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Hjelmfors, L., Mårtensson, J., Strömberg, A., Sandgren, A., Friedrichsen, M. & Jaarsma, T. (2022). Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List. International Journal of Environmental Research and Public Health, 19(8), Article ID 4841.
Open this publication in new window or tab >>Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List
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2022 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 8, article id 4841Article in journal (Refereed) Published
Abstract [en]

Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.

Place, publisher, year, edition, pages
MDPI, 2022
Keywords
palliative care; question prompt list; heart failure
National Category
Medical Ethics
Identifiers
urn:nbn:se:liu:diva-184684 (URN)10.3390/ijerph19084841 (DOI)000786048400001 ()35457710 (PubMedID)
Note

Funding Agencies|Medical Research Council of Southeast of Sweden [FORSS-645591]; Research and scholarship management in Region ostergotland [LIO-656941]

Available from: 2022-05-03 Created: 2022-05-03 Last updated: 2023-05-05
Hjelmfors, L., van der Wal, M. H. L., Friedrichsen, M., Milberg, A., Martensson, J., Sandgren, A., . . . Jaarsma, T. (2020). Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals. BMC Palliative Care, 19(1), Article ID 161.
Open this publication in new window or tab >>Optimizing of a question prompt list to improve communication about the heart failure trajectory in patients, families, and health care professionals
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2020 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 19, no 1, article id 161Article in journal (Refereed) Published
Abstract [en]

Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients and family members preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

Place, publisher, year, edition, pages
BMC, 2020
Keywords
Heart failure; Illness trajectory; End-of-life care; Communication; Question prompt list
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-171181 (URN)10.1186/s12904-020-00665-3 (DOI)000582236900003 ()33059632 (PubMedID)
Note

Funding Agencies|Medical Research Council of South east of Sweden [FORSS-753711]; Research and scholarship management in Region Ostergotland [LIO756931]; Linkoping University Library

Available from: 2020-11-08 Created: 2020-11-08 Last updated: 2024-01-17
Erichsén, E., Milberg, A., Jaarsma, T. & Friedrichsen, M. (2016). Constipation in specialized palliative care: factors related to constipation when applying different definitions. Supportive Care in Cancer, 24(2), 691-698
Open this publication in new window or tab >>Constipation in specialized palliative care: factors related to constipation when applying different definitions
2016 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 2, p. 691-698Article in journal (Refereed) Published
Abstract [en]

CONTEXT:

For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied.

OBJECTIVES:

The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation.

METHODS:

Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios.

RESULTS:

Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease.

CONCLUSION:

There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.

Place, publisher, year, edition, pages
Springer Berlin/Heidelberg, 2016
Keywords
Constipation, Palliative care, Risk factors, Symptom assessment
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-121720 (URN)10.1007/s00520-015-2831-5 (DOI)000367458200022 ()26160464 (PubMedID)
Funder
Medical Research Council of Southeast Sweden (FORSS), 228731
Note

At the time for thesis presentation publication was in status: Manuscript

Funding agencies: Medical Research Council of Southeast Sweden (FORSS); Vrinnevi Hospital Research Board

Available from: 2015-10-02 Created: 2015-10-02 Last updated: 2019-06-27Bibliographically approved
Drewes, A. M., Munkholm, P., Simrén, M., Breivik, H., Kongsgaard, U. E., Hatlebakk, J. G., . . . Christrup, L. L. (2016). Definition, diagnosis and treatment strategies for opioid-induced bowel dysfunction—: Recommendations of the Nordic Working Group. Scandinavian Journal of Pain, 11, 111-122
Open this publication in new window or tab >>Definition, diagnosis and treatment strategies for opioid-induced bowel dysfunction—: Recommendations of the Nordic Working Group
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2016 (English)In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, Vol. 11, p. 111-122Article, review/survey (Refereed) Published
Abstract [en]

