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Context: There are few scales in Swedish that assess symptoms in the dimensions of frequency, severity, and distress., Objectives: The purpose of this study was to translate and determine the validity and reliability of the Memorial Symptom Assessment Scale (MSAS) in a Swedish population of postmenopausal women newly diagnosed with primary or recurrent breast cancer., Methods: The original 32-item MSAS, a self-report measure for assessing symptom distress and frequency in cancer patients, was translated and administered to 206 patients (primary, n = 150 and recurrent, n = 56)., Results: The MSAS psychological symptom subscale correlated with the emotional and cognitive functioning subscales of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and showed the highest correlation with the EORTC QLQ-C30 emotional functioning subscale (r = -0.78; P < 0.01). The psychological symptom subscale also correlated with the Hospital Anxiety and Depression Scale (HADS) within values for anxiety (r = 0.68; P < 0.01) and with the EORTC QLQ-C30 within cognitive functioning values (r = -0.58; P < 0.01). The Global Distress Index (GDI)-MSAS showed satisfactory correlations with the EORTC QLQ-C30 emotional functioning subscale (r = -0.75; P < 0.01), whereas the correlation between the GDI-MSAS and the EORTC QLQ-C30 cognitive functioning subscale was somewhat lower (r = -0.54; P < 0.01). Correlations between the GDI-MSAS and the HADS anxiety subscale were confirmed (r = 0.62; P < 0.01), and a correlation between the MSAS physical symptom items and symptom items in the EORTC-QLQ-C30 was evident (r = 0.60-0.85; P < 0.01). Cronbach's alpha coefficients for the MSAS and MSAS subscales based on symptom scores ranged from 0.80 to 0.89. The internal consistency at different time points was satisfactory, ranging from 0.86 (baseline) to 0.90 (follow-up)., Conclusion: The Swedish version of the MSAS presents as a valid and reliable measure for assessing symptom distress, severity, and frequency in Swedish patients diagnosed with primary and recurrent breast cancer., (Copyright © 2013 U.S. Cancer Pain Relief Committee. All rights reserved.)

Objective: Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables' relation to patients' participation during the last three months in life as documented in patients' records., Method: The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life., Results: This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients., Significance of Results: The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

The aims of this study were to describe and compare quality of life before and after designation to a palliative homecare team in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global quality of life. We measured patients' quality of life 1 week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (Axelsson & Sjödén 1999). Of 163 eligible patients 63 participated without attrition. Patients' quality of life improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (P = 0.009), nausea (P = 0.008), anxiety (P = 0.007), getting hold of staff (P = 0.000), received care (P = 0.003) and global quality of life (P = 0.023). Depression/low in mood (r = 0.55) and meaningfulness (r = 0.70) associated to global quality of life. Furthermore, pain (P = 0.028) and meaningfulness (P = 0.028) predicted global quality of life. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global quality of life.

Background: Patient-reported outcomes incorporated in cancer clinical trials, are increasingly hypothesized to be predictors of disease-free survival. Previous research supports health-related quality of life (HRQoL) as an independent predictor of survival in patients with advanced or metastatic breast cancer. In contrast, recent studies provide evidence that baseline HRQoL scores are not associated with increased risk of relapse or survival in women with early-stage breast cancer. One plausible assumption might be that baseline HRQoL scores are limited as predictors of a recurrence of breast cancer several years after the initial diagnosis. In this explorative study, we examined whether changes in HRQoL over time may predict breast cancer recurrence. As a supplement, we investigated whether baseline HRQoL predicted recurrence., Methods: The study sample consisted of 141 participants in the International Breast Cancer Study Group adjuvant Trial 12-93 and Trial 14-93, from the Western region of Sweden. HRQoL was assessed, during a 5-year follow up. Poisson regression analysis was used to estimate the hazard function of recurrence depending on time since primary diagnosis and on HRQoL variables., Results: According to the Poisson multivariable regression analysis changes in physical well-being (beta=0.00439, p-value=0.0470), and nausea/vomiting (beta=-0.00612, p-value=0.0136) significantly predicted recurrence. Baseline HRQoL outcomes were not predictors of recurrence., Conclusions: Changes of HRQoL during adjuvant therapy may be associated with recurrence. This explorative finding needs prospective investigation.

