Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 45
Filtrar
Mais filtros

Base de dados
Tipo de documento
Intervalo de ano de publicação
1.
Epilepsy Behav ; 154: 109747, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38518673

RESUMO

Artificial intelligence (AI) has been supporting our digital life for decades, but public interest in this has exploded with the recognition of large language models, such as GPT-4. We examine and evaluate the potential uses for generative AI technologies in epilepsy and neurological services. Generative AI could not only improve patient care and safety by refining communication and removing certain barriers to healthcare but may also extend to streamlining a doctor's practice through strategies such as automating paperwork. Challenges with the integration of generative AI in epilepsy services are also explored and include the risk of producing inaccurate and biased information. The impact generative AI could have on the provision of healthcare, both positive and negative, should be understood and considered carefully when deciding on the steps that need to be taken before AI is ready for use in hospitals and epilepsy services.


Assuntos
Inteligência Artificial , Epilepsia , Humanos , Epilepsia/terapia
2.
J Gen Intern Med ; 36(4): 952-960, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33474640

RESUMO

BACKGROUND: Despite significant investment in colorectal cancer (CRC) screening, 40% of US adults are not up-to-date. Commitment devices, which are psychologically tailored approaches to enforce health goals, may be an effective method to increase CRC screening. OBJECTIVE: Compare the effectiveness of a commitment device (patient self-ordering fecal immunochemical test (FIT) kits) to standard CRC screening outreach. DESIGN: A retrospective observational study. PARTICIPANTS: Participants were > 49 years and < 75 years, had no history of CRC, and were eligible for CRC screening. INTERVENTION: An electronic screening reminder with an embedded order button allowed participants to order FIT kits directly from a patient portal. Those who used the order button were promptly sent a kit; those who did not were later mailed kits. MAIN MEASURES: Primary outcome was completion of FIT kits. Secondary outcomes included number of days to completion, completion of follow-up for positive results, and CRC diagnosis; we also examined prior use of FIT kit. We used inverse probability of treatment weights to control for pretreatment imbalances. KEY RESULTS: The cohort comprised 176,231 participants: 53% female; median age was 59; 11% were Asian, 21% Hispanic/Latino, 7% black, 51% White, 3% other/mixed race. Approximately 10% (N = 16,918) used the button. Using inverse probability of treatment weights, we found that those who used the button had 3.8 times the odds of completing a kit compared to participants who did not (odds ratio, 3.77; 95% confidence interval, 3.57-3.98). Within the button group, 63% of those eligible completed a FIT kit in the year prior to the button compared to 87% in the year after the button became available (p < 0.0001). CONCLUSION: The ability to self-order screening kits may act as a commitment device that increases CRC screening. Scalable tools leveraging existing patient portals such as this can complement existing CRC outreach strategies.


Assuntos
Neoplasias Colorretais , Portais do Paciente , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/epidemiologia , Detecção Precoce de Câncer , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Sangue Oculto
3.
Ann Fam Med ; 19(6): 532-539, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34750128

RESUMO

PURPOSE: We undertook a study to ascertain patient characteristics associated with enrollment and engagement in a type 2 diabetes peer health coaching program at an urban health care facility serving predominantly Black veteran men, to improve the targeting of such programs. METHODS: A total of 149 patients declined enrollment in a randomized controlled trial but provided sociodemographic, clinical, and psychosocial information. A total of 290 patients enrolled and were randomized to 2 peer coaching programs; they provided sociodemographic, clinical, and survey data, and were analyzed according to their level of program engagement (167 engaged, 123 did not engage) irrespective of randomization group. Qualitative interviews were conducted with 14 engaged participants. RESULTS: Patients who enrolled were more likely to be Black men, have higher levels of education, have higher baseline hemoglobin A1c levels, describe their diabetes self-management as "fair" or "poor," and agree they "find it easy to get close to others" (P <.05 for each). At the program's end, patients who had engaged were more likely than those who had not to describe their peer coaches as being supportive of their autonomy (mean score, 85.4 vs 70.7; P <.001). The importance of coaches being encouraging, supportive, and having common ground/shared experiences with participants also emerged as key themes in interviews with engaged participants. CONCLUSION: Individuals with greatest perceived need were more likely to enroll in our trial of peer coaching, but the only factor associated with engagement was finding one's coach to support autonomy. Our findings reinforce the importance of training and ensuring fidelity of peer coaches to autonomy-supportive communication styles for participant engagement. In tailoring peer support programs for Black men, future research should elucidate which shared characteristics between participant and peer coach are most important for engagement and improved outcomes.Visual abstract.


