Fertility concerns, preservation strategies and quality of life in young women with breast cancer: Baseline results from an ongoing prospective cohort study in selected European Centers.

OBJECTIVES: Most research addressing needs and concerns of young patients with breast cancer (≤40 years) is retrospective. The HOHO European protocol is a prospective multicenter cohort study of young women with newly diagnosed breast cancer, about fertility, psychosocial and quality of life concerns. Here we report the baseline data and focus on predictors of fertility concerns. MATERIALS AND METHODS: Patient surveys and medical record review were used. The baseline survey included sociodemographic, medical and treatment data as well as questions on fertility concerns and preservation strategies. Subscales from the CAncer Rehabilitation Evaluation System-Short Form (CARES-SF) were administered to measure specific quality of life aspects. Uni- and multivariable modeling were used to investigate predictors of greater fertility concern. RESULTS: Among 297 eligible respondents, 67% discussed fertility issues before starting therapy, 64% were concerned about becoming infertile after treatment, and 15% decided not to follow prescribed therapies. Fifty-four percent of women wished future children before diagnosis; of these, 71% still desired biologic children afterwards. In multivariable analysis, not having children was the only patient characteristic significantly associated with fertility concerns at diagnosis. Twenty-seven percent used fertility preservation strategies. Women who received chemotherapy reported greater physical (p = 0.021) and sexual difficulties (p = 0.039) than women who did not. Women who were married or had a partner reported less psychosocial problems than single women (p = 0.039). CONCLUSIONS: Young women with newly diagnosed breast cancer have several concerns, including, but not limited to, fertility. The HOHO European study provides valuable information to develop targeted interventions.

Effective control of chemotherapy-induced nausea and vomiting with oral prednisone and metoclopramide.

Repeated oral doses of metoclopramide (50 mg) and prednisone (25 mg) completely prevented nausea and vomiting (N + V) in approximately 50% and substantially reduced N + V in an additional 27%-36% of 56 chemotherapy courses in 30 consecutive cancer patients who were receiving primarily cisplatin. Toxicity from this antiemetic regimen was minor. Simple oral N + V-prevention with metoclopramide and prednisone is as effective but less cumbersome and considerably less expensive than either high doses of intravenous corticosteroids and/or intravenous metoclopramide.

Caring About Women and Cancer (CAWAC): a European survey of the perspectives and experiences of women with female cancers.

This paper reports on the findings of the largest ever European survey of female patients' perceptions of their cancer treatment. It has provided clarification of what women consider important in relation to their management and has identified several areas where more research is needed. It has shown that women's knowledge about cancer before diagnosis is poor and the number undergoing regular screening could be improved. Women are not being adequately prepared and educated about what to expect from treatment and steps should be taken as a matter of urgency to redress this shortcoming. It was revealed that whilst families were the primary source of support to female cancer patients, women also derive considerable support from healthcare professionals, particularly senior doctors; more attention should be paid by specialists and nurses to developing psychological skills to cope with this. In this context, further research is needed into how support groups may best meet patient needs.

Fatigue in patients with cancer. Analysis and assessment.

Although fatigue is the most frequent complaint in cancer patients, there is no universally accepted definition. In this book a series of studies are presented whose aims were definition of cancer-specific fatigue and the development of an instrument which had the capacity to discriminate levels of fatigue in different groups of cancer patients. The first study (chapter 2) explored the concept of fatigue by comparing the personal experiences of cancer patients (n = 20) with those of healthy individuals (n = 20). Using grounded theory, themes emerged which classified fatigue into physical, affective and congitive components. Differences were found in the expressions used by the two cohorts, particularly in relation to the physical sensations experienced. The descriptors generated by cancer patients were compared with those used in the currently available fatigue instruments and illustrated considerable differences in content. They were therefore used to develop a new fatigue instrument--the Fatigue Assessment Questionnaire (FAQ). The second study (chapter 4) tested the reliability and feasibility of the FAQ in a non-randomised, prospective, cross-sectional study of cancer patients (n = 77) and healthy individuals (n = 77). It was found to discriminate between fatigue experienced by cancer patients and that experienced by healthy individuals. A tentative step-like theoretical explanation for the production, perception and expression of fatigue proposed at the end of study one was supported by factor analysis. It led to minor adaptations of the instrument. The third study (chapter 5) subjected the FAQ to further validity testing. Four hundred and ninety-nine cancer patients with a variety of tumour types and stages were included in a prospective, non-randomised, cross-sectional study. Factor analysis supported the theoretical framework and led to modifications which resulted in a multi-dimensional, 20-item instrument. The FAQ discriminated significantly different levels of fatigue and the distress that it caused in patients with metastatic cancer, patients with localised cancer and patients whose disease was in remission. High levels of fatigue were mainly associated with advanced stages of cancer, in combination with high levels of depression. The closing chapter represents a synthesis and discusses issues for further research and implications for practice.

