| 1. |
- Lawler, M., et al.
(författare)
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The European Cancer Patient's Bill of Rights, update and implementation 2016
- 2016
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Ingår i: Esmo Open. - : Elsevier BV. - 2059-7029. ; 1:6
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Tidskriftsartikel (refereegranskat)abstract
- In this implementation phase of the European Cancer Patient's Bill of Rights (BoR), we confirm the following three patient-centred principles that underpin this initiative: 1. The right of every European citizen to receive the most accurate information and to be proactively involved in his/her care. 2. The right of every European citizen to optimal and timely access to a diagnosis and to appropriate specialised care, underpinned by research and innovation. 3. The right of every European citizen to receive care in health systems that ensure the best possible cancer prevention, the earliest possible diagnosis of their cancer, improved outcomes, patient rehabilitation, best quality of life and affordable health care. Agree our high-level goal. The vision of 70% longterm survival for patients with cancer in 2035, promoting cancer prevention and cancer control and the associated progress in ensuring good patient experience and quality of life. Establish the major mechanisms to underpin its delivery. (1) The systematic and rigorous sharing of best practice between and across European cancer healthcare systems and (2) the active promotion of Research and Innovation focused on improving outcomes; (3) Improving access to new and established cancer care by sharing best practice in the development, approval, procurement and reimbursement of cancer diagnostic tests and treatments. Work with other organisations to bring into being a Europe based centre that will (1) systematically identify, evaluate and validate and disseminate best practice in cancer management for the different countries and regions and (2) promote Research and Innovation and its translation to maximise its impact to improve outcomes.
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| 2. |
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| 3. |
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| 4. |
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| 5. |
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| 6. |
- Bjordal, K, et al.
(författare)
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A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients
- 2000
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Ingår i: European Journal of Cancer. - 1879-0852. ; 36:14, s. 1796-1807
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Tidskriftsartikel (refereegranskat)abstract
- This study tests the reliability and validity of the European Organization for Research and Treatment of Cancer (EORTC) head and neck cancer module (QLQ-H&N35) and version 3.0 of the EORTC Core Questionnaire (QLQ-C30) in 622 head and neck cancer patients from 12 countries. The patients completed the QLQ-C30, the QLQ-H&N35 and a debriefing questionnaire before antineoplastic treatment or at a follow-up. 232 patients receiving treatment completed a second questionnaire after treatment. Compliance was high and the questionnaire was well accepted by the patients. Multitrait scaling analysis confirmed the proposed scale structure of the QLQ-H&N35. The QLQ-H&N35 was responsive to differences between disease status, site and patients with different Karnofsky performance status, and to changes over time. The new physical functioning scale (with a four-point response format) of version 3.0 of the QLQ-C30 was shown to be more reliable than previous versions. Thus, the QLQ-H&N35, in conjunction with the QLQ-C30, appears to be reliable, valid and applicable to broad multicultural samples of head and neck cancer patients.
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| 7. |
- Jerkeman, Mats, et al.
(författare)
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CHOP versus MACOP-B in aggressive lymphoma--a Nordic Lymphoma Group randomised trial
- 1999
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Ingår i: Annals of Oncology. - 1569-8041. ; 10:9, s. 1079-1086
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The long-term survival of patients with advanced stage aggressive lymphoma has not improved significantly during the last twenty years. In a randomised trial, the efficacy of MACOP-B, a six-drug weekly chemotherapy regimen, was compared to CHOP, the current standard regimen, in terms of overall and failure-free survival, toxicity and health related quality of life. PATIENTS AND METHODS: Four hundred five patients with aggressive lymphoma, stage II-IV, age 18-67, were randomised to receive either 12 weeks of MACOP-B or 8 courses of CHOP over 24 weeks. Special emphasis was put in the definition of Ann Arbor stage in extranodal disease. A subset of 95 patients also entered a quality of life study, based on the EORTC QLQ-C30. RESULTS: Thirty-one patients were ineligible. Among the remaining 374 patients, the median age was 52 years. According to the age-adjusted International Prognostic Index, 37% were 'high-intermediate' or 'high-risk' patients. No difference could be demonstrated, either in overall survival (60% at five years in the MACOP-B group and 59% in the CHOP group) or in failure-free survival (47% at five years with MACOP-B and 44% with CHOP). In terms of quality of life, physical function and global quality of life were more impaired in patients receiving MACOP-B, who also exhibited more non-haematological toxicity. CONCLUSION: No superiority of MACOP-B compared to CHOP could be demonstrated. CHOP remains the treatment of choice in low-risk patients. At present, intensified or experimental treatment should be reserved for high-risk disease.
