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Telemedicine in heart failure (HF) management may positively impact health outcomes, but varied effects in studies hinder guidance in HF guidelines. Evidence on the effectiveness of telemedicine in HF subpopulations is limited. We conducted a scoping review to evaluate and synthesise evidence on the effectiveness of telemedicine across HF subpopulations that could guide telemedicine strategies in routine practice. Meta-analyses concerning randomised controlled trials (RCTs) with subgroup analyses on telemedicine effectives were identified in PubMed. We identified 15 RCTs, encompassing 21 different subgroups based on characteristics of HF patients. Findings varied across studies and no definite evidence was found about which patients benefit most from telemedicine. Subgroup definitions were inconsistent, not always a priori defined and subgroups contained few patients. Some studies found heterogeneous effects of telemedicine on mortality and hospitalisation across subgroups defined by: New York Heart Association (NYHA) classification, previous HF decompensation, implantable device, concurrent depression, time since hospital discharge and duration of HF. Patients represented in the RCTs were mostly male, aged 65-75 years, with HF with reduced ejection fraction and NYHA class II/III. Traditional RCTs have not been able to provide clinicians with guidance; continuous real-world evidence generation could enhance monitoring and identify who benefits from telemedicine.
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Reducing inactivity in patients with chronic disease is vital since it can decrease the risk of disease progression and mortality. Exergames are an innovative approach to becoming more physically active and positively affecting physical health outcomes. Serious games are designed for purposes beyond entertainment and exergames are serious games for physical activity. However, current commercial exergames might not optimally meet the needs of patients with special needs. Developing tailored exergames is challenging and requires an appropriate process. The primary goal of this viewpoint is to describe significant lessons learned from designing and developing an exergame for patients with chronic heart failure using the player-centered, iterative, interdisciplinary, and integrated (P-III) framework for serious games. Four of the framework's pillars were used in the design and development of a mobile exergame: player-centered design, iterative development of the game, interdisciplinary teamwork, and integration of play and serious content. The mobile exergame was developed iteratively in 7 iterations by an interdisciplinary team involving users and stakeholders in all iterations. Stakeholders played various roles during the development process, making the team stay focused on the needs of the patients and creating an exergame that catered to these needs. Evaluations were conducted during each iteration by both the team and users or patients according to the player-centered design pillar. Since the exergame was created for a smartphone, the assessments were conducted both on the development computer and on the intended platforms. This required continuous deployment of the exergame to the platforms and smartphones that support augmented reality. Our findings show that the serious game P-III framework needs to be modified in order to be used for the design and development of exergames. In this viewpoint, we propose an updated version of the P-III framework for exergame development including (1) a separate and thorough design of the physical activity and physical interaction, and (2) early and continuous deployment of the exergame on the intended platform to enable evaluations and everyday life testing.
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Little is known either about either physical activity patterns, or other lifestyle-related prevention measures in heart transplantation (HTx) recipients. The history of HTx started more than 50 years ago but there are still no guidelines or position papers highlighting the features of prevention and rehabilitation after HTx. The aims of this scientific statement are (i) to explain the importance of prevention and rehabilitation after HTx, and (ii) to promote the factors (modifiable/non-modifiable) that should be addressed after HTx to improve patients' physical capacity, quality of life and survival. All HTx team members have their role to play in the care of these patients and multidisciplinary prevention and rehabilitation programmes designed for transplant recipients. HTx recipients are clearly not healthy disease-free subjects yet they also significantly differ from heart failure patients or those who are supported with mechanical circulatory support. Therefore, prevention and rehabilitation after HTx both need to be specifically tailored to this patient population and be multidisciplinary in nature. Prevention and rehabilitation programmes should be initiated early after HTx and continued during the entire post-transplant journey. This clinical consensus statement focuses on the importance and the characteristics of prevention and rehabilitation designed for HTx recipients.