BRCA1/2 mutations in Swiss patients with familial or early-onset breast and ovarian cancer.

QUESTIONS UNDER STUDY: Germ-line alterations in BRCA1 and BRCA2 genes account for 30-50% of all forms of familial breast and ovarian cancer syndromes. Specific mutations in specific populations and ethnic groups have been identified in BRCA1 and BRCA2. However, it is not known whether such specific mutations prevail in the Swiss population. METHODS: We started to screen patients with primary breast and ovarian cancer and a strong family history of both cancers by sequencing the full-length coding regions of BRCA1 and BRCA2. RESULTS: With the selection criteria used in this study we identified 19 mutations in the first 38 patients screened (50%). These mutations were either defined as deleterious and resulted in a protein truncation (n = 10) or were defined as unclassified variants (n = 9). One novel truncating mutation was found in BRCA2 and two novel unclassified variants were detected in BRCA1. These three mutations are not described in the BIC and HGMD databanks. CONCLUSIONS: We detected three unknown mutations among 38 patients in a Swiss study of BRCA1/2 mutation patterns. One of these novel mutations is clearly deleterious as it leads to protein truncation at nucleotide 133 of BRCA2.

[Pain and fatigue in tumor patients]. / Schmerzen und Müdigkeit bei Tumorpatienten.

Diagnosis, assessment and treatment of pain are probably among the most significant achievements of modern medicine. Today patients with neoplastic diseases must be much less afraid of devastating pain than only a few years ago. According to the WHO 90% of the tumor-associated pain should be controlled, provided the available knowledge is effectively applied. Fatigue is increasingly recognized as a future major problem in these patients and it also is a sign of consuming disease processes. Subjectivity of both aforementioned symptoms requires also a subjective assessment i.e. measurements taken by the patient himself and acceptance of this self-assessment by those providing care. Fatigue, like pain is not only explained by biologic mechanisms but also understood as multidimensional concept including psychological aspects and social environment. Apart from pain-research, the recording of the course of fatigue-states, the definition of qualitative and quantitative aspects of fatigue and the development of therapeutic approaches to fatigue, will be objects of future research. The recognition of receptor-systems for pain evoke the hope for receptor-involvement in fatigue and the possibility for drug-receptor interactions. Even then these receptors will belong to individuals.

[Truth at the bedside--also with cancer patients?]. / Wahrhaftigkeit am Krankenbett--auch bei Tumorpatienten?

The emotional discussion on a frank information strategy towards cancer patients 10 to 15 years ago has fortunately become more objective today, not the 'if', but the 'how' is now important; however, psychologic problems in the confrontation with the terminally ill are still recognized, mainly in groups of physicians lacking personal contact with dying and death during postgraduate training and later practise. Improvement of primary information and of further adapted communication with cancer patients cannot be solved alone by a larger number of experienced oncologists, since these represent in most instances only the second or third medical authority approaching the patient with neoplastic disease. Therefore, more supporting and less prejudiced patient contacts should be provided by first-line medical care, i.e. the family physician or surgeon. However, a truthful information strategy is a personal challenge for the physician. It demands an individual preoccupation of the therapist with the basic questions regarding his own life and its impermanence. Critical peer-reviewed training (i.e. in discussion and Balint groups) can teach a balanced dimension for a difficult patient interview (information, emotional involvement, patient-oriented behaviour). Deviations from adapted behaviour such as over-identification can thus be recognized and prevented. Since coping with disease does not develop in a linear fashion from initial resistance and negation of disease to mature acceptance in many patients, experienced therapists may always encounter sudden new problems regarding communication and information; therefore, the requirements for a therapist regarding tact, sensitivity and readiness to learn are high. This overview is written in this intent from an oncologists point of view in order to provide practical hints for daily encounters with cancer patients.

