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1.	Ahlner-Elmqvist, Marianne, et al. (författare) Characteristics and implications of attrition in health-related quality of life studies in palliative care 2009 Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:5, s. 432-440 Tidskriftsartikel (refereegranskat)abstract In a longitudinal study of 297 palliative care patients, 280 patients were followed from inclusion to death. Characteristics and health-related quality of life (HRQL) of the participants and those who later dropped out were compared at inclusion, and 3 and 2 months before their death. At inclusion, the dropouts were older (P = 0.001), had reduced Karnofsky performance score (P < 0.001), received more help from the local authority (P = 0.004) and had reduced HRQL compared with patients who continued in the study and completed the next questionnaire. There were no differences in any of the HRQL parameters between participants and dropouts 3 months before death. Two months before death, differences in HRQL were found, but in favour of the dropouts. Data from patients close to death may be representative of a larger group of patients, whereas initial dropouts may lead to a positive bias of reported HRQL.
2.	Ahlner-Elmqvist, Marianne, et al. (författare) Characteristics and Quality of Life of Patients Who Choose Home Care at the End of Life 2008 Ingår i: Journal of Pain and Symptom Management. - : Elsevier Inc.. - 0885-3924 .- 1873-6513. ; 36:3, s. 217-227 Tidskriftsartikel (refereegranskat)abstract Cancer patients with advanced disease and short-survival expectancy were given hospitalbased advanced home care (AHC) or conventional care (CC), according to their preference. The two groups were compared at baseline to investigate whether there were differences between the AHC and the CC patients that may help explain their choice of care. The patients were consecutively recruited over 2½ years. Sociodemographic and medical data, and the health-related quality of life (HRQL) of the two groups were compared. HRQL was assessed using a self-reporting questionnaire, including the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQC30), the Impact of Event Scale (IES), five questions about social support, and two items concerning general well-being. The AHC group showed significantly poorer functioning on all the EORTC QLQ-C30 scales and an overall higher symptom burden than the CC patients. Fewer of the AHC patients were receiving cancer treatment. The AHC patients had lived longer with their cancer diagnosis, had a significantly shorter survival after study enrollment, and a significantly poorer performance status. The major differences between the two groups seemed to be related to being at different stages in their disease. The results indicate that patients are reluctant to accept home care until absolutely necessary due to severity of functioning impairments and symptom burden. These findings should be taken into consideration in planning palliative care services. J Pain Symptom Manage 2008;36:217e227. 2008 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
3.	Ahlner Elmqvist, Marianne, et al. (författare) Health-related quality of life during the last three months 2009 Ingår i: Supportive Care in Cancer. - : Springer-Verlag New York. - 0941-4355 .- 1433-7339. ; 17:2, s. 191-198 Tidskriftsartikel (refereegranskat)abstract Goals of work The aim of the study was to explore the development of functioning impairments and symptom occurrence during the last months of life of advanced cancer patients. Materials and methods Self-reported data from 116 patients who all completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire—Core 30 (EORTC QLQ-C30) at 3, 2 and 1 month before death were analysed. Main results All functioning aspects deteriorated. For physical, cognitive and social function, the most marked changes occurred between 2 and 1 month before death. The proportion reporting serious difficulties with self-care activities increased from 14% to 43%. The most seriously affected activity could not be distinguished from the EORTC QLQ-C30 scores. Levels of fatigue, dyspnoea and appetite loss increased significantly. More than 50% of the patients had severe pain at all assessments, and only a minor number (8%) reported any improvement. Conclusions The findings have implications for the planning of care and indicate that further research is required to improve assessment, treatment and follow-up procedures. Adequate pain treatment seems still to be a challenge. Anorexia, fatigue as well as dyspnoea are all symptoms that need further focus.
4.	Ahlner-Elmqvist, Marianne, et al. (författare) Health-related quality of life during the last three months of life in patients with advanced cancer 2009 Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 17:2, s. 191-198 Tidskriftsartikel (refereegranskat)abstract The aim of the study was to explore the development of functioning impairments and symptom occurrence during the last months of life of advanced cancer patients. Self-reported data from 116 patients who all completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) at 3, 2 and 1 month before death were analysed. All functioning aspects deteriorated. For physical, cognitive and social function, the most marked changes occurred between 2 and 1 month before death. The proportion reporting serious difficulties with self-care activities increased from 14% to 43%. The most seriously affected activity could not be distinguished from the EORTC QLQ-C30 scores. Levels of fatigue, dyspnoea and appetite loss increased significantly. More than 50% of the patients had severe pain at all assessments, and only a minor number (8%) reported any improvement. The findings have implications for the planning of care and indicate that further research is required to improve assessment, treatment and follow-up procedures. Adequate pain treatment seems still to be a challenge. Anorexia, fatigue as well as dyspnoea are all symptoms that need further focus.