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Insuficiência Cardíaca , Transplante de Coração , Qualidade de Vida , Humanos , Consenso , Europa (Continente) , Exercício Físico , Insuficiência Cardíaca/reabilitação , Insuficiência Cardíaca/cirurgia , Transplante de Coração/efeitos adversos , Sociedades MédicasRESUMO
AIM: To explore the perceptions of outpatients with hypertension regarding the conflicting results between their self-reported medication adherence and chemical adherence testing. METHODS AND RESULTS: An exploratory generic qualitative study design with semi-structured interviews was conducted. Thirteen adult patients being treated with antihypertensives were interviewed. Patients had a negative chemical adherence test for at least one prescribed antihypertensive, while they reported to adhere to their medication. Audio-recorded interviews were thematically analyzed. Six themes emerged: (1) becoming frustrated with medication intake, (2) being uncomfortable with addressing medication nonadherence, (3) feeling ashamed and angry about their nonadherence, (4) feeling falsely accused of nonadherence, (5) experiencing results as a wakeup call and (6) wanting to be heard and listened to. Participants reacted differently to the adherence test results. Two distinct groups were identified among the participants: the first group felt shameful, disappointed, and angry at themselves for being nonadherent; the second group felt falsely accused and rejected the adherence test results. No differences between both groups were found in their reasons for becoming frustrated with medication intake and their behavior after the adherence test results. Patients felt that communication with clinicians is key in the treatment support of patients with hypertension. CONCLUSIONS: Clinicians need to consider the reasons for nonadherence and the different responses of patients to the chemical adherence test results in their support to optimize treatment for patients with hypertension.
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PURPOSE OF REVIEW: To evaluate the feasibility of exergaming among older adults, focusing on acceptability, demand, implementation, and practicality. Additionally, to offer practical implications based on the review's findings. RECENT FINDINGS: Exergaming is a safe for older adults, potentially increasing physical activity, balance, cognition, and mood. Despite these possible benefits, barriers such as unfamiliarity with equipment, complex controls, and unclear instructions may challenge older adults in exergaming. Based on the experience of older adults, they found exergaming enjoyable, particularly the social interactions. Exergaming was perceived as physically and cognitively demanding, with technical and safety challenges. Introducing exergaming requires thorough familiarization, including written and video instructions, follow-up support, and home accessibility. To be able to follow improvements during exergaming as well as age-appropriate challenges are important for successful integration into daily life. Based on these findings, an ExerGameFlow model for older adults was developed which provides practical implications for future design of exergames and interventions.
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Exercício Físico , Estudos de Viabilidade , Jogos de Vídeo , Humanos , Exercício Físico/fisiologia , Idoso , Terapia por Exercício/métodosRESUMO
BACKGROUND: Thirst is the body's natural urge to replenish fluids in response to a deficiency in hydration. Patients at the end of life gradually lose their independence and reach a point where they become unable to express their needs and can no longer drink on their own. In palliative care, the main advice is to provide regular oral care to relieve symptoms such as dry mouth and thirst. However, according to previous studies the prevalence of thirst and dry mouth remains. AIM: The aim of this study was to describe palliative care, nurses' views and experiences of thirst in end-of-life care in specialist palliative care units. METHODS: A qualitative interview study with an inductive approach was conducted. Eighteen nurses working in six different specialist palliative care units in different hospitals in Sweden were interviewed. The interviews were transcribed and analysed with a content analysis approach according to Graneheim and Lundman. RESULTS: When nurses discuss thirst, they perceive thirst as a problem for the patient. This is attributable to various factors, including the patient breathing with an open mouth, a reduced level of awareness, and negligence on the part of the nursing staff. Signs of thirst are dry mouth, and frequently and intense sucking on the oral care stick during oral care. It also emerged that not all nurses perceived that dying patients experienced thirst. They believe that thirst is something that is reduced in the dying patient in the same way as hunger. The most important thing to them is to relieve the dry mouth by providing good oral care. Several issues, such as a lack of guidelines paired with the patient's reduced consciousness and hence his/her lack of communication, make assessing thirst problematic. CONCLUSION: Nurses have different thoughts and experiences about thirst, where some perceive patients as thirsty while others perceive them as having a dry mouth. Nurses expressed that both evidence and guidelines are lacking.
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AIM: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. RESEARCH DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. PARTICIPANTS AND RESEARCH CONTEXT: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. CONCLUSION: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process.
