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Improved data validity in the Swedish Register of Palliative Care.

https://arctichealth.org/en/permalink/ahliterature287189
Source
PLoS One. 2017;12(10):e0186804
Publication Type
Article
Date
2017
Author
Lisa Martinsson
Per-Anders Heedman
Staffan Lundström
Bertil Axelsson
Source
PLoS One. 2017;12(10):e0186804
Date
2017
Language
English
Publication Type
Article
Keywords
Humans
Palliative Care
Registries
Sweden
Abstract
The Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ.
Data from 100 consecutive patients' medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen's kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC.
Level of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen's kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms.
The revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients' medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment.
Notes
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PubMed ID
29049396 View in PubMed
Less detail
Source
Lakartidningen. 2016 Nov 22;113
Publication Type
Article
Date
Nov-22-2016

Constipation in Specialized Palliative Care: Prevalence, Definition, and Patient-Perceived Symptom Distress.

https://arctichealth.org/en/permalink/ahliterature271796
Source
J Palliat Med. 2015 Jul;18(7):585-92
Publication Type
Article
Date
Jul-2015
Author
Eva Erichsén
Anna Milberg
Tiny Jaarsma
Maria J Friedrichsen
Source
J Palliat Med. 2015 Jul;18(7):585-92
Date
Jul-2015
Language
English
Publication Type
Article
Keywords
Constipation - epidemiology - physiopathology - psychology
Cross-Sectional Studies
Health Knowledge, Attitudes, Practice
Humans
Logistic Models
Palliative Care
Prevalence
Sweden
Terminally ill
Abstract
The prevalence of constipation among patients in palliative care has varied in prior research, from 18% to 90%, depending on study factors.
The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings.
Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR).
The prevalence of constipation varied between 7% and 43%, depending on the definition used. Two constipation groups were found: (1) medical constipation group (MCG): =3 defecations/week, n=114 (23%) and (2) perceived constipation group (PCG): patients with a perception of being constipated in the last two weeks, n=171 (35%). Three subgroups emerged: patients with (1) only medical constipation (7%), (2) only perceived constipation (19%), and (3) both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.
The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three subgroups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients' definition has to be further explored and assessed.
PubMed ID
25874474 View in PubMed
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Quality indicators for palliative and end of life care: a review of Swedish policy documents.

https://arctichealth.org/en/permalink/ahliterature263470
Source
BMJ Support Palliat Care. 2013 Jun;3(2):174-80
Publication Type
Article
Date
Jun-2013
Author
Susanne Lind
Jan Adolfsson
Bertil Axelsson
Carl Johan Fürst
Source
BMJ Support Palliat Care. 2013 Jun;3(2):174-80
Date
Jun-2013
Language
English
Publication Type
Article
Keywords
Humans
Palliative Care - standards
Policy Making
Practice Guidelines as Topic - standards
Quality Indicators, Health Care - standards
Sweden
Terminal Care - standards
Abstract
All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care.
We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.
We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and 'The care and nursing of the elderly'. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.
In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.
PubMed ID
24644565 View in PubMed
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Ethical dilemmas around the dying patient with stroke: a qualitative interview study with team members on stroke units in Sweden.

https://arctichealth.org/en/permalink/ahliterature258547
Source
J Neurosci Nurs. 2014 Jun;46(3):162-70
Publication Type
Article
Date
Jun-2014
Author
Helene Eriksson
Gisela Andersson
Louise Olsson
Anna Milberg
Maria Friedrichsen
Source
J Neurosci Nurs. 2014 Jun;46(3):162-70
Date
Jun-2014
Language
English
Publication Type
Article
Keywords
Attitude of Health Personnel
Attitude to Death
Communication Barriers
Female
Hospice and Palliative Care Nursing - ethics
Humans
Male
Neuroscience Nursing - ethics
Nurses' Aides - ethics - psychology
Nursing Staff, Hospital - ethics - psychology
Nursing, Team - ethics
Palliative Care - ethics
Physical Therapists - ethics - psychology
Qualitative Research
Right to Die - ethics
Stroke - nursing - rehabilitation
Sweden
Terminal Care - ethics
Abstract
In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on "nondecisions" about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had "problems holding to the decision." The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was "communication barriers," a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.
PubMed ID
24796473 View in PubMed
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Does a half-day course about palliative care matter? A quantitative and qualitative evaluation among health care practitioners.

