Agnes Glaus

A qualitative study to explore the concept of fatigue/tiredness in cancer patients and in healthy individuals.

Interest in fatigue research has grown since the finding that fatigue/tiredness is the most frequently reported symptom of cancer and its treatment. But even though several authors have tried to conceptualise fatigue, its mechanisms are still poorly understood. The aim of this study was twofold: (a) to explore fatigue in cancer patients inductively, and (b) to compare experiences of fatigue/tiredness of healthy individuals with those of cancer patients to identify cancer-specific fatigue/tiredness and related concepts. A qualitative research strategy was adopted using a grounded-theory approach. The prospective study took place in the oncology department of the Kantonsspital, St. Gallen, Switzerland, with samples of 20 cancer patients and 20 healthy individuals. Unstructured, tape-recorded interviews were conducted to collect data. The transcripts of the interviews were analysed using content analysis and constant comparison. Different themes emerged between the two groups although both fitted a classification system that categorised fatigue into physical, affective and cognitive expressions of fatigue/tiredness. Physical signs were more frequent than affective and cognitive signs in both groups. In the cancer patients, fatigue involved decreased physical performance, extreme, unusual tiredness, weakness and an unusual need for rest, which was distinctly different for healthy persons. Affective and cognitive distress was also more prominent in cancer patients. Interestingly, the concept of malaise was not identified by either sample and not understood as an expression of fatigue by this German-speaking population. Linguistic differences in the description of fatigue/tiredness between healthy and ill individuals revealed different perceptions of the phenomenon. A step-like theory, explaining the production of fatigue/tiredness was tentatively put forward involving nociception, perception and expression of tiredness. The emerging concepts break tiredness/fatigue into an expression of physical, affective and cognitive tiredness/fatigue. The experience is different between healthy individuals and cancer patients. Care must be taken when drawing generalised conclusions but the results of the study identify and clarify ideas that might form an important basis for further, controlled studies.

Preventive therapy for breast cancer: a consensus statement

In March, 2010, a group of breast cancer experts met to develop a consensus statement on breast cancer prevention, with a focus on medical and therapeutic interventions. We present the conclusions in this Review. First we agreed that the term chemoprevention is inappropriate and suggested that the term preventive therapy better represents this feature of management. Two selective oestrogen-receptor modulators--tamoxifen and raloxifene--are so far the only medical options approved by the US Food and Drug Administration for preventive therapy. Of these tamoxifen has greater efficacy and can be used in premenopausal women, but raloxifene has fewer side-effects. Two newer drugs in this class, lasofoxifene and arzoxifene, also show efficacy and possibly a better overall risk-benefit profile, but need further assessment. Aromatase inhibitors might be more efficacious, and results of prevention trials are eagerly awaited. Newer agents, notably bisphosphonates and metformin, have shown promise in observational studies and need to be assessed in randomised prevention trials. Other agents, such as aspirin, other non-steroidal anti-inflammatory drugs, COX-2 inhibitors, retinoids, rexinoids, and dietary components have limited effects or are in the early phases of investigation. New contralateral tumours in women with breast cancer might be generally useful as a model for prevention, as has been seen for tamoxifen. If valid such a model would facilitate the design of simpler, cheaper, and better-focused trials for assessing new agents.

Quality and efficacy of educational materials on cancer-related fatigue: views of patients from two European countries

Cancer-related fatigue is a symptom with great implications for the quality of life of those that experience it. It is regarded as one of the most distressing symptoms that people with cancer develop. Its aetiology is complex, and although the mechanisms underlying fatigue have not been fully clarified it is evident that it is exacerbated by treatments intended to cure or palliate the disease. Patients at risk of cancer-related fatigue need access to information that will enable them to manage it effectively. There are a growing number of materials available to patients in different European countries on this topic, but it is unclear how useful patients find these. This study was undertaken to explore this through conducting focus groups with patients in the United Kingdom and Switzerland. One focus group was conducted in each country. Findings from these determined that individuals voiced common concerns: fatigue had not been addressed in the clinical setting - individuals surmised why this occurred; participants had not accessed materials on cancer-related fatigue previously; they made recommendations for future resources for patients. However, what was evident was that unless patients can access materials on this topic, their quality becomes purely an academic issue.