Assuntos
Diabetes Mellitus Tipo 2 , Tutoria , Autogestão , Veteranos , Diabetes Mellitus Tipo 2/terapia , Humanos , Masculino , Grupo Associado , Autocuidado
4.
Health Qual Life Outcomes ; 19(1): 254, 2021 Nov 12.
Artigo em Inglês | MEDLINE | ID: mdl-34772424

RESUMO

OBJECTIVE: Elderly patients with type 2 diabetes mellitus are highly vulnerable due to severe complications. However, there is a contradiction in the relationship between social support and quality of life, which warrants further exploration of the internal mechanism. This study assessed the quality of life and its interfering factors in this patient population. METHODS: In total, 571 patients with type 2 diabetes mellitus over 60 years old were recruited from two community clinics in Heilongjiang Province, China. We collected data on health status, quality of life, self-management behavior, fasting plasma glucose (FPG) level, and social support. Structural equation modeling and the bootstrap method were used to analyze the data. RESULTS: The average quality of life score was - 29.25 ± 24.41. Poorly scored domains of quality of life were "Psychological feeling" (- 8.67), "Activity" (- 6.36), and "Emotion" (- 6.12). Of the 571 patients, 65.32% had normal FPG, 9.8% had high-risk FPG, 15.94% had good self-management behavior, and 22.07% had poor social support. Significant correlations among social support, self-management behavior, FPG level, and quality of life were noted. A multiple mediator model revealed that social support influenced quality of life in three ways: (1) directly (c' = 0.6831); (2) indirectly through self-management behavior (a1*b1 = 0.1773); and (3) indirectly through FPG control (a2*b2 = 0.1929). Self-management behavior influenced the quality of life directly and indirectly through FPG control. CONCLUSION: Improving self-management behavior and monitoring hypoglycemia should become priority targets for future intervention. Scheduled social support to self-management projects should be put into the standardized management procedure. Physicians should provide substantial and individualized support to the elderly patients with type 2 diabetes mellitus regarding medication, blood glucose monitoring, and physical exercise.


Assuntos
Diabetes Mellitus Tipo 2 , Autogestão , Idoso , Glicemia , Automonitorização da Glicemia , Diabetes Mellitus Tipo 2/terapia , Jejum , Humanos , Pessoa de Meia-Idade , Qualidade de Vida , Apoio Social
5.
BMC Geriatr ; 21(1): 386, 2021 06 26.
Artigo em Inglês | MEDLINE | ID: mdl-34174815

RESUMO

BACKGROUND: Understanding behavioral factors associated with low health literacy (HL) is relevant for health care providers to better support their patients' health and adherence to preventive treatment. In this study, we aim to study associations between low HL and socio-demographic characteristics, medication-related perceptions and experience, as well as general psychological factors among patients aged 50-80 years. METHODS: We used a cross-sectional survey design based on a representative group of 6,871 Danish citizens aged 50-80 years returning a web-based questionnaire with socio-demographic data added from a national registry. Chi-square tests were conducted to analyze associations between low HL and daily use of medication and self-rated health. Chi-square tests and binary logistic regression were conducted for analyzing data from respondents using prescribed medicines daily (N = 4,091). RESULTS: Respondents with low HL were more often on daily medications (19 % [777/4,091] vs. 16 % [436/2,775]; P < 0.001) and were more likely to have poorer self-rated health (P < 0.001). Among patients on daily medications, low HL was significantly higher among men and those with lower educational attainment and lower family income. Low HL was independently and positively associated with perceptions that taking prescribed medicines daily is difficult and time-consuming, with forgetting to take prescribed medicines, and with lower satisfaction with life and poor self-assessed health. CONCLUSIONS: Our study provides information that patients aged 50-80 years with low HL are challenged on their adherence to treatment plans which is not only related to traditional sociodemographic factors but also on perceptions related to taking medication per se.


Assuntos
Letramento em Saúde , Estudos Transversais , Dinamarca/epidemiologia , Humanos , Masculino , Adesão à Medicação , Inquéritos e Questionários
6.
J Nurs Manag ; 29(6): 1623-1630, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33690900

RESUMO

AIMS: To investigate the relationship between the unit work environment and psychological empowerment of nurses and their perceptions of patient activation. BACKGROUND: Nurses' support for active patient roles in the care process is critical for better patient outcomes. The factors influencing nurses' support for patient activation should be thoroughly investigated. METHODS: This study was a cross-sectional secondary data analysis using the survey data of 1,042 nurses in 98 units at six hospitals in Korea. RESULTS: Nurses with perceptions that their work was valuable and autonomy in their work were more likely to work in units where managers had greater managerial and leadership skills and staffing and resources were sufficient. Those with confidence in their work were more likely to work in units with adequate staffing and resources. Nurses who worked with adequate staffing and resources and considered their work meaningful were more likely to perceive patient activation as more important. CONCLUSION: Favourable work environments at unit level and psychological empowerment at nurse level can strengthen nurses' support for patient activation. IMPLICATIONS FOR NURSING MANAGEMENT: To strengthen nurses' support for active patient roles, organisations should ensure optimal staffing and resources to each unit and help nurses find value in their work.


