European Respiratory Society International Congress best abstract preview from the allied respiratory professionals from assembly 9

The 28th European Respiratory Society (ERS) International Congress [2018] in Paris features interesting research findings within the allied respiratory professional assembly (assembly 9). Excellent and high ranked abstracts were selected for this year’s ERS International Congress preview of assembly 9 and are put in the spotlights. A summary of the best three abstracts of every group, i.e., lung function technologists, physiotherapists and nurses, within assembly 9 is presented. Session, timing and location of the presentation of the abstract at this year’s ERS International Congress is indicated in squared brackets following the authors’ name.info:eu-repo/semantics/publishedVersio

Reduced exertion high-intensity interval training (REHIT) in an adult with Cystic Fibrosis: A mixed-methods case study

Although aerobic capacity has been identified as an important predictor of mortality in Cystic Fibrosis (CF) individuals, many remain insufficiently active. As a ‘lack of time’ is a commonly cited barrier to exercise, reduced-exertion high-intensity interval training (REHIT) may provide a truly time-effective method to increase aerobic capacity. Six-weeks of REHIT in a CF individual was assessed by a cardiopulmonary exercise test (CPET) and individual perceptions described using a self-report narrative. Peak oxygen uptake (V˙ O2peak) increased by 6% whilst pulmonary function remained unchanged. Qualitative data indicated social support and low-time commitment positively influenced adherence with fatigue and lack of enjoyment noted as a significant barriers. REHIT was demonstrated as a viable, manageable option for a CF individual with moderate-severe pulmonary limitation. Further research is needed to determine the efficacy of REHIT in a large representative sample to ascertain whether it represents an alternative treatment strategy

Improving Health Service Access for Youth with Cystic Fibrosis: A Narrative Review

Background and Purpose: Cystic Fibrosis (CF) is a complex condition that impacts various functions throughout the body. Improvements in health through technological advances and research have increased the global life expectancy for youth with CF; however, access to resources and support remains suboptimal. Therefore, our primary aim was to identify the most common access issues for youth with CF, with secondary aims of raising awareness about these barriers and proposing potential solutions.Methods: An initial literature scan was conducted, where five key themes were identified as the most pertinent access issues for youth, including: treatment complexity, distance to care facilities, financial constraints, family involvement, and mental health factors. To explore these access issues in further detail, we conducted an iterative narrative review across four databases.Results: Twenty-five research articles were identified across the five themes, and included the following designs: review, cross sectional, survey/questionnaire, descriptive, quasi-experimental, longitudinal, cohort, observational, and qualitative research. Expert opinions and news articles were also included using a systematic grey literature scan. Conclusion: While these articles provide the most up-to-date evidence on access issues for youth with CF, current research remains limited. However, nurses can be key advocates for assisting youth populations with CF to better access health services while minimizing potential barriers to care. Some proposed advocacy activities include supporting policy changes through funding for life-enhancing medication and increasing access to digital health services that improve health outcomes for youth with CF

Cystic fibrosis adults' perception and management of the risk of infection with Burkholderia cepacia complex

The risk of infection for cystic fibrosis patients from Burkholderia cepacia complex pathogens is of increasing concern to doctors and scientists. This paper reports on how these patients perceive and manage the risk of cepacia infection using Douglas and Calvez's (1990) typology of four cultures of the community (the central community, dissenting enclaves, isolates, and individualists) and Douglas' works on pollution, risk, and culture. We attempt to develop Douglas's cultural theory in the light of the data, which were drawn from in-depth interviews with 31 adults with cystic fibrosis attending a specialist treatment centre in the UK. We found that our respondents' group membership depended on their health state and contact with the hospital. The central community of adults was found to be dispersing to form a series of isolates, perceiving others who may potentially have infection as individualists. Due to the nature of cepacia infection, no dissenting enclave was identified for this group. Medical and lay uncertainty in testing for infection and managing the risk of its spread was expressed by the majority of adults, many of whom admitted that they limited hospital attendance as a part of managing such risk

European Respiratory Society statement on airway clearance techniques in adults with bronchiectasis

Airway clearance techniques (ACTs) are part of the main management strategy for patients with bronchiectasis. Despite being a priority for patients, accessibility, implementation and reporting of ACTs are variable in clinical settings and research studies. This European Respiratory Society statement summarises current knowledge about ACTs in adults with bronchiectasis and makes recommendations to improve the future evidence base. A task force of 14 experts and two patient representatives (10 countries) determined the scope of this statement through consensus and defined six questions. The questions were answered based on systematic searches of the literature. The statement provides a comprehensive review of the physiological rationale for ACTs in adults with bronchiectasis, and the mechanisms of action along with the advantages and disadvantages of each ACT. Evidence on ACTs in clinical practice indicates that the most frequently used techniques are active cycle of breathing techniques, positive expiratory pressure devices and gravity-assisted drainage, although there is limited evidence on the type of ACTs used in specific countries. A review of 30 randomised trials for the effectiveness of ACTs shows that these interventions increase sputum clearance during or after treatment, reduce the impact of cough and the risk of exacerbations, and improve health-related quality of life. Furthermore, strategies for reducing the risk of bias in future studies are proposed. Finally, an exploration of patients' perceptions, barriers and enablers related to this treatment is also included to facilitate implementation and adherence to ACTs.</p