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Enfermeiras e Enfermeiros , Cuidados Paliativos , Pesquisa Qualitativa , Sede , Humanos , Feminino , Masculino , Suécia , Adulto , Cuidados Paliativos/métodos , Cuidados Paliativos/ética , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/psicologia , Atitude do Pessoal de Saúde , Assistência Terminal/métodos , Assistência Terminal/ética , Assistência Terminal/psicologia , Entrevistas como Assunto/métodosRESUMO
Right heart failure (RHF) following implantation of a left ventricular assist device (LVAD) is a common and potentially serious condition with a wide spectrum of clinical presentations with an unfavourable effect on patient outcomes. Clinical scores that predict the occurrence of right ventricular (RV) failure have included multiple clinical, biochemical, imaging and haemodynamic parameters. However, unless the right ventricle is overtly dysfunctional with end-organ involvement, prediction of RHF post-LVAD implantation is, in most cases, difficult and inaccurate. For these reasons optimization of RV function in every patient is a reasonable practice aiming at preparing the right ventricle for a new and challenging haemodynamic environment after LVAD implantation. To this end, the institution of diuretics, inotropes and even temporary mechanical circulatory support may improve RV function, thereby preparing it for a better adaptation post-LVAD implantation. Furthermore, meticulous management of patients during the perioperative and immediate postoperative period should facilitate identification of RV failure refractory to medication. When RHF occurs late during chronic LVAD support, this is associated with worse long-term outcomes. Careful monitoring of RV function and characterization of the origination deficit should therefore continue throughout the patient's entire follow-up. Despite the useful information provided by the echocardiogram with respect to RV function, right heart catheterization frequently offers additional support for the assessment and optimization of RV function in LVAD-supported patients. In any patient candidate for LVAD therapy, evaluation and treatment of RV function and failure should be assessed in a multidimensional and multidisciplinary manner.
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Little is known either about either physical activity patterns, or other lifestyle-related prevention measures in heart transplantation (HTx) recipients. The history of HTx started more than 50 years ago but there are still no guidelines or position papers highlighting the features of prevention and rehabilitation after HTx. The aims of this scientific statement are (i) to explain the importance of prevention and rehabilitation after HTx, and (ii) to promote the factors (modifiable/non-modifiable) that should be addressed after HTx to improve patients' physical capacity, quality of life and survival. All HTx team members have their role to play in the care of these patients and multidisciplinary prevention and rehabilitation programmes designed for transplant recipients. HTx recipients are clearly not healthy disease-free subjects yet they also significantly differ from heart failure patients or those who are supported with mechanical circulatory support. Therefore, prevention and rehabilitation after HTx both need to be specifically tailored to this patient population and be multidisciplinary in nature. Prevention and rehabilitation programmes should be initiated early after HTx and continued during the entire post-transplant journey. This clinical consensus.
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AIM: To optimize support by healthcare professionals to enhance physical activity, HF-related symptom monitoring and management in patients with heart failure before and after cardiac resynchronization therapy (CRT) implantation in co-creation with patients, informal caregivers, and healthcare professionals. METHODS AND RESULTS: A qualitative and co-design approach was used to develop support strategies collaboratively with end-users. Seventeen semi-structured interviews were conducted to explore patients' expectations and factors influencing physical activity and symptom management. The qualitatively obtained insights informed the development of support strategies using an ideas group with patients, informal caregivers, and healthcare professionals.Four themes emerged from the interviews: 1. Expecting and hoping to regain energy and fitness; 2. Difficulties and opportunities to become more active; 3. Impact of CRT on sense of safety; and 4. Dealing with continuing bothersome symptoms. Several strategies were brainstormed, prioritized and prototyped, including optimization of CRT information, a peer contact list, expansion of the post-CRT implantation consultation to ask questions and share concerns, and a group meeting with peer patients, partners, and healthcare professionals. CONCLUSION: Patients expected and hoped to have positive effects from CRT, but not all patients experienced improvement after CRT. To improve patients' physical activity, feelings of insecurity, symptom monitoring, and thoughtful response to symptoms, support must include providing information and support to increase their knowledge and discuss experiences and physical and mental concerns.
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Little is known either about either physical activity patterns, or other lifestyle-related prevention measures in heart transplantation (HTx) recipients. The history of HTx started more than 50 years ago but there are still no guidelines or position papers highlighting the features of prevention and rehabilitation after HTx. The aims of this scientific statement are (i) to explain the importance of prevention and rehabilitation after HTx, and (ii) to promote the factors (modifiable/non-modifiable) that should be addressed after HTx to improve patients' physical capacity, quality of life and survival. All HTx team members have their role to play in the care of these patients and multidisciplinary prevention and rehabilitation programmes designed for transplant recipients. HTx recipients are clearly not healthy disease-free subjects yet they also significantly differ from heart failure patients or those who are supported with mechanical circulatory support. Therefore, prevention and rehabilitation after HTx both need to be specifically tailored to this patient population and be multidisciplinary in nature. Prevention and rehabilitation programmes should be initiated early after HTx and continued during the entire post-transplant journey. This clinical consensus statement focuses on the importance and the characteristics of prevention and rehabilitation designed for HTx recipients.
