A mHealth patient passport for adult Cystic Fibrosis patients

Life expectancy for some Cystic Fibrosis (CF) patients is rising and new complications and procedures are predicted. Subsequently there is need for education and management interventions that can benefit CF adults. This paper proposes a CF patient passport to record basic medical information through a smartphone application (app), giving the patient access to their own data. It is anticipated that such an app will be beneficial to patients when travelling abroad and between CF centres. This app is designed by a CF multidisciplinary team to be a lightweight reflection of a current patient file. The passport app is created using PhoneGap so that is can be deployed for both Android and iOS devices. The app is introduced to seven participants as part of a stress test. The app is found to be usable and accessible. The app is now being prepared for a pilot study with adult CF patients

The influence of patients' education on quality of life, exercise capacity and clinical conditition in chronic heart failure

Aim of the work: to evaluate influence of education on quality of life, exercise capacity and clinical status in patients suffering from chronic heart failure. Tasks of the work: to create educational heart failure programme for the patients. To evaluate the influence of education on changes of quality of life in patients suffering from chronic heart failure. To evaluate the influence of education on changes of B-type natriuretic peptide levels (functional status) in patients suffering from chronic heart failure. Study population: Patients suffering from chronic heart failure in stabile condition (functional NYHA class II – III), consulted at Vilnius University Santariškių Clinic Out – patient Department of Cardiology who had been receiving optimal treatment. Methods: The following data were evaluated before tuition and 2 months thereafter: 1. Quality of life (QoL) in accordance with standardized Minnesota questionnaire “Life With Heart Failure” (generali [QoLEI], physical, reflecting emotional QoLEI aspects). 2. Exercise capacity by means of spiroergometry: VO2peak ml/kg/min, VO2peak l/min, AT VO2 ml/kg/min, AT VO2 ml/kg/min, AT VO2 l/min and percentage value of this parameters workload (W), exercise duration in minutes, MET, NYHA, heart rate during anaerobic threshold, peak heart rate, VE/CO2, VE/VO2. Workload intensity was expressed in MET in order to determine NYHA functional class more objectively. 3. Clinical condition in accordance with B-type natriuretic peptide blood level. The date were processed using SPSS 13.0 software version for Windows. The level of significance was fixed and considered to be equal to 0.05; two sided p values were presented in all cases. Results: 1. The mean index of evaluation of quality of life (QoLEI) was 49.39 + 17.86 prior the tuition. Mean QoLEI of physical and emotional aspects were 21.7 + 7.15 and 9.35 + 5.48, respectively. QoLEI decreased up to 37.9 + 18.78 (p < 0.001); QoL corresponding physical and emotional aspects had decreased to17.74 + 7.09 (p < 0.001) and 7.74 + 5.31 (p < 0.001), respectively. 2. Peak VO2 ml/kg/min 2 months after tuition had significantly increased (16.25 + 3.69 vs. 19.26 + 7.22; p = 0.013). The positive changes in AT VO2 ml/kg/min were demonstrated 2 months after the tuition (11.197 + 2.47 vs. 12.694 + 3.28; p = 0.003). The indices reflecting external load had increased significantly: workload (W) 19.26 + 37.10 vs. 104.29 + 40.03; p = 0.001; duration of the exercise 7.28 + 2.59 vs. 8.32 + 2.95; p = 0.007; MET 4.65 + 1.05 vs. 5.20 + 1.27; p = 0.001). The ratio of patients in various NYHA functional classes prior the tuition and 2 months thereafter had also changed: NYHA I – 0/1; NYHA II – 10/19; NYHA III – 21/11. 3. The investigation demonstrated that the blood level of B-type natriuretic peptide (the index of clinical condition) had decreased significantly 2 months after the tuition (348.41 + 471.99 vs. 224 + 340.36; p = 0.023). Conclusions: The quality of life of the patients had improved significantly after the tuition. The tuition has reliable positive influence on exercise capacity. The oxygen volume taken from inspired air during peak exercise had increased significantly as well as oxygen volume taken from inspired air during anaerobic threshold, workload, duration of the exercise, metabolic oxygen consumption units. The heart rate during peak exercise, heart rate during anaerobic threshold and respiratory carbon dioxide coefficient had underwent positive changes. There is a positive relationship between tuition and functional NYHA class. The education had improved clinical condition of the patients suffering from heart failure. The blood levels of natriuretic peptide had decreased significantly after the tuition

