Healthcare professionals’ response to cachexia in advanced cancer: A qualitative study

Purpose/Objectives: To explore healthcare professionals' experience, understanding, and perception of the needs of patients with cachexia in advanced cancer.

Research Approach: A qualitative approach based on symbolic interactionism.

Setting: A regional cancer center in a large teaching hospital in the United Kingdom.

Participants: 34 healthcare professionals who had experience providing care to patients with cachexia in advanced cancer.

Methodologic Approach: Data collection consisted of two phases: focus group and semistructured interviews. Interviews were digitally recorded and transcribed verbatim for analysis. This article reports on findings from the second phase of data collection.

Findings: Analysis revealed that professional approaches to cachexia were influenced by three overarching and interthinking themes: knowledge, culture, and resources. Healthcare professionals commonly recognized the impact of the syndrome; however, for nonpalliative healthcare professionals, a culture of avoidance and an overreliance on the biomedical model of care had considerable influence on the management of cachexia in patients with advanced cancer.

Conclusions: Cachexia management in patients with advanced cancer can be difficult and is directed by a variable combination of the influence of knowledge, culture of the clinical area, and available resources. Distinct differences exist in the management of cachexia among palliative and nonpalliative care professionals.

Interpretation: This study presented a multiprofessional perspective on the management of cachexia in patients with advanced cancer and revealed that cachexia is a complex and challenging syndrome that needs to be addressed from a holistic model of care.

Knowledge Translation: Cachexia management in patients with advanced cancer is complex and challenging and is directed by a combination of variables. An overreliance on the biomedical model of health and illness occurs in the management of cachexia in patients with advanced cancer. Cachexia needs to be addressed from a holistic model of care to reflect the multidimensional needs of patients and their families.

Evaluation of a Psychoeducational intervention for patients with Advanced Cancer who have Cachexia and their lay Carers (EPACaCC): study protocol

Aim: To evaluate a psychoeducational intervention for patients with advanced cancer who have cachexia and their lay carers.

Background: Cachexia is a frequent and devastating syndrome of advanced cancer. It has an impact on patients biologically, psychologically and socially and has profound impact on their lay carers. Prior research has predominately focused on the biological components of cachexia and associated potential treatment modalities. At present, there is no standardized supportive healthcare intervention in current practice that targets the psychosocial impact of this syndrome.

Design: A pragmatic multicentre randomized controlled trial.

Methods: Patient/carer dyads (n = 200) will be recruited into a randomized controlled trial of a DVD intervention for cachexia management. The sample will be recruited from two urban hospices in the UK. The primary outcome measure will be the General Health Questionnaire-12. Additional questionnaires focusing on distress, readiness to give care and coping skills will be used as secondary outcome measures. In addition, lay carers in the intervention group will be asked to participate in semi-structured interviews following the death of their loved one. Both Office for Research Ethics Committee approval and local governance approval at both hospices have been obtained as of February 2013.

Discussion: This is the first time that a psychoeducational DVD has been tested in a randomized controlled trial in this population. Dissemination of findings will make a significant contribution to international knowledge and understanding in this area. Findings will inform education, practice and policy.

Healthcare professionals’ response to cachexia in advanced cancer

Background: Cancer cachexia is a complex metabolic syndrome characterised by severe and progressive weight loss which is predominantly muscle mass. It is a devastating complication of advanced cancer with profound bio-psycho-social implications for patients and their families. At present, there is no curative treatment for cachexia in advanced cancer therefore, the most important healthcare response entails the minimisation of the psycho-social distress associated with it. However, the literature suggests healthcare professionals’ are missing opportunities to respond to the multi-dimensional needs of this population.

Aim: The objective of this study was to explore healthcare professionals’ experience, understanding and perception of need of patients with advanced cancer who have cachexia and their families.

Methods: An interpretative qualitative approach based on symbolic interactionism was adopted. A purposive sample of doctors, nurses, specialist nurses, and dieticians were recruited from a cancer centre in a large teaching hospital in Northern Ireland. Data collection consisted of two phases: focus group interviews followed by individual semi-structured interviews.

Results: Findings from the focus group interviews were used as a framework for the semi structured interview schedule. Results centred on the influence of a variable combination of knowledge, culture, and resources on the management of cachexia in advanced cancer. Data revealed that variation in healthcare professionals’ perceptions of cachexia in advanced cancer, along with their professional ethos, influenced their response to it in clinical practice.

Conclusions: This study has revealed that cancer cachexia is a complex and challenging syndrome which needs to be addressed from a holistic model of care to reflect the multidimensional needs of patients and their families. Effective management will require a combination of knowledge, a supportive culture, and adequate resources.