Fatigue and cachexia in cancer patients

disturbances. Those mainly dealing with quality of life might look at them as distressing symptoms, while nurses primarily see and hear from patients that they feel weak and are in need of an unusual amount of rest. Psychologists might see fatigue and sometimes also anorexia as an emotional response to life-threatening disease. Needless to say, here we are confronted with suffering, where emotional and physical components are interwoven. Obviously, collaborative and interdisciplinary research and treatment are required if progress is to be achieved. It may be that the professionals involved need to be persistent and modest, but still enthusiastic about exploring possibilities to improve the most common aspects of quality of life. In recent years, the pathology of cancer cachexia has been elucidated. Our knowledge about the processes involved when the tumor is consuming everything and the body is starving has increased. Evidence and experience indicate that the features grow with tumor progression and disappear when the patients become healthy again. On the other hand, we observe cancer cachexia during treatment, be it during intensive chemotherapy or after extensive surgery, and we are only now gradually learning about the impact of the nutritional status on the effectiveness of treatment. Dr. Bruera’s article on treatment of cancer cachexia gives an overview of the status of its pharmacological treatment [5]. He elegantly describes our current knowledge about the underlying causal mechanisms and the rationale for new treatment strategies. Several newer studies are summarized together with their methodological problems, especially those concerning the systematic measurement of different dimensions of cachexia. He questions whether the measurement scores of cachexia and fatigue make a difference within the overall scores of quality of life, which represents a stimulating idea for researchers and clinicians. How can we show the relevance of these problems and justify the costs for such research? Are overall quality of life scores of any help? Maybe only the patients themselves should identify the priorities. In one of his studies, Dr. Bruera suggests that the effect of megesterol acetate exerts its beneficial effects by mechanisms other than weight gain. The outcome of the study was an increase in appetite and a decrease in fatigue. These findings suggest common features between cachexia and fatigue. It therefore could be interesting to study this substance in patients with high levels of fatigue, using specific fatigue-assessment tools. In 1993, Prof. Barbara Piper, one of the most experienced fatigue researchers, mentioned the need for research studies, clarifying the concept of fatigue and identifying the distinction between fatigue and tiredness [6]. Today, some of those answers can at least partially be answered [7]. DeSupport Care Cancer (1998) 6:77–78

Breast Cancer Patients on Endocrine Therapy Reveal More Symptoms when Self-Reporting than in Pivotal Trials: An Outcome Research Study

Objectives: The purpose of this investigation was firstly to assess the overall frequency of subjectively experienced symptoms self-reported by patients receiving endocrine therapy and secondly to compare these symptoms with side effects assessed by clinicians in pivotal trials. Methods: Unselected patients with early and advanced breast cancer receiving endocrine therapy were approached consecutively during a routine outpatient visit. They received a questionnaire called Checklist for Patients with Endocrine Therapy (C-PET), a validated self-assessment tool to determine prespecified symptoms associated with endocrine therapy. Data on toxicity were also obtained from previously published trials. Results: 405 patients were approached and 373 agreed to participate in this study. Some symptoms were significantly more often recorded by the women in the adjuvant setting completing the C-PET than by physicians’ reports in pivotal trials: hot flushes/sweats (C-PET 70%, ATAC 40% and BIG1-98 38%), low energy (C-PET 45%, ATAC 15% and BIG1-98 9%), fluid retention (C-PET 22% and BIG1-98 7%) and vaginal dryness (C-PET 30% and BIG1-98 3%). Similar differences were observed in the metastatic and adjuvant setting. Conclusions: A simple tool like the C-PET questionnaire is able to reflect the treatment burden of endocrine therapies and may be helpful to improve communication between patients and care providers. Some symptoms were significantly more often reported by the women in the C-PET than by physicians in pivotal trials.

Endocrine symptom assessment in women with breast cancer: what a simple “yes” means

Goals of workTo investigate the self-reported symptoms related to endocrine therapy in women with early or advanced breast cancer and the impact of these symptoms on quality of life (QL) indicators.Materials and methodsSymptom occurrence was assessed by the Checklist for Patients on Endocrine Therapy (C-PET) and symptom intensity was assessed by linear analogue self-assessment (LASA) indicators. Patients also responded to global LASA indicators for physical well-being, mood, coping effort and treatment burden. Associations between symptoms and these indicators were analysed by linear regression models.Main resultsAmong 373 women, the distribution of symptom intensity showed considerable variation in patients reporting a symptom as present. Even though patients recorded a symptom as absent, some patients reported having experienced that symptom when responding to symptom intensity, as seen for decreased sex drive, tiredness and vaginal dryness. Six of 13 symptoms and lower age had a detrimental impact on the global indicators, particularly tiredness and irritability.ConclusionsPatients’ experience of endocrine symptoms needs to be considered both in patient care and research, when interpreting the association between symptoms and QL.

Supportive Care in Cancer: 15 years thereafter

The official journal of the Multinational Association of Supportive Care in Cancer (MASCC), Supportive Care in Cancer (SCC), celebrates the start of its 10th year of publication in January 2002 – reason to look “back to the roots”, but also reason to reflect about its impact on the problems of the supportive care scene in present times and its messages and goals for the future (see the editorial section of this issue). But the whole affair with supportive care in cancer started earlier than 1993: it started with evolving changes in the perception of “cure” and “care” in oncology and in medicine in general – and with visionary pioneer groups of dedicated physicians and oncology nurses, back in 1987 – 15 years ago.