Informal Caregivers Experiences with Performing Telemonitoring in Heart Failure Care at Home-A Qualitative Study

Informal caregivers have an important role in caring for family members at home. Supporting persons with a chronic illness such as heart failure (HF) in managing their self-care is reported to be a challenge and telemonitoring has been suggested to be of support. Aim: to explore informal caregivers experiences with performing non-invasive telemonitoring to support persons with HF at home for 30 days following hospital discharge in Norway and Lithuania. Methods: A qualitative explorative study of informal caregivers performing non-invasive telemonitoring using lung-impedance measurements and short message service (SMS). Data was collected using semi-structured interviews with informal caregivers of persons with HF in NYHA class III-IV in Norway and Lithuania. Results: Nine interviews were conducted with informal caregivers of persons with HF who performed non-invasive telemonitoring at home. A sequential process of three categories emerged from the data: access to support, towards routinizing, and mastering non-invasive telemonitoring. Conclusion: Informal caregivers performed non-invasive telemonitoring for the first time in this study. Their experiences were of a sequential process that included access to support from health care professionals, establishing a routine together, and access to nurses or physicians in HF care as part of mastering. This study highlights involving informal caregivers and persons with HF together in the implementation and future research of telemonitoring in HF care.Funding Agencies|NordForsk, Nordic Program on Health andWelfare [76015]</p

Non-invasive home lung impedance monitoring in early post-acute heart failure discharge: Three case reports.

BACKGROUND Patients discharged after hospitalization for acute heart failure (AHF) are frequently readmitted due to an incomplete decongestion, which is difficult to assess clinically. Recently, it has been shown that the use of a highly sensitive, non-invasive device measuring lung impedance (LI) reduces hospitalizations for heart failure (HF); it has also been shown that this device reduces the cardiovascular and all-cause mortality of stable HF patients when used in long-term out-patient follow-ups. The aim of these case series is to demonstrate the potential additive role of non-invasive home LI monitoring in the early post-discharge period. CASE SUMMARY We present a case series of three patients who had performed daily LI measurements at home using the edema guard monitor (EGM) during 30 d after an episode of AHF. All patients had a history of chronic ischemic HF with a reduced ejection fraction and were hospitalized for 6-17 d. LI measurements were successfully made at home by patients with the help of their caregivers. The patients were carefully followed up by HF specialists who reacted to the values of LI measurements, blood pressure, heart rate and clinical symptoms. LI reduction was a more frequent trigger to medication adjustments compared to changes in symptoms or vital signs. Besides, LI dynamics closely tracked the use and dose of diuretics. CONCLUSION Our case series suggests non-invasive home LI monitoring with EGM to be a reliable and potentially useful tool for the early detection of congestion or dehydration and thus for the further successful stabilization of a HF patient after a worsening episode

Heart failure awareness: a cross-sectional study on misconceptions and educational opportunities.