Uncovering the challenges of managing cachexia in advanced cancer: Preliminary results from semi-structured interviews with healthcare professionals in a regional cancer centre

Background: Cancer cachexia is a complex metabolic syndrome characterised by severe and progressive weight loss which is predominantly muscle mass. It is a devastating and distressing complication of advanced cancer with profound bio-psycho-social implications for patients and their families. At present there is no curative treatment for cachexiain advanced cancer therefore the most important healthcare response entails the minimisation of the psycho-social distress associated with it. However the literature suggests healthcare professionals’are missing opportunities to intervene and respond to the multi-dimensional needs of this population.

Objective:The objective of this study was to explore healthcare professionals’ response to cachexia in advanced cancer.

Methods: An interpretative qualitative approach was adopted in this study. A purposive sample of doctors, nurses, specialist nurses and dieticians were recruited from a regional cancer centre between November 2009 and November 2010. Data was collection was twofold: two multi-professional focus groups were conducted first to uncover the main themes and issues in cachexia management. This data then informed the interview schedule for the following 25 individual semi-structured interviews.

Results: Preliminary data analysis of the semi-structured interviews revealed distinct differences between disciplines in their perceptions of cancer cachexia which influenced their response to it in clinical practice. The commonality between disciplines, with the exception of palliative care, was a reliance on the biomedical approach to cancer cachexia management.

Discussion and Conclusions: Cancer cachexia is a complex and challenging syndrome which needs to be addressed from a holistic model of care to reflect the multi-dimensional needs of this patient group. The perspectives of those involved in care delivery is required in order to inform the development of interventions aimed at minimising the distress associated with this devastating syndrome.

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

Background: Cachexia has been defined as an on-going loss of skeletal muscle mass that cannot be fully reversed by conventional nutritional support. It can be found in up to 80% of patients with advanced cancer and has profound psycho-social consequences for patients and their families. There is a paucity of studies examining the role and experience of healthcare professionals in relation to cachexia and existing studies suggest that professional staff have limited understanding and do not intervene effectively.
Aim: To identify barriers and facilitators to good practice in cachexia care in order to inform future developments in service provision.
Design: An exploratory qualitative study was conducted employing semi-structured interviews with a range of healthcare professionals recruited purposefully from an Australian hospital. Interviews were conducted in private rooms within the hospital.
Setting/participants: A range of healthcare professionals responsible for cancer care were recruited from a large Australian teaching hospital.
Results: Interviews were conducted with 8 healthcare professionals responsible for delivering cancer care. 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 how improved knowledge and understanding across a staff body can lead to improved staff confidence and a willingness to address cancer cachexia and its consequences with patients and their families.
Conclusion: Comparison with previous studies illustrates the importance of improving knowledge and understanding about cachexia and how this can contribute to staff having the skills and experience necessary to address cachexia and provide an improved care experience for patients and carers.

Capecitabine and oral cyclophosphamide : a novel oral treatment combination for advanced cancer

Background: This dose escalation study assessed feasibility of a totally oral chemotherapy regimen using cyclophosphamide and capecitabine. The rationale for this combination was based on the observation that preclinical models of cyclophosphamide up-regulated tumor thymidine phosphorylase and increased the activation of capecitabine. Methods: Eligible patients with advanced cancer were treated with oral cyclophosphamide and capecitabine on a 28-day cycle. If no dose limiting toxicities (DLT) were encountered during the first two treatment cycles, the next patient group was assigned to the next highest dose level until the maximum tolerable dose (MTD) was determined. Results: Twenty-seven patients entered treatment. The majority of non-DLT were grades 1 and 2. DLT experienced in the first 8-week observation period were grade 3 diarrhea (one patient, level III) and grade 3 emesis (two patients, level V). MTD was observed at level 5, 1331 mg/m2/day capecitabine days 1–28 with 125 mg/m2/day cyclophosphamide days 1–14 of the 28-day cycle. The recommended phase II dose is therefore 1331 mg/m2/day capecitabine with 100 mg/m2/day cyclophosphamide. The best response evaluation showed four partial responses (breast, colon, ovary and pancreas). Conclusion: Cyclophosphamide and capecitabine can be combined at their full oral single agent dose with promising tolerability and activity.

Feasibility of conducting a palliative care randomized controlled trial in children with advanced cancer: assessment of the PediQUEST study

Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon.

Differences in parent-provider concordance regarding prognosis and goals of care among children with advanced cancer

Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type.

Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention : results from the PediQUEST randomized controlled trial.

This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL).

What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer

Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research. © Copyright 2014, Mary Ann Liebert, Inc. 2014.