Assuntos
Enfermeiras e Enfermeiros , Recursos Humanos de Enfermagem Hospitalar , Estudos Transversais , Humanos , Liderança , Participação do Paciente , Local de Trabalho
7.
J Med Internet Res ; 22(8): e17696, 2020 08 12.
Artigo em Inglês | MEDLINE | ID: mdl-32784175

RESUMO

BACKGROUND: The number of public eHealth services that support patient self-management is rapidly increasing. However, the implementation of these eHealth services for self-management has encountered challenges. OBJECTIVE: The purpose of this paper was to analyze the challenges and opportunities of implementing eHealth services for self-management by focusing on the fit between the technical solution and clinical use. METHODS: We performed in-depth interviews with 10 clinical project coordinators and managers who were responsible for developing and implementing various eHealth services for self-management interventions in five university hospitals in Finland. The results were analyzed using content analysis and open coding. The Fit between Individuals, Task, and Technology (FITT) framework was used to interpret the findings. RESULTS: The implementation of self-management services involved many challenges related to technical problems, health professional acceptance, patient motivation, and health organization and management. The implementers identified practices to manage the identified challenges, including improving the design of the technology, supporting health professionals in the adoption of the eHealth services, changing the work processes and tasks, involving patients, and collectively planning the implementation inside an organization. The findings could be mostly attributed to the dimensions of the FITT framework. CONCLUSIONS: The FITT framework helped to analyze the challenges related to the implementation, and most of them were related to poor fit. The importance of patients as stakeholders in eHealth services for patient self-management needs to be highlighted. Thus, we propose that patients should be added as a different type of individual dimension to the FITT framework. In addition, the framework could be extended to include organization and management in a new context dimension.


Assuntos
Entrevista Psicológica/métodos , Autogestão/métodos , Telemedicina/métodos , Feminino , Humanos , Masculino , Pesquisa Qualitativa
8.
Br J Nurs ; 29(5): 266-272, 2020 Mar 12.
Artigo em Inglês | MEDLINE | ID: mdl-32167825

RESUMO

BACKGROUND: Online self-management education programmes are now recommended for people with type 2 diabetes to improve self-management capacities. There is limited evidence to determine whether such programmes improve the health outcomes for midlife adults with diabetes. AIMS: The purpose of this systematic review was to assess the impact of online self-management interventions with digital consulting on glycated haemoglobin (HbA1c), total cholesterol, blood pressure, diabetes distress, self-efficacy, and depression in midlife adults. METHODS: A systematic review was undertaken searching Medline, Embase and CINAHL. Studies were appraised using the Cochrane Collaboration's tool. RESULTS: Eight studies were included. Online interventions resulted in the improvement of HbA1c (pooled mean difference on HbA1c: -0.35%, 95% CI (-0.52, -0.18), P<0.001). A narrative synthesis was conducted for all secondary outcomes. No conclusions could be drawn on the impact of these outcomes. CONCLUSION: Online interventions improve HbA1c. Further research is needed for secondary outcomes.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Hemoglobinas Glicadas/análise , Internet , Autogestão , Depressão/prevenção & controle , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Autoeficácia
9.
Med Law Rev ; 28(3): 549-572, 2020 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-32638001

RESUMO

mHealth, the use of mobile and wireless technologies in healthcare, and mHealth apps, a subgroup of mHealth, are expected to result in more person-focussed healthcare. These technologies are predicted to make patients more motivated in their own healthcare, reducing the need for intensive medical intervention. Thus, mHealth app technology might lead to a redesign of existing healthcare architecture making the system more efficient, sustainable, and less expensive. As a disruptive innovation, it might destabilise the existing healthcare organisation through a changed role for healthcare professionals with patients accessing care remotely or online. This account coincides with the broader narrative of National Health Service policy-makers, which focusses on personalised healthcare and greater patient responsibility with the potential for significant cost reductions. The article proposes that while the concept of mHealth apps as a disruptive technology and the narrative of personalisation and responsibilisation might support a transformation of the healthcare system and a reduction of costs, both are dependent on patient trust in the safety and security of the new technology. Forcing trust in this field may only be achieved with the application of traditional and other regulatory mechanisms and with this comes the risk of reducing the effect of the technology's disruptive potential.