Heart failure (HF) is an increasing cause of cardiovascular morbidity and mortality. However, the lay public awareness about HF is shown to be inferior to the knowledge of myocardial infarction or stroke. The vast majority of HF patients lack basic comprehension of HF and self-care, which translates into suboptimal treatment outcomes. Therefore this study aimed to establish the present level of knowledge about HF of the lay public and to evaluate the effects of a single public lecture for the consideration of implementing further steps to raise public awareness. Design and methods: We performed a cross sectional survey study using an anonymous questionnaire designed by the German Competence Network Heart Failure (CNHF). Respondents were selected randomly and fulfilled the questionnaire free-willingly prior to and after a standardized lecture on HF. The CNHF questionnaire consisted of two sets of questions focusing on individual characteristics of the respondent and HF-related knowledge. The gathered data were verified by a standardized procedure in Wurzburg, Germany. Results: Among 1025 respondents 60% were females: 15% of the participants had occupational experience in the medical field. The majority (79%) of the study population had heard about HF previously. Typical complaints and symptoms of HF were correctly identified as ‘shortness of breath’ by 69%, ‘swelling of feet’ by 56%, ‘fatigue’ by 56%, and ‘weakness’ by 54% survey participants. The lecture resulted in 22% (from 26% to 48%) increase of correct identification of the combination all three HF symptoms (shortness of breath, swelling of feet and tiredness). The lecture significantly increased the proportion of correct answers for most of the questions. Particularly notable gains were observed in respondents without prior medical experience. Conclusions: The study population’s initial awareness of HF was insufficient. Standardized lecture improved the short-term knowledge about HF symptoms and nature of the disease. Regular educational activities increasing the HF awareness of general population and HF patients can increase the overall HF treatment success

Self-care monitoring of heart failure symptoms and lung impedance at home following hospital discharge: longitudinal study

BACKGROUND: Self-care is key to the daily management of chronic heart failure (HF). After discharge from hospital, patients may struggle to recognize and respond to worsening HF symptoms. Failure to monitor and respond to HF symptoms may lead to unnecessary hospitalizations. OBJECTIVE: This study aimed to (1) determine the feasibility of lung impedance measurements and a symptom diary to monitor HF symptoms daily at home for 30 days following hospital discharge and (2) determine daily changes in HF symptoms of pulmonary edema, lung impedance measurements, and if self-care behavior improves over time when patients use these self-care monitoring tools. METHODS: This study used a prospective longitudinal design including patients from cardiology wards in 2 university hospitals-one in Norway and one in Lithuania. Data on HF symptoms and pulmonary edema were collected from 10 participants (mean age 64.5 years; 90% (9/10) male) with severe HF (New York Heart Association classes III and IV) who were discharged home after being hospitalized for an HF condition. HF symptoms were self-reported using the Memorial Symptom Assessment Scale for Heart Failure. Pulmonary edema was measured by participants using a noninvasive lung impedance monitor, the CardioSet Edema Guard Monitor. Informal caregivers aided the participants with the noninvasive measurements. RESULTS: The prevalence and burden of shortness of breath varied from participants experiencing them daily to never, whereas lung impedance measurements varied for individual participants and the group participants, as a whole. Self-care behavior score improved significantly (P=.007) from a median of 56 (IQR range 22-75) at discharge to a median of 81 (IQR range 72-98) 30 days later. CONCLUSIONS: Noninvasive measurement of lung impedance daily and the use of a symptom diary were feasible at home for 30 days in HF patients. Self-care behavior significantly improved after 30 days of using a symptom diary and measuring lung impedance at home. Further research is needed to determine if daily self-care monitoring of HF signs and symptoms, combined with daily lung impedance measurements, may reduce hospital readmissions

Health Care Professionals Perceptions of Home Telemonitoring in Heart Failure Care: Cross-Sectional Survey