[Fatigue and cancer--indivisible twins? A comparison between cancer patients, patients with diseases other than cancer and healthy people]. / Müdigkeit und Krebs--untrennbare Zwillinge? Ein Vergleich zwischen Krebspatienten, Nicht-Krebspatienten und Gesunden.

Fatigue has been described as a major distressing symptom in cancer patients. Its multidimensional concept can not be fully explained yet. The lack of valid, reliable measurement tools is one of the problems which inhibited further development of assessment in nursing as well as medical care. It was the aim of this study to 1) create and test a simple, easy to use Visual Analogue Fatigue Scale, 2) to explore levels and manifestations of fatigue in three sub-samples, 3) to analyse the expression of fatigue and to discern therapeutic, physiological and psychological factors linked with subjective ratings of fatigue. A prospective, non-randomised, descriptive design was used. The study-population included three sub-samples: 20 hospitalised cancer patients, 12 hospitalised patients with chronic inflammatory bowel disease and 30 healthy individuals. Subjects documented their levels and expression of fatigue with a Visual Analogue Fatigue Scale and the Yoshitake Symptom Checklist. Cancer patients demonstrated clearly different symptoms of fatigue than gastroenterology patients and than healthy individuals. Peak-levels of fatigue were highest in healthy individuals but showed different characteristics and impact on wellbeing. Daily fatigue-evolution profiles were subsample-specific and demonstrated the difference between fatigue as a healthy phenomenon and fatigue as a distressing symptom.

[Measuring fatigue of cancer patients in the German-speaking region: development of the Fatigue Assessment Questionnaire]. / Messung der Müdigkeit bei Krebskranken im Deutschen Sprachraum: Die Entwicklung des Fatigue Assessment Questionnaires.

UNLABELLED: Fatigue is recognised as one of the most frequent and distressing symptoms of patients with cancer. Whilst causal relationships mainly remain unclear, researchers meanwhile acknowledge its multidimensional nature. Causes and manifestations are complex and multifaceted and therefore, measurement in the past has been difficult. In recent years, some instruments have been developed in the English language. It is the aim of this article to describe the development of a new fatigue measurement instrument in the German language, the Fatigue Assessment Questionnaire. The following steps are described: 1. Concept analysis, 2. Identification of measurement criteria, 3. Comparison of these criteria with those described in the literature available, 4. Construction of a measurement scale, 5. Testing the new instrument, 6. Use of the instrument in a large study population. Steps 5 and 6 primarily deal with validity and reliability testing while step 6 also tests the hypothesis that patients with some types and stages of cancer suffer more from distressing fatigue than patients with other types and stages. CONCLUSION: Validity of the measurement items in the Fatigue Assessment Questionnaire was supported by the fact that they were derived from qualitative interviews with cancer patients. The first test with 77 cancer patients and 77 healthy individuals led to small adaptations and the following study, including 592 cancer patients, supported the reliability and validity of the Fatigue Assessment Questionnaire. It was able to distinguish between different populations. Factor analyses supported the earlier generated model of physical, affective and cognitive fatigue. Internal consistency of the questionnaire was supported by the Alpha Coefficient 0.90 (Cronbach). A difference was found in physical tiredness for patients with different types of cancer (p = 0.008) but this was not the case for affective and cognitive tiredness. More fatigue feelings were experienced by cancer patients with advanced disease than by patients in remission and this was true for physical fatigue (p = 0.0001), affective fatigue (p = 0.01), cognitive fatigue (p = 0.02) as well as for fatigue intensity (p = 0.0001) and distress (p = 0.0001). This group of patients also experienced significantly higher levels of depression and anxiety (p = 0.0001). The Fatigue Assessment Questionnaire, developed in the German speaking part of Switzerland, can be used for further activities in the field of quality of life and nursing care in oncology. The instrument and a proposed scoring system are published as an addendum to this article.

[Fatigue in the healthy and in cancer patients. II. A qualitative study for conceptual analysis]. / Müdigkeit/Fatigue bei Gesunden und bei krebskranken Menschen. Teil II: Eine qualitative Studie zur Konzeptanalyse.

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: 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. 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, 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. 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.

[Fatigue in healthy and cancer patients. 1. A qualitative study on conceptual analysis]. / Müdigkeit/Fatigue bei Gesunden und bei krebskranken Menschen. Teil I: Eine qualitative Studie zur Konzeptanalyse.

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.