The average age of participants was 62 years and 77% were post-menopausal. All women had already tried multiple prevention strategies for their recurrent UTIs. The average BMQ-specific scores indicated a net positive attitude toward medicines specifically prescribed for recurrent UTI prevention. Several themes emerged from the focus groups. First, patients wanted providers to acknowledge the high burden imposed by frequent interactions with the health care system for the management of recurrent UTI. Second, patients wanted earlier access to providers knowledgeable in the management of this condition. Third, patients wanted to self-manage their condition through a structured treatment plan with support from their providers. Finally, patients wanted greater emphasis on education and prevention strategies to reduce their antibiotic intake. CONCLUSIONS: Patients with recurrent UTI want more efficient workflows, a framework that promotes self-management in partnership with their providers, and a greater emphasis on prevention.


Subject(s)
Anti-Bacterial Agents , Urinary Tract Infections , Humans , Female , Middle Aged , Focus Groups , Qualitative Research , Anti-Bacterial Agents/therapeutic use , Educational Status , Urinary Tract Infections/drug therapy , Urinary Tract Infections/prevention & control
4.
Global Health ; 20(1): 64, 2024 Aug 20.
Article in English | MEDLINE | ID: mdl-39164710

ABSTRACT

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.


Subject(s)
Digital Health , Noncommunicable Diseases , Humans , Africa , Digital Health/organization & administration , Noncommunicable Diseases/prevention & control , Noncommunicable Diseases/epidemiology
5.
Health Expect ; 27(3): e14094, 2024 06.
Article in English | MEDLINE | ID: mdl-38881096

ABSTRACT

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.


Subject(s)
Advisory Committees , Family Practice , Qualitative Research , Research Personnel , Humans , Male , Female , Patient Participation , Middle Aged , Adult
6.
Health Expect ; 27(4): e14133, 2024 08.
Article in English | MEDLINE | ID: mdl-38988044

ABSTRACT

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.


Subject(s)
Cochlear Implants , Humans , Music , Program Development , Patient Participation , Hearing Loss/rehabilitation , Music Therapy , Program Evaluation
7.
BMC Health Serv Res ; 24(1): 1213, 2024 Oct 10.
Article in English | MEDLINE | ID: mdl-39390434

ABSTRACT

BACKGROUND: The use of digital tools such as electronic patient portals in different health care disciplines and settings has been increasing, but the rate of implementation in clinical practice still lags behind expectations. While studies have linked the use of electronic patient portals to positive health outcomes for patients, studies addressing the viewpoints of healthcare providers are rare. METHODS: We performed an online survey of attitudes of healthcare providers towards an electronic patient portal for mental health hospitals. The portal was developed by five communal providers of mental health care in different regions in Germany. The survey was carried out during the early phase of implementation of the portal. RESULTS: Twenty project leaders and 37 clinicians from five different mental health hospitals answered the questionnaire (response rate: 45% and 28%). Overall, acceptance of online applications among respondents was high. The healthcare providers mentioned perceived benefits (e.g. accessibility of new patient groups, use of therapy-free periods) as well as a number of technical, structural, organizational and staffing barriers for successful implementation in hospital settings (e.g. workload of healthcare providers and lack of staff, limited digital competences, unstable WLAN). CONCLUSION: The perceived barriers and facilitators of the implementation of online applications and electronic patient portals in mental health hospitals identified by healthcare providers may be taken into account. Improving commitment of the healthcare providers to implementation and use of digital interventions may help foster digitalisation in mental health hospitals.


