ABSTRACT
Background: Regular daily nebulised antibiotics are widely used in managing bronchiectasis. This patient population typically has severe bronchiectasis requiring multiple other medications. Given that little is known about patients' views and preferences for such therapies, this was the focus of our study. Methods: To explore patient lived-experience using nebulised antibiotics, focus groups and semi-structured interviews were conducted with patients and carers; these were audio-recorded and transcribed to enable thematic analysis. QSR NVivo software facilitated data management. The themes developed from the qualitative data analysis were then used to co-design a questionnaire to capture attitudes and preferences towards nebulised therapy. Questionnaires were completed by patients and statistical analysis was performed. Ethical approval was obtained (13/WS/0036). Results: The study's focus groups comprised 13 patients and carers, and 101 patients completed the questionnaire. Patients described nebulised therapy as an imposition on their daily routine, in turn affecting reported rates of adherence. Results demonstrated that 10% of all patients using nebulised antibiotics found these hard/very hard to administer. Further, 53% of participants strongly agreed/agreed that they would prefer an antibiotic delivered by an inhaler over a nebuliser, if it were as effective at preventing exacerbations. Notably, only 10% of participants wished to remain on nebulised therapy. Conclusions: Inhaled antibiotics delivered via dry powder devices were deemed quicker and easier to use by patients. Providing they were at least as effective as current nebulised treatments, patients deemed inhaled antibiotics to be a preferable treatment option.
ABSTRACT
BACKGROUND: There has been comparatively little patient information about bronchiectasis, a chronic lung disease with rising prevalence. Patients want more information, which could improve their understanding and self-management. A novel information resource meeting identified needs has been co-developed in prior work. We sought to establish the feasibility of conducting a multi-centre randomised controlled trial to determine effect of the information resource on understanding, self-management and health outcomes. METHODS/DESIGN: We conducted an unblinded, single-centre, randomised controlled feasibility trial with two parallel groups (1:1 ratio), comparing a novel patient information resource with usual care in adults with bronchiectasis. Integrated qualitative methods allowed further evaluation of the intervention and trial process. The setting was two teaching hospitals in North East England. Participants randomised to the intervention group received the information resource (website and booklet) and instructions on its use. Feasibility outcome measures included willingness to enter the trial, in addition to recruitment and retention rates. Secondary outcome measures (resource use and satisfaction, quality of life, unscheduled healthcare presentations, exacerbation frequency, bronchiectasis knowledge and lung function) were recorded at baseline, 2 weeks and 12 weeks. RESULTS: Sixty-two participants were randomised (control group = 30; intervention group = 32). Thirty-eight (61%) were female, and the participants' median age was 65 years (range 15-81). Median forced expiratory volume in 1 s percent predicted was 68% (range 10-120). Sixty-two of 124 (50%; 95% CI, 41-59%) of potentially eligible participants approached were recruited. Sixty (97%) of 62 participants completed the study (control group, 29 of 30 [97%]; 95% CI, 83-99%; 1 unrelated death; intervention group, 31 [97%] of 32; 95% CI, 84-99%; 1 withdrawal). In the intervention group, 27 (84%) of 32 reported using the information provided, and 25 (93%) of 27 of users found it useful, particularly the video content. Qualitative data analysis revealed acceptability of the trial and intervention. Web analytics recorded over 20,000 page views during the 16-month study period. CONCLUSION: The successful recruitment process, high retention rate and study form completion rates indicate that it appears feasible to conduct a full trial based on this study design. Worldwide demand for online access to the information resource was high. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN84229105. Registered on 25 July 2014.
