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Nurses specializing in the care of patients with multiple sclerosis (MS) are uniquely positioned to provide personalized care. Patients prescribed cladribine tablets (taken for <=10 days per year for 2 years), indicated for adults with highly active relapsing MS in the EU and Australia, can benefit from an active partnership with their healthcare professionals, including MS nurses, who can promote an understanding of and the adherence to treatment. In clinical studies, patients treated with cladribine tablets had lower annual relapse rates, greater odds of being relapse free, a longer time to sustained progression of disability and a significant reduction in radiological disease activity compared with patients receiving placebo. Patients should be advised that, although everyone will have a different experience, the safety of cladribine tablets is supported by 16 years of clinical trial and post-approval data. Furthermore, there is no indication of a more serious disease course or more severe outcomes for patients with MS treated with cladribine tablets who acquire coronavirus disease 2019 compared with the general population or other patients with MS. This article presents practical considerations that may help achieve a greater understanding of the potential benefits and drawbacks of MS treatment, build the patient-nurse relationship, encourage shared decision-making and ultimately may improve careCopyright © Touch Medical Media 2022
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Older adults living in long term care (LTC) facilities may experience increased isolation and loneliness. This was compounded with the Coronavirus Disease 2019 (COVID-19) pandemic. Loneliness and isolation increase the risk for physical, psychological, and social decline. This case report discusses the effect of a letter writing initiative on feelings of loneliness and connection in a long-term care resident. Personalized care is the standard in the long-term care setting and letter writing between two people can contribute to personalized meaningful care as evidenced by the example provided. Further research is needed to explore social connection and loneliness and methods to combat these issues with a personalized approach for different populations within LTC facilities.
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Technology plays an important role into the life of older people. With the increase of age, they are experiencing physical and cognitive frailties and they require assistance for the management of their daily activities. In this sense, digital technologies could offer a holistic ecosystem which could empower their daily life 24 h decreasing the caregiver burden. Multi-domains researchers are joining their efforts to propose a selection of services. In this context, this paper introduces the large scale pilot Pharaon project, pointing out the attention on the Italian pilot site. Within the Italian pilot, a personalized and integrated care service was and will be investigated in the forthcoming years to meet the challenge of older population. Particularly, the paper introduces the methodology and the actions performed to face the covid-19 pandemic which affect the first stage of the process, the service domains, and the methodology applied. Additionally, the paper presents and discusses the key performance indicators related to impact, business, social and clinical domains and how the technology is used within the Italian pilot to support the population during the pandemic emergency. © 2022, The Author(s), under exclusive license to Springer Nature Switzerland AG.
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BACKGROUND: There is an increasing need to organize the care around the patient and not the disease, while considering the complex realities of multiple physical and psychosocial conditions, and polypharmacy. Integrated patient-centered care delivery platforms have been developed for both patients and clinicians. These platforms could provide a promising way to achieve a collaborative environment that improves the provision of integrated care for patients via enhanced information and communication technology solutions for semiautomated clinical decision support. OBJECTIVE: The Collaborative Care and Cure Cloud project (C3-Cloud) has developed 2 collaborative computer platforms for patients and members of the multidisciplinary team (MDT) and deployed these in 3 different European settings. The objective of this study is to pilot test the platforms and evaluate their impact on patients with 2 or more chronic conditions (diabetes mellitus type 2, heart failure, kidney failure, depression), their informal caregivers, health care professionals, and, to some extent, health care systems. METHODS: This paper describes the protocol for conducting an evaluation of user experience, acceptability, and usefulness of the platforms. For this, 2 "testing and evaluation" phases have been defined, involving multiple qualitative methods (focus groups and surveys) and advanced impact modeling (predictive modeling and cost-benefit analysis). Patients and health care professionals were identified and recruited from 3 partnering regions in Spain, Sweden, and the United Kingdom via electronic health record screening. RESULTS: The technology trial in this 4-year funded project (2016-2020) concluded in April 2020. The pilot technology trial for evaluation phases 3 and 4 was launched in November 2019 and carried out until April 2020. Data collection for these phases is completed with promising results on platform acceptance and socioeconomic impact. We believe that the phased, iterative approach taken is useful as it involves relevant stakeholders at crucial stages in the platform development and allows for a sound user acceptance assessment of the final product. CONCLUSIONS: Patients with multiple chronic conditions often experience shortcomings in the care they receive. It is hoped that personalized care plan platforms for patients and collaboration platforms for members of MDTs can help tackle the specific challenges of clinical guideline reconciliation for patients with multimorbidity and improve the management of polypharmacy. The initial evaluative phases have indicated promising results of platform usability. Results of phases 3 and 4 were methodologically useful, yet limited due to the COVID-19 pandemic. TRIAL REGISTRATION: ClinicalTrials.gov NCT03834207; https://clinicaltrials.gov/ct2/show/NCT03834207. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/21994.
