Joanne Reid

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.

Fighting over food: patient and family understanding of cancer cachexia.

PURPOSE/OBJECTIVES To investigate tensions over food that exist between patients with advanced cancer with cachexia and their families. RESEARCH APPROACH Heideggerian phenomenologic inquiry using unstructured interviews. SETTING A regional cancer center in the United Kingdom. PARTICIPANTS 8 patients with advanced cancer living with cachexia and 8 family members. METHODOLOGIC APPROACH Singular unstructured interviews were recorded digitally, transcribed verbatim, and analyzed using thematic and interpretative phenomenologic analysis. MAIN RESEARCH VARIABLES Cachexia and advanced cancer. FINDINGS A fine line existed between offering food to a patient and forcing a patient to eat; often, conflict arose as a result. Contributors to that conflict focused on reduced dietary intake by the patient and the reaction to food refusal by the family, which frequently led to patients eating to please. CONCLUSIONS This study highlights the anxiety that surrounds eating and the distress it causes to patients and their families. This strain can escalate into arguments over food, causing negative repercussions for patients and their family members. INTERPRETATION This is the first study to uncover tensions about eating as experienced by patients with advanced cancer and cachexia and their families. Nurses must consider this issue when designing and delivering effective care for this patient population.

An exploration of the experience of cancer cachexia: what patients and their families want from healthcare professionals

REID J., Mc KENNA H.P., FITZSIMONS D. & Mc CANCE T.V. (2010) European Journal of Cancer Care19, 682–689 An exploration of the experience of cancer cachexia: what patients and their families want from healthcare 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.

Non-steroidal anti-inflammatory drugs for the treatment of cancer cachexia: A systematic review

Background: Cancer cachexia is a devastating syndrome of advanced malignancy which negatively impacts on patients’ morbidity, mortality and quality of life. Chronic inflammation is a key characteristic of cancer cachexia. Therefore, non-steroidal anti-inflammatory drugs (NSAIDs) may be able to break the cycle of cachexia. Aim: To systematically review the literature on the use of NSAIDs for the treatment of cachexia in advanced cancer patients. Design: All titles retrieved through searching were downloaded to a reference management database, duplicates were removed and the remaining citations were checked for eligibility. Full copies of all eligible articles were obtained and reviewed. Data sources: Electronic searches (from inception up to 09/2011) included CINAHL, MEDLINE, EMBASE, and Web of Science. Reference lists from reviewed articles, trial registers and abstracts from relevant conferences were searched. Eligibility criteria were (a) Randomised Controlled Trial; (b) participants were adults with cancer with weight loss or a clinical diagnosis of cachexia; (c) administration of oral NSAIDs. Results: Four studies were included. These studies provided some evidence of positive therapeutic effect on quality of life, performance status, inflammatory markers, weight gain and survival, but there was insufficient evidence demonstrated for their widespread use in practice. Conclusions: Insufficient studies have been performed to allow a conclusion to be formed with regard to the effectiveness of NSAIDs in the treatment of cachexia in advanced cancer. Major challenges in this patient cohort include the lack of uniformity of inclusion criteria across studies and the frailty of the patients recruited.

'Utility, Caller, and Patient Profile of a Novel Chemotherapy Telephone Helpline Service Within a Regional Cancer Centre in Northern Ireland'

Background: The telephone is an accepted and useful means of communication for the management of patient care. The Chemotherapy Telephone Helpline (CTH) service, located in a large inner-city Trust within the United Kingdom, is a unique nurse-led service within Northern Ireland. Objective: The objective of the study was to investigate the utility, caller, and patient profile of a novel CTH. Methods: This was a retrospective study of telephone contacts during 2007 to the CTH. Calls were categorized by caller and patient characteristics, reason for call, and subsequent action. Results: A total of 7498 calls were made to the CTH during 2007. Of these, 25.6% occurred outside 8AM-4PM. Callers included patients (45.8%), lay carers (31%), and health care professionals (20.5%); 35.2% of calls concerned patients with polysymptomatic problems; 36.8% of calls led directly to patients being medically assessed. Conclusions: The utility of the CTH service confirms the need of this nurse-led service. This service facilitates access to specialist advice and support for patients, their families, and allied health care professionals. Implications for Practice: The international significance of these findings for practice includes its demonstration of the multifaceted symptom experience of patients receiving chemotherapy and highlights the importance of rapid access to specialist cancer services for patients and their lay and professional carers. In addition, it demonstrates the capacity of helplines to identify gaps in professional skills and training.

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.

Psychosocial, educational and communicative interventions for patients with cachexia and their family carers.