Subject(s)
Access to Information/psychology , Bronchiectasis/drug therapy , Bronchiectasis/epidemiology , Patient Education as Topic/methods , Adolescent , Adult , Aged , Aged, 80 and over , Bronchiectasis/physiopathology , Bronchiectasis/psychology , Case-Control Studies , Disease Progression , England/epidemiology , Feasibility Studies , Female , Health Resources , Humans , Information Seeking Behavior/physiology , Male , Middle Aged , Patient Satisfaction , Prevalence , Qualitative Research , Quality of Life , Research Design , Self-Management/education , Young AdultABSTRACT
BACKGROUND: Lung transplantation is a well-established treatment for end-stage non-cystic fibrosis bronchiectasis (BR), though information regarding outcomes of transplantation remains limited. Our results of lung transplantation for Br are reported here. METHODS: A retrospective review of case notes and transplantation databases was conducted for patients that had underwent lung transplantation for bronchiectasis at the Freeman Hospital between 1990 and 2013. RESULTS: Fourty two BR patients underwent lung transplantation, the majority (39) having bilateral sequential lung transplantation. Mean age at transplantation was 47.1 years. Pre-transplantation osteoporosis was a significant non-pulmonary morbidity (48%). Polymicrobial infection was common, with Pseudomonas aeruginosa infection frequently but not universally observed (67%). Forced expiratory volume in 1 second (% predicted) improved from a pre-transplantation mean of 0.71 L (22% predicted) to 2.56 L (79 % predicted) at 1-year post-transplantation. Our survival results were 74% at 1 year, 64% at 3 years, 61% at 5 years and 48% at 10 years. Sepsis was a common cause of early post-transplantation deaths. CONCLUSIONS: Lung transplantation for end-stage BR is a useful therapeutic option, with good survival and lung function outcomes. Survival values were similar to other bilateral lung transplants at our centre. Pre-transplantation Pseudomonas infection is common.
Subject(s)
Bronchiectasis/microbiology , Bronchiectasis/surgery , Lung Transplantation , Adult , Bronchiectasis/mortality , Databases, Factual , Female , Forced Expiratory Volume , Humans , Lung/physiopathology , Male , Middle Aged , Postoperative Complications/epidemiology , Pseudomonas Infections/epidemiology , Retrospective Studies , Survival Analysis , Time Factors , Young AdultABSTRACT
BACKGROUND: Bronchiectasis is an incurable lung disease characterised by irreversible airway dilatation. It causes symptoms including chronic productive cough, dyspnoea, and recurrent respiratory infections often requiring hospital admission. Fatigue and reductions in quality of life are also reported in bronchiectasis. Patients often require multi-modal treatments that can be burdensome, leading to issues with adherence. In this article we review the provision of, and requirement for, education and information in bronchiectasis. DISCUSSION: To date, little research has been undertaken to improve self-management in bronchiectasis in comparison to other chronic conditions, such as COPD, for which there has been a wealth of recent developments. Qualitative work has begun to establish that information deficit is one of the potential barriers to self-management, and that patients feel having credible information is fundamental when learning to live with and manage bronchiectasis. Emerging research offers some insights into ways of improving treatment adherence and approaches to self-management education; highlighting ways of addressing the specific unmet information needs of patients and their families who are living with bronchiectasis. CONCLUSIONS: We propose non-pharmacological recommendations to optimise patient self-management and symptom recognition; with the aim of facilitating measurable improvements in health outcomes for patients with bronchiectasis.
Subject(s)
Bronchiectasis/therapy , Patient Education as Topic , Access to Information , Bronchiectasis/epidemiology , Chronic Disease , Health Education/methods , Humans , Self-Management/methodsABSTRACT
BACKGROUND: There is currently little patient information on bronchiectasis, a chronic lung disease with rising prevalence. Previous work shows that patients and their families want more information, which could potentially improve their understanding and self-management. Using interviews and focus groups, we have co-developed a novel patient and carer information resource, aiming to meet their identified needs. The aims and objectives are: 1. To assess the potential impact of the information resource 2. To evaluate and refine the intervention 3. To establish the feasibility of carrying out a multi-centre randomised controlled trial to determine its effect on understanding, self-management and health outcomes METHODS/DESIGN: This is a feasibility study, with a single-centre, randomised controlled trial design, comparing use of a novel patient information resource to usual care in bronchiectasis. Additionally, patients and carers will be invited to focus groups to discuss their views on both the intervention itself and the trial process. The study duration for each participant will be 3 months from the study entry date. A total of 70 patients will be recruited to the study, and a minimum of 30 will be randomised to each arm. Ten participants (and their carers if applicable) will be invited to attend focus groups on completion of the study visits. Participants will be adults with bronchiectasis diagnosed as per national bronchiectasis guidelines. Once consented, participants will be randomised to the intervention or control arm using random permuted blocks to ensure treatment group numbers are evenly balanced. Randomisation will be web-based. Those randomised to the intervention will receive the information resource (website and booklet) and instructions on its use. Outcome measures (resource satisfaction, resource use and alternative information seeking, quality of life questionnaires, unscheduled healthcare visits, exacerbation frequency, bronchiectasis knowledge questionnaire and lung function tests) will be recorded at baseline, 2 weeks and 3 months. DISCUSSION: All outcome measures will be used in assessing feasibility and acceptability of a future definitive trial. Feasibility outcomes include recruitment, retention and study scale form completion rates. Focus groups will strengthen qualitative data for resource refinement and to identify participant views on the trial process, which will also inform feasibility assessments. Questionnaires will also be used to evaluate and refine the resource. TRIAL REGISTRATION: ISRCTN84229105.