The purpose of the present study was twofold: first, to describe changes of Health-Related Quality of Life (HRQoL) during the adjuvant treatment among postmenopausal women with breast cancer; second, in the same population to identify the best predictors of Overall Quality of Life (QoL) after treatment, from perceived functioning, symptoms, emotional distress and clinical/demographic variables measured at baseline. The study group was 150 women (> or = 55 years of age) scheduled for adjuvant chemotherapy (CT, n=75) or radiotherapy (RT, n=75). They were examined before (baseline), during and after completing the treatment. Data about QoL, perceived functioning, symptoms and emotional distress were collected with the European Organisation for Research and Treatment of Cancer (EORTC)-QLQ-C30, BR23 and Hospital Anxiety and Depression Scale (HADS) questionnaires. The general finding was that the adjuvant treatments were associated with decrease in overall QoL, physical and role functioning, anxiety and body image, as well as with increase in fatigue, dyspnoea, pain, nausea/vomiting, constipation and systemic therapy side effects measured over time. For women receiving CT, better emotional functioning and less pain at baseline predicted better overall QoL at the end of the treatment. For women receiving RT, better physical and emotional functioning, less breast symptoms and lower tumour stage at baseline predicted better overall QoL at the end of the treatment.

The aim of this study was to describe the dyspnea experience and examine its relation to other symptoms, personal and health-related factors and its predictors in patients with lung cancer. The subjects were 105 patients diagnosed with lung cancer, approached when active anti-tumour treatment was closed. The patients completed a battery of questionnaires about several aspects of dyspnea experience, intensity of other symptoms and coping capacity. Medical data including performance status were obtained from medical records. Above 50% of the patients perceived dyspnea. Coping capacity, performance status and other symptoms correlated with different aspects of dyspnea experience. Dyspnea dimensions and activity-related dyspnea correlated with anxiety, depression, fatigue and cough as well as negatively to coping capacity. Performance status correlated with dyspnea intensity and activity-related dyspnea. Lower coping capacity predicted dyspnea; additional predictors were higher levels of anxiety and fatigue. Dyspnea in this group of patients was a complex experience, including physical and psychological aspects and should preferably be assessed in a comprehensive way. A nursing intervention to decrease dyspnea experience and anxiety could use knowledge from this study about the importance of coping capacity to better help patients with lung cancer to cope in their palliative phase of the disease.

Aims: To improve the understanding of specific clinical problems at the end of life, including the role of advancing age, physical function and cognitive function., Methods: The study is part of an explorative survey of data relevant to end-of-life healthcare services during the last 3 months of life of a randomly selected sample of the population of a Swedish county. Data were selected through retrospective reviews of death certificates and medical records, and comprise information from 12 municipalities and 229 individuals., Results: A range of prevalent concerns was found. Overall deterioration, urinary incontinence, constipation, impaired skin integrity, anxiety and sleep disturbances were significantly associated with dependency on others for activities of daily living; pulmonary rattles and swallowing disturbances were associated with cognitive disorientation; excepting cough, advancing age did not have significant impacts on these prevalent clinical concerns., Conclusions: A range of distressing conditions constitute a common pathway for many individuals at or near the end of life. The incorporation of health promotion as a principle of palliative care will probably benefit individuals at the end of life, and includes a proactive focus and emphasis on enhanced well-being at the time of diagnosis of a life-threatening illness. For individuals with physical and cognitive limitations imparting a state of dependency, it is reasonable to provide assurance of care for individuals' specific needs by professionals with both training for and competence in this special and sometimes unique clinical environment.

Background: Unexplained chest pain is a frequent and increasingly common complaint among patients admitted to Emergency Departments. Previous studies have defined unexplained chest pain as non-cardiac or non-coronary artery disease, i.e. patients with other organic causes explaining the chest pain could be included. To increase the knowledge of unexplained chest pain, this study only includes patients without any known explanation for their chest pain., Aim: To analyze gender differences regarding pain characteristics, psychosocial factors and health-related quality of life among patients diagnosed unexplained chest pain., Methods and Results: The results are based on 179 patients (101 men, 78 women) between 16 and 69 years old (mean age 45.3) consecutively admitted to Emergency Department. Pain characteristics were assessed by Pain-O-Meter. Social relationships, depression, anxiety, and health-related quality of life were measured by a self-administered questionnaire. There were no gender differences regarding chest pain intensity; however women described their pain as burning (p<0.01) and frightening (p<0.03) more often than men. Men reported less depression (p<0.01) and less trait anxiety (p=0.01) than women. Chest pain intensity did not significantly impact health-related quality of life except physical functioning in men (p=0.05)., Conclusion: Gender differences were few. Chest pain intensity did not significantly impact health-related quality of life.

The aims of the study were to investigate lung cancer patients' quality of life (QoL) over time in a palliative setting and to determine how QoL is influenced by symptoms, coping capacity, and social support. One hundred and five consecutive patients with incurable lung cancer were included. A comprehensive set of questionnaires was used at baseline, including the Assessment of Quality of Life at the End of Life, Cancer Dyspnea Scale, Visual Analog Scale of Dyspnea, Hospital Anxiety and Depression scale, Sense of Coherence Questionnaire, and Social Support Survey, of which the first four were used also at three, six, nine, and 12 months. Dyspnea, depression, and global QoL deteriorated over time. Performance status, anxiety, depression, components of dyspnea, pain, and the meaningfulness component of coping capacity correlated with global QoL at all, or all but one follow-up measurements. In a multivariate analysis with global QoL as the dependent variable, depression was a significant predictor at four out of five assessments, whereas coping capacity, anxiety, performance status, pain, and social support entered the model at one or two assessments. Emotional distress and coping capacity influence QoL and might be targets for intervention in palliative care.