5.	Bjordal, Kristin, et al. (författare) A prospective study of quality of life in head and neck cancer patients. Part II: Longitudinal data 2001 Ingår i: Laryngoscope. - 1531-4995. ; 111:8, s. 1440-1452 Tidskriftsartikel (refereegranskat)abstract OBJECTIVES: To evaluate the health-related quality of life (HRQL) of patients with head and neck cancer during and after treatment with radiotherapy, surgery, and chemotherapy. STUDY DESIGN: Prospective, descriptive study. METHODS: All new patients in four institutions in Norway and Sweden were asked to participate. Health-related quality of life was assessed at baseline and at 1, 2, 3, 6, and 12 months after start of treatment by means of the European Organization for Research and Treatment of Cancer (EORTC) Core Quality of Life Questionnaire and the EORTC head and neck cancer-specific questionnaire. Baseline results are described elsewhere; longitudinal results are presented in the current article. Three hundred fifty-seven patients with cancer in the oral cavity, pharynx, larynx, nose, sinuses, and salivary glands and neck node metastases from unknown primaries filled in the questionnaires at baseline. RESULTS: Seventy-eight percent of the patients who were alive after 12 months filled in all questionnaires (218/280). The general trend was that HRQL deteriorated significantly during treatment, followed by a slow recovery until the 12-month follow-up with few exceptions (senses, dry mouth, and sexuality). Patients who later died reported worse HRQL at each assessment point compared with patients who filled in all six questionnaires, whereas those who dropped out of the study for other reasons were quite similar to patients who filled in all questionnaires. The patients with pharyngeal cancer in general reported worse HRQL compared with the other groups and did not reach pretreatment values in several domains. Stage was also an important factor for HRQL in patients with head and neck cancer. CONCLUSION: Detailed knowledge about the differences between groups and changes over time may aid us in the communication with patients and in the design of intervention studies focusing on improvement of the support and rehabilitation of patients with head and neck cancer.
6.	Borchgrevink, Petter C., et al. (författare) A Clinical Description of Chronic Pain in a General Population Using ICD-10 and ICD-11 (The HUNT Pain Examination Study) 2022 Ingår i: Journal of Pain. - : Elsevier. - 1526-5900 .- 1528-8447. ; 23:2, s. 337-348 Tidskriftsartikel (refereegranskat)abstract The purpose was to present a total description, distribution, and ranking of chronic pain conditions in the general population. This was based on structured clinical examinations of a random sample from a population-based survey (HUNT3) with a calculated oversampling of participants with chronic pain. Supplemented with access to hospital reports, the examination was performed by experienced physicians and psychologists using a consistent definition of chronic pain as well as ICD-10- and the new ICD-11-classification. The main findings were that a higher proportion of the 551 participants had chronic pain assessed by clinical examination (399) than by self-report in a survey the same day (337). Among those with examination-verified chronic pain estimated from HUNT3 to represent 27.9% of the general population, 63% had chronic primary pain, 81% musculoskeletal pain, and 77% more than one chronic pain condition. When separating chronic primary from chronic secondary pain according to ICD-11, the weighted prevalence was 17.7% for chronic pain conditions of unknown and 10.2% of known cause. When all the participants’ conditions were accounted for, the most prevalent was nonspecific low back (10.8%) and neck pain (7.6%). Participants with chronic primary pain did not have significantly more psychopathology than those with chronic secondary pain: 14.5% versus 12.5%.