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| 8. |
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| 9. |
- Jerkeman, Mats, et al.
(författare)
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Health-related quality of life and its potential prognostic implications in patients with aggressive lymphoma: a Nordic Lymphoma Group Trial
- 2001
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Ingår i: Medical Oncology. - 1559-131X. ; 18:1, s. 85-94
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Tidskriftsartikel (refereegranskat)abstract
- This study was conducted to explore treatment and disease-related effects on health-related quality of life (HRQoL) in patients with aggressive lymphoma, to identify predictors for impaired long-term HRQoL, and to analyze the prognostic value of pretreatment HRQoL. Ninety-five patients with aggressive lymphoma, constituting a subset of a randomized multicenter trial comparing CHOP and MACOP-B, entered a HRQoL study, using the EORTC QLQ-C30 questionnaire. Patient scores were compared to scores from an age- and gender-adjusted reference population sample, and evaluation of the prognostic value of pretreatment QoL scores in relation to clinical prognostic factors was performed. Before treatment, patients exhibited lower scores of global QoL, physical, role, and social functions, and more appetite loss, compared to the reference population. Role functioning improved compared to baseline, but remained depressed compared to the reference group more than 8 mo after end of treatment. By then, the patient group displayed no difference in other HRQoL variables compared to that of the reference population. No reliable predictor for impaired long-term HRQoL could be identified. In multivariate analysis, including the factors of the International Prognostic Index, pretreatment global QoL was an independent prognostic marker for overall survival. In conclusion, in this population with aggressive lymphoma and favorable prognostic features, HRQoL was not substantially affected during the first year after diagnosis. Pretreatment global QoL may constitute a significant prognostic factor, meriting further investigation in prospective studies.
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| 10. |
- Jordhoy, M S, et al.
(författare)
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A palliative-care intervention and death at home: a cluster randomised trial
- 2000
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Ingår i: The Lancet. - 1474-547X. ; 356:9233, s. 888-893
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The Palliative Medicine Unit at University Hospital of Trondheim, Norway, started an intervention programme that aims to enable patients to spend more time at home and die there if they prefer. Close cooperation was needed with the community health-care professionals, who acted as the principal formal caregivers, and a multidisciplinary consultant team coordinated the care. We did a cluster randomised trial to assess the intervention's effectiveness compared with conventional care METHODS: Community health-care districts in and around Trondheim, Norway, were defined as the clusters to be randomised. We enrolled 434 patients (235 assigned intervention and 199 conventional care [controls]) in these districts who had incurable malignant disease and an expected survival of 2-9 months. Main outcomes were place of death and time spent in institutions in the last month of life. FINDINGS: 395 patients died. Of these, more intervention patients than controls died at home (54 [25%] vs 26 [15%], p<0.05). The time spent at home was not significantly increased, although intervention patients spent a smaller proportion of time in nursing homes in the last month of life than did controls (7.2 vs 14.6%, p<0.05). Hospital use was similar in the two groups. INTERPRETATION: The palliative-care intervention enabled more patients to die at home. More resources for care in the home (palliative care training and staff) and an increased focus on use of nursing homes would be necessary, however, to increase time at home and reduce hospital admissions.
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| 11. |
- Jordhoy, M S, et al.
