Development of a Communication Instrument to Address Sexuality in COPD: COSY.

Introduction: Sexuality, an important aspect of quality of life, is often overlooked in COPD. Our aim was to develop an instrument that facilitates communication and counseling on sexuality in persons living with chronic obstructive pulmonary disease (COPD). Methods: We searched for publications on sexuality in COPD focusing on communication about sexuality and tools to support such communication. We also performed a survey asking 25 patients and 36 health care professionals (HCPs) about their attitudes, experiences, barriers, and facilitators when talking about sexuality. We set up a project expert team of HCPs and 3 persons with COPD. In a half-day workshop, the team discussed the results of the literature review and the survey as a basis for the contents, the "when and how" to address communication about sexuality, and the design of the communication instrument. Results: The survey showed that although patients and HCPs wanted to talk about sexuality, it rarely happened due to communication barriers, lack of self-confidence, and misconceptions on both sides. In review rounds of the expert team, feedback on the drafts was collected and integrated into the final version of the communication instrument: COmmunication about SexualitY in COPD (COSY). The COSY instrument resulted in 4 tools: a communication leaflet, an application guide, a pictorial representation of the spectrum of intimacy for HCPs, and a comprehensible, picturized information booklet for patients. Conclusions: Addressing sexuality in persons living with COPD should not be neglected. The COSY instrument could help to start and shape communication and consultations about sexuality and a more holistic consideration of quality of life.

Effectiveness of a Long-term Home-Based Exercise Training Program in Patients With COPD After Pulmonary Rehabilitation: A Multicenter Randomized Controlled Trial.

BACKGROUND: Most patients with COPD do not maintain exercise training after pulmonary rehabilitation (PR). RESEARCH QUESTION: Does a 12-month home-based, minimal-equipment strength training program after PR have an effect on dyspnea, exercise capacity, and patient-reported outcomes in patients with COPD? STUDY DESIGN AND METHODS: In a parallel-arm multicenter study across four Swiss PR clinics, patients with COPD were allocated randomly (1:1 ratio) into an intervention group (IG; home-based strength training program) or control group (CG; usual care). The primary outcome was change in Chronic Respiratory Questionnaire (CRQ) dyspnea scale score from baseline to 12 months. Secondary outcomes were change in exercise capacity (1-min sit-to-stand-test [1MSTST], 6-min walk test [6MWT]), health-related quality of life, exacerbations, and symptoms. We assessed the IG's experience by interviews at study end. Main analyses were based on the intention-to-treat approach, and adjusted linear regression models were used. RESULTS: One hundred twenty-three patients with COPD (IG, n = 61; CG, n = 62) were randomized, 61 of whom were women and whose mean ± SD age was 66.8 ± 8.1 years and mean ± SD FEV1 was 39.3 ± 15.3% predicted. One hundred four participants completed 12 months of follow-up (IG, n= 53; CG, n= 51). Of the 53 IG participants, 37 participants (70%) conducted the training until study end. We found no difference in change in CRQ dyspnea scale score over 12 months (adjusted mean difference, 0.28; 95% CI, -0.23 to 0.80; P = .27). We found moderate evidence for a difference in 1MSTST repetitions favoring the IG (adjusted mean difference, 2.6; 95% CI, 0.22-5.03; P = .033), but no evidence for an effect in other outcomes. Seventy-nine percent of the IG reported positive effects that they attributed to the training. INTERPRETATION: The home exercise program had no effect on dyspnea, but improved 1MSTST performance and patient-perceived fitness. The supported program was well accepted by patients with COPD and may facilitate continued exercise training at home. TRIAL REGISTRY: ClinicalTrials.gov; No.: NCT03461887; URL: www. CLINICALTRIALS: gov.

Evaluation of the Implementation of a Home-Based Exercise Training Program for People With COPD: A Mixed-Methods Study.

