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.

Endocrine symptom assessment in women with breast cancer: what a simple "yes" means.

GOALS OF WORK: To 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 METHODS: Symptom 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 RESULTS: Among 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. CONCLUSIONS: Patients' experience of endocrine symptoms needs to be considered both in patient care and research, when interpreting the association between symptoms and QL.

Fatigue and menopausal symptoms in women with breast cancer undergoing hormonal cancer treatment.

BACKGROUND: Hormonal treatment for women with breast cancer is frequently proposed in the adjuvant as well as in the palliative setting. Therefore, many women are confronted with early menopause and prolonged oestrogen deprivation and consequently with a variety of quality of life issues, such as menopausal symptoms and fatigue. PATIENTS AND METHODS: It was the aim of this study to explore the occurrence and frequency of menopausal symptoms in women with breast cancer, undergoing hormonal cancer treatment and to investigate their relationship with fatigue. A cross-sectional, quantitative approach was used in this multi-centre study. The Checklist for Patients with Endocrine Therapy (C-PET) and the International Breast Cancer Study Group (IBCSG) Linear Analogue Scales for patients with endocrine treatment were used. Descriptive statistics, as well as cluster analyses were performed. RESULTS: Most frequent menopausal symptoms involved hot flashes/sweats, tiredness, weight gain, vaginal dryness and decreased sexual interest. There were significant differences between the fatigued and the non-fatigued population regarding the intensity of menopausal symptoms, emotional irritability and general coping. Cluster analyses supported a menopausal symptom cluster. CONCLUSIONS: Fatigue accompanies menopausal symptoms and an association can be expected. Methods for routine screening for menopausal symptoms, including fatigue, are suggested as a relevant research issue in women with breast cancer undergoing hormonal treatment.

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.

[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.

[Hemoglobin and fatigue in cancer patients: inseparable twins?]. / Hämoglobin und Müdigkeit bei Tumorpatienten: Untrennbare Zwillinge?

UNLABELLED: Tiredness is one of the most common symptoms in patients with cancer, and, because of its multifaceted manifestation in this population today, it is generally termed the "fatigue syndrome". Causal relationships are complex and multidimensional. Research suggests that the type and stage of cancer play an important role, and that side effects of cancer treatment as well as psychological factors may be involved. A causal relationship between fatigue and a certain degree of anaemia has been suggested. Whilst it is acknowledged that severe anaemia causes "fatigue", the influence of mild, chronic anaemia on quality of life is not yet clear. It is the aim of this prospective, descriptive study to investigate the correlation between "fatigue" in cancer patients and their haemoglobin levels. Haemoglobin was measured in 444 cancer patients with different types and stages of cancer and treatment modalities. Concurrently, fatigue was assessed with the new Fatigue Assessment Questionnaire (FAQ). In addition, the Karnofsky Index was assessed and depression and anxiety were measured with the Hospital Anxiety and Depression Scale. RESULTS: Cancer patients with a haemoglobin level below 11 g/dl suffered from fatigue more than patients with higher haemoglobin levels (r = -0.196, p < 0.001). The correlation of "fatigue" was most prominent with physical fatigue such as reduced physical performance or weakness. The Karnofsky Index correlated significantly with the haemoglobin concentration. Patients with lower haemoglobin levels showed more signs of depression than those with higher levels. CONCLUSIONS: The grade of anaemia correlates with intensity of fatigue in cancer patients and also with depression. Both can be related to the advanced disease situation. Data suggest that if levels of haemoglobin are lower than 11 g/dl, subjective fatigue should be specifically assessed to plan treatment according to the patients' need. It remains to be substantiated when and which treatment is indicated to alleviate fatigue and to support quality of life in the individual anaemic cancer patient.

[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.

[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.

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.

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 conceptualize fatigue (Piper & Rieger, 1989; Cimprich, 1992; Gibson & Edwards, 1985; Winningham, 1994; Irvine et al. 1994; Grandjean, 1970; et al.), its mechanisms are still poorly understood. The aim of this study was two-fold: i) to explore fatigue in cancer patients, inductively, and ii) to compare fatigue/tiredness experiences 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. Transcripts of the interviews were analysed using content analysis and constant comparison. Although different themes emerged between the two groups, both fitted a classification system that categorized expression of fatigue/tiredness as physical, affective or cognitive. Physical signs were more frequent than affective and cognitive signs in both groups. For 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 were 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, involving nociception, perception and expression of tiredness, was put forward tentatively to explain the production of fatigue/tiredness. The emerging concepts break tiredness/fatigue into expressions of physical, affective and cognitive tiredness/fatigue. The experience is different between healthy individuals and cancer patients. The generalization of data needs precaution but the results of the study identify and clarify ideas that might form an important basis for further, controlled studies.

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.

Supportive and palliative care of cancer patients at the Kantonsspital St. Gallen, Switzerland.

In 1991, the first unit for oncology palliative care within an oncology centre in the country was opened in St. Gallen, Switzerland. The main admission criterion is symptom distress due to advanced cancer disease. The mean duration of hospitalisation was 23 days in 140 patients in 1994. Approximately one third of the patients die within the unit, while one third can be discharged for home care. The aims and strategies of interdisciplinary palliative care are described. The need for the 11-bed unit is documented by its high occupancy, by patient satisfaction and by its influence on palliative care development in and outside the country.