Subject(s)
Attitude of Health Personnel , Patient Portals , Humans , Germany , Patient Portals/statistics & numerical data , Surveys and Questionnaires , Male , Female , Hospitals, Psychiatric , Electronic Health Records , Adult , Mental Health Services/organization & administration , Middle Aged , Health Personnel/psychology
8.
J Genet Couns ; 2024 Apr 26.
Article in English | MEDLINE | ID: mdl-38665117

ABSTRACT

Genetic counseling is key for understanding the consequences of hereditary and genetic diseases and, therefore, crucial for patients, their families, and healthcare providers. Genetic counseling facilitates individuals' comprehension, decision-making, and adaptation to hereditary diseases. This study focuses on the Swedish adaptation of the Genetic Counseling Outcome Scale-24 (GCOS-24), an internationally validated, patient-reported outcome measure (PROM) for quantifying patient empowerment in genetic counseling. This study aimed to translate and cross-culturally adapt the GCOS-24 to measure patient-reported outcome from genetic counseling in Sweden. The adaptation process was meticulously conducted, adhering to international guidelines, with cross-cultural adaptation, translation, and back translation, to ensure semantic, conceptual, and idiomatic equivalence with the original English version. Face validity and understandability was assured using qualitative cognitive interviews conducted with patient representatives, and by a committee of experts in the field. The psychometric properties of the Swedish version of GCOS-24 (GCOS-24swe) were evaluated using a robust sample of 374 patients. These individuals received genetic counseling by telephone or video, necessitated by the constraints of the COVID-19 pandemic. Participants responded to GCOS-24swe both before and after genetic counseling. The GCOS-24swe demonstrated face validity, good internal consistency (Cronbach's alpha = 0.86), significant responsiveness (Cohen's d = 0.65, p < 0.001), and good construct validity. The study's findings underscore the GCOS-24swe's potential as an effective instrument in both clinical practice and research within Sweden. It offers a valuable means for assessing patient empowerment, a key goal of genetic counseling. Additional psychometric assessment of test-retest reliability and interpretability would further enhance the utility of GCOS-24swe.

9.
J Med Internet Res ; 26: e48182, 2024 Feb 12.
Article in English | MEDLINE | ID: mdl-38345851

ABSTRACT

BACKGROUND: In chronic mental illness, noncompliance with treatment significantly worsens the illness course and outcomes for patients. Considering that nearly 1 billion people worldwide experience mental health issues, including 1 of 5 Canadians in any given year, finding tools to lower noncompliance in these populations is critical for health care systems. A promising avenue is apps that make mental health services more accessible to patients. However, little is known regarding the impact of the empowerment gained from mental health apps on patient compliance with recommended treatment. OBJECTIVE: This study aimed to investigate the impact of patient empowerment gained through mental health apps on patient trust in the health care provider and patient compliance with the recommended treatment. METHODS: A cross-sectional web-based survey was conducted in Canada. Eligible participants were Canadian adults diagnosed with chronic mental health disorders who were using at least one of the following apps: Dialogue, MindBeacon, Deprexis, Ginger, Talkspace, BetterHelp, MindStrong, Mindshift, Bloom, Headspace, and Calm. A total of 347 valid questionnaires were collected and analyzed using partial least-squares structural equation modeling. Trust in the health care provider and patient compliance were measured with multiple-item scales adapted from existing scales. Patient empowerment was conceived and measured as a higher-order construct encompassing the following 2 dimensions: patient process and patient outcome. All the items contributing to the constructs in the model were measured with 7-point Likert scales. The reliability and validity of the measurement model were assessed, and the path coefficients of the structural model were estimated. RESULTS: The results clearly show that patient empowerment gained through mental health apps positively influenced patient trust in the health care provider (ß=.306; P<.001). Patient trust in the health care provider had a positive effect on patient compliance (ß=.725; P<.001). The direct relationship between patient empowerment and patient compliance was not significant (ß=.061, P=.23). Interestingly, the data highlight that the effect of patient empowerment on patient compliance was fully mediated by trust in the health care provider (ß=.222; P<.001). The results show that patient empowerment gained through the mental health app involves 2 dimensions: a process and an outcome. CONCLUSIONS: This study shows that for individuals living with mental health disorders, empowerment gained through mental health apps enhances trust in the health care provider. It reveals that patient empowerment impacts patient compliance but only through the full mediating effect of patient trust in the health care provider, indicating that patient trust is a critical variable to enhance patient compliance. Hence, our results confirm that health care systems could encourage the use of mental health apps to favor a climate that facilitates patients' trust in health care provider recommendations, possibly leading to better compliance with the recommended treatment.


Subject(s)
Mental Disorders , Mental Health , North American People , Patient Participation , Software , Adult , Humans , Canada , Cross-Sectional Studies , Health Personnel , North American People/psychology , Patient Compliance/psychology , Reproducibility of Results , Trust , Mobile Applications , Mental Disorders/psychology , Mental Disorders/therapy , Chronic Disease
10.
J Med Internet Res ; 26: e54940, 2024 Apr 02.
Article in English | MEDLINE | ID: mdl-38564266

ABSTRACT

BACKGROUND: The management of type 2 diabetes (T2D) and obesity, particularly in the context of self-monitoring, remains a critical challenge in health care. As nearly 80% to 90% of patients with T2D have overweight or obesity, there is a compelling need for interventions that can effectively manage both conditions simultaneously. One of the goals in managing chronic conditions is to increase awareness and generate behavioral change to improve outcomes in diabetes and related comorbidities, such as overweight or obesity. There is a lack of real-life evidence to test the impact of self-monitoring of weight on glycemic outcomes and its underlying mechanisms. OBJECTIVE: This study aims to assess the efficacy of digital self-monitoring of weight on blood glucose (BG) levels during diabetes management, investigating whether the weight changes may drive glucose fluctuations. METHODS: In this retrospective, real-world quasi-randomized study, 50% of the individuals who regularly used the weight monitoring (WM) feature were propensity score matched with 50% of the users who did not use the weight monitoring feature (NWM) based on demographic and clinical characteristics. All the patients were diagnosed with T2D and tracked their BG levels. We analyzed monthly aggregated data 6 months before and after starting their weight monitoring. A piecewise mixed model was used for analyzing the time trajectories of BG and weight as well as exploring the disaggregation effect of between- and within-patient lagged effects of weight on BG. RESULTS: The WM group exhibited a significant reduction in BG levels post intervention (P<.001), whereas the nonmonitoring group showed no significant changes (P=.59), and both groups showed no differences in BG pattern before the intervention (P=.59). Furthermore, the WM group achieved a meaningful decrease in BMI (P<.001). Finally, both within-patient (P<.001) and between-patient (P=.008) weight variability was positively associated with BG levels. However, 1-month lagged back BMI was not associated with BG levels (P=.36). CONCLUSIONS: This study highlights the substantial benefits of self-monitoring of weight in managing BG levels in patients with diabetes, facilitated by a digital health platform, and advocates for the integration of digital self-monitoring tools in chronic disease management. We also provide initial evidence of testing the underlying mechanisms associated with BG management, underscoring the potential role of patient empowerment.


Subject(s)
Diabetes Mellitus, Type 2 , Humans , Diabetes Mellitus, Type 2/therapy , Overweight , Retrospective Studies , Obesity/therapy , Digital Health
11.
J Med Internet Res ; 26: e55757, 2024 Jul 22.
Article in English | MEDLINE | ID: mdl-39037772

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 2 , Glycated Hemoglobin , Self-Management , Diabetes Mellitus, Type 2/therapy , Diabetes Mellitus, Type 2/blood , Humans , Self-Management/methods , Glycated Hemoglobin/analysis , Randomized Controlled Trials as Topic , Blood Glucose Self-Monitoring/methods
12.
J Med Internet Res ; 26: e53991, 2024 Feb 22.
Article in English | MEDLINE | ID: mdl-38386376

ABSTRACT

BACKGROUND: The use of eHealth technology in cardiac rehabilitation (CR) is a promising approach to enhance patient outcomes since adherence to healthy lifestyles and risk factor management during phase III CR maintenance is often poorly supported. However, patients' needs and expectations have not been extensively analyzed to inform the design of such eHealth solutions. OBJECTIVE: The goal of this study was to provide a detailed patient perspective on the most important functionalities to include in an eHealth solution to assist them in phase III CR maintenance. METHODS: A guided survey as part of a Living Lab approach was conducted in Germany (n=49) and Spain (n=30) involving women (16/79, 20%) and men (63/79, 80%) with coronary artery disease (mean age 57 years, SD 9 years) participating in a structured center-based CR program. The survey covered patients' perceived importance of different CR components in general, current usage of technology/technical devices, and helpfulness of the potential features of eHealth in CR. Questionnaires were used to identify personality traits (psychological flexibility, optimism/pessimism, positive/negative affect), potentially predisposing patients to acceptance of an app/monitoring devices. RESULTS: All the patients in this study owned a smartphone, while 30%-40% used smartwatches and fitness trackers. Patients expressed the need for an eHealth platform that is user-friendly, personalized, and easily accessible, and 71% (56/79) of the patients believed that technology could help them to maintain health goals after CR. Among the offered components, support for regular physical exercise, including updated schedules and progress documentation, was rated the highest. In addition, patients rated the availability of information on diagnosis, current medication, test results, and risk scores as (very) useful. Of note, for each item, except smoking cessation, 35%-50% of the patients indicated a high need for support to achieve their long-term health goals, suggesting the need for individualized care. No major differences were detected between Spanish and German patients (all P>.05) and only younger age (P=.03) but not sex, education level, or personality traits (all P>.05) were associated with the acceptance of eHealth components. CONCLUSIONS: The patient perspectives collected in this study indicate high acceptance of personalized user-friendly eHealth platforms with remote monitoring to improve adherence to healthy lifestyles among patients with coronary artery disease during phase III CR maintenance. The identified patient needs comprise support in physical exercise, including regular updates on personalized training recommendations. Availability of diagnoses, laboratory results, and medications, as part of a mobile electronic health record were also rated as very useful. TRIAL REGISTRATION: ClinicalTrials.gov NCT05461729; https://clinicaltrials.gov/study/NCT05461729.


Subject(s)
Cardiac Rehabilitation , Coronary Artery Disease , Telemedicine , Female , Humans , Male , Middle Aged , Cross-Sectional Studies , Germany , Motivation , Spain , Aged
13.
BMC Med Inform Decis Mak ; 24(1): 185, 2024 Jun 28.
Article in English | MEDLINE | ID: mdl-38943152

ABSTRACT

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.


Subject(s)
Decision Making, Shared , Patient Participation , Patient Reported Outcome Measures , Humans , Chronic Disease/therapy , Empowerment
14.
J Adv Nurs ; 2024 Sep 20.
Article in English | MEDLINE | ID: mdl-39304300

ABSTRACT

AIMS: To compare nurses' and patients' reports of missed nursing care, explore patients' perspectives and utilise these insights to elucidate discrepancies or congruence between perceptions. DESIGN: A descriptive mixed-methods design combining quantitative (questionnaires) and qualitative (semi-structured interviews) methods. METHODS: In the quantitative phase, 143 nurses and 643 patients completed the MISSCARE and MISSCARE-Patient surveys. Correlations between their total missed care scores were examined. In the qualitative phase, 68 patients participated in semi-structured interviews analysed using thematic analysis. RESULTS: The correlation between nurses' and patients' perceptions of missed nursing care was nonsignificant. Qualitative findings revealed three themes: (1) patients' need to preserve individuality; (2) most patients attributed missed care to systemic factors, while some attributed it to nurses' attitudes and (3) emotional responses varied from empathetic understanding, inadvertently enabling more missed care, to frustration and assertiveness to ensure receiving necessary care. CONCLUSIONS: This study reveals a significant discrepancy between nurses' and patients' perceptions of missed care. Patient perspectives offer insights into this misalignment, highlighting differences in care priorities and role understanding. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Enhancing nurse-patient communication and patient empowerment are crucial. Healthcare institutions should integrate patient feedback into quality initiatives, create supportive work environments and foster a patient-centred care culture. Effectively marketing nurses' expertise and implementing strategies to manage patient assertiveness are essential. IMPACT: This study addresses the discrepancy in perceptions of missed nursing care between nurses and patients. It reveals how patients' care priorities and attributions influence their experience of missed care. Findings will impact healthcare policymakers, nursing educators and hospital administrators, informing strategies to improve care quality, patient satisfaction and nurse work environments across healthcare settings. REPORTING METHOD: The study has adhered to STROBE guidelines for the quantitative component and SRQR guidelines for the qualitative component. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

15.
BMC Med Educ ; 24(1): 121, 2024 Feb 07.
Article in English | MEDLINE | ID: mdl-38326814

ABSTRACT

BACKGROUND: Healthcare professionals traditional education reflects constraints to face the complex needs of people with chronic diseases in primary care settings. Since more innovative and practical solutions are required, Virtual Community of Practices (vCoP) seem to better respond to learning updates, improving professional and organizational knowledge. However, little is known about the value created in vCoPs as social learning environments. The objective of this project was to explore the value creation process of a gamified vCoP ("e-mpodera vCoP") aimed at improving the knowledge and attitudes of primary healthcare professionals (PCPs) (nurses and general practitioners) to the empowerment of people with chronic conditions. METHODS: A framework analysis assessed the value creation process using a mixed methods approach. The framework provided awareness about knowledge and usefulness in a learning community through five cycles: (1) immediate value, (2) potential value, (3) applied value, (4) realized value, and (5) reframing value. Quantitative data included vCoP analytics such as logins, contributions, points, badges, and performance metrics. Qualitative data consisted of PCPs' forum contributions from Madrid, Catalonia, and Canary Islands over 14 months. RESULTS: A total of 185 PCPs had access to the e-mpodera vCoPs. The vCoP showed the dynamic participation of 146 PCPs, along 63 content activities posted, including a total of 3,571 contributions (including text, images, links to webpages, and other files). Regarding the value creation process, the e-mpodera vCoP seems to encompass a broad spectrum of value cycles, with indicators mostly related to cycle 1 (immediate value - activities and interactions) and cycle 2 (potential value - knowledge capital); and to a lesser extent for cycle 3 (applied value - changes in practice) and for cycle 4 (realized value - performance improvement). The presence of indicators related to cycle 5 (reframing value), was minimal, due to few individual redefinitions of success. CONCLUSION: To reach a wider range of value possibilities, a combination of learning objectives, competence framework, challenged-based gamified platform, and pathway model of skill development seems crucial. However, additional research is required to gain clearer insights into organizational values, professionals' lifelong educational needs in healthcare, and the long-term sustainability of performance improvement. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02757781. Registered on 02/05/2016.


Subject(s)
Education, Professional , General Practitioners , Humans , Community of Practice , Attitude , Primary Health Care
16.
Int J Nurs Pract ; 30(2): e13233, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38230568

ABSTRACT

AIMS: This study aimed to (i) evaluate the effectiveness of mindfulness-based interventions in improving self-efficacy, reducing stress and anxiety among peritoneal dialysis patients, and (ii) compare the most effective method of mindfulness based interventions. METHODS: This randomized three-arm controlled trial recruited first-time peritoneal dialysis patients from the peritoneal dialysis outpatient clinic in Singapore. Patients were randomly allocated to either video-assisted mindfulness training, therapist-assisted mindfulness training or treatment-as-usual. All groups received 4.5 days of structured peritoneal dialysis training at the peritoneal dialysis centre, while video-assisted mindfulness training and therapist-assisted mindfulness training groups were taught additional mindfulness-based techniques. The perceived stress scale, self-efficacy, and anxiety (State and Trait Anxiety Inventory) were measured at baseline, 4- and 12 weeks post-randomization, using reliable and valid instruments. RESULTS: Thirty-nine patients were recruited (13 in each group). All the therapies showed a significant time trend in anxiety. Only therapist- and video-assisted mindfulness training showed a significant trend in perceived stress scale scores but not treatment-as-usual. All Intervention X Time interactions were not significant. Patients in therapist- and video-assisted mindfulness training groups had reduced perceived stress scale scores compared to treatment-as-usual at week 12. CONCLUSION: This study demonstrated the potential of mindfulness-based interventions in reducing stress among first-time PD patients.


Subject(s)
Mindfulness , Peritoneal Dialysis , Psychological Tests , Self Report , Humans , Mindfulness/methods , Singapore , Ambulatory Care Facilities , Technology
17.
Appl Nurs Res ; 79: 151828, 2024 10.
Article in English | MEDLINE | ID: mdl-39256017

ABSTRACT

BACKGROUND: The global population of older aged 65 and over is increasing, which means an increase in people living with long-term health conditions and multimorbidity. Implementing new digital health technologies enables increased patient empowerment and responsibility, and the ability to respond to changes in their condition themselves, with less involvement of healthcare professionals. Important parameters need to be addressed for this digitally enabled empowerment to be successful, these include increased individual and organizational health literacy, the establishment of joint decision-making activities among patients and healthcare professionals, and efforts that target the individual's ability to manage their condition, which include education to increase skills and providing technology for self-monitoring. OBJECTIVE: To identify needed competencies of digital healthcare professionals to be able to provide the needed services to service users with chronic obstructive pulmonary disease in a 24/7 digital healthcare service. METHOD: Five registered nurses' work was observed weekly for five months. In total 13 participatory observations were conducted. Data from the observations was transcribed and analysed through inductive content analysis. RESULTS: Five main categories were identified in the analysis; 1) tasks, 2) communication, 3) the relationships between the registered nurses, 4) service users, and 5) technology. These categories contain different competencies needed for registered nurses working in a digitalized healthcare system. CONCLUSIONS: Future digital healthcare professionals will require several competencies, to be able to deliver proper care in a digital health community that goes beyond traditional healthcare competencies, including social, technological, and communication skills.


Subject(s)
Pulmonary Disease, Chronic Obstructive , Telemedicine , Humans , Pulmonary Disease, Chronic Obstructive/nursing , Female , Male , Aged , Middle Aged , Patient-Centered Care , Adult , Clinical Competence/standards , Clinical Competence/statistics & numerical data , Empowerment , Aged, 80 and over , Nursing Staff/psychology
18.
Am J Psychother ; 77(3): 141-145, 2024 Sep 01.
Article in English | MEDLINE | ID: mdl-38711402

ABSTRACT

Dissociative identity disorder is a posttraumatic, psychobiological syndrome that develops over time during childhood. Despite empirical evidence supporting the validity of this diagnosis and its relation to trauma, the disorder remains a misunderstood and stigmatized condition. This article highlights expert consensus guidelines and current empirical research on the treatment of dissociative identity disorder. In addition, the authors describe the Lived Experience Advisory Panel (LEAP), which was designed to leverage the expertise of individuals with dissociative identity disorder to combat stigma and improve research, clinical programming, professional education, and public outreach related to the disorder. This article also describes how LEAP members have partnered with other researchers to create new knowledge through participatory action research in order to advance equitable service provision and effect positive change.


Subject(s)
Dissociative Identity Disorder , Humans , Dissociative Identity Disorder/therapy , Dissociative Identity Disorder/psychology , Social Stigma , Psychotherapy/methods
19.
Med Health Care Philos ; 27(3): 399-405, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38850497

ABSTRACT

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.


Subject(s)
Decision Making , Personal Autonomy , Humans , Decision Making/ethics , Ethics, Medical , Philosophy, Medical
20.
Nephrol Nurs J ; 51(2): 143-152, 2024.
Article in English | MEDLINE | ID: mdl-38727590

ABSTRACT

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.


Subject(s)
Hemodialysis, Home , Kidney Failure, Chronic , Humans , Kidney Failure, Chronic/therapy , Patient Education as Topic , Male , Female , Middle Aged , Patient Transfer
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