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Introduction: Few studies explored healthcare needs of elderly heart failure (HF) patients with comorbidities in view of a personalized intervention conducted by Care Managers (CM) in the framework of Blended Collaborative Care (BCC). The aims of the present study were to: (1) identify perceived healthcare needs/preferences in elderly patients with HF prior to a CM intervention; (2) investigate possible associations between healthcare needs/preferences, sociodemographic variables (age; sex) and number of comorbidities. Method: Patients aged 65 years or more affected by HF with at least 2 medical comorbidities were enrolled in the study. They were assessed by structured interviewing with colored cue cards that represented six main topics including education, individual tailoring of treatment, monitoring, support, coordination, and communication, related to healthcare needs and preferences. Results: Thirty-three patients (Italy = 21, Denmark = 7, Germany = 5; mean age = 75.2 ± 7.7 years; males 63.6%) were enrolled from June 2021 to February 2022. Major identified needs included: HF information (education), patients' involvement in treatment-related management (individual tailoring of treatment), regular checks of HF symptoms (monitoring), general practitioner update by a CM about progression of symptoms and health behaviors (coordination), and telephone contacts with the CM (communication). Regarding communication modalities with a CM, males preferred phone calls (χ2 = 6.291, p = 0.043) and mobile messaging services (χ2 = 9.647, p = 0.008), whereas females preferred in-person meetings and a patient dashboard. No differences in needs and preferences according to age and number of comorbidities were found. Discussion: The findings highlight specific healthcare needs and preferences in older HF multimorbid patients, allowing a more personalized intervention delivered by CM in the framework of BCC.
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Heart failure is a commonly encountered clinical syndrome arising from a range of etiologic cardiovascular diseases and manifests in a phenotypic spectrum of varying degrees of systolic and diastolic ventricular dysfunction. Those affected by this life-limiting illness are subject to an array of burdensome symptoms, poor quality of life, prognostic uncertainty, and a relatively onerous and increasingly complex treatment regimen. This condition occurs in epidemic proportions worldwide, and given the demographic trend in societal ageing, the prevalence of heart failure is only likely to increase. The marked upturn in international migration has generated other demographic changes in recent years, and it is evident that we are living and working in ever more ethnically and culturally diverse communities. Professionals treating those with heart failure are now dealing with a much more culturally disparate clinical cohort. Given that the heart failure disease trajectory is unique to each individual, these clinicians need to ensure that their proposed treatment options and responses to the inevitable crises intrinsic to this condition are in keeping with the culturally determined values, preferences, and worldviews of these patients and their families. In this narrative review, we describe the importance of cultural awareness across a range of themes relevant to heart failure management and emphasize the centrality of cultural competence as the basis of appropriate care provision.
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Cardiopatias , Insuficiência Cardíaca , Humanos , Qualidade de Vida , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/terapiaRESUMO
Prevention and diagnosis of frailty syndrome (FS) in patients with heart failure (HF) require innovative systems to help medical personnel tailor and optimize their treatment and care. Traditional methods of diagnosing FS in patients could be more satisfactory. Healthcare personnel in clinical settings use a combination of tests and self-reporting to diagnose patients and those at risk of frailty, which is time-consuming and costly. Modern medicine uses artificial intelligence (AI) to study the physical and psychosocial domains of frailty in cardiac patients with HF. This paper aims to present the potential of using the AI approach, emphasizing machine learning (ML) in predicting frailty in patients with HF. Our team reviewed the literature on ML applications for FS and reviewed frailty measurements applied to modern clinical practice. Our approach analysis resulted in recommendations of ML algorithms for predicting frailty in patients. We also present the exemplary application of ML for FS in patients with HF based on the Tilburg Frailty Indicator (TFI) questionnaire, taking into account psychosocial variables.