Introduction: Recently, we developed a home-based, minimal-equipment exercise training program HOMEX for people with chronic obstructive pulmonary disease (COPD) and tested its effectiveness over 1 year in a randomized controlled trial. The aims of the current study were to evaluate the implementation of HOMEX from the perspectives of all involved persons and to optimize the program to ensure its long-term sustainability. Methods: In this mixed-methods study, we used qualitative and quantitative approaches to evaluate the implementation of the intervention on the level of patients with COPD and coaches who provided the intervention and relevant stakeholders. To assess the implementation outcomes dose, reach, fidelity, and adherence, we summarized information recorded in the notes of the coaches and the diaries of patients, complemented with results from qualitative assessments. To assess acceptability and appropriateness, we conducted surveys with patients and coaches, and semistructured interviews with selected patients, coaches, and stakeholders. Results: The coaches delivered the three home visits with one exception according to the protocol (fidelity). Of the 53 intervention group participants, 37 (70%) conducted HOMEX training until the end of the study and 43 (79%) trained for at least 10 months. The exercise behaviors of the participants could be separated into the phases "Starting the training and stabilizing into regular training routine" and "Managing training disruptions" (adherence). Overall, patients, coaches, and stakeholders conveyed a very high "acceptability" of HOMEX, noting the home-based aspect as a particular strength and interaction with other patients as future need. All involved groups perceived the strength-training exercises as appropriate, efficient for people with COPD, and relevant to maintain improvements after pulmonary rehabilitation. The most important facilitators of the patients for long-term motivation were self-perceived improvement in strength, supervision by a coach, and integration of the training in daily routine. Based on these insights, we redesigned and reworded the exercise cards, introduced three new exercises, and refined the training book. Discussion: The results of this study provided insights of the involved persons in the frame of the HOMEX intervention implementation with a particular focus on the long-term training behavior of the participants and their perception and experience with the exercise program. These findings enabled us to optimize the training material and adapt the structure of the program for sustainable further use in clinical and other settings.

A novel approach to increase physical activity in older adults in the community using citizen science: a mixed-methods study.

OBJECTIVES: The aims of this study were to implement a novel, community-based physical activity (PA) intervention in a Swiss town with active participation of elderly participants and to evaluate its effectiveness, feasibility, acceptability and sustainability. METHODS: The CAPACITY intervention combined important determinants of PA, used smartphone apps to provide feedback/facilitate interaction, and followed a citizen science approach to enable participants to organize walking groups. We targeted persons > 60 years from Wetzikon. Assessments took place at baseline and after 6 months, during this intervention period, and 11 months after step-wise withdrawal of the study team. RESULTS: Twenty-nine persons were included in the study; 25 conducted 6-month follow-up. They had a significant increase in moderate-to-vigorous PA (p = 0.046) but not in daily steps (p = 0.331). After the intervention period, key participants took over organization, independently organized monthly get-togethers, added new walking routes and continuously recruit new participants. Eleven months after withdrawal of the study team, 61 people regularly walk in groups together. CONCLUSIONS: The novel CAPACITY intervention was successfully implemented, transferred to participants and is now self-sustainable for almost 1 year in the community.

Effects of a long-term home-based exercise training programme using minimal equipment vs. usual care in COPD patients: a study protocol for two multicentre randomised controlled trials (HOMEX-1 and HOMEX-2 trials).