7.	Brenne, Elisabeth, et al. (författare) Depressed patients with incurable cancer : which depressive symptoms do they experience? 2013 Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 11:6, s. 491-501 Forskningsöversikt (refereegranskat)abstract OBJECTIVE: Diagnosing depressive disorders in palliative care is challenging because of the overlap between some depressive symptoms and cancer-related symptoms, such as loss of appetite and fatigue. In order to improve future assessment of depression in palliative care, depressive symptoms experienced by patients receiving pharmacological treatment for depression were assessed and compared to the American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria for major depressive disorder.METHOD: Thirty Norwegian (n = 20) and Austrian (n = 10) patients with advanced cancer were included. Semistructured interviews on symptom experiences were conducted and transcribed verbatim. By the phenomenographic method, patients' symptom experiences were extracted and sorted by headings, first individually and then across patients. The patients subsequently rated 24 symptoms numerically including the DSM-IV depression criteria.RESULTS: Lowered mood and a diminished motivational drive were prominent and reflected the two main DSM-IV symptom criteria. A relentless focus on their actual situation, restlessness, disrupted sleep, feelings of worthlessness, feelings of guilt, and thoughts of death as a solution were variably experienced. Appetite and weight changes, fatigue and psychomotor retardation were indistinguishable from cancer symptoms. All these symptoms reflected DSM-IV symptom criteria. Some major symptoms occurred that are not present in the DSM-IV symptom criteria: despair, anxiety, and social withdrawal. The numerical ratings of symptoms were mainly in accordance with the findings from the qualitative analysis.SIGNIFICANCE OF RESULTS: Despair, anxiety, and social withdrawal are common symptoms in depressed patients with incurable cancer, and, therefore, hypothesized as candidate symptom criteria. Other symptom criteria might need adjustment for improvement of relevance in this group of patients.
8.	Cohen, Joachim, et al. (författare) Using death certificate data to study place of death in 9 European countries : opportunities and weaknesses 2007 Ingår i: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 7, s. 283- Tidskriftsartikel (refereegranskat)abstract Background: Systematic and reliable epidemiological information at population level, preferably cross-national, is needed for an adequate planning of (end-of-life) health care policies, e. g. concerning place of death, but is currently lacking. This study illustrates opportunities and weaknesses of death certificate data to provide such information on place of death and associated factors in nine European countries (seven entire countries and five regions). Methods: We investigated the possibility and modality of all partners in this international comparative study (BE, DK, IT, NL, NO, SE, UK) to negotiate a dataset containing all deaths of one year with their national/regional administration of mortality statistics, and analysed the availability of information about place of death as well as a number of clinical, socio-demographic, residential and healthcare system factors. Results: All countries negotiated a dataset, but rules, procedures, and cost price to get the data varied strongly between countries. In total, about 1.1 million deaths were included. For four of the nine countries not all desired categories for place of death were available. Most desired clinical and socio-demographic information was available, be it sometimes via linkages with other population databases. Healthcare system factors could be made available by linking existing healthcare statistics to the residence of the deceased. Conclusion: Death certificate data provide information on place of death and on possibly associated factors and confounders in all studied countries. Hence, death certificate data provide a unique opportunity for cross-national studying and monitoring of place of death. However, modifications of certain aspects of death certificate registration and rules of data-protection are perhaps required to make international monitoring of place of death more feasible and accurate.
9.	Currow, David C, et al. (författare) Can variability in the effect of opioids on refractory breathlessness be explained by genetic factors? 2015 Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 5:5 Tidskriftsartikel (refereegranskat)abstract Opioids modulate the perception of breathlessness with a considerable variation in response, with poor correlation between the required opioid dose and symptom severity. The objective of this hypothesis-generating, secondary analysis was to identify candidate single nucleotide polymorphisms (SNP) from those associated with opioid receptors, signalling or pain modulation to identify any related to intensity of breathlessness while on opioids. This can help to inform prospective studies and potentially lead to better tailoring of opioid therapy for refractory breathlessness.
10.	Ekström, Magnus P., et al. (författare) Mild to Moderate Cognitive Impairment Does Not Affect the Ability to Self-Report Important Symptoms in Patients With Cancer : A Prospective Longitudinal Multinational Study (EPCCS) 2020 Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924. ; 60:2, s. 2-354 Tidskriftsartikel (refereegranskat)abstract Context: Patients with advanced cancer commonly suffer from both distressing symptoms and cognitive impairment, but the effect of cognitive impairment on the reliability and validity of symptom self-report is unknown. Objectives: To evaluate the reliability and validity of symptom self-report in cancer outpatients with and without mild to moderate cognitive impairment. Methods: This was an analysis of the longitudinal European Palliative Care Cancer Symptom study of adults with incurable cancer in specialized palliative care (30 centers across 12 countries). Patients who could not comply with the study because of severe cognitive impairment were excluded. Cognitive status on the Mini-Mental State Examination short version and nine symptoms (pain, tiredness, drowsiness, nausea, appetite, breathlessness, depression, anxiety, and well-being) using the revised Edmonton Symptom Assessment System were self-reported at baseline and one-month follow-up. Reliability was analyzed using intraclass correlation coefficients and validity using regression of each symptom with health-related quality of life (HrQoL) measured with European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care. Results: A total of 1047 patients were included: mean age of 62.9 years; 54.4% women; main cancer types were of digestive organs (26.6%), breast (21.6%), and lungs (21.2%). Cognitive impairment was present in 181 (17.3%) at baseline and associated with worse self-reported tiredness, drowsiness, appetite, and depression. Reliability (intraclass correlation coefficient) and validity (associations with HrQoL) were similar between people with/without cognitive impairment across the nine symptoms, except breathlessness, which showed a weaker relation to HrQoL in patients with cognitive impairment. Findings were robust in sensitivity analyses and after controlling for potential confounders. Conclusion: In advanced cancer, self-report of nine major symptoms was reliable and valid also in people with mild-to-moderate cognitive impairment.