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Fragilidade , Insuficiência Cardíaca , Humanos , Idoso , Fragilidade/diagnóstico , Fragilidade/psicologia , Idoso Fragilizado/psicologia , Inteligência Artificial , Aprendizado de MáquinaRESUMO
BACKGROUND: International studies have examined patients' views concerning the discussion of deactivating an implantable cardioverter defibrillator (ICD). Findings reported that many patients were either not informed about the subject or were informed late in their illness trajectory. AIM: To explore healthcare professionals' perspectives on discussing ICD deactivation and identify priorities for clinical practice and future research. METHODS: Eleven interviews were conducted, involving heart failure nurses, physicians, and an allied professional. All were responsible for the care of patients with an ICD, from the United Kingdom or Sweden. A semi-structured guide was used. All interviews were audio-recorded, transcribed, translated (as applicable) and analysed independently by experienced researchers, using framework analysis. Findings were presented, along with published work at a stakeholder meeting, and a consensus agreement was reached on priorities for clinical practice and future research. FINDINGS: Four themes emerged from the exploratory interviews. Healthcare professionals described the discussion about deactivation as challenging, requiring compassion and involvement of family members. They agreed that the topic should be initiated prior to, or shortly after device implantation. This was reflected in the priorities to improve communication, through the increased availability and implementation of prompts and tools, as well as the provision of tailored information to patients and family members. Stakeholders recognised the future potential of digital technology in device education. CONCLUSIONS: Discussing deactivation remains challenging. Healthcare professionals recognised the need to initiate the discussion early, with compassion and involvement of family members. Priorities were agreed by stakeholders, which require clinical implementation and further research.
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OBJECTIVE: Insights into how symptoms influence self-care can guide patient education and improve symptom control. This study examined symptom characteristics, causal attributions, and contextual factors influencing self-care of adults with arthritis, asthma, chronic obstructive pulmonary disease, diabetes, or heart failure. METHODS: Adults (n = 81) with a symptomatic chronic illness participated in a longitudinal observational study. Using Ecological Daily Assessment, participants described one symptom twice daily for two weeks, rating its frequency, severity, bothersomeness, duration, causes, and self-care. RESULTS: The most frequent symptoms were fatigue and shortness of breath. Pain, fatigue, and joint stiffness were the most severe and bothersome. Most participants engaged in active self-care, but those with fatigue and pain engaged in passive self-care (i.e., rest or do nothing), especially when symptoms were infrequent, mild, somewhat bothersome, and fleeting. In people using passive self-care, thoughts, feelings, and the desire to conceal symptoms from others interfered with self-care. CONCLUSION: Most adults with a chronic illness take an active role in managing their symptoms but some conceal or ignore symptoms until the frequency, severity, bothersomeness, or duration increases. PRACTICE IMPLICATIONS: When patients report symptoms, asking about self-care behaviors may reveal inaction or ineffective approaches. A discussion of active self-care options may improve symptom control.
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Asma , Doença Pulmonar Obstrutiva Crônica , Adulto , Humanos , Autocuidado , Asma/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Dor/complicações , FadigaRESUMO
AIM: To explore healthcare workers' experiences of the changed caring reality during the COVID-19 pandemic in Sweden. DESIGN: An online fully mixed-methods design. METHODS: A web-based self-reported questionnaire with fixed and open-ended answers collected data from March to April 2021, analysed in three steps. First, free-text questions were analysed by qualitative content analysis. Then quantitative linear regression analyses using models covering stress and coping mechanisms were conducted. Finally, a meta-inference of qualitative and quantitative data emerged a new comprehensive understanding. The COREQ guidelines were used for reporting. RESULTS: Meta-inferenced results of quantitative and qualitative findings show the pandemic was a traumatic experience for healthcare workers. Main theme; When work became a frightening experience in a dehumanized reality, comprised four themes: Entering unprepared into a frightful, incomprehensible world; Sacrificing moral values and harbouring dilemmas in isolation; Lack of clear management; and Reorient in togetherness and find meaning in a changed reality. Qualitative results comprised four categories; Working in a dehumanized world; Living in betrayal of ones' own conscience; Lack of structure in a chaotic time and Regaining vitality together. Subdimensions comprehensibility and meaningfulness were associated significantly with post-traumatic stress disorder in multiple regression analysis. In multiple regression analysis, sense of coherence was the most prominent coping strategy. CONCLUSIONS: Forcing oneself to perform beyond one's limit, sacrificing moral values and lacking management was a traumatic experience to healthcare workers during the pandemic. Reorienting as a way of coping was possible in togetherness with colleagues. There is an urgency of interventions to meet the needs among healthcare workers who took on a frontline role during the COVID-19 pandemic and to prevent mental health illness in future crisis. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. SUMMARY: The pandemic outbreak exposed frontline healthcare workers to unparallelled stress shown as negative for their mental health in several meta-analyses and systematic reviews. In-depth understanding on experiences and how symptoms of post-traumatic stress disorder relate to coping mechanisms have been scarcely explored. This study contributes to understanding on healthcare workers' experiences and the relation between lower sense of coherence and increased risk of developing symptoms of post-traumatic stress disorder. IMPLICATIONS FOR PRACTICE/POLICY: This study might guide how to prepare for resilience in future emergencies.