Subject(s)
Access to Information , Bronchiectasis/therapy , Consumer Health Information , Health Information Systems , Patient Education as Topic , Self Care , Bronchiectasis/diagnosis , Bronchiectasis/epidemiology , Caregivers/psychology , Clinical Protocols , England , Feasibility Studies , Focus Groups , Health Knowledge, Attitudes, Practice , Health Resources , Humans , Patient Satisfaction , Prognosis , Research Design , Surveys and QuestionnairesABSTRACT
BACKGROUND: The hallmark of non-cystic fibrosis bronchiectasis is recurrent bronchial infection, yet there are significant gaps in our understanding of pathogen persistence, resistance and exacerbation frequencies. Pseudomonas aeruginosa is a key pathogen thought to be a marker of disease severity and progression, yet little is known if the infection risk is seen in those with milder disease or if there is any potential for eradication. These data are important in determining risk stratification and follow up. METHODS AND PATIENT COHORT: A retrospective review of consecutive adult patients attending a specialist UK bronchiectasis clinic over a two-year recruitment period between July 2007 and June 2009 was performed. Analysis of our primary outcome, longitudinal microbiological status, was recorded based on routine clinical follow-up through to data capture point or date of death. Patients were stratified by lung function and infecting organism. RESULTS: 155 patients (mean (SD) age 62.2 (12.4) years; 60.1% female) were identified from clinic records with microbiological data for a median (IQR) follow up duration of 46 (35-62) months. Baseline mean FEV1% predicted was 60.6% (24.8) with mean exacerbation frequency of 4.42/year; 73.6% reported 3 or more exacerbations/year. Haemophilus influenzae was isolated in 90 (58.1%) patients and P. aeruginosa in 78 (50.3%) patients with persistent infection in 51 (56.7%) H. influenzae and 47 (60.3%) P. aeruginosa, respectively. Of the P. aeruginosa colonised patients, 16 (34%) became culture negative on follow-up with a mean of 5.2 negative sputum cultures/patient. P. aeruginosa was isolated from 5 out of 39 patients (12.8%) with minimal airflow limitation as compared to 18 out of 38 patients (47.4%) with severe airflow limitation. Although hospital admissions were significantly higher in the P. aeruginosa infected group (1.3 vs. 0.7 admissions per annum, p = 0.035), overall exacerbation rates were the same (4.6 vs. 4.3, p = 0.58). Independent predictors of P. aeruginosa colonisation were low FEV1% predicted (OR 2.46; 95% CI 1.27-4.77) and polymicrobial colonisation (OR 4.07; 95% CI 1.56-10.58). 17 (11%) patients were infected with multi-resistant strains; however, none were pan-resistant. CONCLUSIONS: P. aeruginosa is associated with greater persistent infection rates and more hospital admissions than H. influenzae. Exacerbation rates, however, were similar; therefore H. influenzae causes significant out-patient morbidity. P. aeruginosa infection occurs across all strata of lung function impairment but is infrequently multi-resistant in bronchiectasis. Careful microbiology follow up is required even in those with well-preserved lung function.