Purpose of reviewCancer cachexia has a substantial impact on both patients and their family carers. It has been acknowledged as one of the two most frequent and devastating problems of advanced cancer. The impact of cachexia spans biopsychosocial realms. Symptom management in cachexia is fraught with difficulties and globally, there remains no agreed standard care or treatment for this client group. There is a need to address the psychosocial impact of cachexia for both patients and their family carers. Recent findingsPatients living at home and their family carers are often left to manage the distressing psychosocial impacts of cancer cachexia themselves. Successful symptom management requires healthcare professionals to address the holistic impact of cancer cachexia. High quality and rigorous research details the existential impact of cachexia on patients and their family carers. This information needs to inform psychosocial, educational and communicative supportive healthcare interventions to help both patients and their family carers better cope with the effects of cachexia. SummarySupportive interventions need to inform both patients and their family carers of the expected impacts of cachexia, and address how to cope with them to retain a functional, supported family unit who are informed about and equipped to care for a loved one with cachexia.

The impact of a simulated intervention on attitudes of undergraduate nursing and medical students towards end of life care provision

BackgroundThe concerns of undergraduate nursing and medical students’ regarding end of life care are well documented. Many report feelings of emotional distress, anxiety and a lack of preparation to provide care to patients at end of life and their families. Evidence suggests that increased exposure to patients who are dying and their families can improve attitudes toward end of life care. In the absence of such clinical exposure, simulation provides experiential learning with outcomes comparable to that of clinical practice. The aim of this study was therefore to assess the impact of a simulated intervention on the attitudes of undergraduate nursing and medical students towards end of life care.MethodsA pilot quasi-experimental, pretest-posttest design. Attitudes towards end of life care were measured using the Frommelt Attitudes Towards Care of the Dying Part B Scale which was administered pre and post a simulated clinical scenario. 19 undergraduate nursing and medical students were recruited from one large Higher Education Institution in the United Kingdom.ResultsThe results of this pilot study confirm that a simulated end of life care intervention has a positive impact on the attitudes of undergraduate nursing and medical students towards end of life care (p < 0.001).ConclusionsActive, experiential learning in the form of simulation teaching helps improve attitudes of undergraduate nursing and medical students towards end of life. In the absence of clinical exposure, simulation is a viable alternative to help prepare students for their professional role regarding end of life care.

The Possibility of Critical Realist Randomised Controlled Trials

BackgroundSome realists have criticised randomised controlled trials for their inability to explain the causal relations that they identify; to take into account the influence of the social context of the interventions they evaluate; and to account for individual difference. However, among realists, there is controversy over whether it is possible to improve trials by making them realist, or whether realism and the philosophical assumptions underlying trials are incompatible. This paper contributes to the debate in Trials on this issue. The debate thus far has concentrated on the possibility of combining trial methodology with that of realist evaluation.Main bodyWe concur with the contention that it is not feasible to combine randomised controlled trial design with the realist evaluation approach. However, we argue that a different variant of realism, critical realism, provides a more appropriate theoretical grounding for realist trials.In contrast to realist evaluation, which regards social mechanisms as an amalgam of social resources and people’s reasoning, critical realism insists on their distinction. It does so on the basis of its assertion of the need to distinguish between social structures (in which resources lie) and human agency (which is at least partly guided by reasoning). From this perspective, conceiving of social mechanisms as external to participants can be seen as a valid methodological strategy for supplementing the exclusive concentration of trials on outcomes.While accepting realist evaluation’s insistence that causality in open systems involves a configuration of multiple generative mechanisms, we adopt the critical realist interpretation of the experimental method, which sees it as creating artificial closure in order to identify the effects of specific causal mechanisms. If randomised controlled trials can be regarded as epidemiological proxies that substitute probabilistic controls over extraneous factors for closed experiments, their examination of the powers of discrete mechanisms through observation of the variation of outcomes is appropriate.ConclusionWhile there are still issues to be resolved, critical realist randomised controlled trials are possible and have the potential to overcome some of the difficulties faced by traditional trial designs in accounting for the influence of social context and individual interpretation.

Health care professionals’ experience, understanding and perception of need of advanced cancer patients with cachexia and their families: The benefits of a dedicated clinic.

BackgroundCachexia is defined as the on-going loss of skeletal muscle mass that cannot be fully reversed by conventional nutritional support. It is found in up to 80% of patients with advanced cancer and has profound psycho-social consequences for patients and their families. Previous studies demonstrate that many healthcare professionals receive little formal education in cachexia management leading them to feel that they have limited understanding of the syndrome and cannot intervene effectively. This study aims to examine the value of a dedicated cachexia clinic and its influence on staff understanding and practice.MethodsAn exploratory qualitative study was conducted. The study employed semi-structured interviews with a range of healthcare professionals responsible for designing and delivering cancer care in a large teaching hospital in Australia. This hospital had a dedicated cachexia clinic.ResultsIn-depth interviews were conducted with 8 healthcare professionals and senior managers. Four themes were identified: formal and informal education; knowledge and understanding; truth telling in cachexia and palliative care; and, a multi-disciplinary approach. Findings show that improved knowledge and understanding across a staff body can lead to enhanced staff confidence and a willingness to address cancer cachexia and its consequences with patients and their families.ConclusionComparisons with similar previous research demonstrate the advantages of providing a structure for staff to gain knowledge about cachexia and how this can contribute to feelings of improved understanding and confidence necessary to respond to the challenge of cachexia.