11.	Fearon, Kenneth, et al. (författare) Definition and classification of cancer cachexia: an international consensus. 2011 Ingår i: The lancet oncology. - 1474-5488. ; 12:5, s. 489-95 Tidskriftsartikel (refereegranskat)abstract To develop a framework for the definition and classification of cancer cachexia a panel of experts participated in a formal consensus process, including focus groups and two Delphi rounds. Cancer cachexia was defined as a multifactorial syndrome defined by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment. Its pathophysiology is characterised by a negative protein and energy balance driven by a variable combination of reduced food intake and abnormal metabolism. The agreed diagnostic criterion for cachexia was weight loss greater than 5%, or weight loss greater than 2% in individuals already showing depletion according to current bodyweight and height (body-mass index [BMI] <20 kg/m(2)) or skeletal muscle mass (sarcopenia). An agreement was made that the cachexia syndrome can develop progressively through various stages--precachexia to cachexia to refractory cachexia. Severity can be classified according to degree of depletion of energy stores and body protein (BMI) in combination with degree of ongoing weight loss. Assessment for classification and clinical management should include the following domains: anorexia or reduced food intake, catabolic drive, muscle mass and strength, functional and psychosocial impairment. Consensus exists on a framework for the definition and classification of cancer cachexia. After validation, this should aid clinical trial design, development of practice guidelines, and, eventually, routine clinical management.
12.	Hammerlid, Eva, et al. (författare) Prospective, longitudinal quality-of-life study of patients with head and neck cancer: a feasibility study including the EORTC QLQ-C30 1997 Ingår i: Otolaryngology: Head and Neck Surgery. - 0194-5998. ; 116:6, s. 666-673 Tidskriftsartikel (refereegranskat)abstract Despite modern advances in the treatment of head and neck cancer, the survival rate fails to improve. Considering the different treatment modalities involved, quality of life has been thought of as an additional end point criterion for use in clinical trials. A Nordic protocol to measure the quality of life of head and neck cancer patients before, during, and after treatment was established. Before the study, a pilot study was done with this protocol. The main purpose of this pilot study was to find out whether this cancer population would answer quality-of-life questionnaires repeatedly (six times) over a 1-year period and whether the chosen questionnaires-a core questionnaire (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30)), a tumor-specific questionnaire, and a psychological distress measure (Hospital Anxiety and Depression scale (HAD))-were sensitive for changes to functions and symptoms during the study year. The results presented in this article all refer to the pilot study. Forty-eight consecutive patients agreed to participate in the study. The most common tumor locations were the oral cavity (17) and the larynx (12). Almost all patients received combined treatment: 45 of 48 radiation therapy, 18 of 48 chemotherapy, and 17 of 48 surgery. After the primary treatment, 40 patients had complete tumor remission. Four of the 48 patients did not answer any questionnaires and were therefore excluded from the study. Of the remaining 44 patients, 3 died during the study year, and another 6 withdrew for various reasons. Thirty-five (85%) of the 41 patients alive at the 1-year follow-up answered all six questionnaires and thus completed the study. Mailed questionnaires were used throughout the study. All questionnaires were well accepted and found to be sensitive to changes during the study year. The greatest variability was found for symptoms and functions related specifically to head and neck cancer. The symptoms were swallowing difficulties, hoarse voice, sore mouth, dry mouth, and problems with taste. They all showed the same pattern, with an increase of symptoms during and just after finishing the treatment. The HAD scale revealed a high level of psychological distress, with 21% probable cases of psychiatric morbidity at diagnosis. In conclusion, it was shown that the study design and questionnaires were feasible for the forthcoming prospective quality-of-life assessment of Swedish and Norwegian head and neck cancer patients.