Subject(s)
Bronchiectasis/microbiology , Pseudomonas Infections/microbiology , Pseudomonas aeruginosa/isolation & purification , Aged , Anti-Bacterial Agents/therapeutic use , Bronchiectasis/physiopathology , Cohort Studies , Disease Progression , Drug Resistance, Bacterial , Female , Follow-Up Studies , Haemophilus influenzae/isolation & purification , Humans , Longitudinal Studies , Male , Middle Aged , Pseudomonas Infections/drug therapy , Pseudomonas Infections/physiopathology , Retrospective Studies , Sputum/microbiologyABSTRACT
BACKGROUND AND OBJECTIVE: Neutrophils are consistently found in inflamed and infected airways in idiopathic bronchiectasis, but relatively little is known about the function of blood neutrophils in this condition. We hypothesized that peripheral blood neutrophil (PBN) phagocytosis and superoxide generation are impaired in bronchiectasis, and that granulocyte-macrophage colony-stimulating factor (GM-CSF) is capable of improving neutrophil function. METHODS: Neutrophils were isolated from the peripheral blood of patients with idiopathic bronchiectasis who were free of exacerbation, and from healthy controls of similar age (n = 21 in both groups). Ingestion of serum-opsonized zymosan by neutrophils was used to quantify phagocytic capacity. Superoxide generation in neutrophils was measured in response to addition of platelet activating factor and formyl-methionyl-leucyl-phenylalanine. Experiments were performed in the presence or absence of GM-CSF. RESULTS: No differences were observed in either phagocytic capacity (P = 0.99) or superoxide generation (P = 0.81) when comparing patients and controls. However, a significant increase in phagocytic capacity above baseline levels in both patients (P < 0.005) and controls (P < 0.005) was induced by GM-CSF. Similarly, the superoxide generation in patients (P < 0.005) and controls (P = 0.001) was significantly increased by GM-CSF. CONCLUSIONS: PBN function was preserved in idiopathic bronchiectasis. Enhancement of neutrophil phagocytosis and superoxide generation by GM-CSF requires further study.
Subject(s)
Bronchiectasis/metabolism , Granulocyte-Macrophage Colony-Stimulating Factor/pharmacology , Neutrophils/drug effects , Neutrophils/metabolism , Aged , Bronchiectasis/physiopathology , Case-Control Studies , Cells, Cultured , Female , Humans , Male , Middle Aged , N-Formylmethionine Leucyl-Phenylalanine/pharmacology , Neutrophils/pathology , Phagocytosis/drug effects , Phagocytosis/physiology , Platelet Activating Factor/pharmacology , Superoxides/metabolism , Zymosan/metabolismABSTRACT
BACKGROUND: Pre-operative infection with organisms from the Burkholderia cepacia complex (BCC), particularly B cenocepacia, has been linked with a poorer prognosis after transplantation compared to patients with cystic fibrosis (CF) without this infection. Therefore, many transplant centers do not list these patients for transplantation. METHODS: We report the early and long-term results of a cohort of lung transplant recipients with CF and pre-operative BCC infection. Patients with pre-transplantation BCC infection were identified by case-note review. BCC species status was assigned by polymerase chain reaction (PCR)-based techniques. Survival rates were compared to recipients with CF without BCC infection. Survival rates in BCC subgroups were also compared, and then further analyzed pre- and post-2001, when a new immunosuppressive and antibiotic regime was introduced for such patients. RESULTS: Two hundred sixteen patients with CF underwent lung transplantation and 22 had confirmed pre-operative BCC infection, with 12 of these being B cenocepacia. Nine B cenocepacia-infected recipients died within the first year, and in 8 BCC sepsis was considered to be the cause of death. Despite instituting a tailored peri-operative immunosuppressive and microbiologic care approach for such patients, post-transplantation BCC septic deaths occurred frequently in those with pre-transplantation B cenocepacia infection. In contrast, recipients infected with other BCC species had significantly better outcomes, with post-transplantation survival comparable to other recipients with CF. CONCLUSIONS: Mortality in patients with B cenocepacia infection was unacceptably high and has led to our center no longer accepting patients with this condition onto the lung transplant waiting list. Long-term survival in the non-B cenocepacia BCC group was excellent, without high rates of acute rejection or bronchiolitis obliterans syndrome (BOS) longer term, and these patients continue to be considered for lung transplantation.