BACKGROUND: Exercise training is an important component of pulmonary rehabilitation (PR) programmes in chronic obstructive pulmonary disease (COPD), but the great majority of COPD patients who would benefit from PR never follow such programmes or fail to maintain exercise training after PR completion. Against this background, we developed an exercise training programme that requires minimal equipment and can be implemented long-term in the patient's home-setting. The aims of the HOMEX-1 and HOMEX-2 trials are to assess the effectiveness of this home-based exercise training programme in two groups of COPD patients over the course of one year: patients who have completed PR (HOMEX-1 trial) and patients who did not enrol in existing PR programmes within the last two years (HOMEX-2 trial). METHODS: HOMEX-1 and HOMEX-2 are multicentre, parallel group, randomised controlled trials. For both trials each, it is planned to include 120 study participants with a diagnosis of COPD. Participants will be randomised with a 1:1 ratio into the intervention group or the control group (usual care/no intervention). The intervention consists of minimal-equipment exercise training elements with progressive level of intensity, conducted by the participant during six days per week and instructed and coached by a trained health care professional during three home visits and regular telephone calls during one year. Primary outcome is change in dyspnoea (domain of Chronic Respiratory Questionnaire) from baseline to 12-months follow-up. Secondary outcomes are change in dyspnoea over the course of the year (assessed at 3, 6 and 12 month) and change in functional exercise capacity, physical activity, health-related quality of life, health status, exacerbations and symptoms from baseline to 12 months follow-up. In addition, explanatory, safety and cost-effectiveness outcomes will be assessed. We will conduct intention-to-treat analyses separately per trial and per protocol analyses as sensitivity analyses. DISCUSSION: The HOMEX-1 and HOMEX-2 trials assess a novel intervention that provides an innovative way of making exercise training as accessible as possible for COPD patients. If the intervention proves to be effective long-term, it will fill the gap of providing an easily accessible and feasible intervention so that more COPD patients can follow an exercise programme. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: HOMEX-1 NCT03461887 (registration date: March 12, 2018; retrospectively registered); HOMEX-2 NCT03654092 (registration date: August 31, 2018).

Care in Chronic Obstructive Lung Disease (CAROL): a randomised trial in general practice.

Disease management of chronic obstructive pulmonary disease (COPD) is complex and shortcomings in general practice care for COPD are common. A care bundle is a disease management aid used as a reminder and for steering specific elements of care. Our objectives were to test whether a COPD care bundle delivered to general practitioners (GPs) and practice assistants increases the implementation of key elements of COPD care.The study was a cluster-randomised clinical trial, with 1:1 randomisation of GPs and a 1-year follow-up. The intervention introduced a COPD care bundle and aimed at enhancing collaboration between GPs and practice assistants. The control group continued usual care. The primary outcome measure was the composite score from nine key elements of COPD care measured at the patient level.We enrolled 35 GPs and 216 patients with a median age of 69 years, 59% female, 69% Global Initiative for Chronic Obstructive Lung Disease group A or B. After 1 year, the between-group difference in change of the primary outcome measure was +2.2 (95% CI +1.5- +2.9) in favour of the intervention group. The intervention was associated with significantly higher implementation rates in seven out of nine key elements of care.Disease management using a COPD care bundle increased the implementation of key elements of COPD care in general practice.

Effects of the "Living well with COPD" intervention in primary care: a comparative study.

The pivotal objective of chronic obstructive pulmonary disease (COPD) self-management programmes is behaviour change to avoid moderate and severe exacerbations and improve health related quality of life.In a prospectively planned, controlled study, COPD patients who participated in the "Living well with COPD" (LWWCOPD) self-management intervention were compared with usual care patients from the primary care COPD Cohort ICE COLD ERIC, who did not receive self-management intervention (NCT00706602) The primary outcome was behaviour change and disease-specific health related quality of life after 1 year. Secondary end-points included exacerbation rates. We calculated mixed linear, zero-inflated negative binomial and logistic regression models and used propensity scores to counteract confounding.467 patients, 71 from the LWWCOPD and 396 from the usual care cohort, were included. The differences between intervention and control were 0.54 (95% CI 0.13-0.94) on the Chronic Respiratory Questionnaire domain "mastery", 0.55 (95% CI 0.11-0.99) on "fatigue", 0.54 (0.14-0.93) on "emotional function" and 0.64 (95% CI 0.14-1.14) on "dyspnoea". The intervention considerably reduced the risk of moderate and severe exacerbations (incidence rate ratio 0.36, 95% CI 0.25-0.52).Self-management coaching in primary care improves health-related quality of life and lowers exacerbation rates and health care use.

Acute exacerbated COPD: room for improvement in key elements of care.