(författare)
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Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial
- 1999
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 13:4, s. 299-310
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Tidskriftsartikel (refereegranskat)abstract
- Randomized controlled trials (RCTs) in palliative cancer care often experience methodological problems. In this paper we discuss issues of major concern, including recruitment, patient attrition and compliance, arising from an RCT that compared comprehensive palliative care to conventional care. The main criteria for trial entry were incurable malignant disease and a survival expectancy of between 2 and 9 months. Patients' health-related quality of life (HRQL), self-assessed by multi-item questionnaires, was a defined endpoint. The planned number of patients was successfully recruited, although the patients were referred late in the course of their disease so that follow-up tended to be short. Compliance in completing HRQL questionnaires was good up to 1 month before the patient's death; but in the final weeks it was found to drop substantially. Based on our experience, recommendations are given for those planning similar research. Procedures for improving patient recruitment are suggested, stressing the need for local data management, repeated information to referral sources, extensive screening for potentially eligible patients and simple referral routines. Precise inclusion criteria, including prognostic factors other than physicians' estimates of life expectancy, should be used to ensure a sufficient follow-up period. For HRQL assessment, multi-item questionnaires can achieve excellent compliance up to 1 month before patients' death, but in order to evaluate the very final weeks of life we recommend the use of simpler methods.
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| 12. |
- Jordhoy, M S, et al.
(författare)
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Quality of life in advanced cancer patients: the impact of sociodemographic and medical characteristics
- 2001
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Ingår i: British Journal of Cancer. - : Springer Science and Business Media LLC. - 1532-1827 .- 0007-0920. ; 85:10, s. 1478-1485
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Tidskriftsartikel (refereegranskat)abstract
- Population-based surveys have shown that health-related quality of life (HRQL) is influenced by patients' characteristics such as age, gender, living situation and diagnoses. The present study explores the impact of such factors on the HRQL of severely ill cancer patients. The study sample included 395 cancer patients who participated in a cluster randomised trial of palliative care. Median survival was 13 weeks. HRQL assessments (using the EORTC QLQ-C30 questionnaire) were compared among subgroups of relevant patients' characteristics (ANOVA), and the significance of individual covariates was explored by multivariate linear regression. Most EORTC QLQ-C30 scores showed minor differences between genders. Higher age was associated with less sleeping disturbance, less pain and better emotional functioning. No positive impact of living with a partner was found. Performance status and/or time from assessment to death were significantly associated with most functioning and symptom scores. We concluded that although the overall impact of sociodemographic characteristics may seem less important to HRQL scores among advanced cancer patients than in general populations, age and gender should be allowed for. Performance status and closeness to death also need to be reported.
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| 13. |
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| 14. |
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| 15. |
- Petersen, M. A., et al.
(författare)
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The EORTC CAT Core-The computer adaptive version of the EORTC QLQ-C30 questionnaire
- 2018
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Ingår i: European Journal of Cancer. - : Elsevier BV. - 0959-8049. ; 100, s. 8-16
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Tidskriftsartikel (refereegranskat)abstract
- Background: To optimise measurement precision, relevance to patients and flexibility, patient-reported outcome measures (PROMs) should ideally be adapted to the individual patient/study while retaining direct comparability of scores across patients/studies. This is achievable using item banks and computerised adaptive tests (CATs). The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 30 (QLQ-C30) is one of the most widely used PROMs in cancer research and clinical practice. Here we provide an overview of the research program to develop CAT versions of the QLQ-C30's 14 functional and symptom domains. Methods: The EORTC Quality of Life Group's strategy for developing CAT item banks consists of: literature search to identify potential candidate items; formulation of new items compatible with the QLQ-C30 item style; expert evaluations and patient interviews; field-testing and psychometric analyses, including factor analysis, item response theory calibration and simulation of measurement properties. In addition, software for setting up, running and scoring CAT has been developed. Results: Across eight rounds of data collections, 9782 patients were recruited from 12 countries for the field-testing. The four phases of development resulted in a total of 260 unique items across the 14 domains. Each item bank consists of 7-34 items. Psychometric evaluations indicated higher measurement precision and increased statistical power of the CAT measures compared to the QLQ-C30 scales. Using CAT, sample size requirements may be reduced by approximately 20-35% on average without loss of power. Conclusions: The EORTC CAT Core represents a more precise, powerful and flexible measurement system than the QLQ-C30. It is currently being validated in a large independent, international sample of cancer patients. (C) 2018 Elsevier Ltd. All rights reserved.
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| 16. |
- Scholz, Joachim, et al.
(författare)
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The IASP classification of chronic pain for ICD-11 : chronic neuropathic pain.
- 2019
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Ingår i: Pain. - : Ovid Technologies (Wolters Kluwer Health). - 0304-3959 .- 1872-6623. ; 160:1, s. 53-59
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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.