Fatigue in healthy and cancer patients. 1. A qualitative study on conceptual analysis

UNLABELLED Interest in fatigue-research has grown since the finding that fatigue/tiredness is the most frequently reported symptom of cancer and its treatment. But even though several authors have tried to conceptualise fatigue, its mechanisms are still poorly understood. The aim of this study was twofold: 1) to explore fatigue in cancer patients, inductively, and 2) to compare experiences of fatigue/tiredness of healthy individuals with that of cancer patients to identify cancer-specific fatigue/tiredness and related concepts. PATIENTS AND METHODS A qualitative research strategy was adopted using a grounded theory approach. The prospective study took place in the Oncology Department of the Kantonsspital St. Gallen (Switzerland) with samples of 20 cancer patients and 20 healthy individuals. Unstructured, tape recorded interviews were conducted to collect data. The transcripts of the interviews were analysed using content analysis and constant comparison. RESULTS Different themes emerged between the two groups although both fitted a classification system, which categorised fatigue into physical, affective and cognitive expressions of fatigue/tiredness. Physical signs were more frequent than affective and cognitive signs in both groups. In the cancer patients, fatigue involved decreased physical performance, extreme, unusual tiredness, weakness and unusual need for rest, which was distinctly different for healthy persons. Affective and cognitive distress was also more prominent in cancer patients. Interestingly, the concept of malaise was not identified by either sample and not understood as an expression of fatigue by this German speaking population. Linguistic differences in the description of fatigue/tiredness between healthy and ill individuals revealed different perceptions of the phenomenon. A step-like theory, explaining the production of fatigue/tiredness was tentatively put forward involving nociception, perception and expression of tiredness. CONCLUSIONS The emerging concepts break tiredness/fatigue into expression of physical, affective and cognitive tiredness/fatigue. The experience is different between healthy individuals and cancer patients. Generalisability of data needs precaution but the results of the study identifies and clarifies ideas that might form an important basis for further, controlled studies.In den letzten Jahren ist Mudigkeit/Fatigue als eines der haufigsten Probleme krebskranker Menschen erkannt worden. Obwohl verschiedene Autoren versucht haben, das Phanomen zu konzeptualisieren, bleiben die ursachlichen Mechanismen und Zusammenhange unklar. Diese Studie hatte zwei Ziele: a) Mudigkeit bei krebskranken Menschen induktiv zu explorieren und b) das Erleben der Mudigkeit von Krebskranken mit demjenigen von gesunden Personen zu vergleichen, um krebsspezifische Mudigkeit und darunterliegende Konzepte zu entdecken. Dazu wurde eine qualitative Forschungsstrategie, die «grounded theory» Methode angewandt. Die prospektive Studie wurde an der onkologischen Abteilung des Kantonsspitals St. Gallen, Schweiz, durchgefuhrt. Sie umfaste zwei Studiengruppen, bestehend aus 20 Krebskranken und 20 gesunden Personen. Zur Datenerhebung wurden unstrukturierte, auf Tonband aufgenommene Interviews durchgefuhrt. Die Datenanalyse erfolgt mittels Inhaltsanalyse der Transkripte und konstanten Vergleichs. In beiden Studi...

Das Brustkrebs-Präventionsverhalten in der Schweiz: aus der Perspektive von Frauen aus drei Sprachregionen der Schweiz

Die Schweizerinnen weisen in Europa, zusammen mit den Frauen aus Holland, Danemark, Belgien, Schweden, Finnland, England und Deutschland, ein sehr hohes Brustkrebsrisiko auf. Obwohl die Primarprave...

[Attitude of cancer patients to fatigue: patient attitude in Switzerland and England].

Im Verlauf einer Krebserkrankung leiden viele Menschen unter unublicher, belastender Mudigkeit. Forschungsuntersuchungen der letzten Jahre haben Pflegenden, Medizinern und Psychologen gezeigt, dass...In the course of a cancer trajectory, many patients suffer from distressing fatigue. In past years, research has shown that care givers tend to underestimate or even to ignore this frequent phenomenon. Despite increasing knowledge, fatigue seems to remain an orphan topic in symptom management. Aim: A qualitative research strategy was used to explore the perception of cancer patients regarding the awareness of fatigue in professionals and the way they deal with it. Patients also evaluated the usefulness of some currently available information material about fatigue. Methods: The expert-opinion of cancer patients in Switzerland and England was analysed. Convenient sampling guided the selection process of seven patients in each country. A tape-recorded focus-group interview served as method to collect and transcribe data. Data were analysed according to the framework analyses by Richie & Spencer. Results: Results were very similar in both countries. Patients stated a great need for more information regarding fatigue. They feel that care givers are not sufficiently aware of it and that a specific support is not part of current standard practice. The information material was well received and generally judged as very good and helpful. Conclusions: Communication barriers in professionals as well as in patients continue to exist. Patients wish to be better informed by care givers. The available information material serves well to support this information as they provide words for the unmentioned phenomenon. Far more professional fatigue education is needed to raise care givers’ awareness