Assuntos
Tecnologia Disruptiva/legislação & jurisprudência , Aplicativos Móveis/legislação & jurisprudência , Telemedicina/legislação & jurisprudência , Confiança , Segurança Computacional/legislação & jurisprudência , Tecnologia Disruptiva/economia , Tecnologia Disruptiva/tendências , Regulamentação Governamental , Aplicativos Móveis/economia , Aplicativos Móveis/tendências , Programas Nacionais de Saúde , Formulação de Políticas , Segurança , Telemedicina/economia , Telemedicina/tendências , Reino Unido
10.
Clin Rehabil ; 33(11): 1747-1756, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31216880

RESUMO

OBJECTIVE: To test the effectiveness of an educational intervention including "face to face" training, compared to a standard information program, to reduce microstomia in women with systemic sclerosis. DESIGN: Single-blind, two-arm, randomized controlled study with a 12-month follow-up period. SETTING: Hospital wards of a large Italian dermatological reference center. SUBJECTS: Female inpatients with diagnosis of systemic sclerosis. INTERVENTIONS: For both groups an information brochure and an audio-visual DVD were developed specifically for the study. The control group was assigned to educational materials alone (i.e. brochures and DVD), while the experimental group, in addition to the same educational materials, received specific "face-to-face" interventions, repeated at each follow-up visit. MAIN MEASURES: Primary outcome was measurement of the opening of the mouth. Secondary outcomes was the self-reported mouth disability. RESULTS: The intention-to-treat analysis included 63 patients. Compared to the baseline measurement, we observed an increase of the mouth opening of 0.31 cm (95% confidence interval: 0.13-0.49), P = 0.003; in the control group, the increase was 0.13 cm (95% confidence interval: 0.01-0.25), P = 0.06. The difference in improvement between the two groups was not statistically significant (P = 0.10); however, it reached statistical significance in the per-protocol analysis (39 patients, P = 0.02). CONCLUSION: Face-to-face nursing rehabilitation training seems to improve microstomia to a greater extent, when compared to a standard intervention based only on written and audio-visual materials.


Assuntos
Microstomia/reabilitação , Exercícios de Alongamento Muscular , Educação de Pacientes como Assunto , Escleroderma Sistêmico/complicações , Idoso , Feminino , Humanos , Microstomia/etiologia , Pessoa de Meia-Idade , Autogestão , Método Simples-Cego
11.
BMC Health Serv Res ; 19(1): 716, 2019 10 21.
Artigo em Inglês | MEDLINE | ID: mdl-31639002

RESUMO

BACKGROUND: Patients with cardiovascular diseases (CVD) are treated over a long period of time by physicians and therapists from various institutions collaborating within a multidisciplinary team. Usually, medical records detailing the diagnoses and treatment regimens are long and extensive. Brief overviews of relevant diagnostic and treatment data in the form of a patient passport are currently missing in routine care for patients with CVD. This study aimed to develop and evaluate a patient passport (the Kardio-Pass) based on the needs of patients who had undergone cardiac rehabilitation, and of healthcare professionals. METHODS: A mixed method design was adopted consisting of an explorative qualitative phase followed by a quantitative evaluation phase. Interviews with patients and experts were conducted to develop the Kardio-Pass. CVD rehabilitees (N = 150) were asked to evaluate the passport using a semi-standardized written questionnaire. RESULTS: Patients and experts who were interviewed in the qualitative study phase considered the following passport contents to be particularly important: documentation of findings and diagnoses, cardiac diagnostics and intervention, medication plan, risk factors for heart disease, signs of a heart attack and what to do in an emergency. During the evaluation phase, 93 rehabilitees (response rate: 62%) completed the questionnaire. The Kardio-Pass achieved high overall approval: All respondents considered the information contained in the passport to be trustworthy. The professionalism and the design of the passport were rated very highly by 93 and 92% of participants, respectively. Use of the Kardio-Pass prompted 53% of participants to regularly attend follow-up appointments. The most common reasons for non-use were a lack of support from the attending doctor, failure by the patient to make entries in the passport, and loss of the passport. CONCLUSIONS: By documenting the course of cardiac diseases, the patient passport pools all medical data-from diagnosis to treatment and aftercare-in a concise manner. Rehabilitees who used the cardiac passport rated it as a helpful tool for documenting follow-up data. However, with regard to this explorative study there is a need for further research, particularly on whether the patient passport can improve heart patient care.


Assuntos
Documentação/métodos , Cardiopatias/reabilitação , Autogestão , Idoso , Continuidade da Assistência ao Paciente , Feminino , Humanos , Masculino , Prontuários Médicos , Pessoa de Meia-Idade , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa
12.
J Med Internet Res ; 20(4): e111, 2018 04 25.
Artigo em Inglês | MEDLINE | ID: mdl-29695375