13.	Jordhoy, Marit S., et al. (författare) Quality of life in palliative cancer care: results from a cluster randomized trial 2001 Ingår i: Journal of Clinical Oncology. - 1527-7755. ; 19:18, s. 3884-3894 Tidskriftsartikel (refereegranskat)abstract PURPOSE: To assess the impact of comprehensive palliative care on patients' quality of life. The intervention was based on cooperation between a palliative medicine unit and the community service and was compared with conventional care. PATIENTS AND METHODS: A cluster randomized trial was carried out, with community health care districts defined as the clusters. Patients from these districts who had malignant disease and survival expectancy between 2 to 9 months were entered onto the trial. The main quality-of-life end points were physical and emotional functioning, pain, and psychologic distress assessed monthly by using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30) questionnaire and Impact of Event scale (IES). In total, 235 intervention patients and 199 controls were included. RESULTS: During the initial 4 months of follow-up, the compliance was good (72%) and comparable among treatment groups. No significant differences on any of the quality-of-life scores were found. At later assessments and for scores that were made within 3 months before death, there was also no consistent tendency in favor of any treatment group on the main outcomes or other EORTC QLQ-C30 scales/items. CONCLUSION: A general program of palliative care may be important to ensure flexibility and to meet the needs of terminally ill patients. However, to achieve improvements on a group level of the various dimensions of quality of life, specific interventions directed toward specific symptoms or problems may have to be defined, evaluated, and included in the program.
14.	Knudsen, Anne Kari, et al. (författare) Interviews with patients with advanced cancer-another step towards an international cancer pain classification system 2012 Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 20:10, s. 2491-2500 Tidskriftsartikel (refereegranskat)abstract Patients' involvement in the development of assessment tools is recommended, and the European Palliative Care Research Collaborative has adhered to this when developing a shared language for cancer pain, an international assessment and classification system. Study objectives were to investigate how patients ranked the relevance of several previously identified pain domains, to investigate patients' perception of the pain experience and to disclose additional, relevant pain domains for cancer pain classification to those identified in the literature. Semistructured interviews with advanced cancer patients treated with opioids were performed and analysed verbatim. Patients scored the relevance of predefined pain domains on an 11-point Numerical Rating Scale. Thirty-three Norwegian and Austrian patients were included (16 females and 17 males); the mean age was 63 years, and the mean Karnofsky performance score was 65. The ranking of domains was as follows etiology (mean Numerical Rating Scale score, 8.5), duration (8.0), intensity (7.4), coping (7.1), physical (5.9) and psychological functioning (5.8). Sleep was identified as a new candidate domain to include in the system. The patients emphasised consequences of having pain, for example, poor physical functioning and psychological distress. Previously identified pain domains were confirmed to be relevant to the patients; however, the ranking differed from the experts' ranking. Sleep disturbances may be added as a domain in a future classification system.
15.	Korwisi, Beatrice, et al. (författare) Classification algorithm for the International Classification of Diseases-11 chronic pain classification : development and results from a preliminary pilot evaluation 2021 Ingår i: Pain. - : Lippincott Williams & Wilkins. - 0304-3959 .- 1872-6623. ; 162:7, s. 2087-2096 Tidskriftsartikel (refereegranskat)abstract ABSTRACT: The International Classification of Diseases-11 (ICD-11) chronic pain classification includes about 100 chronic pain diagnoses on different diagnostic levels. Each of these diagnoses requires specific operationalized diagnostic criteria to be present. The classification comprises more than 200 diagnostic criteria. The aim of the Classification Algorithm for Chronic Pain in ICD-11 (CAL-CP) is to facilitate the use of the classification by guiding users through these diagnostic criteria. The diagnostic criteria were ordered hierarchically and visualized in accordance with the standards defined by the Society for Medical Decision Making Committee on Standardization of Clinical Algorithms. The resulting linear decision tree underwent several rounds of iterative checks and feedback by its developers, as well as other pain experts. A preliminary pilot evaluation was conducted in the context of an ecological implementation field study of the classification itself. The resulting algorithm consists of a linear decision tree, an introduction form, and an appendix. The initial decision trunk can be used as a standalone algorithm in primary care. Each diagnostic criterion is represented in a decision box. The user needs to decide for each criterion whether it is present or not, and then follow the respective yes or no arrows to arrive at the corresponding ICD-11 diagnosis. The results of the pilot evaluation showed good clinical utility of the algorithm. The CAL-CP can contribute to reliable diagnoses by structuring a way through the classification and by increasing adherence to the criteria. Future studies need to evaluate its utility further and analyze its impact on the accuracy of the assigned diagnoses.
