The importance of communication about cachexia as experienced by patients and caregivers: A qualitative cross-cultural study.

Abstract

37 Background: Cancer Anorexia-Cachexia Syndrome (CACS) is a multifactorial condition defined by an ongoing loss in body weight that cannot be fully reversed through conventional nutritional support and leads to progressive functional impairment. This condition has for a long time been misrecognized and underdiagnosed. Furthermore, the burden of CACS as experienced and depicted by patients and caregivers has not been deeply explored so far. Methods: This was a narrative qualitative cross-cultural study (IT, ES, UK, DE, US) based on the collection of 30 weekly emotional diaries followed by 30 semi-structured in-depth interviews to caregivers (i.e. relatives, partners, close friends) of patients diagnosed with CACS. The aim was to understand how the disease is experienced by patients and caregivers, their feelings and unmet needs. Results: Caregivers and patients demonstrate a poor knowledge of CACS: while they spontaneously refer to a pattern of CACS symptoms, they do not verbalize the term “cachexia”. The awareness and levels of engagement in managing CACS by caregivers appear to be dependent on the degree and timing of communication on this condition with the physician: those who express a higher sense of powerlessness and despair also report that their doctor has never explicitly mentioned CACS, nor indicated any strategies to manage it. On the other hand, those who appear more confident and engaged in managing CACS report a more detailed and earlier communication on the subject. Conclusions: Scarce and/or late communication on CACS and its management options with patients and caregivers may result in a sense of powerlessness and ignorance on how to manage its symptoms. In line with the recently reported importance of an early CACS recognition [(Aapro M et al, Ann Oncol (2014). 2014 May 2)], an earlier and thorough discussion about CACS with patients and caregivers would improve their level of engagement and help relieve some of their distress.