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.

Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: A longitudinal study.

Context: Family carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.

Objectives: To ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.

Methods: A longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n = 167) and 13 months postdeath (T3; n = 143).

Results: The PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.

Conclusion: Screening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.

A service evaluation of the role of complementary therapies for patients with cancer - By Action Cancer

Advances in the diagnosis and treatment of cancer has resulted in longer survival, meaning that cancer patients are now living with what may be termed a chronic type condition. As a result of this the needs of patients living with a cancer diagnosis has changed, placing a greater emphasis on survivorship which in turn has an effect on quality of life and sleep patterns. Evidence suggests that counselling and complementary therapies have a positive impact not only on the cancer patient’s quality of life but also on family members and friends.

The aim of this study was to determine if there is an improvement in client’s quality of life and sleep patterns after availing of counselling and complementary therapy services as offered by a local cancer charity.

All clients availing of the counselling or complementary therapies offered by the charity were invited to participate in a Service Evaluation. The regulations relating to research involving human participants as outlined by the “Research Governance Framework” at a local university were also adhered to. A seven piece questionnaire was used for evaluation of services.

Access to anonymous data from the cancer patients, their families and carers was granted by the Research and Development Officer within Action Cancer.
A total of 507 participants completed the initial questionnaires immediately before therapy and 255 participants completed the questionnaires immediately after therapy, the total matched sample is 230. When considering counselling and complementary therapies together (therapeutic services) there were statistically significant results indicating improved quality of life and sleep patterns between the two sets of data. However this was not the trend when considering counselling and complementary therapies alone.

While some of the findings closely reflect the literature and on the whole supports the use of therapeutic services in having a positive effect on cancer patient’s quality of life and sleep patterns.

Shared decision making in patients at risk of cancer: The role of domain and numeracy

Background
Shared decision making has become an integral part of medical consultation. Research has, however, reported wide differences in individuals' desires to be involved in the decision-making process, and these differences in preferences are likely to be the result of a number of factors including age, education and numeracy.

Objective
To investigate whether patients at genetic risk for cancer had preferences for shared decision making that differed depending on medical domain (general health vs. cancer) and whether decision preferences are linked to numeracy abilities.

Methods
Four hundred and seventy-six women who consented to participate in response to an email sent by a local branch of the U.S.-based Cancer Genetics Network (CGN) to its members. Participants completed the Control Preference Scale, as well as an objective and subjective numeracy scales.

Results
Decision domain (cancer vs. general health) was not associated with women's preferences for involvement in decision making. Objective and subjective numeracy predicted a preference for decision involvement in general, and only objective numeracy was predictive with regard to cancer.

Conclusion
Participants were equally likely to state they wanted to play an active, collaborative or passive role in both medical domains (general and cancer). High-numeracy participants were more likely to express a desire for an active role in general and in case they were diagnosed with cancer.

Practice implications
Health authorities' recommendations to clinicians to include patients in their medical decisions are supported by patients' desires, and clinicians should be cognizant of their patients' preferences as well as their numeracy skills.

Global surveillance of cancer survival 1995–2009: analysis of individual data for 25 676 887 patients from 279 population-based registries in 67 countries (CONCORD-2)

BACKGROUND: Worldwide data for cancer survival are scarce. We aimed to initiate worldwide surveillance of cancer survival by central analysis of population-based registry data, as a metric of the effectiveness of health systems, and to inform global policy on cancer control.

METHODS: Individual tumour records were submitted by 279 population-based cancer registries in 67 countries for 25·7 million adults (age 15-99 years) and 75,000 children (age 0-14 years) diagnosed with cancer during 1995-2009 and followed up to Dec 31, 2009, or later. We looked at cancers of the stomach, colon, rectum, liver, lung, breast (women), cervix, ovary, and prostate in adults, and adult and childhood leukaemia. Standardised quality control procedures were applied; errors were corrected by the registry concerned. We estimated 5-year net survival, adjusted for background mortality in every country or region by age (single year), sex, and calendar year, and by race or ethnic origin in some countries. Estimates were age-standardised with the International Cancer Survival Standard weights.