16.	Liposits, Gabor, et al. (författare) Nutrition in Cancer Care : A Brief, Practical Guide With a Focus on Clinical Practice 2021 Ingår i: JCO ONCOLOGY PRACTICE. - : Lippincott Williams & Wilkins. - 2688-1527 .- 2688-1535. ; 17:7, s. e992-e998 Tidskriftsartikel (refereegranskat)abstract This overview aims to create an understanding of the nutritional issues concerning patients with cancer and provide evidence-based practical guidance to healthcare professionals (physicians, nurses, and dietitians), caregivers, and all others involved in the care of patients with cancer. The focus of this paper is therefore on providing a simple guide for daily clinical practice. The theoretical background and in-depth comprehensive reviews of malnutrition are described elsewhere. Nutrition plays a crucial role in cancer care. It affects treatment tolerability, outcomes, and quality of life. However, a focus on nutrition is still lacking among oncologists because of insufficient training in nutrition topics received during graduate and postgraduate training and an underestimation of its importance. The consequences of the disease and its treatment, such as anorexia-sarcopenia-cachexia, are therefore still often overlooked, underdiagnosed, and undertreated. The authors have summarized the most important challenges, evidence-based recommendations, and common clinical scenarios to bridge the gap between comprehensive guidelines and clinical practice, where brief concrete advice is preferred to systematic reviews. Furthermore, an easy applicable overview is provided, which can be used as a guide during daily routines.
17.	Lund, Jo-Å, et al. (författare) Late radiation effects to the rectum and anus after treatment for prostate cancer; validity of the LENT/SOMA score 2013 Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 52:4, s. 727-735 Tidskriftsartikel (refereegranskat)abstract Background. The Late Effects Normal Tissue/Subjective Objective Management Analytic (LENT/SOMA) system for grading of side effects after radiotherapy was proposed several years ago. Only a few studies have previously been performed on the validity of the LENT/SOMA. The aim of the present study was to validate the LENT/SOMA scoring system for recto-anal side effects after treatment for prostate cancer in a randomized trial.Material and methods. A total of 875 patients with locally advanced prostate cancer were randomized to either hormonal treatment alone or hormonal treatment plus radiotherapy in the Scandinavian Prostate Cancer Group 7 (SPCG-7) study. At least three years after treatment was started, the 178 patients that were randomized at St. Olavs Hospital were approached. One hundred and three patients of these accepted inclusion. The side effects according to LENT/SOMA were graded by oncologist and nurse. In addition, side effects were graded according to the European Organisation for Research and Treatment of Cancer and the Radiation Therapy Oncology Group (EORTC/RTOG) toxicity scale and patient-reported health-related quality of life (HRQOL) questionnaires. Content/face validity, sensitivity and inter-rater reliability of the LENT/SOMA tables for rectum were analyzed.Results. Content/face analysis of LENT/SOMA revealed serious problems. Significant correlations (Spearman's rho > 0.4) were found between three of 15 LENT/SOMA items and similar HRQOL items. LENT/SOMA score made it possible to detect significant differences between the two groups of patients (p < 0.001), EORTC/RTOG toxicity score did not (p = 0.138). Inter-rater reliability was acceptable.Conclusions. LENT/SOMA scoring system for recto-anal side effects after radiotherapy for prostate cancer displays serious difficulties in the present study. Replacement of LENT/SOMA tables for rectum by a combination of patient-reported HRQOL questionnaires, clinical examination and objective physiological measurements might be called for.
18.	Muscaritoli, Maurizio, et al. (författare) ESPEN practical guideline : Clinical Nutrition in cancer 2021 Ingår i: Clinical Nutrition. - : Elsevier. - 0261-5614 .- 1532-1983. ; 40:5, s. 2898-2913 Tidskriftsartikel (refereegranskat)abstract Background: This practical guideline is based on the current scientific ESPEN guidelines on nutrition in cancer patients. Methods: ESPEN guidelines have been shortened and transformed into flow charts for easier use in clinical practice. The practical guideline is dedicated to all professionals including physicians, dieticians, nutritionists and nurses working with patients with cancer. Results: A total of 43 recommendations are presented with short commentaries for the nutritional and metabolic management of patients with neoplastic diseases. The disease-related recommendations are preceded by general recommendations on the diagnostics of nutritional status in cancer patients. Conclusion: This practical guideline gives guidance to health care providers involved in the management of cancer patients to offer optimal nutritional care.
