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Do patients and carers agree on symptom burden in advanced COPD?

Emma Mi, Ella Mi, Gail Ewing, et al. (on behalf of the Living with Breathlessness Study Team)
Int J Chron Obstruct Pulmon Dis 2018;13:969–77

Patients with advanced chronic obstructive pulmonary disease (COPD) exhibit a range of symptoms. Informal carers capable of accurately assessing these symptoms can enhance their ability to judge the appropriate level of support required by a patient in their home. However, inaccurate assessment could lead to overtreatment or inadequate symptom control. The extent of agreement between patients and carers has been extensively studied in cancer, but few studies have been undertaken in COPD or in population-based settings.

In this prospective, cross-sectional analysis of 119 patients living with advanced COPD, alongside their carers, the Living with Breathlessness Study Team reports on agreement between patients and carers on symptoms and factors associated with disagreement. Six symptoms representing physical and psychological aspects were considered: breathlessness, fatigue, anxiety, depression, constipation and diarrhoea.

The study reported fair-to-moderate agreement between patients and carers, but poorer agreement for less observable, more subjective symptoms. Carers who estimated a greater burden of symptoms for patients had less patient-centred contact, more symptoms of anxiety and depression themselves, and had a range of unmet carer support needs. The study identified the need for a more open dialogue between patients and their carers. It also suggests a need to screen for and address psychological morbidities in patients with advanced COPD and in their carers, and to address unmet support needs in carers.

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