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| 17. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Characteristics and implications of attrition in health-related quality of life studies in palliative care
- 2009
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:5, s. 432-440
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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.
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| 18. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Characteristics and Quality of Life of Patients Who Choose Home Care at the End of Life
- 2008
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier Inc.. - 0885-3924 .- 1873-6513. ; 36:3, s. 217-227
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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.
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| 19. |
- Ahlner Elmqvist, Marianne, et al.
(författare)
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Health-related quality of life during the last three months
- 2009
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Ingår i: Supportive Care in Cancer. - : Springer-Verlag New York. - 0941-4355 .- 1433-7339. ; 17:2, s. 191-198
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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.
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| 20. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Health-related quality of life during the last three months of life in patients with advanced cancer
- 2009
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 17:2, s. 191-198
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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.
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| 21. |
- Bjordal, K, et al.
(författare)
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Development of a European Organization for Research and Treatment of Cancer (EORTC) questionnaire module to be used in quality of life assessments in head and neck cancer patients. EORTC Quality of Life Study Group
- 1994
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Ingår i: Acta Oncologica. - : Informa UK Limited. - 1651-226X .- 0284-186X. ; 33:8, s. 879-885
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Tidskriftsartikel (refereegranskat)abstract
- A head and neck cancer specific questionnaire module designed to be used in quality of life assessments before, during, and after radiotherapy and surgery, with or without combinations with chemotherapy has been developed in accordance with guidelines given by the EORTC Quality of Life Study Group. Relevant issues were generated by means of literature search, and interviews with specialists and patients. Pre-testing of a preliminary questionnaire module was performed in patients from Norway, Sweden, Denmark, United Kingdom and French-speaking Belgium. The resulting head and neck cancer module, the EORTC QLQ-H&N37, includes 37 items concerning disease and treatment related symptoms, social function and sexuality. By using a combination of the general EORTC QLQ-C30 and the EORTC QLQ-H&N37, health-related quality of life measurements may be compared between studies in different cancer populations, and still be sensitive to changes in the target population.
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| 22. |
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| 23. |
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| 24. |
- Cohen, J., et al.
(författare)
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Population-based study of dying in hospital in six European countries
- 2008
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 22:6, s. 702-710
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Tidskriftsartikel (refereegranskat)abstract
- This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.
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| 25. |
- Ekström, M., et al.
(författare)
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Who experiences higher and increasing breathlessness in advanced cancer? The longitudinal EPCCS Study
- 2016
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 24:9, s. 3803-3811
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Breathlessness is a major cause of suffering in advanced cancer. We aimed to determine the symptom trajectory in people with advanced cancer and to identify those at increased risk of experiencing higher or increasing breathlessness over time in advanced cancer. Patients and methods: This was an analysis of the multinational, prospective, longitudinal European Palliative Care Cancer Symptom (EPCCS) study. We included adults with confirmed incurable cancer enrolled in palliative care, with prospective monthly assessments for up to 6 months, withdrawal or death, whichever came first. Symptom severity (0–10 numerical rating scales) was analyzed using multivariate random coefficients regression. Results: A total of 1689 patients (50 % women; mean age 65.7 ± [standard deviation; SD] 12.4 years) were included. Main diagnoses were digestive (31 %), lung (20 %), and breast (17 %) cancers. During a median follow-up of 62 (interquartile range, 0 to 133) days, 65 % were breathless at some point and 36 % of all patients reported moderate/severe breathlessness. The group mean (1.6 points; SD, 2.4) was unchanged over time, but the severity varied markedly between patients and over time. Independent predictors for worse breathlessness were COPD, lung cancer, living alone, lung metastases, anxiety, pain, depression, and lower performance status. Predictors of worsening breathlessness over time were low performance status (p = 0.039) and moderate to severe pain (p = 0.012). Conclusion: In the largest longitudinal clinical study to date in advanced cancer alone, breathlessness was frequent and associated with factors including respiratory disease, other concurrent unpleasant symptoms, and impaired performance status. Increase in severity over time was predicted by performance status and pain.
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| 26. |
- Hammerlid, E, et al.