RESUMO

BACKGROUND: Clinical guidelines recommend monitoring of blood pressure at home using an automatic blood pressure device for the management of hypertension. Devices are not often calibrated against direct blood pressure measures, leaving health care providers and patients with less reliable information than is possible with current technology. Rigorous assessments of medical devices are necessary for establishing clinical utility. OBJECTIVE: The purpose of our study was 2-fold: (1) to assess the validity and perform iterative calibration of indirect blood pressure measurements by a noninvasive wrist cuff blood pressure device in direct comparison with simultaneously recorded peripheral and central intra-arterial blood pressure measurements and (2) to assess the validity of the measurements thereafter of the noninvasive wrist cuff blood pressure device in comparison with measurements by a noninvasive upper arm blood pressure device to the Canadian hypertension guidelines. METHODS: The cloud-based blood pressure algorithms for an oscillometric wrist cuff device were iteratively calibrated to direct pressure measures in 20 consented patient participants. We then assessed measurement validity of the device, using Bland-Altman analysis during routine cardiovascular catheterization. RESULTS: The precalibrated absolute mean difference between direct intra-arterial to wrist cuff pressure measurements were 10.8 (SD 9.7) for systolic and 16.1 (SD 6.3) for diastolic. The postcalibrated absolute mean difference was 7.2 (SD 5.1) for systolic and 4.3 (SD 3.3) for diastolic pressures. This is an improvement in accuracy of 33% systolic and 73% diastolic with a 48% reduction in the variability for both measures. Furthermore, the wrist cuff device demonstrated similar sensitivity in measuring high blood pressure compared with the direct intra-arterial method. The device, when calibrated to direct aortic pressures, demonstrated the potential to reduce a treatment gap in high blood pressure measurements. CONCLUSIONS: The systolic pressure measurements of the wrist cuff have been iteratively calibrated using gold standard central (ascending aortic) pressure. This improves the accuracy of the indirect measures and potentially reduces the treatment gap. Devices that undergo auscultatory (indirect) calibration for licensing can be greatly improved by additional iterative calibration via intra-arterial (direct) measures of blood pressure. Further clinical trials with repeated use of the device over time are needed to assess the reliability of the device in accordance with current and evolving guidelines for informed decision making in the management of hypertension. TRIAL REGISTRATION: ClinicalTrials.gov NCT03015363; https://clinicaltrials.gov/ct2/show/NCT03015363 (Archived by WebCite at http://www.webcitation.org/6xPZgseYS).


Assuntos
Determinação da Pressão Arterial/instrumentação , Monitores de Pressão Arterial/normas , Pressão Sanguínea/fisiologia , Hipertensão/diagnóstico , Punho/irrigação sanguínea , Adulto , Idoso , Calibragem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes
13.
BMC Med Inform Decis Mak ; 18(1): 31, 2018 05 29.
Artigo em Inglês | MEDLINE | ID: mdl-29843767

RESUMO

BACKGROUND: It is essential that cancer patients understand anticipated symptoms, how to self-manage these symptoms, and when to call their clinicians. However, patients are often ill-prepared to manage symptoms at home. Clinical decision support (CDS) is a potentially innovative way to provide information to patients where and when they need it. The purpose of this project was to design and evaluate a simulated model of an algorithm-based CDS program for self-management of cancer symptoms. METHODS: This study consisted of three phases; development of computable algorithms for self-management of cancer symptoms using a modified ADAPTE process, evaluation of a simulated model of the CDS program, and identification of design objectives and lessons learned from the evaluation of patient-centered CDS. In phase 1, algorithms for pain, constipation and nausea/vomiting were developed by an expert panel. In phase 2, we conducted usability testing of a simulated symptom assessment and management intervention for self-care (SAMI-Self-Care) CDS program involving focus groups, interviews and surveys with cancer patients, their caregivers and clinicians. The Acceptability E-scale measured acceptability of the program. In phase 3, we developed design objectives and identified barriers to uptake of patient-centered CDS based on the data gathered from stakeholders. RESULTS: In phase 1, algorithms were reviewed and approved through a consensus meeting and majority vote. In phase 2, 24 patients & caregivers and 13 clinicians participated in the formative evaluation. Iterative changes were made in a simulated SAMI-Self-Care CDS program. Acceptability scores were high among patients, caregivers and clinicians. In phase 3, we formulated CDS design objectives, which included: 1) ensure patient safety, 2) communicate clinical concepts effectively, 3) promote communication with clinicians, 4) support patient activation, and 5) facilitate navigation and use. We identified patient barriers and clinician concerns to using CDS for symptom self-management, which were consistent with the chronic care model, a theoretical framework used to enhance patient-clinician communication and patient self-management. CONCLUSION: Patient safety and tool navigation were critical features of CDS for patient self-management. Insights gleaned from this study may be used to inform the development of CDS resources for symptom self-management in patients with other chronic conditions.