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BACKGROUND: Physical inactivity and a sedentary lifestyle are common among people with heart failure (HF), which may lead to worse prognosis. On an already existing mHealth platform, we developed a novel tool called the Activity coach, aimed at increasing physical activity. The aim of this study was to evaluate the usability of the Activity coach and assess feasibility of outcome measures for a future efficacy trial. METHODS: A mixed-methods design was used to collect data. People with a HF diagnosis were recruited to use the Activity coach for four weeks. The Activity coach educates the user about physical activity, provides means of registering daily physical activity and helps the user to set goals for the next week. The usability was assessed by analysing system user logs for adherence, reported technical issues and by interviews about user experiences. Outcome measures assessed for feasibility were objective physical activity as measured by an accelerometer, and subjective goal attainment. Progression criteria for the usability assessment and for the proposed outcomes, were described prospectively. RESULTS: Ten people with HF were recruited, aged 56 to 78 with median age 72. Data from nine of the ten study participants were included in the analyses. Usability: The Activity coach was used 61% of the time and during the first week two study participants called to seek technical support. The Activity coach was found to be intuitive and easy to use by all study participants. An increased motivation to be more physically active was reported by six of the nine study participants. However, in spite of feeling motivated, four reported that their habits or behaviours had not been affected by the Activity coach. FEASIBILITY: Data was successfully stored in the deployed hardware as intended and the accelerometers were used enough, for the data to be analysable. One finding was that the subjective outcome goal attainment, was challenging to collect. A proposed mitigator for this is to use pre-defined goals in future studies, as opposed to having the study participants be completely free to formulate the goals themselves. CONCLUSIONS: It was confirmed that the Activity coach was easy to use. Furthermore, it might stimulate increased physical activity in a population of people with HF, who are physically inactive. The outcomes investigated seem feasible to include in a future efficacy trial. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05235763. Date of first registration: 11/02/2022.
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Insuficiência Cardíaca , Telemedicina , Humanos , Idoso , Estudos de Viabilidade , Interface Usuário-Computador , Exercício Físico , Insuficiência Cardíaca/terapia , Telemedicina/métodosRESUMO
AIM: To explore self-care and needs and preferences towards tailored self-care support of patients with rheumatoid arthritis at the outpatient clinic. DESIGN: A sequential explanatory mixed method design. METHODS: The Self-Care of Chronic Illness Inventory questionnaire, two focus groups and six semi-structured interviews were conducted between November 2021 and April 2023. Questionnaires of 107 patients were descriptively analysed. Subsequently, 11 patients and 2 healthcare professionals participated in the focus groups and 6 patients in the interviews, which were thematically analysed. RESULTS: Quantitative and qualitative data corresponded and showed that patients perform various self-care activities at an adequate level and have strategies to exert control and reduce symptoms. One key theme emerged: 'Not only being the person with rheumatoid arthritis' (RA) as patients primarily aim to get on with their lives. Nine subthemes covered self-care activities for maintaining health including staying physically active, finding the right medication and dose and adapting their diet. Patients differed in how they self-monitored their symptoms. Recognizing symptoms and finding strategies to manage symptoms included the process of body listening in which patient seek and try different strategies to find what works for them and incorporate routines. Patients experienced positive effects of a warm or cold environment. Patients felt the need for practical and emotional support from others and preferred having credible information. CONCLUSION: Patients perform adequate self-care including a diversity of self-care activities to get on with their lives and have strategies to reduce and control the symptoms and impact of RA. IMPLICATIONS: Tailoring self-care support to patients' individual needs and preferences is necessary to help patients cope with the erratic nature of the disease and maintain their quality of life. Healthcare providers need to provide practical and emotional support and use credible information to allow patients to make self-care decisions to manage their lives. REPORTING METHODS: Quantitative finding are reported according to the STROBE guidelines and qualitative finding are reported according to the COREQ guidelines. WHAT DOES THIS PAPER ADD: Patients perform various self-care activities at an adequate level and have strategies to exert control and reduce symptoms. Patients primarily aim to continue their lives and not being seen as the person with rheumatoid arthritis. Healthcare professionals need to provide practical and emotional support and use credible information to inform patients' self-care decision-making. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.