The experience of cancer cachexia: A qualitative study of advanced cancer patients and their family members

Background
Cachexia in advanced malignancy is a debilitating syndrome which contributes to approximately two million deaths worldwide annually. In spite of advances in understanding the biomedical aspects of cancer cachexia, little attention has been paid to exploring its holistic impact on patients and those who care for them.

Objective
The aim of this paper is to describe the lived experience of cachexia from the perspective of patients with cancer and their family members.

Design
An interpretative phenomenological approach was employed.

Setting and participants
A purposive sampling strategy recruited 15 patients and 12 family members from the Regional Cancer Centre in Northern Ireland.

Method
Each participant was interviewed during 2004/2005 using an unstructured interview. All interviews were recorded and transcribed verbatim. Analysis combined a two stage approach using thematic and interpretative phenomenological analysis.

Results
Analysis generated six superordinate themes that reflected the complex dynamics of the cachexia experience. Themes were: physiological changes in appetite; visuality of cachexia; weight loss interpreted as a bad sign; response from health care professionals; conflict over food; and coping responses.

Conclusions
Findings confirmed that cancer cachexia has far reaching implications for patients and their families, extending beyond physical problems into psychological, social and emotional issues. This insight is a critical first step in the development of more responsive care for these clients.

An exploration of the experience of cancer cachexia: What patients and their families want from health care professionals

The aim of this paper is to investigate the perceptions of patients and family members with regard to care received for cancer cachexia. A qualitative study recruited 27 participants, of which 15 were patients with advanced cancer who had primary cachexia and 12 were family members. Participants were recruited from a regional cancer centre in the UK. All participants took part in a domiciliary interview, which was transcribed verbatim for analysis. A major finding from analysis was ‘lack of response from health care professionals’ in relation to cancer cachexia management. This finding illuminated that patients and their family members wanted three things from healthcare professionals. They wanted their profound weight loss acknowledged, they wanted information about it and why it was happening and they wanted interventions to deal with it. This paper provides powerful messages for healthcare professionals and highlights the needs of patients and their family regarding cancer cachexia management. Patients and their families want this problem addressed by healthcare professionals. This client group requires supportive healthcare interventions, so that they can understand the nature and impact of this syndrome.

Cancer Cachexia Care: The Contribution of Qualitative Research to Evidence-Based Practice

Background: Despite its prevalence and prognostic impact, primary cachexia is not well understood. Its potential to cause considerable psychological stress indicates the need for qualitative research to help understand the perspectives of those affected.

Objective: The aims of this study were to describe the perspectives of patients with primary cachexia, of their relatives, and of the healthcare professionals involved in their care and to demonstrate how this evidence can be applied in practice at 4 different levels of application ranging from empathy to coaching.

Methods: A review of the qualitative literature and empirical qualitative investigation was used to understand the experiences of patients and relatives and the perspectives of professionals.

Results: The main worries expressed by patients and relatives concerned appetite loss, changing appearance, prognosis, and social interaction. We also describe their coping responses and their views of professionals’ responses. The main concerns of professionals related to poor communication, lack of clinical guidance, and lack of professional education.

Conclusions: Understanding patients’, families’, and professionals’ perspectives, and mapping that understanding onto what we know about the trajectory and prognosis of the condition, provides the evidence base for good practice. Qualitative research has a central role to play in providing the knowledge base for the nursing care of patients with cachexia.

Implications for Practice: The evidence provided can improve nurses’ insight and assist them in assessment of status, the provision of guidance, and coaching. There is a need for the development of a holistic, information-based integrated care pathway for those with cancer cachexia and their families.

Thalidomide for managing cancer cachexia [review paper]

Cancer cachexia is a multidimensional syndrome characterised by wasting, loss of weight, loss of appetite, metabolic alterations, fatigue and reduced performance status. A significant number of patients with advanced cancer develop cachexia before death. There is no identified optimum treatment for cancer cachexia. While the exact mechanism of the action of thalidomide is unclear, it is known to have immunomodulatory and anti-inflammatory properties, which are thought to help reduce the weight loss associated with cachexia. Preliminary studies of thalidomide have demonstrated encouraging results. This review aimed to (1) evaluate the effectiveness of thalidomide, and (2) identify and assess adverse effects from thalidomide for cancer cachexia. Electronic searches were undertaken in CENTRAL, MEDLINE, EMBASE, Web of Science and CINAHL (from inception to April 2011). Reference lists from reviewed articles, trial registers, relevant conference documents and thalidomide manufacturers identified additional literature. This review included randomised controlled trials (RCTs) and non-RCTs. Participants were adults diagnosed with advanced or incurable cancer and weight loss or a clinical diagnosis of cachexia who were administered thalidomide. All titles and abstracts retrieved by electronic searching were downloaded to a reference management database. Duplicates were removed and the remaining citations were read by two review authors and checked for eligibility. Studies that were deemed ineligible for inclusion had clear reasons for exclusion documented. Data were extracted independently by two review authors for all eligible studies. While a meta-analysis was planned for this review, this was not possible due to the small number of studies included and high heterogeneity among them. Thus a narrative synthesis of the findings is presented. The literature search revealed a dearth of large, well conducted trials in this area. This has hindered the review authors' ability to make an informed decision about thalidomide for the management of cancer cachexia. At present, there is insufficient evidence to refute or support the use of thalidomide for the management of cachexia in advanced cancer patients. The review authors cannot confirm or refute previous literature on the use of thalidomide for patients with advanced cancer who have cachexia and there is inadequate evidence to recommend it for clinical practice. Additional, well conducted, large RCTs are needed to test thalidomide both singularly and in combination with other treatment modalities to ascertain its true benefit, if any, for this population. Furthermore, one study (out of the three reviewed) highlighted that thalidomide was poorly tolerated and its use needs to be explored further in light of the frailty of this population