Introduction: Fatigue is a common symptom in patients with chronic heart failure (CHF) and has a major impact on their daily life activities. The purpose of this study was to examine the prevalence and severity of fatigue, conceptualized as a multiple dimensional symptom, and to determine the influence of sense of coherence and uncertainty on the fatigue experience in patients with CHF., Methods: Ninety-three consecutive patients, hospitalized with a diagnosis of CHF, completed the Multidimensional Fatigue Inventory Scale (MFI-20), Cardiovascular Population Scale (CPS), and Sense of Coherence Scale (SOC) and were classified according to the New York Heart Association (NYHA) functional classification criteria. Associations between selected variables were explored with multiple regression analysis., Results: The patients reported high prevalence and severity in the physical dimensions of fatigue. Uncertainty was associated positively with tiredness and reduced functional status. High age predicted reduced motivation and the ability to concentrate were affected by low SOC., Conclusion: Fatigue is a prevalent and distressing experience in patients with CHF, where a variety of factors influence different dimensions of the fatigue experience. Recognising this, symptom management must be directed towards comprehensive assessment and a broad approach in interventions aimed at alleviating fatigue.

Background: Little scientific attention has been paid to providing a comprehensive multidimensional description of chest pain in patients with unexplained chest pain., Aims: The aims of the present study were: (1) to describe the symptom chest pain, including the dimensions of intensity, quality, duration and location in patients with unexplained chest pain (UCP); and (2) to identify similarities and differences in how patients with UCP and patients with ischemic heart disease (IHD) describe chest pain., Method: A descriptive, correlational and comparative design. Totally 208 consecutive UCP patients and 40 IHD patients below 70 years of age participated. Pain was assessed using the instrument Pain-O-Meter., Results: The occurrence of chest pain was 79% (n=165) in UCP patients versus 60% (n=22) in the IHD patients (p=0.001). Patients with UCP reported greater pain intensity and used more sensory and affective words than IHD patients (p<0.01). Relationships between pain location and amount of body surface involved in the pain and pain intensity in both groups were found (p<0.001)., Conclusions: Our results showed some defining characteristics of the UCP group, but the many similarities between the two groups in their experience of chest pain made it impossible to clearly differentiate the groups' pain profiles.

Palliative care is increasingly organized within the setting of formal health care systems but the demarcation has become unclear between, on the one hand, care directed at cure and rehabilitation and palliative care aimed at relief of suffering on the other. With the purpose to increase the understanding about the turning point reflecting identification of dying and reorientation of care, this study explores this phenomenon as determined from health care records of a representative sample (n = 229). A turning point was identified in 160 records. Presence of circulatory diseases, sporadic confinement to bed, and deterioration of condition had a significant impact upon the incidence of such turning point. The time interval between the turning point and actual death ranged between one and 210 days. Thirty percent of these turning points were documented within the last day of life, 33% during the last 2-7 days, 19.5% during the last 8-30 days, 13% during the last 31-90 days, and 4.5% during the last 91-210 days of life. The time interval between the turning point and actual death was significantly longer among individuals with neoplasm(s) and significantly shorter among individuals suffering from musculoskeletal diseases. Perhaps this reflects a discrepancy between the ideals of palliative care, and a misinterpretation of the meaning of palliative care in everyday clinical practice. The findings underscore that improvement in timing of clinical identification of dying and reorientation of care will likely favour a shift from life-extending care to palliative care.

The aim of this study was to describe how patients' participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and treatments; appealing for relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients' involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it.

The Cancer Dyspnea Scale (CDS) is a multidimensional measure of dyspnea experience, with three subscales related to sense of effort, sense of anxiety and sense of discomfort, and a total score. In this study, we evaluated the validity and reliability of a Swedish version, the CDS-S, in 99 patients with advanced lung cancer who were not receiving curative or life-prolonging treatments. Criterion-related validity was demonstrated by significant group differences in CDS-S scores when patients were stratified by dyspnea intensity, as measured by a visual analogue scale (VAS-D). Correlations between the total CDS-S score and other dyspnea scales varied between 0.63 and 0.68. Convergent validity was shown by comparing the CDS-S subscales with conceptually related measures of physical and emotional function and discomfort, and correlations ranged from 0.34 to 0.57. The CDS-S captured the psychological dimension of dyspnea better than did the VAS-D. Internal consistency of the CDS-S scales was confirmed by Cronbach's alpha coefficients ranging from 0.81 to 0.90. The CDS-S was well received by the patients and completed in 2 minutes. This study supports the CDS as a valid and reliable instrument to measure dyspnea experience in a palliative setting, well suited for use in research as well as in clinical practice.