INTRODUCTION: Hospitalizations because of acute exacerbated COPD (AECOPD) are a major burden to patients and the health care system. Interventions during acute and post-acute hospital care exist not only to improve short-term outcomes but also to prevent future exacerbations and disease progression. We aimed at measuring the implementation rates of acute and post-acute hospital care interventions for AECOPD. METHODS: We performed 24 months (January 1, 2012, to December 31, 2013) retrospective medical chart review of consecutive cases hospitalized to one of three public hospitals in the canton of Zurich due to AECOPD. Implementation rates of five acute care and seven post-acute care interventions were assessed. RESULTS: Data from 263 hospitalizations (61% male, mean age 68.5 years, 47% active smokers) were analyzed. The median length of stay was 9 days (interquartile range [IQR] 6-12 days). In all, 32% of hospitalizations were caused by individuals with previous hospitalizations because of AECOPD. Implementation rates of four acute care interventions were >75% (lowest was appropriate antibiotic therapy with 56%). Compared to this, implementation rates of five post-acute care interventions were <25% (lowest was patient education and self-management advice with 2%). CONCLUSION: The results of this audit revealed room for improvement mainly in post-acute care interventions for AECOPD.

The Impact of Case Finding on the Recruitment Yield for COPD Research in Primary Care: An Observational Study.

BACKGROUND: Recruiting patients for research in primary care is difficult with diseases that tend to remain underdiagnosed, such as chronic obstructive pulmonary disease (COPD). Researchers may consider introducing case finding into patient recruitment, but the impact on recruitment yield is largely unknown. OBJECTIVES: To assess the impact of case finding on recruitment yield and population characteristics in primary care-based COPD research. METHODS: For a cluster randomized controlled trial of COPD in primary care, an opportunistic case finding strategy was introduced into patient recruitment, in addition to recruiting patients with previously diagnosed COPD. The recruitment process and performance of the primary care physicians (PCPs) were analysed. The numbers and characteristics of patients identified by case finding were compared with those of patients with previously diagnosed COPD. RESULTS: Thirty-five PCPs approached 398 patients and successfully recruited 216 patients during 1 year. The mean number of patients recruited was 6.3 (range 0-16) per PCP. Case finding contributed 71 patients (32.9%) with significantly milder disease, with FEV1 % predicted +16.7 (95% CI: +11.3 to +22.0), a COPD Assessment Test difference of -4 points (95% CI: -2 to -6; p < 0.001), and fewer exacerbations resulting in a higher rate of GOLD class A (85.9 vs. 45.5%; p < 0.001). The smoking rate was significantly higher among patients with newly diagnosed COPD (70.4 vs. 48.6%; p = 0.002). CONCLUSION: Case finding increased the number of patients recruited by 50%. The COPD patients identified by case finding differed importantly from those with previously diagnosed COPD. Researchers should be aware of COPD underdiagnosis and the potential impact of case finding during patient recruitment.

Performance Measures in the Management of Chronic Obstructive Pulmonary Disease in Primary Care--A Retrospective Analysis.

RATIONALE: Adherence to recommendations regarding quality of care for chronic obstructive pulmonary disease (COPD) improves outcome of patients. Performance measures (PM) reflect the quality of care but information about documentation of PM in primary care, is scant. AIM: To investigate the documentation of COPD PM in primary care practices of the Canton Zurich. METHOD: Twelve months retrospective medical chart review with physician of patients diagnosed COPD. PM were assessed by calculating the percentages of documented performance parameters. In addition, PM were compared with a practice running a structured COPD program. RESULTS: Data from 14 practices, total 115 patients, 57% male, mean age 68 (44­93) years, 46% active smokers, median pack-years 56 (range 22­150) were analyzed. Comorbidities were documented in 73%, GOLD grading in 70% (GOLD I 11%, GOLD II 64%, GOLD III 21%, GOLD IV 4%). On average, patients were reported to have 1,4 exacerbations/year. Documentation of PM ranged between 16% (written action plan for exacerbations) and 95% (smoking status). Documentation was identified for smoking cessation advice (74%), influenza vaccination/recommendation (49%), adequate pharmacotherapy (65%), inhalation instruction (57%), pulmonary rehabilitation advice (27%), collaborative care (60%) and proactive follow up (51%). The practice running the COPD program showed significant better documentation for all PM (p<0,01) but for influenza vaccination. CONCLUSION: In Swiss primary care gaps in documentation and tracking of COPD performance exist. Identifying and bridging these gaps is central for health care quality.