Background: Noninvasive telemonitoring (TM) can be used in heart failure (HF) patients to perform early detection of decompensation at home, prevent unnecessary health care utilization, and decrease health care costs. However, the evidence is not sufficient to be part of HF guidelines for follow-up care, and we have no knowledge of how TM is used in the Nordic Baltic region. Objective: The aim of this study was to describe health care professionals (HCPs) perception of and presumed experience with noninvasive TM in daily HF patient care, perspectives of the relevance of and reasons for applying noninvasive TM, and barriers to the use of noninvasive TM. Methods: A cross-sectional survey was performed between September and December 2016 in Norway and Lithuania with physicians and nurses treating HF patients at either a hospital ward or an outpatient clinic. A total of 784 questionnaires were sent nationwide by postal mail to 107 hospitals. The questionnaire consisted of 43 items with close- and open-ended questions. In Norway, the response rate was 68.7% (226/329), with 57 of 60 hospitals participating, whereas the response rate was 68.1% (310/455) in Lithuania, with 41 of 47 hospitals participating. Responses to the closed questions were analyzed using descriptive statistics, and the open-ended questions were analyzed using summative content analysis. Results: This study showed that noninvasive TM is not part of the current daily clinical practice in Norway or Lithuania. A minority of HCPs responded to be familiar with noninvasive TM in HF care in Norway (48/226, 21.2%) and Lithuania (64/310, 20.6%). Approximately half of the HCPs in both countries perceived noninvasive TM to be relevant in follow-up of HF patients in Norway (131/226, 58.0%) and Lithuania (172/310, 55.5%). For physicians in both countries and nurses in Norway, the 3 most mentioned reasons for introducing noninvasive TM were to improve self-care, to reduce hospitalizations, and to provide high-quality care, whereas the Lithuanian nurses described ability to treat more patients and to reduce their workload as reasons for introducing noninvasive TM. The main barriers to implement noninvasive TM were lack of funding from health care authorities or the Territorial Patient Fund. Moreover, HCPs perceive that HF patients themselves could represent barriers because of their physical or mental condition in addition to a lack of internet access. Conclusions: HCPs in Norway and Lithuania are currently nonusers of TM in daily HF care. However, they perceive a future with TM to improve the quality of care for HF patients. Financial barriers and HF patients condition may have an impact on the use of TM, whereas sufficient funding from health care authorities and improved knowledge may encourage the more widespread use of TM in the Nordic Baltic region and beyond.Funding Agencies|NordForsk Nordic Program on Health and Welfare [76015]</p

The dynamics of self-care in the course of heart failure management: data from the IN TOUCH study

Introduction: Self-care is an important patient-reported outcome (PRO) for heart failure (HF) patients, which might be affected by disease management and/or telemonitoring (TM). The number of studies reporting the influence of TM on self-care is limited. Aims: This study aimed: to assess whether TM, in addition to information-and-communication-technology (ICT)-guided disease management system (ICT-guided DMS), affects self-care behavior; to evaluate the dynamics of self-care during the study; to investigate factors contributing to self-care changes; and to identify a patient profile that predisposes the patient to improvement in self-care. Methods: In the INnovative ICT-guided-DMS combined with Telemonitoring in OUtpatient clinics for Chronic HF patients (IN TOUCH) study, 177 patients were randomized to either ICT-guided DMS or TM+ICT-guided DMS, with a follow-up of 9 months. The current analysis included 118 participants (mean age: 69 +/- 11.5 years; 70% male) who filled the following PRO instruments: the nine-item European Heart Failure Self-care Behaviour scale (EHFScBs), Hospital Anxiety and Depression scale (HADs), and Minnesota Living with HF Questionnaire (MLHFQ). Results: The baseline level of self-care was better in the TM+ICT-guided-DMS group (n=58) compared to ICT-guided-DMS group (n=60, p=0.023). Self-care behavior improved in the ICT-guided-DMS group (p amp;lt; 0.01) but not in the TM+ICT-guided-DMS group. Factors associated with self-care worsening were as follows: higher physical subscale of MLHFQ (per 10 points, p amp;lt; 0.05), lower left ventricular ejection fraction (LVEF) (per 5%, p amp;lt; 0.05), lower New York Heart Association (NYHA) class (class III vs class II, p amp;lt; 0.05). The subgroups of patients who had an initial EHFScBs total score amp;gt; 28, or from 17 to 28 with concomitant HADs depression subscale (HADs_D) score amp;lt;= 8, demonstrated the greatest potential to improve self-care during the study. Conclusion: TM did not have an advantage on self-care improvement. Poor physical aspect of quality of life. lower LVEF, and lower NYHA class were associated with self-care worsening. The greatest self-care improvement may be achieved in those patients who have low or medium initial self-care level in the absence of depression.Funding Agencies|Dutch Ministry of Health, Department of Pharmaceutical Affairs and Medical Technology (GMT); NordForsks "Nordic Programme on Health and Welfare" [76015]</p