The Role of Education, Monitoring, and Symptom Perception in Internet-Based Self-management Among Adolescents With Asthma: Secondary Analysis of a Randomized Controlled Trial

Background Internet-based self-management programs improve asthma control and the asthma-related quality of life in adults and adolescents. The components of self-management programs include education and the web-based self-monitoring of symptoms; the latter requires adequate perception in order to timely adjust lifestyle or medication or to contact a care provider. Objective We aimed to test the hypothesis that adherence to education and web-based monitoring and adequate symptom perception are important determinants for the improvement of asthma control in self-management programs. Methods We conducted a subgroup analysis of the intervention group of a randomized controlled trial, which included adolescents who participated in the internet-based self-management arm. We assessed the impacts that attendance in education sessions, the frequency of web-based monitoring, and the level of perception had on changes in asthma control (Asthma Control Questionnaire [ACQ]) and asthma-related quality of life (Pediatric Asthma Quality of Life Questionnaire) from baseline to 12 months after intervention. Results Adolescents who attended education sessions had significant and clinically relevant improvements in asthma control (ACQ score difference: −0.6; P=.03) and exhibited a nonsignificant trend of improvement in asthma-related quality of life (Pediatric Asthma Quality of Life Questionnaire score difference: −0.45; P=.15) when compared to those who did not adhere to education. Frequent monitoring alone did not improve asthma control (P=.07) and quality of life (P=.44) significantly, but its combination with education did result in improved ACQ scores (difference: −0.88; P=.02). There were no significant differences in outcomes between normoperceivers and hypoperceivers. Conclusions Education, especially in combination with frequent web-based monitoring, is an important determinant for the 1-year outcomes of asthma control in internet-based self-management programs for adolescents with partly controlled and uncontrolled asthma; however, we could not establish the effect of symptom perception. This study provides important knowledge on the effects of asthma education and monitoring in daily life.

SYMPERHEART: an intervention to support symptom perception in persons with heart failure and their informal caregiver: a feasibility quasi-experimental study protocol

IntroductionSymptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver.Methods and analysisA feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers’ contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers’ burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes.Ethics and disseminationThe study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses.Trial registration numberISRCTN18151041.

Somatic changes experienced by patients with heart failure during acute exacerbation: A qualitative text mining analysis

Funding Acknowledgements Type of funding sources: Public Institution(s). Main funding source(s): Ministry of education Background In patients with heart failure (HF), symptom perception’ is a self-care requirement for effective disease management. However, previous studies have reported that these patients have inadequate symptom perception. When patients experience somatic changes, they generally interpret these as symptoms, which can cause them to adopt coping behaviours. To improve symptom perception, it is important that health care providers understand the somatic changes experienced during an acute HF exacerbation based on patients’ representation of symptoms, rather than clinical symptom names. Purpose This study aimed to clarify the comprehensive picture of somatic changes experienced by patients with HF during acute exacerbations by analysing the expressions they use to describe these changes. Methods In semi-structured interviews, 21 patients with HF hospitalised due to acute exacerbation were asked to use their own words to describe any somatic change they perceived before hospitalisation. A three-step text mining process was used to analyse the expressions patients used to describe these changes. First, the frequency of use was calculated for the terms used to describe somatic changes. Next, the extracted words were classified into clusters based on concatenation between words. Finally, cluster names were assigned using patient expressions. Results The sample was 76.2% male, and the mean patient age was 71.3 ± 13.7 years. Of the 21 patients, 52.4% had a history of hospitalisation. The interviews generated 59 pages of data. Analysis indicated that 472 terms were related to somatic changes. The most frequently used terms were ‘breath’ (46 times), ‘painful’ (40 times), ‘foot’ (29 times), ‘ha-ha’ (the sound of gasping; 28 times) and ‘walking’ (25 times). The somatic changes experienced by patients were classified into 10 clusters based on concatenation between words. The cluster names were ‘shortness of breath when moving’, ‘not being able to walk the distances one normally walks without a rest’, ‘not being able to sleep at night because of difficulty breathing’, ‘increased frequency of urination at night’, ‘swollen and tense legs’, ‘socks leave marks in legs’, ‘projecting abdomen and tighter pants’, ‘fatigue while moving’, ‘increased phlegm and a feeling of discomfort in the throat’, and ‘a vague feeling of being unwell’. Conclusions Instead of employing symptom names used by medical professionals, patients described their perceived somatic changes in diverse ways using various expressions, such as mimetic words and metaphorical expressions. Moreover, some patients described vague physical changes that could not be classified with corresponding symptom names. These findings indicate that the symptoms patients experience during an acute exacerbation cannot always be categorised using clinical symptom names.