Assuntos
Algoritmos , Sistemas de Apoio a Decisões Clínicas , Neoplasias/terapia , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Autogestão/métodos , Adulto , Idoso , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
14.
Ann Oncol ; 28(9): 2305-2311, 2017 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-28911065

RESUMO

BACKGROUND: Significant adverse events (AE) during cancer therapy disrupt treatment and escalate to emergency admissions. Approaches to improve the timeliness and accuracy of AE reporting may improve safety and reduce health service costs. Reporting AE via patient reported outcomes (PROs), can improve clinician-patient communication and making data available to clinicians in 'real-time' using electronic PROs (ePROs) could potentially transform clinical practice by providing easily accessible records to guide treatment decisions. This manuscript describes the development of eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is a National Institute for Health Research-funded programme, a system for patients to self-report and manage AE online during and after cancer treatment. MATERIALS AND METHODS: A multidisciplinary team of IT experts, staff and patients developed using agile principles a secure web application interface (QStore) between an existing online questionnaire builder (QTool) displaying real-time ePRO data to clinicians in the electronic patient record at Leeds Teaching Hospitals NHS Trust. Hierarchical algorithms were developed corresponding to Common Terminology Criteria for Adverse Events grading using the QTool question dependency function. Patient advocates (N = 9), patients (N = 13), and staff (N = 19) usability tested the system reporting combinations of AE. RESULTS: The eRAPID system allows patients to report AE from home on PC, tablet or any web enabled device securely during treatment. The system generates immediate self-management advice for low or moderate AE and for severe AE advice to contact the hospital immediately. Clinicians can view patient AE data in the electronic patient record and receive email notifications when patients report severe AE. CONCLUSIONS: Evaluation of the system in a randomised controlled trial in breast, gynaecological and colorectal cancer patients undergoing systemic therapy is currently underway. To adapt eRAPID for different treatment groups, pilot studies are being undertaken with patients receiving pelvic radiotherapy and upper gastrointestinal surgery. ISRCTN88520246.


Assuntos
Sistemas de Notificação de Reações Adversas a Medicamentos , Antineoplásicos/efeitos adversos , Bases de Dados Factuais , Registros Eletrônicos de Saúde , Neoplasias/tratamento farmacológico , Autorrelato , Integração de Sistemas , Algoritmos , Humanos
15.
Value Health ; 19(4): 383-90, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27325330

RESUMO

BACKGROUND: Patient self-testing (PST) and/or patient self-management (PSM) might provide better coagulation care than monitoring at specialized anticoagulation centers. Yet, it remains an underused strategy in the Netherlands. METHODS: Budget-impact analyses of current and new market-share scenarios of PST and/or PSM compared with monitoring at specialized centers were performed for a national cohort of 260,338 patients requiring long-term anticoagulation testing. A health care payer perspective and 1- to 5-year time horizons were applied. The occurrence of thromboembolic and hemorrhagic complications in the aforementioned patient population was assessed in a Markov model. Dutch-specific costs were applied, next to effectiveness data derived from a meta-analysis on PST and/or PSM. Sensitivity and scenario analyses were performed to assess uncertainty on budget-impact analysis results. RESULTS: Increasing PST and/or PSM usage in the national cohort from the current 15.4% to 50% resulted in savings ranging from €8 million after the first year to €184 million after 5 years. Further increases in the use of PST and/or PSM produced greater savings. Sensitivity analyses revealed budget-impact model sensitivity to the baseline and relative risks of thromboembolic complications. Unfavorable budget impact was found in scenarios exploring an increase in the use of PST alone as well as an increase in the market share of PST and PSM in patients with atrial fibrillation. CONCLUSIONS: Overall study findings indicated that PST and PSM are more favorable alternatives to monitoring at specialized centers in patients without atrial fibrillation.


Assuntos
Anticoagulantes/uso terapêutico , Hemorragia/economia , Autocuidado , Tromboembolia/economia , Doenças Cardiovasculares/complicações , Doenças Cardiovasculares/tratamento farmacológico , Doenças Cardiovasculares/economia , Estudos de Coortes , Análise Custo-Benefício , Hemorragia/prevenção & controle , Humanos , Cadeias de Markov , Países Baixos/epidemiologia , Autocuidado/métodos , Autocuidado/estatística & dados numéricos , Tromboembolia/epidemiologia , Tromboembolia/prevenção & controle
16.
BMC Health Serv Res ; 16: 249, 2016 07 11.
Artigo em Inglês | MEDLINE | ID: mdl-27401836

RESUMO

BACKGROUND: Little is known about how to develop and deliver storytelling as an intervention to support those managing chronic illnesses. This scoping review aims to describe the core elements of storytelling interventions in order to help facilitate its implementation. METHODS: A scoping review was conducted in seven databases for articles published up to May 2014 to identify interventions that describe in detail how storytelling was used to support people in disease self-management interventions. RESULTS: Ten articles met all inclusion criteria. Core elements consistently observed across the storytelling interventions were: reflection and interactive meaning-making of experiences; principles of informality and spontaneity; non-directional and non-hierarchical facilitation; development of group norms and conduct to create a community among participants; and both an individual and collective role for participants. Differences were also observed across interventions, such as: the conceptual frameworks that directed the design of the intervention; the type and training of facilitators; intervention duration; and how session topics were selected and stories delivered. Furthermore, evaluation of the intervention and outcome assessment varied greatly across studies. CONCLUSION: The use of storytelling can be a novel intervention to enhance chronic disease self-management. The core elements identified in the review inform the development of the intervention to be more patient-centred by guiding participants to take ownership of and lead the intervention, which differs significantly from traditional support groups. Storytelling has the potential to provide patients with a more active role in their health care by identifying their specific needs as well as gaps in knowledge and skills, while allowing them to form strong bonds with peers who share similar disease-related experiences. However, measures of impact differed across interventions given the variation in chronic conditions. Our findings can guide future development and implementations of storytelling interventions.


