Holistic services for people with advanced lung disease

9th August 2019

Researchers at the Cicely Saunders Institute have published research in NIHR journal Health Services and Delivery Research showing that holistic services are highly valued by patients and improve distress caused by breathlessness and depression. Not only did patients report less distress they also reported better mastery of their breathlessness.   This was irrespective of their precise lung diagnosis, how well or badly their lungs functioned, and what phase of illness they were experiencing and the level of their general health.  Patients highlighted the need for improved access to person-centred, multiprofessional breathlessness services and support for informal carers.

Breathlessness is a common and distressing symptom of many advanced diseases, affecting around 2 million people in the UK. Breathlessness increases with disease progression and often becomes chronic or refractory. Breathlessness-triggered services that integrate holistic assessment and specialist palliative care input as part of a multiprofessional approach have been developed for this group, offering tailored interventions to support self-management and reduce distress.

Researchers synthesised evidence on holistic breathlessness services for people with advanced disease and chronic or refractory breathlessness. The objectives were to describe the structure, organisation and delivery of services, determine clinical effectiveness, cost-effectiveness and acceptability, identify predictors of treatment response, and elicit stakeholders’ evidence-based priorities for clinical practice, policy and research.

They carried out a mixed-methods evidence synthesis comprised of three components: (1) a systematic review to determine the clinical effectiveness, cost-effectiveness and acceptability of holistic breathlessness services; (2) a secondary analysis of pooled individual data from three trials to determine predictors of clinical response; and (3) a transparent expert consultation (TEC), comprising a stakeholder workshop and an online consensus survey, to identify stakeholders’ priorities.

Researchers found 37 papers reporting on 18 holistic breathlessness services to include in their systematic review. Most studies enrolled people with thoracic cancer, were delivered over 4–6 weeks, and included breathing training, relaxation techniques and psychological support. Meta-analysis demonstrated significant reductions in the Numeric Rating Scale (NRS) distress due to breathlessness, significant reductions in the Hospital Anxiety and Depressions Scale (HADS) depression scores, and non-significant reductions in the Chronic Respiratory Disease Questionnaire (CRQ) mastery and HADS anxiety, favouring the intervention.

Recipients valued education, self-management interventions, and expertise of the staff in breathlessness and person-centred care. Evidence for cost-effectiveness was limited and inconclusive. The responder analysis (n = 259) revealed baseline CRQ mastery and NRS distress to be strong predictors of the response to breathlessness services assessed by these same measures, and no significant influence from baseline breathlessness intensity, patient diagnosis, lung function, health status, anxiety or depression. The TEC elicited 34 priorities from stakeholders. Seven priorities received high agreement and consensus, reflecting stakeholders’ (n = 74) views that services should be person-centred and multiprofessional, share their breathlessness management skills with others, and recognise the roles and support needs of informal carers.

Maddocks M, Brighton LJ, Farquhar M, Booth S, Miller S, Klass L, Tunnard I, Yi D, Gao W, Bajwah S, Man W D & Higginson I J. Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis. Health Serv Deliv Res 2019;7(22) https://doi.org/10.3310/hsdr07220