4 minute read
Breathless Clinic: Working together to defeat breathlessness
by IN-SPHERE
Breathing. It’s something most of us take for granted but for people suffering from Chronic Obstructive Pulmonary Disease (COPD), breathing is often a complex challenge.
By Dr Renecia Lowe
Breathlessness is a distressing and incapacitating symptom that leads to poor quality of life and loss of independence. The resulting burden is often underestimated, leading to significant healthcare and personal costs. Patients who have persistent breathlessness (called ‘chronic refractory dyspnoea’) feel that there is not enough awareness or provision within healthcare services to address this burden effectively.
For those with COPD, breathlessness means an even worse prognosis and further demands on healthcare services. Whilst medications have an important role, nonpharmacological interventions to help manage breathlessness are starting to emerge.
Dr Belinda Cochrane, a Staff Specialist in Respiratory & Sleep Medicine at Camden and Campbelltown Hospitals in Sydney and member of SPHERE’s Respiratory, Sleep, Environmental and Occupational Health Clinical Academic Group (RSEOH CAG), is leading the coordination of Macarthur Health’s ‘Breathless Clinic.’ This homebased program aims to transform the overall experience for COPD patients who suffer from chronic breathlessness, by working with them to develop individualised coping strategies within their own homes and communities. Her team comprises multidisciplinary clinicians across South Western Sydney Local Health District, including a specialist physiotherapist, specialist respiratory nurse and occupational therapist.
Breathless Clinic involves a nine-week program for a participant to help manage their chronic breathlessness. Following assessment, review and optimisation of pharmacotherapies, further investigations and referrals are undertaken as required. Evidence-based non-pharmacological interventions then commence and are refined to meet each patient’s specific needs week-to-week by the team clinicians, working together with the patients in their homes. These nonpharmacologic interventions provide instruction for self-management and daily coping strategies.
“We are ultimately taking a three-pronged approach,” Dr Cochrane explains. “We ensure appropriate guideline-based therapy for COPD initially, whilst facilitating access to those aspects of care that are less available or more challenging and daunting for patients disabled by breathlessness. Secondly, we investigate and address any coexistent conditions that contribute to breathlessness. Third, we focus on developing skills to augment dayto-day coping ability in the home environment, guiding the patient and carers on aspects such as selfmanagement.”
Evaluating the program’s efficacy
Dr Cochrane’s team are also determining if COPD patients find the Breathless Clinic Program helpful and, if so, what characteristics are amongst those who benefit. Through this evaluation they are looking at the program’s impact on breathlessness (namely, the patients’ ability to cope) and healthcare outcomes such as the frequency of breathlessness attacks and unplanned use of healthcare. Twelve months’ follow-up data will provide further information about the sustainability of outcomes. The team are also seeking feedback from patients and carers to inform service development.
“We originally developed this program under mentorship from Westmead Hospital’s Breathlessness Clinic Team, some of whom are researchers involved with this project,” explains Dr Cochrane.
“However, the outbreak of the COVID-19 pandemic in 2020 and the ensuing major disruptions to healthcare services and social frameworks meant significant delays and radical changes to how things were done. From the pervasive infection control measures to managing clinic schedules and staffing when patients, clinicians, or their families were unwell, the Breathless Clinic Program had to adapt and adopt pragmatic compromise solutions to keep the service afloat.”
This study which commenced in 2022, achieved the recruitment target of 92 patients in February 2023 with data collection ongoing until early 2024. The subject population have completed the Breathless Clinic Program and provided qualitative feedback via interviews. Patients participating in the program have severely impaired lung function, high symptom burden with comorbid anxiety and depression.
“Whilst the preliminary results might look promising, it remains to be seen whether this translates to sustained benefits and overall improved healthcare outcomes,” says Dr Cochrane.
“The final results of the study will be highly informative for health services beyond the local area. They will have implications for patient selection, funding and resource planning,” says Dr Cochrane.
“We look forward to making a real transformative impact on an issue which has burdened Sydney health services and our local community for a long time.”
Dr Cochrane and team acknowledge Glaxo Smith Kline (GSK) for funding this project as part of their Investigator Sponsored Grant Scheme. GSK has had no role in project design, nor any input in ongoing data analyses and results reporting.
COPD: a new approach
Many patients with COPD struggle with chronic breathlessness and poor quality of life, requiring hospitalised care during attacks of extreme breathlessness termed ‘exacerbations.’ Moreover, they face challenges to accessing effective non-pharmacologic care interventions recommended in national and international guidelines (interventions such as pulmonary rehabilitation and psychotherapy). Addressing breathlessness from a multidimensional perspective both targets the disease and supports the patient using pharmacological and evidence-based non-pharmacological interventions towards the best possible outcomes.