https://arctichealth.org/en/permalink/ahliterature114602
Source
J Palliat Med. 2013 May;16(5):496-501
Publication Type
Article
Date
May-2013
Author
Maria Friedrichsen
Per-Anders Heedman
Eva Åstradsson
Maria Jakobsson
Anna Milberg
Author Affiliation
Palliative Education and Research Center in the County of Östergötland, Vrinnevi Hospital, Norrköping, Sweden. maria.friedrichsen@liu.se
Source
J Palliat Med. 2013 May;16(5):496-501
Date
May-2013
Language
English
Publication Type
Article
Keywords
Adult
Education, Medical, Continuing - organization & administration
Educational Measurement
Female
Focus Groups
Humans
Interviews as Topic
Male
Middle Aged
Palliative Care
Questionnaires
Sweden
Abstract
To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals.
The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.
An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.
Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).
The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered.
The course was appreciated and useful in the professionals' work, but it also created problems.
PubMed ID
23600332 View in PubMed
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Source
Lakartidningen. 2016 Nov 22;113
Publication Type
Article
Date
Nov-22-2016
Author
Bertil Axelsson
Bengt Sallerfors
Carl Johan Furst
Source
Lakartidningen. 2016 Nov 22;113
Date
Nov-22-2016
Language
Swedish
Publication Type
Article
Keywords
Clinical Competence
Health Services Accessibility
Healthcare Disparities
Humans
Palliative Care - organization & administration - standards
Palliative Medicine - education
Quality of Health Care
Sweden - epidemiology
Abstract
Access to palliative care is unequally distributed across Sweden and thus does not meet the needs. The holistic perspective of palliative care is sometimes contrasted with the usual medical focus on organ failure and disease. Palliative consultation teams provide specialist palliative care competencies for staff caring for patients in primary care, nursing homes and in hospitals. Efforts to increase knowledge and skills in palliative care is needed at undergraduate university level and through postgraduate and specialist training. Well organized cooperation between municipalities, county councils and primary care is crucial for patients in the final stages of life.
PubMed ID
27898141 View in PubMed
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A study of patients not registered in the Swedish Cancer Register but reported to the Swedish Register of Palliative Care 2009 as deceased due to cancer.

https://arctichealth.org/en/permalink/ahliterature257644
Source
Acta Oncol. 2014 Mar;53(3):414-9
Publication Type
Article
Date
Mar-2014
Author
Martin Nilsson
Björn Tavelin
Bertil Axelsson
Author Affiliation
Department of Radiation Sciences, Umeå University , Umeå , Sweden.
Source
Acta Oncol. 2014 Mar;53(3):414-9
Date
Mar-2014
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Female
Humans
Male
Medical Records
Middle Aged
Neoplasms - diagnosis - epidemiology - mortality
Palliative Care - statistics & numerical data
Registries
Sweden
Abstract
The Swedish Cancer Register (SCR), an old and reputable health data register, contributes a large amount of data used in research. The quality of the research using SCR data depends on the completeness and validity of the register. In Sweden, every healthcare provider is obligated to report newly detected cases of cancer to the SCR regardless of the diagnostic basis. This study aimed to clarify whether there is an under-reporting of patients with cancer to the SCR or an over-reporting of cancer as cause of death to the SRPC as all patients do not appear in both registers. In addition, this study looked at the distribution of under-reporting or over-reporting related to age, sex, type of cancer, diagnostic basis, and department responsible for cancer diagnosis.
Of the 10 559 patients whose cause of death was cancer as reported to the SRPC (2009), 1394 patients (13.2%) were not registered in the SCR (1958-2009). Medical records from a representative sample of 203 patients were collected and reviewed.
The medical records for 193 patients were obtained; of those, 183 (95%) patients should have been reported to the SCR. Among these, radiologic investigation was the most common basis for diagnosis and there was a significant over-representation of cancer of the pancreas, lung, liver, and bile ducts.
This study cannot quantify the completeness of the SCR. The findings indicate that 12.5% of patients dying of cancer in palliative care are not reported, that specialized hospital departments diagnose the vast majority of the unreported patients, and that routines for how to report patients to the SCR based on radiological findings should be revised.
PubMed ID
23964659 View in PubMed
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Dying cancer patients' own opinions on euthanasia: an expression of autonomy? A qualitative study.

https://arctichealth.org/en/permalink/ahliterature134773
Source
Palliat Med. 2012 Jan;26(1):34-42
Publication Type
Article
Date
Jan-2012
Author
Marit Karlsson
Anna Milberg
Peter Strang
Author Affiliation
Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden. marit.karlsson@ki.se
Source
Palliat Med. 2012 Jan;26(1):34-42
Date
Jan-2012
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Decision Making
Euthanasia - psychology
Female
Humans
Male
Middle Aged
Neoplasms - psychology
Palliative Care
Personal Autonomy
Qualitative Research
Questionnaires
Sweden
Trust
Abstract
Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons.
Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories.
The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust.
Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
PubMed ID
21543526 View in PubMed
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Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study.

https://arctichealth.org/en/permalink/ahliterature281233
Source
Palliat Support Care. 2016 10;14(5):495-502
Publication Type
Article
Date
10-2016
Author
Lisa Martinsson
Bertil Axelsson
Christina Melin-Johansson
Source
Palliat Support Care. 2016 10;14(5):495-502
Date
10-2016
Language
English
Publication Type
Article
Keywords
Adult
Aged
Drug Therapy - psychology
Female
Humans
Information Dissemination - methods
Male
Middle Aged
Neoplasms - complications - psychology
Palliative Care - psychology
Perception
Physician-Patient Relations
Qualitative Research
Sweden
Abstract
During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.
A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.
Three categories were defined during the analytical process: "having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future."
Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.
PubMed ID
26653583 View in PubMed
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20 records – page 1 of 2.