Breathless Clinic - working together to defeat breathlessness in chronic obstructive pulmonary disease (COPD)

The intervention is the implementation of the Breathless Clinic (BC), a nine weeks’ programme to manage refractory breathlessness. The intervention duration is planned for a period of 12 months, so as to minimise the impact of seasonal variation on our results. The follow up duration comprises 12 months (from initial enrolment in clinic). Following assessment, review and optimisation of pharmacotherapies, non-pharmacologic treatment interventions will commence and further investigations and referrals will be undertaken as required. The most crucial aspect of BC, is to provide coaching for dyspnoea self-management and daily coping strategies for survival in the domestic setting or community; for example, breathing techniques, posture, fans and self-talk (offered through senior specialist respiratory nursing colleagues) and the strategies provided to improve efficiency and therefore manage breathlessness during day-to-day activities, tailored for individual patients in the home setting, by our physiotherapy and occupational therapy clinicians. These aspects may allow for greater independence and participation in community activities. "Home visits" and standard clinic visits will usually occur face to face but may also utilise telephone or videoconference depending on the patient circumstances and preferences. Non-pharmacologic breathlessness interventions (examples): Beliefs • Validation of breathlessness • Clarifying mistaken beliefs (breathlessness is not always due low oxygen levels, breathlessness itself is not dangerous) • Motivational interviewing Strategies • Hand-held, battery-operated fan • “Breathing around the rectangle”, “flickering the candle” (single breath) • Other breathing techniques (breathing pattern) – paced or diaphragmatic breathing, “blow as you go” • Positions to relieve breathlessness Training • Walking program (supported by use of a pedometer) Aids/efficiency • four-wheel walker/ shower chair • Energy conservation (save energy on what you must do, so that you have some spare to participate in activities that you enjoy). • Home modifications • Referral to dietitian if underweight/ malnourished Education and Self-management • Written breathlessness action plans* (3 Fs - lean Forward, Focus on breath out, Fan; 3Ps - Pause, Purse lips, Position) • Written COPD exacerbation action plan** (guide of what to do in an exacerbation) • Breathlessness DVD*** – reinforces key interventions to relieve breathlessness • Relaxation CD*** Miscellaneous • Sputum clearance techniques • Carer support • Management of incontinence BC schedule The clinic itself comprises eight to nine healthcare interactions over nine weeks, with most interactions occurring within the patient’s home; Week 1 (patient’s home) – Initial assessment, Respiratory Nurse, research assistant Week 2 (outpatient clinic) – Formulate Management Plan, Multidisciplinary Team Week 3 (patient’s home) – Physiotherapist Week 4 (patient’s home) – Occupational Therapist (as required) Week 5 (patient’s home) – Respiratory Nurse Week 6 (patient’s home) – Physiotherapist Week 7 (patient’s home) – Respiratory Nurse Week 8 (patient’s home) – Final assessments, research assistant Week 9 (outpatient clinic) – Closure and follow up arrangements, Multidisciplinary Team Clinical items to be reviewed/assessed at BC visits 1 and 2 1) Heart rate, blood pressure, respiratory rate and oxygen saturation 2) Electrocardiogram (ECG) or transthoracic echocardiogram within 12 months, if available 3) Height and weight 4) Most recent measures: a) spirometry or complex lung function within previous 12 months b) inflammation (white cell count and differential, C-reactive protein) within previous 12 months c) cardiac biomarkers (high sensitivity Troponin T, NT-proB-type Natriuretic Peptide) within previous 12 months d) microbiology (any positive gram stains, cultures and available antibiotic sensitivities, any positive respiratory viral screens within previous 12 months) e) 6 minute walk test (6MWT), if available, within 12 months 5) Comorbidities and current medications 6) Mini Nutritional Assessment (MNA) 7) Eating Assessment Tool (EAT-10) 8) Exacerbation history 9) Healthcare visit data 10) COPD action plan Clinic team: Specialist Respiratory Physician, Specialist Respiratory Nurse, Senior Physiotherapist (with experience running pulmonary rehabilitation program), Senior Occupational Therapist. The clinic team will deliver the intervention as per the clinic program above. The team may also include general practitioner, senior registrars in Cardiology and Respiratory Medicine All clinic interactions will ideally involve a single participant and their partner/carer (if relevant). The sessions will last 30 - 120 minutes. Since BC is part of the clinic services of our hospital, each clinic interaction will be recorded within each subject's electronic medical record (EMR). Compliance for some individualised BC components will be assessed (for example step counts measured by pedometer for patients receiving exercise recommendations to achieve a goal daily step count). However, for the most part, the assessment of adherence to clinic recommendations will be subjective (by patient report) and captured during the post-clinic interviews collecting qualitative data, along with the patients' perception of which clinic interventions were most and least helpful for managing their breathlessness. * Written breathlessness action plans, resources originally developed by Cambridge Breathlessness Intervention Service and distributed via their education seminars, then adapted for use in Westmead Hospital's breathlessness clinic service (used with permission) ** COPD action plan, readily available free resource from Lung Foundation Australia, routinely used in clinical practice *** Breathlessness DVD, developed for breathlessness clinics at Westmead Hospital and used with permission. *** Relaxation CD, developed for breathlessness clinics at Westmead Hospital and used with permission. (Neither CD nor DVD were used as planned during the intervention due to most participants not having access to CD/DVD players, an issue that was not anticipated prior to commencing the trial) Note: Westmead Hospital's Breathlessness Clinic service has provided collaboration and mentorship in developing/designing the clinic used in this intervention, which has been adapted to the Campbelltown Hospital setting. Associated Investigator TS is also a lead clinician within the Westmead Hospital breathlessness service.