(författare)
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A prospective multicentre study in Sweden and Norway of mental distress and psychiatric morbidity in head and neck cancer patients
- 1999
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Ingår i: British Journal of Cancer. - : Springer Science and Business Media LLC. - 1532-1827 .- 0007-0920. ; 80:5-6, s. 766-774
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Tidskriftsartikel (refereegranskat)abstract
- A Swedish/Norwegian head and neck cancer study was designed to assess prospectively the levels of mental distress and psychiatric morbidity in a heterogeneous sample of newly diagnosed head and neck cancer patients. A total of 357 patients were included. The mean age was 63 years, and 72% were males. The patients were asked to answer the HAD scale (the Hospital Anxiety and Depression scale) six times during 1 year. The number of possible or probable cases of anxiety or depression disorder was calculated according to standardized cut-offs. Approximately one-third of the patients scored as a possible or probable case of a major mood disorder at each measurement point during the study year. There were new cases of anxiety or depression at each time point. The anxiety level was highest at diagnosis, while depression was most common during treatment. Females were more anxious than males at diagnosis, and patients under 65 years of age scored higher than those over 65. Patients with lower performance status and more advanced disease reported higher levels of mental distress and more often scored as a probable or possible cases of psychiatric disorder. Our psychometric analyses supported the two-dimensional structure and stability of the HAD scale. The HAD scale seems to be the method of choice for getting valid information about the probability of mood disorder in head and neck cancer populations. The prevalence of psychiatric morbidity found in this study emphasizes the importance of improved diagnosis and treatment.
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| 27. |
- Hammerlid, Eva, 1957, et al.
(författare)
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A prospective study of quality of life in head and neck cancer patients. Part I: At diagnosis
- 2001
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Ingår i: Laryngoscope. - : Wiley. - 0023-852X. ; 111:4 Pt 1, s. 669-680
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: A Swedish and Norwegian study was designed to examine health-related quality of life (HQL) in patients with head and neck cancer (head and neck) at diagnosis and during treatment and rehabilitation. The overall aim was to examine the impact on HQL at diagnosis depending on tumor location, stage, sex, and age (part I) and to describe HQL longitudinally and determine for which patients and during which period HQL deteriorated most (part II), This article presents the results at diagnosis. Method Patients with head and neck cancer at five hospitals in Sweden and Norway were consecutively requested to participate, They were asked to answer the EORTC QLQ-C30 and QLQ-H&N35 (the European Organization for Research and Treatment of Cancer, Core 30 questionnaire and head and neck cancer module) repeatedly during I year. A total of 357 patients (mean age, 63 y; 72% males) were included, Results: Patients with different tumor locations all had their special problems at diagnosis, for example, those with tumors in the larynx with communication, those with oral tumors with pain, and those with pharyngeal tumors with nutrition and pain. The patients with hypopharyngeal cancer reported the worst HQL. Stage appeared to have the strongest impact on HQL. Patients with a more advanced tumor stage reported significantly worse HQL scores for 24 of 32 variables reflecting functioning or problems. The females scored worse than the males for some areas, in particular, emotional functioning. The older patients scored significantly better for emotional and social functioning than patients <65 years but worse for physical functioning and various symptoms. The traditional way of grouping the tumor locations into oral, pharyngeal, laryngeal, and "other" tumors (salivary gland, sinus and nose, and unknown primary) was tested from a HQL point of view and found to be consistent. Conclusions: The chosen questionnaires differentiated between different sites of head and neck cancer at diagnosis. Tumor stage had the most powerful impact on HQL score.
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| 28. |
- Hammerlid, Eva, 1957, et al.