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BACKGROUND: Exergames are increasingly being used among survivors of stroke with chronic upper extremity (UE) sequelae to continue exercising at home after discharge and maintain activity levels. The use of virtual reality exergames combined with a telerehabilitation app (VirTele) may be an interesting alternative to rehabilitate the UE sequelae in survivors of chronic stroke while allowing for ongoing monitoring with a clinician. OBJECTIVE: This study aimed to determine the feasibility of using VirTele in survivors of chronic stroke at home and explore the impact of VirTele on UE motor function, quantity and quality of use, quality of life, and motivation in survivors of chronic stroke compared with conventional therapy. METHODS: This study was a 2-arm feasibility clinical trial. Eligible participants were randomly allocated to an experimental group (receiving VirTele for 8 weeks) or a control group (receiving conventional therapy for 8 weeks). Feasibility was measured from the exergame and intervention logs completed by the clinician. Outcome measurements included the Fugl-Meyer Assessment-UE, Motor Activity Log-30, Stroke Impact Scale-16, and Treatment Self-Regulation Questionnaire-15, which were administered to both groups at four time points: time point 1 (T1; before starting the intervention), time point 2 (after the intervention), time point 3 (1 month after the intervention), and time point 4 (T4; 2 months after the intervention). RESULTS: A total of 11 survivors of stroke were randomized and allocated to an experimental or a control group. At the onset of the COVID-19 pandemic, participants pursued the allocated treatment for 3 months instead of 8 weeks. VirTele intervention dose was captured in terms of time spent on exergames, frequency of use of exergames, total number of successful repetitions, and frequency of videoconference sessions. Technical issues included the loss of passwords, internet issues, updates of the system, and problems with the avatar. Overall, most survivors of stroke found the technology easy to use and useful, except for 9% (1/11) of participants. For the Fugl-Meyer Assessment-UE and Motor Activity Log-30, both groups exhibited an improvement in >50% of the participants, which was maintained over time (from time point 3 to T4). Regarding Stroke Impact Scale-16 scores, the control group reported improvement in activities of daily life (3/5, 60%), hand function (5/5, 100%), and mobility (2/5, 40%), whereas the experimental group reported varied and inconclusive results (from T1 to T4). For the Treatment Self-Regulation Questionnaire-15, 75% (3/4) of the experimental group demonstrated an increase in the autonomous motivation score (from T1 to time point 2), whereas, in the control group, this improvement was observed in only 9% (1/11) of participants. CONCLUSIONS: The VirTele intervention constitutes another therapeutic alternative, in addition to conventional therapy, to deliver an intense personalized rehabilitation program for survivors of chronic stroke with UE sequelae. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14629.
