Palliative care symptom management expertise for long-COVID

Persistence of symptoms after the acute phase of COVID19 is well recognised, termed postCOVID syndrome or longCOVID. Up to a third of people experience ongoing symptoms such as breathlessness, fatigue and chest pain, and symptom severity is largely unrelated to the severity of the initial infection. 2 The cause of these intractable symptoms is not yet well understood, although there appears to be an association with systemic inflammation. Health professionals working in palliative care are expert in the management uncontrolled symptoms when the underlying condition cannot be changed or is unknown. Dedicated symptomdirected breathlessness services or clinics, predominantly embedded within palliative care services, have developed to support the many people suffering from intractable breathlessness. These evidencebased, holistic, multidisciplinary services care mostly for people with lifelimiting conditions, such as advanced cancer and cardiorespiratory disease. In April 2020, when health services were stretched by the rapidly escalating pandemic, the Cambridge Breathlessness Intervention Service started to support people with ongoing postCOVID19 symptoms, in response to significant unmet patient need. To the best of our knowledge, this is the first time a palliative carebased service has managed the chronic consequences of a communicable disease. We have recently evaluated this novel practice. Ninetyseven patients, with either confirmed or clinically likely past COVID19 infection, were seen by the service between May 2020 and December 2021. Patients’ mean age was 51 years (range 23–87) and most were women (67%). Other than asthma (27%), few had chronic respiratory conditions (9%) prior to developing longCOVID. As well as experiencing breathlessness (96% at the time of first assessment), we found that fatigue, chest pain or discomfort, and anxiety were the most prevalent concurrent symptoms, in 68%, 28% and 21%, respectively. The median time from symptom onset to referral was 195 days (range 5–578). Patients received care for a mean of 99 days with a median of 4 clinical contacts (range 1–23). Consultations were mostly conducted by telephone (70%) and video (26%), with some home visits (4%) due to clinical need or patient preference. We delivered our service’s standard intervention to this new patient cohort, based on our Breathing, Thinking, Functioning clinical model. This model (figure 1) conceptualises vicious cycles of instinctive emotional and behavioural responses to chronic breathlessness that can inadvertently perpetuate the symptom. It provides a rationale and structure for individually tailored symptom management; nonpharmacological breathlessness selfmanagement techniques can break the cycles, and the choice of intervention is influenced by the predominant cycle(s) experienced by a patient. The interventions used most commonly for the longCOVID patients were: breathing techniques (78% of patients), support to be active (77%) relaxation techniques (60%), energy conservation (60%), mindfulness (49%) and use of a handheld fan (35%). Among those who received support to be active, this involved exercise counselling (such as encouragement to use online videos, 61%), homebased exercises (47%), a walking programme (39%) and use of an activity diary (35%). Routinely collected clinical outcome measures improved significantly during the intervention. Breathlessness severity, confidence in the ability to manage breathlessness and the severity of breathlessnessassociated emotion were each measured using a 1–10 numerical rating scale and, when there was data from two or more time points, first and last measures were compared using paired ttests. Breathlessness severity reduced by 2.3 (t(50)=7.4 p<0.001) and confidence improved by 1.2 (t(48)=5.2 p<0.001). The main breathlessnessrelated emotions were frustration (28%), anxiety/ worry/fear/terror (11%) and ‘angry/annoyed’ (7%); the severity of the emotion improved by 2.2 (t(48)=6.1 p<0.001). Fatigue severity reduced by 2.2 (t(20)=3.4 p=0.003). Change in physical activity across the intervention was