FINDINGS: 5-year survival from colon, rectal, and breast cancers has increased steadily in most developed countries. For patients diagnosed during 2005-09, survival for colon and rectal cancer reached 60% or more in 22 countries around the world; for breast cancer, 5-year survival rose to 85% or higher in 17 countries worldwide. Liver and lung cancer remain lethal in all nations: for both cancers, 5-year survival is below 20% everywhere in Europe, in the range 15-19% in North America, and as low as 7-9% in Mongolia and Thailand. Striking rises in 5-year survival from prostate cancer have occurred in many countries: survival rose by 10-20% between 1995-99 and 2005-09 in 22 countries in South America, Asia, and Europe, but survival still varies widely around the world, from less than 60% in Bulgaria and Thailand to 95% or more in Brazil, Puerto Rico, and the USA. For cervical cancer, national estimates of 5-year survival range from less than 50% to more than 70%; regional variations are much wider, and improvements between 1995-99 and 2005-09 have generally been slight. For women diagnosed with ovarian cancer in 2005-09, 5-year survival was 40% or higher only in Ecuador, the USA, and 17 countries in Asia and Europe. 5-year survival for stomach cancer in 2005-09 was high (54-58%) in Japan and South Korea, compared with less than 40% in other countries. By contrast, 5-year survival from adult leukaemia in Japan and South Korea (18-23%) is lower than in most other countries. 5-year survival from childhood acute lymphoblastic leukaemia is less than 60% in several countries, but as high as 90% in Canada and four European countries, which suggests major deficiencies in the management of a largely curable disease.

INTERPRETATION: International comparison of survival trends reveals very wide differences that are likely to be attributable to differences in access to early diagnosis and optimum treatment. Continuous worldwide surveillance of cancer survival should become an indispensable source of information for cancer patients and researchers and a stimulus for politicians to improve health policy and health-care systems.

An Association of Cancer Physicians' strategy for improving services and outcomes for cancer patients

The Association of Cancer Physicians in the United Kingdom has developed a strategy to improve outcomes for cancer patients and identified the goals and commitments of the Association and its members.

Talking about the genes for cancer. A study of lay and professional knowledge of cancer genetics

This paper is concerned with the ways in which people who work in and use a cancer genetics clinic in the UK talk about the ‘gene for cancer’. By conceptualising such a gene as a boundary object, and using empirical data derived from clinic consultations, observations in a genetics laboratory and interviews with patients, the author seeks to illustrate how the various parties involved adopt different discursive strategies to appropriate, describe and understand what is apparently the ‘same’ thing. The consequent focus on the ways in which the rhetorical and syntactical features of lay and professional talk interlink and diverge, illustrates not merely how our contemporary knowledge of genes and genetics is structured, but also how different publics position themselves with respect to the biochemistry of life.

Massage for symptom relief in patients with cancer: systematic review

Aim. This paper is a report of a review to assess evidence of the effectiveness of massage for patients with cancer, in terms of reducing physical or psychological symptoms, improving quality of life, or producing unwanted side effects. Background. Patients with cancer may use complementary therapies, including massage and aromatherapy massage. However, their use and provision by state-financed healthcare services is controversial. Data sources. A systematic review was carried out, using the Cochrane principles. No meta-analysis was appropriate. An initial comprehensive search of electronic databases search was carried out in 2003 and updated in 2006. Eligible trials were randomized controlled trials, controlled before-and-after (pre-post) studies and interrupted time-series studies. Participants were adults with a diagnosis of cancer and receiving care in any healthcare setting. Interventions were limited to massage and/or aromatherapy massage carried out by a qualified therapist. Outcome measures to be included were patient-reported levels of physical and psychological indices of symptom distress and quality of life (measured using validated assessment tools). Findings. In the review, 1325 papers were considered. Ten trials met the inclusion criteria and their results suggest that massage might reduce anxiety in patients with cancer in the short term and may have a beneficial effect on physical symptoms of cancer, such as pain and nausea. However, the lack of rigorous research evidence precludes drawing definitive conclusions. Conclusion. Further well-designed large trials with longer follow-up periods are needed to be able to draw firm conclusions about the efficacy and effectiveness of massage for cancer patients. © 2008 The Authors