Empowerment in Adolescents and Young Adults with Cystic Fibrosis

Adolescence and young adulthood is a pivotal time for individuals with cystic fibrosis (CF) that is characterized by increased self-management, transition to adult-oriented healthcare, and often a decline in treatment adherence and health-related quality of life (HRQoL) (Abbott et al., 2015; Modi et al., 2008). The literature regarding which factors are important for readiness to transition, treatment adherence, and HRQoL is limited in this population. However, empowerment has emerged as a salient construct in other disease groups (Acuña Mora et al., 2019; Burström et al., 2019; Kaal et al., 2017). As such, this thesis determined the convergent validity of the Gothenburg Young Persons Empowerment Scale (GYPES), as well as examined the association among empowerment, as measured by the GYPES, and transition readiness, treatment adherence, and HRQoL. We hypothesized that that the GYPES would be significantly correlated with a measure of general self-efficacy and higher levels of empowerment would be associated with more transition readiness, better treatment adherence, and better HRQoL. Data were collected from 41 AYAs with CF (mean±SD age = 18±2.89, 80.5% White, 70.7% female) using an electronic survey. In addition to the GYPES, measures included the Generalized Self-Efficacy Scale (GSE), Transition Readiness Assessment Questionnaire (TRAQ), Treatment Adherence Rating Scale (TARS), and the Cystic Fibrosis Questionnaire-Revised (CFQ-R; physical, role, vitality, emotional, and social subscales). Hypotheses were tested using a bivariate correlation and several hierarchical linear regressions. Results indicated that the GSE and GYPES were positively correlated (r(39) = .615, p \u3c .001), indicating convergent validity. In addition, empowerment was positively associated with transition readiness (b = .630, p \u3c .001) and treatment adherence (b = .485, p \u3c .001). Empowerment was not associated with physical functioning (b = .076, p = .68), role functioning (b = .113, p = .47), vitality (b = .281, p = .021), emotional functioning (b = .212, p = .10), or social functioning (b = .008, p = .96) when applying a Bonferroni correction. The present study supported the convergent validity of the GYPES and associations between empowerment and both transition readiness and treatment adherence. Thus, when preparing AYAs for transition or encouraging adherence, empowering AYAs may be an important first step. Further investigation on how to best empower AYAs with CF as well as factors contributing to empowerment in this population is warranted

Feasibility of a Nutrition Training Program on Improving Self-Efficacy and Life Skill Development for Adolescents with Sickle Cell Disease

Adolescents with sickle cell disease (SCD) are at risk for growth and nutritionaldeficiencies due to poor dietary intake. Presently, no efficacious behavioral intervention exists to address the nutritional need in SCD management. The Good Nutrition 4Me Living with SCD program is a multi-component intervention, developed to improve knowledge base and the dietary habits of adolescents living with SCD. This report reviews the outcomes for 5 adolescents that participated in this 5-week program. Dietary intake was monitored daily via text messaging and progress with goals was reviewed weekly in the group sessions. Parents were also updated on their adolescent’s progress with dietary goals during a family session in the home setting. Resulted indicated promising effects across participants, with trends towards improvement in knowledge about nutritional recommendations and dietary intake. The Good Nutrition 4Me Living with SCD program was viewed as feasible and palatable, as all evaluable families completed the intervention and one-month follow-up activities

Inhaled antibiotics for the treatment of chronic Pseudomonas aeruginosa infection in cystic fibrosis patients: challenges to treatment adherence and strategies to improve outcomes

R&eacute;ka Bodn&aacute;r,1,2 &Aacute;gnes M&eacute;sz&aacute;ros,2 M&aacute;t&eacute; Ol&aacute;h,2 Tam&aacute;s &Aacute;gh3 1Department of Pediatric Pulmonology, Heim P&aacute;l Children&rsquo;s Hospital, Budapest, Hungary; 2University Pharmacy Department of Pharmacy Administration, Semmelweis University, Budapest, Hungary; 3Syreon Research Institute, Budapest, Hungary Background: Inhaled antibiotics (ABs) are recommended for use in the therapy of chronic Pseudomonas aeruginosa infection in patients with cystic fibrosis (CF). The aim of this systematic literature review was to identify level of adherence to inhaled ABs and to determine predictors and consequences of nonadherence in CF. Methods: A systematic literature search of English-language articles was conducted in April 2015 using Medline and Embase. No publication date limit was applied. The literature screening was conducted by two independent reviewers. All of the included studies were assessed for quality. Results: The search yielded 193 publications, of which ten met the inclusion criteria and underwent data extraction. Seven studies focused on inhaled tobramycin, one on inhaled colistimethate, one on inhaled levofloxacin, and one on inhaled aztreonam lysine. Medication adherence to inhaled ABs was analyzed by pharmacy refill history, daily phone diary, parent and child self-reports, vials counting, or electronic monitoring. In randomized controlled trials (n=3), proportion of adherent patients (&gt;75%&ndash;80% of required doses taken) ranged from 86% to 97%; in prospective cohort studies (n=3), adherence rates ranged between 36% and 92%, and in retrospective studies (n=4) it ranged between 60% and 70%. The adherence to inhaled ABs in CF was found to be associated with the complexity of treatment, time of drug administration, age of patients, treatment burden (adverse events, taste), and patient satisfaction. Conclusion: The high diversity of adherence data was because of the different study designs (randomized controlled trials vs real-world studies) and the lack of a commonly accepted consensus on the definition of adherence in the reviewed articles. Routine adherence monitoring during CF care, discussing the possible reasons of suboptimal adherence with the patient, and changing treatment regimens on the basis of patient burden can individualize CF therapy for patients and may improve the level of adherence. Keywords: cystic fibrosis, antibiotics, adherence, compliance, Pseudomonas aeruginos