19.	Petersen, Morten Aa, et al. (författare) Development of an item bank for computerized adaptive test (CAT) measurement of pain. 2016 Ingår i: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. - : Springer Science and Business Media LLC. - 1573-2649. ; 25:1, s. 1-11 Tidskriftsartikel (refereegranskat)abstract Patient-reported outcomes should ideally be adapted to the individual patient while maintaining comparability of scores across patients. This is achievable using computerized adaptive testing (CAT). The aim here was to develop an item bank for CAT measurement of the pain domain as measured by the EORTC QLQ-C30 questionnaire.
20.	Reidunsdatter, Randi J., et al. (författare) Validation of the intestinal part of the prostate cancer questionnaire "QUFW94": psychometric properties, responsiveness, and content validity 2010 Ingår i: International Journal of Radiation Oncology, Biology, Physics. - : Elsevier. - 0360-3016 .- 1879-355X. ; 77:3, s. 793-804 Tidskriftsartikel (refereegranskat)abstract PURPOSE: Several treatment options are available for patients with prostate cancer. Applicable and valid self-assessment instruments for assessing health-related quality of life (HRQOL) are of paramount importance. The aim of this study was to explore the validity and responsiveness of the intestinal part of the prostate cancer-specific questionnaire QUFW94. METHODS AND MATERIALS: The content of the intestinal part of QUFW94 was examined by evaluation of experienced clinicians and reviewing the literature. The psychometric properties and responsiveness were assessed by analyzing HRQOL data from the randomized study Scandinavian Prostate Cancer Group 7 (SPCG)/Swedish Association for Urological Oncology 3 (SFUO). Subscales were constructed by means of exploratory factor analyses. Internal consistency was assessed by Cronbach's alpha. Responsiveness was investigated by comparing baseline scores with the 4-year posttreatment follow-up. RESULTS: The content validity was found acceptable, but some amendments were proposed. The factor analyses revealed two symptom scales. The first scale comprised five items regarding general stool problems, frequency, incontinence, need to plan toilet visits, and daily activity. Cronbach's alpha at 0.83 indicated acceptable homogeneity. The second scale was less consistent with a Cronbach's alpha at 0.55. The overall responsiveness was found to be very satisfactory. CONCLUSION: Two scales were identified in the bowel dimension of the QUFW94; the first one had good internal consistency. The responsiveness was excellent, and some modifications are suggested to strengthen the content validity.
21.	Scholz, Joachim, et al. (författare) The IASP classification of chronic pain for ICD-11 : chronic neuropathic pain. 2019 Ingår i: Pain. - : Ovid Technologies (Wolters Kluwer Health). - 0304-3959 .- 1872-6623. ; 160:1, s. 53-59 Tidskriftsartikel (refereegranskat)abstract The upcoming 11th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD) of the World Health Organization (WHO) offers a unique opportunity to improve the representation of painful disorders. For this purpose, the International Association for the Study of Pain (IASP) has convened an interdisciplinary task force of pain specialists. Here, we present the case for a reclassification of nervous system lesions or diseases associated with persistent or recurrent pain for ≥3 months. The new classification lists the most common conditions of peripheral neuropathic pain: trigeminal neuralgia, peripheral nerve injury, painful polyneuropathy, postherpetic neuralgia, and painful radiculopathy. Conditions of central neuropathic pain include pain caused by spinal cord or brain injury, poststroke pain, and pain associated with multiple sclerosis. Diseases not explicitly mentioned in the classification are captured in residual categories of ICD-11. Conditions of chronic neuropathic pain are either insufficiently defined or missing in the current version of the ICD, despite their prevalence and clinical importance. We provide the short definitions of diagnostic entities for which we submitted more detailed content models to the WHO. Definitions and content models were established in collaboration with the Classification Committee of the IASP's Neuropathic Pain Special Interest Group (NeuPSIG). Up to 10% of the general population experience neuropathic pain. The majority of these patients do not receive satisfactory relief with existing treatments. A precise classification of chronic neuropathic pain in ICD-11 is necessary to document this public health need and the therapeutic challenges related to chronic neuropathic pain.