The objectives of this study were to identify and describe the demographics and social conditions as well as characteristics of the places of death in a randomly selected sample that died in a county in Sweden during 2001. The present study reports part of the findings from a larger study undertaken during 2003 using a survey design of retrospective reviews of death certificates, medical records, and nursing records. Among several noteworthy findings are: first, an examination of these individuals' living arrangements reveal not only a large and vulnerable group that lives alone at the end-of-life but also a group living separated from their partners near end-of-life; second, individuals differ with respect to residence prior to death, that is private homes versus residential care facilities, imparting highly different contexts of care at the end-of-life; and third, a high prevalence of institutionalized deaths demonstrates that places of death other than hospitals and residential care facilities are uncommon, if not rare. It is concluded that increased attention to the social circumstances of the time period surrounding individuals' at the end-of-life is essential. There is need to develop more integrated models of care for dying people. Contemporary services available are not designed to meet a wide range of peoples' needs at the end-of-life. Home-based care, residential care and hospital care must be adapted to the changing patterns of dying. The services available should be organized to the benefit of the users rather than around the providers. This is the first study of its kind of a Swedish sample and while the data are limited to one county in Sweden its findings may contribute to a deeper understanding of demographic and social patterns at the end-of-life in general.

This article illustrates the experience of 20 postmenopausal women with breast cancer who had received chemotherapy treatment. The interviews were of narrative nature and analyzed with content analysis. Four themes, including 12 subthemes, described these women's life during treatment as a journey from the negative experiences of fear of the unknown, affects on body and mind, to the more positive to get by, and a transformed life. The treatment was compared with an assault on the body, and the loss of their hair was experienced more negatively than the loss of a breast. The women described a feeling of imbalance in their relationships due to lack of support from those close to them. The support from healthcare professionals was experienced both positively and negatively, and many of the women revealed variation in the professional's attitude, knowledge, and empathy. The women who chose not to work during the treatment felt pressure from society and healthcare professionals to get back to work as soon as possible. For many, especially those in a leading position, this was experienced as very difficult. The women expressed a feeling of not being afraid of dying but wanted more time to prepare themselves.

Background: Cancer-related fatigue (CRF) is a subjectively experienced symptom that is multidimensional and multifactorial. Patients with cancer have identified fatigue as one of the major troubling symptoms and the primary cause of distress in their lives., Aims: The major aim of the study was to examine how patients diagnosed with uterine cancer describe their experience of fatigue, psychological distress, coping resources and quality of life. A secondary aim was to describe the relationship between selected variables., Method: A descriptive and correlational design was used and the study was conducted at a university hospital in Sweden. The study population consisted of women, diagnosed with uterine cancer, who where scheduled to receive curative external radiation therapy. Sixty women participated in the study and data were collected through self-report instruments. Demographic and clinical data were extracted from patient records. The data were collected during year 2000-2002. The Conceptual Model of Symptom Management was used as a framework to guide the study., Findings: Patients experienced a low grade of fatigue and psychological distress, but their functional status and global quality of life was high. Significant correlations were found between general fatigue and anxiety and also between general fatigue and depression. There was a significant negative correlation between general fatigue and coping resources. Depression explained 44% of the variance in general fatigue., Conclusions: The findings provide knowledge about predictors of CRF in women with uterine cancer, and can serve as a basis for future longitudinal studies in which different prophylactic strategies against therapy-related fatigue are prospectively studied.

This study was designed to establish a foundation for the further development of a pain assessment tool for use in clinical practice. It was earlier reported that there existed a significant difference in the intensity of the words pain, ache and hurt and that each of these concepts had their own specific sensory and affective word descriptors. This study was designed to: 1 find out if the above results could be verified by using subjects with a different background from those included in the previous study; 2 determine the intensity of word descriptors; and 3 determine if patients, nurses and nursing students use the same word descriptors to describe pain-like experiences. Pain assessment tools used were the McGill Pain Questionnaire, a visual analogue scale and a pain, ache and hurt questionnaire. The results of the earlier reported study were confirmed. In addition, a significant difference was found in intensity of the word descriptors. Patients, nurses and nursing students used basically the same word descriptor to describe pain-like experiences. The sensory word descriptors (crushing, sharp, tearing, cutting, penetrating, gnawing, dull, pulling, sore, stinging, pricking and pinching) and the affective word descriptors (dreadful, torturing, killing, unbearable, terrifying, suffocating, exhausting, unhappy, troublesome, annoying, irritating and fearful) are suggested as a foundation upon which a pain assessment tool could be developed for use in clinical practice.