(författare)
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Malnutrition and food intake in relation to quality of life in head and neck cancer patients
- 1998
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Ingår i: Head and Neck-Journal for the Sciences and Specialties of the Head and Neck. - 1043-3074. ; 20:6, s. 540-548
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Tidskriftsartikel (refereegranskat)abstract
- Background. The quality of life (QL)of cancer patients has attracted an increasing interest in recent years. Patients with head and neck cancer often have troublesome symptoms due to the disease and to treatment side effects, which will have an impact on the patient's QL. The aim of this study was to evaluate the possibility of studying QL in relation to well-known clinical parameters. Methods. Patient's QL was evaluated according to the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30) combined with a diagnosis-specific questionnaire. Quality of life was measured in a cross section of head and neck cancer patients (n = 48) and related to nutritional status, energy intake, severity of disease, and 2-year survival. Results. Fifty-one percent of the patients (mean age, 67 years) fulfilled the criteria proposed for malnutrition, and 55% had a negative energy balance. We did not find any correlation between the severity of the cancer disease and the patient's self-rated QL. However, we found significantly better QL ratings among the 2-year survivors (mean, 63; range 52-76 versus mean, 42; range, 31-54; p < .05). There were few correlations between the QL items and malnutrition. Conclusions. Quality of life measurements offer objective information on well-being, sometimes quite opposite that of other clinical parameters, such as tumor stage. Furthermore, QL measurements may be of prognostic value concerning the survival of head and neck cancer patients. (C) 1998 John Wiley & Sons, Inc.
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| 29. |
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| 30. |
- Jordhoy, MS, et al.
(författare)
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Lack of concealment may lead to selection bias in cluster randomized trials of palliative care
- 2002
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 16:1, s. 43-49
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Tidskriftsartikel (refereegranskat)abstract
- Comprehensive palliative care programs are often implemented on a community level, and to evaluate such interventions, randomization by cluster (community) may be the only feasible method. In trials randomizing individual subjects, the importance of proper concealment has been stressed, In cluster randomized trials, however, concealment of individual patient allocation is often impossible. The following risk of selection bias has been given little attention. In the present study, comparing palliative care to conventional care, community health care districts were defined as clusters and randomized. The patients' treatment assignment was determined by the allocation of the cluster in which they resided, and hence predictable by their address. A biased selection based on practical considerations related to patients' diagnoses and hospital departments was suspected. To explore this, cancer diagnoses were grouped according to local tradition for sharing of treatment responsibility among hospital departments. A significant difference between trial arms in distribution of these groups was revealed and strongly supported our suspicion. The finding carries an important message to future researchers: when using cluster randomization, any evidence of selection bias should be carefully checked and reported.
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| 31. |
- Jordhoy, Marit S., et al.
(författare)
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Quality of life in palliative cancer care: results from a cluster randomized trial
- 2001
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Ingår i: Journal of Clinical Oncology. - 1527-7755. ; 19:18, s. 3884-3894
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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.
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| 32. |
- Jordhoy, MS, et al.
(författare)
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Which cancer patients die in nursing homes? Quality of life, medical and sociodemographic characteristics
- 2003
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 17:5, s. 433-444
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Tidskriftsartikel (refereegranskat)abstract
- In this study, cancer patients' characteristics associated with death in nursing homes were explored. The study sample included 395 cancer patients who had participated in a trial of palliative care, 260 ( 66%) patients died in hospital, 80 (20%) at home and 55 (14%) in nursing homes. Health-related quality of life was prospectively recorded using the EORTC QLQ-C30 questionnaire. Death in nursing home was associated with greater age, not living with spouse and poor performance status. Patients dying in nursing homes reported severe functioning impairments and more fatigue and appetite loss compared with those dying elsewhere. The association between death in nursing homes and poor physical, role, cognitive and social functioning remained significant when sociodemographic and medical differences were taken into account. Further research on frail elderly cancer patients is warranted to improve their care, to evaluate the appropriateness of nursing home placement and for future planning of palliative care services.
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| 33. |
- Korwisi, Beatrice, et al.
(författare)
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Classification algorithm for the International Classification of Diseases-11 chronic pain classification : development and results from a preliminary pilot evaluation
- 2021
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Ingår i: Pain. - : Lippincott Williams & Wilkins. - 0304-3959 .- 1872-6623. ; 162:7, s. 2087-2096
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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.
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| 34. |
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| 35. |
- Lindemann, K., et al.
(författare)
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Elderly gynaecological cancer patients at risk for poor end of life care : a population-based study from the Swedish Register of Palliative Care
- 2020
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 59:6, s. 636-643
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient's age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.Results: We included 3940 patients with the following age distribution: 1.6% were 18-39 years of age, 12.3% 40-59 years, 37.2% 60-74 years, 28.9% 75-84 years and 20% were ≥85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the 'on demand prescription for pain', the goal level was reached.Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.