Background and aims: Opioid-induced bowel dysfunction (OIBD) is an increasing problem due to the common use of opioids for pain worldwide. It manifests with different symptoms, such as dry mouth,gastro-oesophageal reflux, vomiting, bloating, abdominal pain, anorexia, hard stools, constipation and incomplete evacuation. Opioid-induced constipation (OIC) is one of its many symptoms and probably the most prevalent. The current review describes the pathophysiology, clinical implications, and treatment of OIBD.Methods: The Nordic Working Group was formed to provide input for Scandinavian specialists in multiple, relevant areas. Seven main topics with associated statements were defined. The working plan provided a structured format for systematic reviews and included instructions on how to evaluate the level of evidence according to the GRADE guidelines. The quality of evidence supporting the different statements was rated as high, moderate or low. At a second meeting, the group discussed and voted on each section with recommendations (weak and strong) for the statements.Results: The literature review supported the fact that opioid receptors are expressed throughout the gastrointestinal tract. When blocked by exogenous opioids, there are changes in motility, secretion and absorption of fluids, and sphincter function that are reflected in clinical symptoms. The group supported a recent consensus statement for OIC, which takes into account the change in bowel habits for at least one week rather than focusing on the frequency of bowel movements. Many patients with pain received opioid therapy and concomitant constipation is associated with increased morbidity and utilization of healthcare resources. Opioid treatment for acute postoperative pain will prolong the postoperative ileus.

Place, publisher, year, edition, pages
Elsevier, 2016
Keywords
opioid induced constipation; treatment; diagnosis
National Category
Gastroenterology and Hepatology
Identifiers
urn:nbn:se:liu:diva-125722 (URN)10.1016/j.sjpain.2015.12.005 (DOI)
Funder
AstraZeneca
Available from: 2016-03-01 Created: 2016-03-01 Last updated: 2017-05-08
Eriksson, H., Milberg, A., Hjelm, K. & Friedrichsen, M. (2016). End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer. PLOS ONE, 11(2), e0147694, Article ID 26845149.
Open this publication in new window or tab >>End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer
2016 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 11, no 2, p. e0147694-, article id 26845149Article in journal (Refereed) Published
Abstract [en]

Background

Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.

Objective

To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.

Design

This study is a retrospective, comparative registry study.

Methods

A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.

Results

Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.

Conclusions

The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.

Place, publisher, year, edition, pages
PUBLIC LIBRARY SCIENCE, 2016
Keywords
palliative care;stroke, end-of-life-care;
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-125282 (URN)10.1371/journal.pone.0147694 (DOI)000369552800013 ()26845149 (PubMedID)
Note

Funding agencies: Stroke Riksforbund [2012-00185]; Stahls stiftelse [4813101041]; Forss [479071]

Available from: 2016-02-19 Created: 2016-02-19 Last updated: 2021-06-14
Ring Jacobsson, L., Milberg, A., Hjelm, K. & Friedrichsen, M. (2016). Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.. Journal of Clinical Nursing, 25(9-10), 1229-1237
Open this publication in new window or tab >>Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.
2016 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 9-10, p. 1229-1237Article in journal (Refereed) Published
Abstract [en]

Aims and Objectives

To explore the lived experiences of women with coeliac disease after attending a patient education programme, to gain a broader perspective of its influence.

Background

Adults, particularly women, with coeliac disease report suffering from poor well-being and reduced quality of life in terms of health. Patient education programmes might support and encourage them in the search for possible improvements in lifestyle and in their approach to the disease.

Design

A qualitative phenomenological study.

Methods

Personal narrative interviews with 14 women suffering from coeliac disease who had participated in an educational programme. Data analysis in accordance with Giorgi was performed.

Results

The essential structure of women's lived experiences following their participation in the patient education programme was found to be an interaction with others with the same disease, which left the women feeling individually strengthened. The interaction enabled the participants to acquire a broader view of their life with coeliac disease. As a result, this realigned their sense of self in relation to their own disease.

Conclusion

In coping with coeliac disease, it seems that women need interaction with others with the disease to experience togetherness within a group, get the opportunity to compare themselves with others and to exchange knowledge. The interaction appears to result in that women acquire an overview of life with the disease, develop a greater confidence and dare to try new things in life.

Relevance to clinical practice

When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2016
Keywords
Chronic disease ;coeliac disease;nursing;patient education;phenomenology;women′s health
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-123585 (URN)10.1111/jocn.13123 (DOI)000374506500006 ()26814834 (PubMedID)
Note

At the time of the thesis presentation was the publication in the status Manuscript

Available from: 2015-12-29 Created: 2015-12-29 Last updated: 2019-11-15Bibliographically approved
Erichsén, E., Milberg, A., Jaarsma, T. & Friedrichsen, M. (2015). Constipation in specialized palliative care: prevalence, definition and patient perceived symptom distress. Journal of Palliative Medicine, 18(7), 585-592
Open this publication in new window or tab >>Constipation in specialized palliative care: prevalence, definition and patient perceived symptom distress
2015 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 7, p. 585-592Article in journal (Refereed) Published
Abstract [en]

Context: The prevalence of constipation among patients in palliative care has varied in prior research, from 18-90 %, depending on different study factors.