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BACKGROUND: Wearable tracking devices and mobile health technology are increasingly used in an effort to enhance clinical care and the delivery of personalized medical treatment. Postpartum depression is the most frequently diagnosed complication of childbirth; however, significant gaps in screening and treatment remain. OBJECTIVE: This study aims to investigate the clinical utility, predictive ability, and acceptability of using ecological momentary assessment to collect daily mood, sleep, and activity data through the use of an Apple Watch and mobile app among women with postpartum depression. METHODS: This was a pilot study consisting of 3 in-person research visits over the course of a 6-week enrollment period. Questionnaires to assess depression, anxiety, and maternal functioning were periodically collected, along with daily self-reported symptoms and passively collected physiological data via an Apple Watch. Feedback was collected from study participants and the study clinician to determine the utility and acceptability of daily tracking. Logistic regression was used to determine whether mood scores in the 2 weeks before a visit predicted scores at follow-up. Compliance with daily assessments was also measured. RESULTS: Of the 26 women enrolled, 23 (88%) completed the 6-week study period. On average, the participants completed 67% (34.4/51.5 days) of all active daily assessments and 74% (38/51.5 days) of all passive measures. Furthermore, all 23 participants completed the 3 required visits with the research team. Predictive correlations were found between self-reported mood and Edinburgh Postnatal Depression Scale score at follow-up, self-reported anxiety and EDPS, and sleep quality and Edinburgh Postnatal Depression Scale. CONCLUSIONS: Using ecological momentary assessment to track daily symptoms of postpartum depression using a wearable device was largely endorsed as acceptable and clinically useful by participants and the study clinician and could be an innovative solution to increase care access during the COVID-19 pandemic.
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For persons with Parkinson's disease, the loss of autonomy in daily life leads to a high level of dependency on relatives' support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson's to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.
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The COVID-19 pandemic has had a severe impact on nursing care. This cross-sectional survey-based study compared aspects of nursing care and nurses' satisfaction with care provided before and during the first wave of the COVID-19 pandemic. A total of 936 registered nurses (RNs) rated the frequency with which they performed fundamental care, nursing techniques, patient education, symptom management, and nurse-patient relationships before and during the pandemic. A recursive partitioning for ordered multivariate response in a conditional inference framework approach was applied. More frequent fundamental cares were associated with their frequency before the pandemic (p < 0.001), caring for COVID-19 patients (p < 0.001), and workplace reassignment (p = 0.004). Caring for COVID-19 patients (p < 0.001), workplace reassignment (p = 0.030), and caring for ≤7.4 COVID-19 patients (p = 0.014) increased nursing techniques. RNs in high-intensity COVID-19 units (p = 0.002) who educated patients before the pandemic, stopped this task. RNs caring for COVID-19 patients reported increased symptom management (p < 0.001), as did RNs caring for more non-COVID-19 patients (p = 0.037). Less frequent nurse-patient relationships before the pandemic and working in high-intensity COVID-19 units decreased nurse-patient relationships (p = 0.002). Despite enormous challenges, nurses continued to provide a high level of care. Ensuring the appropriate deployment and education of nurses is crucial to personalize care and to maintain nurses' satisfaction with the care provided.
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Introduction: Brain health is neglected in public health, receiving attention after something goes wrong. Neuroplasticity research illustrates that preventive steps strengthen the brain's component systems; however, this information is not widely known. Actionable steps are needed to scale proven population-level interventions. Objectives: This pilot tested two main objectives: (1) the feasibility/ease of use of an online platform to measure brain health, deliver training, and offer virtual coaching to healthy adults and (2) to develop a data driven index of brain health. Methods: 180 participants, ages 18-87, enrolled in this 12-week pilot. Participants took a BrainHealth Index™ (BHI), a composite of assessments encompassing cognition, well-being, daily-life and social, pre-post training. Participants engaged in online training with three coaching sessions. We assessed changes in BHI, effects of training utilization and demographics, contributions of sub-domain measures to the BHI and development of a factor analytic structure of latent BrainHealth constructs. Results: The results indicated that 75% of participants showed at least a 5-point gain on their BHI which did not depend on age, education, or gender. The contribution to these gains were from all sub-domains, including stress, anxiety and resilience, even though training focused largely on cognition. Some individuals improved due to increased resilience and decreased anxiety, whereas others improved due to increased innovation and social engagement. Larger gains depended on module utilization, especially strategy training. An exploratory factor analytic solution to the correlation matrix of online assessments identified three latent constructs. Discussion/Conclusion: This pilot study demonstrated the efficacy of an online platform to assess changes on a composite BrainHealth Index and efficacy in delivering training modules and coaching. We found that adults, college age to late life, were motivated to learn about their brain and engage in virtual-training with coaching to improve their brain health. This effort intends to scale up to thousands, thus the pilot data, tested by an impending imaging pilot, will be utilized in ongoing machine learning (ML) algorithms to develop a precision brain health model. This pilot is a first step in scaling evidence-based brain health protocols to reach individuals and positively affect public health globally.