22.	Treede, Rolf-Detlef, et al. (författare) A classification of chronic pain for ICD-11. 2015 Ingår i: Pain. - : Ovid Technologies (Wolters Kluwer Health). - 0304-3959 .- 1872-6623. ; 156:6, s. 1003-1007 Tidskriftsartikel (refereegranskat)
23.	Treede, Rolf-Detlef, et al. (författare) Chronic pain as a symptom or a disease : the IASP Classification of Chronic Pain for the International Classification of Diseases (ICD-11). 2019 Ingår i: Pain. - : Ovid Technologies (Wolters Kluwer Health). - 0304-3959 .- 1872-6623. ; 160:1, s. 19-27 Tidskriftsartikel (refereegranskat)abstract Chronic pain is a major source of suffering. It interferes with daily functioning and often is accompanied by distress. Yet, in the International Classification of Diseases, chronic pain diagnoses are not represented systematically. The lack of appropriate codes renders accurate epidemiological investigations difficult and impedes health policy decisions regarding chronic pain such as adequate financing of access to multimodal pain management. In cooperation with the WHO, an IASP Working Group has developed a classification system that is applicable in a wide range of contexts, including pain medicine, primary care, and low-resource environments. Chronic pain is defined as pain that persists or recurs for more than 3 months. In chronic pain syndromes, pain can be the sole or a leading complaint and requires special treatment and care. In conditions such as fibromyalgia or nonspecific low-back pain, chronic pain may be conceived as a disease in its own right; in our proposal, we call this subgroup "chronic primary pain." In 6 other subgroups, pain is secondary to an underlying disease: chronic cancer-related pain, chronic neuropathic pain, chronic secondary visceral pain, chronic posttraumatic and postsurgical pain, chronic secondary headache and orofacial pain, and chronic secondary musculoskeletal pain. These conditions are summarized as "chronic secondary pain" where pain may at least initially be conceived as a symptom. Implementation of these codes in the upcoming 11th edition of International Classification of Diseases will lead to improved classification and diagnostic coding, thereby advancing the recognition of chronic pain as a health condition in its own right.
24.	Wasteson, Elisabet, et al. (författare) Depression assessment and classification in palliative cancer patients : a systematic literature review 2009 Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:8, s. 739-753 Forskningsöversikt (refereegranskat)abstract The objective of this study was to review the literature on depression in palliative cancer care in order to identify which assessment methods and classification systems have been used in studies of depression. Extensive electronic database searches in PubMed, CancerLit, CINAHL, PsychINFO, EMBASE and AgeLine as well as hand search were carried out. In the 202 included papers, 106 different assessment methods were used. Sixty-five of these were only used once. All together, the Hospital Anxiety and Depression Scale ( HADS) was the most commonly used assessment method. However, there were regional differences and while the HADS dominated in Europe it was quite seldom used in Canada or in the USA. Few prevalence and intervention studies used assessment methods with an explicit reference to a diagnostic system. There were in total few case definitions of depression. Among these, the classifications were in general based on cut-off scores (77%) and not according to diagnostic systems. The full range of the DSM-IV diagnostic criteria was seldom assessed, i.e. less than one-third of the assessments in the review took into account the duration of symptoms and 18% assessed consequences and impact upon patient functioning. A diversity of assessment methods had been used. Few studies classified depression by referring to a diagnostic system or by using cut-off scores. Evidently, there is a need for a consensus on how to assess and conceptualize depression and related conditions in palliative care.
25.	Wasteson, Elisabet, 1969- (författare) Living and Coping with Cancer : Specific Challenges and Adaptation 2007 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract The overall aims of this thesis were to prospectively investigate how specific challenges among patients with commonly occurring cancers are related to adaptation and well-being, to predict later well-being using a range of psychosocial aspects and to compare two ways of measuring coping with cancer. This was studied at diagnosis in patients with gastrointestinal cancers and their spouses and at termination of cancer treatment and during follow-up in a heterogeneous group of cancers. At diagnosis, higher levels of psychological distress were accompanied both by more coping attempts and less perceived control over the stressful events. Somatic aspects and Everyday concerns were frequent stressful events. The most frequently used coping strategies were emotion-focused. The Daily Coping Assessment (DCA) rendered a varied picture of ways of handling the stressful events (Study I). When studying coping as a process, the DCA has advantages compared to the commonly used measure MAC, since DCA better separates coping from both the stressful event and outcome. A comparison of the DCA and the MAC rendered differences regarding the usage of coping strategies (Study II). Patients with higher levels of anxiety/depression also had higher discrepancies between attainment and importance for most life values compared to patients with less anxiety/depression. For the patients, but not for the spouses, the discrepancies for several life values along with anxiety and depression decreased over time (Study III). Anxiety/depression at termination of treatment are strong predictors for anxiety/depression and QoL at follow-up. However, other variables like psychiatric history, the bother an event caused, the coping strategy Acceptance, the stressful event Thoughts/affects and emotional and instrumental aspects of social support contributed to the prediction (Study IV). Thus, it is concluded that detailed information regarding specific and frequent situations among cancer patients is possible to reveal and necessary for a better understanding of what influences well-being.

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