Objectives: 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.

Methods: 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).

Result: The prevalence of constipation varied between 7 – 43 %, depending on the definition used. Two constipation- groups were found: (i) Medical constipation- group (MCG; ≤ 3 defecations/week n=114; 23%); (ii) Perceived constipation- group (PCG; Patients with a perception of being constipated the last two weeks; n= 171; 35%). Three sub-groups emerged: patients with (a) only medical constipation (7 %), (b) only perceived constipation (19 %), and (c) with both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.

Conclusion: 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 sub-groups, 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.

Place, publisher, year, edition, pages
Mary Ann Liebert, 2015
Keywords
Palliative care, constipation, prevalence, definition, symptom-distress
National Category
Other Medical Sciences Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-117184 (URN)10.1089/jpm.2014.0414 (DOI)000361880600005 ()25874474 (PubMedID)
Note

At the time for thesis presentation publication was in status: Manuscript

Available from: 2015-04-21 Created: 2015-04-21 Last updated: 2019-06-27Bibliographically approved
Hjelmfors, L., van der Wal, M. H. L., Friedrichsen, M., Martensson, J., Strömberg, A. & Jaarsma, T. (2015). Patient-Nurse Communication about Prognosis and End-of-Life Care. Journal of Palliative Medicine, 18(10), 865-871
Open this publication in new window or tab >>Patient-Nurse Communication about Prognosis and End-of-Life Care
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2015 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 10, p. 865-871Article in journal (Refereed) Published
Abstract [en]

Background: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. Objective: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. Methods: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Results: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, pless than0.001, 13% versus 4%, pless than0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Conclusions: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patients situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

Place, publisher, year, edition, pages
MARY ANN LIEBERT, INC, 2015
National Category
Sociology Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-122208 (URN)10.1089/jpm.2015.0037 (DOI)000362268900013 ()26068058 (PubMedID)
Note

Funding Agencies|Heart and Lung Foundation; King Gustaf V and Queen Victorias Foundation of the Freemasons

Available from: 2015-10-26 Created: 2015-10-23 Last updated: 2019-06-27
Hjelmfors, L., Strömberg, A., Friedrichsen, M., Mårtensson, J. & Jaarsma, T. (2014). Communicating prognosis and end-of-life care to heart failure patients: a survey of heart failure nurses' perspectives. European Journal of Cardiovascular Nursing, 13(2), 152-161
Open this publication in new window or tab >>Communicating prognosis and end-of-life care to heart failure patients: a survey of heart failure nurses' perspectives
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2014 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 13, no 2, p. 152-161Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:

Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.

AIMS:

This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.

METHODS:

A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.

RESULTS:

In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.

CONCLUSION:

Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.

Place, publisher, year, edition, pages
Sage Publications, 2014
Keywords
Heart failure, communication, end-of-life care, nurse attitudes, palliative care, prognosis
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-106263 (URN)10.1177/1474515114521746 (DOI)000428139400001 ()24480779 (PubMedID)2-s2.0-84896797220 (Scopus ID)
Available from: 2014-05-02 Created: 2014-05-02 Last updated: 2019-06-27Bibliographically approved
Eriksson, H., Andersson, G., Olsson, L., Milberg, A. & Friedrichsen, M. (2014). Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden. Journal of Neuroscience Nursing, 46(3), 162-170
Open this publication in new window or tab >>Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden
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2014 (English)In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 46, no 3, p. 162-170Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Lippincott, Williams andamp; Wilkins, 2014
Keywords
decision making; focus groups; multiprofessional; palliative care; stroke units
National Category
Clinical Medicine Health Sciences
Identifiers
urn:nbn:se:liu:diva-108150 (URN)10.1097/JNN.0000000000000049 (DOI)000336378900007 ()
Available from: 2014-06-26 Created: 2014-06-26 Last updated: 2019-09-23
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-9606-3238

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