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| 36. |
- Muscaritoli, Maurizio, et al.
(författare)
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ESPEN practical guideline : Clinical Nutrition in cancer
- 2021
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Ingår i: Clinical Nutrition. - : Elsevier. - 0261-5614 .- 1532-1983. ; 40:5, s. 2898-2913
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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.
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| 37. |
- Ringdal, GI, et al.
(författare)
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Health-related quality of life (HRQOL) in family members of cancer victims: results from a longitudinal intervention study in Norway and Sweden
- 2004
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 18:2, s. 108-120
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Tidskriftsartikel (refereegranskat)abstract
- This study compared the health-related quality of life (HRQOL) of family members of patients who participated in a program of palliative care (intervention family members) with those in conventional care (control family members). The HRQOL was measured by the short-form (SF-36) health survey questionnaire, including eight subscales. The longitudinal intervention study includes two sites: Trondheim, Norway and Malmo, Sweden. Our first hypothesis was that the HRQOL of the family members would deteriorate over time in the terminal phase and reach a low point a few months after the death of the patients, and thereafter gradually increase. This hypothesis was fully supported by the trajectories for the five scales, role limitation due to physical problems, vitality, social functioning, role limitation due to emotional problems, and mental health; but only partially so for the remaining three scales, physical functioning, bodily pain, and general health perception. From a second hypothesis, we expected the trajectories of the HRQOL scale scores for the two groups to show an increasing difference over time in quality of life in favor of the intervention group. This was the case for two of the scales: role limitation due to emotional problems and mental health. Before we may reach a definitive conclusion on the effects of palliative care programs for the HRQOL of family members, we need further longitudinal intervention studies with large samples.
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| 38. |
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| 39. |
- Treede, Rolf-Detlef, et al.
(författare)
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A classification of chronic pain for ICD-11.
- 2015
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Ingår i: Pain. - : Ovid Technologies (Wolters Kluwer Health). - 0304-3959 .- 1872-6623. ; 156:6, s. 1003-1007
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Tidskriftsartikel (refereegranskat)
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| 40. |
- Treede, Rolf-Detlef, et al.
(författare)
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Chronic pain as a symptom or a disease : the IASP Classification of Chronic Pain for the International Classification of Diseases (ICD-11).
- 2019
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Ingår i: Pain. - : Ovid Technologies (Wolters Kluwer Health). - 0304-3959 .- 1872-6623. ; 160:1, s. 19-27
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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.
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| 41. |
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| 42. |
- Bjordal, K, et al.
(författare)
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- 1999
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Ingår i: Journal of Clinical Oncology. - 1527-7755. ; 17:3, s. 1008-1019
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of this study was to define the scales and test the validity, reliability, and sensitivity of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-H&N35, a questionnaire designed to assess the quality of life of head and neck (H&N) cancer patients in conjunction with the general cancer-specific EORTC QLQ-C30. PATIENTS AND METHODS: Questionnaires were given to 500 H&N cancer patients from Norway, Sweden, and the Netherlands as part of two prospective studies. The patients completed the questionnaires before, during (Norway and Sweden only), and after treatment, yielding a total of 2070 completed questionnaires. RESULTS: The compliance rate was high, and the questionnaires were well accepted by the patients. Seven scales were constructed (pain, swallowing, senses, speech, social eating, social contact, sexuality). Scales and single items were sensitive to differences between patient subgroups with relation to site, stage, or performance status. Most scales and single items were sensitive to changes, with differences of various magnitudes according to the site in question. The internal consistency, as assessed by Cronbach's alpha coefficient, varied according to assessment point and within subsamples of patients. A low overall alpha value was found for the speech and the senses scales, but values were higher in assessments of patients with laryngeal cancer and in patients with nose, sinus, and salivary gland tumors. Scales and single items in the QLQ-H&N35 seem to be more sensitive to differences between groups and changes over time than do the scales and single items in the core questionnaire. CONCLUSION: The QLQ-H&N35, in conjunction with the QLQ-C30, provides a valuable tool for the assessment of health-related quality of life in clinical studies of H&N cancer patients before, during, and after treatment with radiotherapy, surgery, or chemotherapy.
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