Symptom perception management education improves self-care in patients with heart failure

BACKGROUND: Patients with heart failure often have difficulty recognizing signs and symptoms of the disease, which delays seeking help, and therefore interferes with patient engagement and self-care management. Early detection of these symptoms could lead to care-seeking and avoid hospitalizations. OBJECTIVE: The purpose of this study was to design a complex intervention through a systematic literature review and qualitative study. METHODS: Our design followed the Medical Research Council’s recommendations. To design a complex intervention, we combined a systematic literature review on education, symptom recognition, and self-care management in patients with heart failure, and semi-structured interviews with cardiology healthcare providers and patients with heart failure admitted to a cardiology ward. RESULTS: The systematic literature review identified 582 studies published between 2005 and 2014, of which four were included in the final review. These suggested that patient education focused on symptom recognition, combined with reinforcements, led to better self-care behaviors. Additionally, content analysis of semi-structured interviews revealed three themes: health management, behavior management, and support received. CONCLUSIONS: Combining the findings of the literature review and the themes that emerged from the semi-structured interviews, we proposed the development and implementation of a complex intervention on symptom perception and fluid management.

‘It's just part of the disease’: a qualitative study exploring help-seeking behaviours for fatigue in inflammatory bowel disease

Background: Fatigue is the most burdensome aspect of inflammatory bowel disease (IBD). Despite this, people tend not to discuss fatigue or seek help. Aims: To uncover the reasons people do or do not seek help for fatigue in IBD. Methods: A qualitative approach was employed, underpinned by the Theory of Planned Behaviour. Semi-structured interview questions were posed to a voluntary sample of 12 participants with self-reported diagnosis of IBD fatigue, recruited from the Irish Society of Colitis and Crohn's. The sample included individuals who had and had not sought help in the past. Findings: The availability of management options, symptom perception, symptom impact, knowledge of sources of help and inferiority of fatigue as a symptom can influence help-seeking behaviour. Fatigue is viewed as inferior to other symptoms of IBD, which influences help-seeking behaviour and help-seeking experiences. Conclusions: Health professionals can increase help-seeking by informing patients about the symptom and identifying a specific source of help for fatigue.

Emergency rigid bronchoscopy in two lower social class patients with mirror like complete pulmonary malignant atelectasis

Several factors as cultural factors and social class other than biological and genetic factor can affect symptom perception in patients with malignant airway obstruction. Poor perception of dyspnoea can result in the delayed seeking of medical care so increase access to intensive care due to impeding respiratory failure. In patients issued from malignant airway obstruction, therapeutic bronchoscopy procedure can not affect the endotracheal extubation although immediate airway patency can be obtained. We reported the outcome of two patients from lower social classes admitted in intensive care and underwent emergency rigid bronchoscopy for malignant complete pulmonary atelectasis.

Symptom perception and functioning in patients with advanced cancer

Purpose To explore how symptom perception affects functioning in patients with advanced cancer. Materials and methods We conducted a cross-sectional observational study of 459 advanced cancer patients at the national cancer center. Functioning was assessed using the World Health Organization Disability Assessment Schedule (WHODAS) II, and symptoms were evaluated using the Memorial Symptom Assessment Scale-Short Form. Confirmatory factor analysis was conducted to develop a structural model based on different symptom perceptions, such as somatic sensation and experienced symptoms. Results The structural model of disability revealed a significant direct pathway involving somatic sensation (β = 16.11, p < 0.001). Experienced symptoms significantly affected somatic sensations (β = 0.717, p < 0.001) but were not directly associated with disability. Unidimensional models exhibited a poor fit. In contrast, a complex model with first-order (somatic sensation) and second-order (experienced symptoms) factors provided an excellent fit, with comparative fit indexes (CFIs) and Tucker Lewis indexes (TLI) of more than 0.950 threshold. Conclusions Our findings suggest that relationships to functioning may vary between somatic sensations versus experienced symptoms. The structure of symptoms is best conceptualized by direct somatic sensation and indirect experienced symptoms. A better understanding of symptom perception and the relationship between symptoms and function would facilitate the development of effective rehabilitation programs.