Assuntos
Doença Crônica/terapia , Narração , Autocuidado , Grupos de Autoajuda , Comunicação , Humanos , Educação de Pacientes como Assunto/métodos , Grupo Associado
17.
J Med Internet Res ; 18(6): e123, 2016 06 03.
Artigo em Inglês | MEDLINE | ID: mdl-27260952

RESUMO

BACKGROUND: Health information exchanged between friends or family members can influence decision making, both for routine health questions and for serious health issues. A health information broker is a person to whom friends and family turn for advice or information on health-related topics. Characteristics and online behaviors of health information brokers have not previously been studied in a national population. OBJECTIVE: The objective of this study was to examine sociodemographic characteristics, health information seeking behaviors, and other online behaviors among health information brokers. METHODS: Data from the Health Information National Trends Survey (2013-2014; n=3142) were used to compare brokers with nonbrokers. Modified Poisson regression was used to examine the relationship between broker status and sociodemographics and online information seeking. RESULTS: Over half (54.8%) of the respondents were consulted by family or friends for advice or information on health topics (ie, they acted as health information brokers). Brokers represented 54.1% of respondents earning <$20,000 yearly and 56.5% of respondents born outside the United States. Women were more likely to be brokers (PR 1.34, 95% CI 1.23-1.47) as were those with education past high school (PR 1.42, CI 1.22-1.65). People aged ≥75 were less likely to be brokers as compared to respondents aged 35-49 (PR 0.81, CI 0.67-0.99). Brokers used the Internet more frequently for a variety of online behaviors such as seeking health information, creating and sharing online content, and downloading health information onto a mobile device; and also reported greater confidence in obtaining health information online. CONCLUSIONS: More than 50% of adults who responded to this national survey, including those with low income and those born abroad, were providing health information or advice to friends and family. These individuals may prove to be effective targets for initiatives supporting patient engagement and disease management, and may also be well-positioned within their respective social networks to propagate health messages.


Assuntos
Informação de Saúde ao Consumidor , Família , Amigos , Comportamento de Busca de Informação , Internet , Adolescente , Adulto , Fatores Etários , Idoso , Tomada de Decisões , Feminino , Humanos , Renda , Masculino , Pessoa de Meia-Idade , Grupo Associado , Fatores Sexuais , Rede Social , Inquéritos e Questionários , Estados Unidos , Adulto Jovem
18.
J Card Fail ; 21(6): 479-88, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25921522

RESUMO

BACKGROUND: Daily measurements of left atrial pressure (LAP) may be useful for guiding adjustments in medical therapy that prevent clinical decompensation in patients with severe heart failure (HF). STUDY DESIGN: LAPTOP-HF is a prospective, multicenter, randomized, controlled clinical trial in ambulatory patients with advanced heart failure in which the safety and clinical effectiveness of a physician-directed patient self-management therapeutic strategy based on LAP measured twice daily by means of an implantable sensor will be compared with a control group receiving optimal medical therapy. The trial will enroll up to 730 patients with New York Heart Association functional class III symptoms and either a hospitalization for HF during the previous 12 months or an elevated B-type natriuretic peptide level, regardless of ejection fraction, at up to 75 investigational centers. Randomization to the treatment group or control group will be at a 1:1 ratio in 3 strata based on the ejection fraction (EF > or ≤35%) and the presence of a de novo CRT device indication. SUMMARY: LAPTOP-HF will provide essential information about the role of implantable LAP monitoring in conjunction with a new HF treatment paradigm across the spectrum of HF patients.


Assuntos
Pressão Atrial , Fármacos Cardiovasculares/uso terapêutico , Insuficiência Cardíaca , Monitorização Ambulatorial , Autocuidado , Adulto , Cateterismo Cardíaco/métodos , Terapia de Ressincronização Cardíaca/métodos , Feminino , Átrios do Coração/fisiopatologia , Insuficiência Cardíaca/sangue , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/fisiopatologia , Insuficiência Cardíaca/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Ambulatorial/instrumentação , Monitorização Ambulatorial/métodos , Peptídeo Natriurético Encefálico/sangue , Avaliação de Resultados em Cuidados de Saúde , Estudos Prospectivos , Autocuidado/instrumentação , Autocuidado/métodos , Índice de Gravidade de Doença , Volume Sistólico
19.
Eur J Heart Fail ; 26(8): 1814-1823, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38899626

RESUMO

AIMS: Haemodynamic monitoring using implantable pressure sensors reduces the risk of heart failure (HF) hospitalizations. Patient self-management (PSM) of haemodynamics in HF has the potential to personalize treatment, increase adherence, and reduce the risk of worsening HF, while lowering clinicians' burden. METHODS AND RESULTS: The VECTOR-HF I and IIa studies are prospective, single-arm, open-label clinical trials assessing safety, usability and performance of left atrial pressure (LAP)-guided HF management using PSM in New York Heart Association class II and III HF patients. Physician-prescribed LAP thresholds trigger patient self-adjustment of diuretics. Primary endpoints include the ability to perform LAP measurements and transmit data to the healthcare provider (HCP) interface and the patient guidance application, and safety outcomes. This is an interim analysis of 13 patients using the PSM approach. Over 12 months, no procedure- or device-related major adverse cardiovascular or neurological events were observed, and there were no failures to obtain measurements from the sensor and transmit the data to the HCP interface and the patient guidance application. Patient adherence was 91.4%. Using PSM, annualized HF hospitalization rate significantly decreased compared to a similar period prior to PSM utilization (0 admissions vs. 0.69 admissions over 11.84 months, p = 0.004). At 6 months, 6-min walk test distance and the Kansas City Cardiomyopathy Questionnaire overall summary score demonstrated significant improvement. CONCLUSIONS: Interim findings suggest that PSM using a LAP monitoring system is feasible and safe. PSM is associated with high patient adherence, potentially improving HF patients' functional status, quality of life, and limiting HF hospitalizations.


Assuntos
Pressão Atrial , Insuficiência Cardíaca , Autogestão , Humanos , Insuficiência Cardíaca/terapia , Insuficiência Cardíaca/fisiopatologia , Masculino , Feminino , Idoso , Estudos Prospectivos , Autogestão/métodos , Pressão Atrial/fisiologia , Pessoa de Meia-Idade , Hospitalização/estatística & dados numéricos
20.
Res Involv Engagem ; 9(1): 23, 2023 Apr 13.
Artigo em Inglês | MEDLINE | ID: mdl-37046357

RESUMO

BACKGROUND: People living with heart failure (HF) are particularly vulnerable after hospital discharge. An alliance between patient authors, clinicians, industry, and co-developers of HF programs can represent an effective way to address the unique concerns and obstacles people living with HF face during this period. The aim of this narrative review article is to discuss challenges and opportunities of this approach, with the goal of improving participation and clinical outcomes of people living with HF. METHODS: This article was co-authored by people living with HF, heart transplant recipients, patient advocacy representatives, cardiologists with expertise in HF care, and industry representatives specializing in patient engagement and cardiovascular medicine, and reviews opportunities and challenges for people living with HF in the post-hospital discharge period to be more integrally involved in their care. A literature search was conducted, and the authors collaborated through two virtual roundtables and via email to develop the content for this review article. RESULTS: Numerous transitional-care programs exist to ease the transition from the hospital to the home and to provide needed education and support for people living with HF, to avoid rehospitalizations and other adverse outcomes. However, many programs have limitations and do not integrally involve patients in the design and co-development of the intervention. There are thus opportunities for improvement. This can enable patients to better care for themselves with less of the worry and fear that typically accompany the transition from the hospital. We discuss the importance of including people living with HF in the development of such programs and offer suggestions for strategies that can help achieve these goals. An underlying theme of the literature reviewed is that education and engagement of people living with HF after hospitalization are critical. However, while clinical trial evidence on existing approaches to transitions in HF care indicates numerous benefits, such approaches also have limitations. CONCLUSION: Numerous challenges continue to affect people living with HF in the post-hospital discharge period. Strategies that involve patients are needed, and should be encouraged, to optimally address these challenges.


Heart failure (HF) is a common, serious condition that causes debilitating symptoms. HF results in an enormous burden on individuals and society. For many people living with HF, the transition to the home after hospital discharge is filled with uncertainty, fear, miscommunication, feelings of vulnerability, loss of control, high rates of being hospitalized again, and the need for education about HF self-care. People living with HF need reliable support, personalized education, and encouragement to minimize disruption to their lives and to enable them to participate in and take ownership of their health. Interventions after hospitalization focused on self-care and education have been shown to improve confidence, medication adherence rates, quality of life, and self-care, and to reduce the risk of death or being hospitalized again. However, not all studies have found benefits. Many interventions do not include patients in their co-design and co-development, and/or co-authorship of the study publications. In this review article, we discuss challenges and opportunities for better involving people living with HF in self-care HF programs, both as co-creators and as participants. A literature search was conducted and the authors collaborated through email and two remote discussions to develop the article's content. We discuss the burden of HF and existing approaches to care after hospitalization. We also provide an overview of some of the challenges and opportunities in involving people living with HF more closely in their care. We conclude that patient-focused solutions aligned with behavioral approaches and education related to self-care may help overcome these challenges.

SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA