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Axelsson, Bertil
Publications (10 of 27) Show all publications
Udo, C., Kreicbergs, U., Axelsson, B., Björk, O. & Lövgren, M. (2019). Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured. Acta Paediatrica
Open this publication in new window or tab >>Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured
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2019 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed) Epub ahead of print
Abstract [en]

Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.

Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.

Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.

Conclusion: Training to overcome communication issues could support the early integration of palliative care.

Place, publisher, year, edition, pages
John Wiley & Sons, 2019
Keywords
challenges, childhood cancer, communication, paediatric oncology, palliative care
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-161818 (URN)10.1111/apa.14903 (DOI)000475166700001 ()31206784 (PubMedID)
Available from: 2019-08-13 Created: 2019-08-13 Last updated: 2019-08-13
Udo, C., Lövgren, M., Lundquist, G. & Axelsson, B. (2018). Palliative care physicians' experiences of end-of-life communication: A focus group study. European Journal of Cancer Care, 27(1), Article ID e12728.
Open this publication in new window or tab >>Palliative care physicians' experiences of end-of-life communication: A focus group study
2018 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 1, article id e12728Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC was often conducted as a reaction to the patient's sudden deterioration or sometimes not at all. The barriers to achieving proactive BPC included physicians' uncertainty regarding the timing of BPC, primarily due to difficulties in prognostication in terms of time of death, and uncertainty as to what BPC should include and how it should best be approached. Furthermore, there was insufficient documentation regarding previous BPC, which impeded proactive BPC. Although our study shows that physicians are ambitious when it comes to the communication of information to patients and families, there is a need for further training in how to conduct BPC and when to initiate the BPC process. Furthermore, there should be documentation that different professionals can access as this would appear to facilitate a proactive BPC process.

Place, publisher, year, edition, pages
WILEY, 2018
Keywords
communication, end of life, palliative care, physicians
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-144965 (URN)10.1111/ecc.12728 (DOI)000423383300046 ()28727207 (PubMedID)
Available from: 2018-02-21 Created: 2018-02-21 Last updated: 2018-06-09Bibliographically approved
Gray, S. & Axelsson, B. (2018). The prevalence of deranged C-reactive protein and albumin in patients with incurable cancer approaching death. PLoS ONE, 13(3), Article ID e0193693.
Open this publication in new window or tab >>The prevalence of deranged C-reactive protein and albumin in patients with incurable cancer approaching death
2018 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 3, article id e0193693Article in journal (Refereed) Published
Abstract [en]

Introduction Amongst patients with incurable cancer approaching death, cachexia is common and associated with adverse outcomes. The term cachexia lacks a universally accepted definition and there is no consensus regarding which variables are to be measured. Furthermore, an elevated C-reactive protein is a common clinical challenge in this patient group. This study aims to add to the ongoing discussion regarding the definition of cancer cachexia and to study the role of C-reactive protein and s-albumin in this context.

Material and methods A 1-year cohort, consisting of 155 cancer patients enrolled in a specialized palliative home care team in the city of Ostersund, Sweden, that were deceased during the year of 2015 was studied. Laboratory measures were studied within 0-30 and 31-60 days prior to death. C-reactive protein >10 mg/L and coinciding s-albumin <30 g/L was referred to as "laboratory cachexia". Also, the number of days from the first found "laboratory cachexia" until death was noted.

Results The prevalence of "laboratory cachexia" was 85% 0-30 days prior to death compared to 66% 31-60 days prior to death (p<0.01). The majority of patients (75%) had an onset of "laboratory cachexia" within 0-120 days prior to death, with a median of 47 days. The median values for C-reactive protein and s-albumin within 0-30 days prior to death were 84mg/L and 23g/L respectively.

Discussion Could markedly deranged values of C-reactive protein and s-albumin, such as found in this study, signal a relatively short remaining survival time in patients with incurable cancer and no clinical signs of ongoing infection? The role of "laboratory cachexia" in this context as well as the cut off values for the laboratory measures included may be further discussed.

National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-146442 (URN)10.1371/journal.pone.0193693 (DOI)000427253500008 ()29534089 (PubMedID)
Available from: 2018-05-04 Created: 2018-05-04 Last updated: 2018-06-09Bibliographically approved
Martinsson, L., Heedman, P.-A., Lundström, S. & Axelsson, B. (2017). Improved data validity in the Swedish Register of Palliative Care. PLoS ONE, 12(10), Article ID e0186804.
Open this publication in new window or tab >>Improved data validity in the Swedish Register of Palliative Care
2017 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 12, no 10, article id e0186804Article in journal (Refereed) Published
Abstract [en]

Introduction: 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. Materials and methods: 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. Results: 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. Conclusion: 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.

Place, publisher, year, edition, pages
Public library science, 2017
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-141815 (URN)10.1371/journal.pone.0186804 (DOI)000413195900114 ()29049396 (PubMedID)
Available from: 2017-11-27 Created: 2017-11-27 Last updated: 2018-06-09Bibliographically approved
Martinsson, L., Heedman, P.-A., Eriksson, M., Tavelin, B. & Axelsson, B. (2016). Increasing the number of patients receiving information about transition to end-of-life care: the effect of a half-day physician and nurse training. BMJ Supportive & Palliative Care, 6(4), 452-458
Open this publication in new window or tab >>Increasing the number of patients receiving information about transition to end-of-life care: the effect of a half-day physician and nurse training
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2016 (English)In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 6, no 4, p. 452-458Article in journal (Refereed) Published
Abstract [en]

Introduction: Honest prognostication and information for patients are important parts of end-of-life care. This study examined whether an educational intervention could increase the proportion of patients who received information about the transition to end-of-life (ITEOL care).

Method: Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. The proportion of patients who received ITEOL was measured with data from the Swedish Register of Palliative Care (SRPC). Patients were only included if they died an expected death and maintained their ability to express their will until days or hours before their death. Four hospitals and four municipalities were assigned controls, matched by hospital size, population and proportion of patients receiving ITEOL at baseline.

Results: The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a 6-month period before the intervention) to 42% (during a 6-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in a multivariable model adjusted for time, age, gender and cause of death.

Conclusion: More patients at end-of-life received ITEOL after an educative half-day intervention directed to physicians and nurses.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2016
Keywords
Communication, Hospital care, Nursing Home care
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-101433 (URN)10.1136/bmjspcare-2014-000688 (DOI)000390589300008 ()25588878 (PubMedID)
Available from: 2015-03-30 Created: 2015-03-30 Last updated: 2018-06-07Bibliographically approved
Martinsson, L., Axelsson, B. & Melin-Johansson, C. (2016). Patients’ perception of information from physicians during palliative chemotherapy: a qualitative study. Psycho-Oncology, 14(5), 495-502
Open this publication in new window or tab >>Patients’ perception of information from physicians during palliative chemotherapy: a qualitative study
2016 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 14, no 5, p. 495-502Article in journal (Refereed) Published
Abstract [en]

Objective: 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.

Method: 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.

Results: Three categories were defined during the analytical process: “having a chronic disease,” “depending on chemotherapy,” and “living with an unpredictable future.”

Significance of results: 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.

Keywords
Cancer, Chemotherapy, Communication, Disclosure, Palliative care
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-102262 (URN)10.1017/S1478951515001200 (DOI)000384433900008 ()26653583 (PubMedID)
Available from: 2015-04-22 Created: 2015-04-22 Last updated: 2018-06-07Bibliographically approved
Näppä, U., Lindqvist, O., Rasmussen, B. H. & Axelsson, B. (2016). Routine assessment of performance status during palliative chemotherapy when approaching end-of-life. European Journal of Oncology Nursing, 21, 266-271
Open this publication in new window or tab >>Routine assessment of performance status during palliative chemotherapy when approaching end-of-life
2016 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 266-271Article in journal (Refereed) Published
Abstract [en]

Purpose: Palliative chemotherapy treatment (PCT) offered late in the cancer disease trajectory may be problematic. It is not easy to accurately calculate whether the potential benefits will outweigh the side effects. This study investigates whether routine use of the Performance Status in Palliative Chemotherapy questionnaire (PSPC) affects the proportions of patients receiving PCT during the last month of life, care utilization, and documentation routines. A secondary aim was to gather registered nurses' experiences of the PSPC in routine use.

Methods: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Nurses' reflections on the PSPC were collected and reviewed.

Results: No significant differences were found between users and non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (40% versus 17%). Nurses considered the questionnaires to be a valuable complement to verbal information when trying to acquire an accurate picture of patients' performance status.

Conclusion: At this point in the development of the PSPC we did not find any significant decreases in the proportion of patients receiving PCT during the last month in life. However, as the nurses valued the PSPC, it can be used as a complementary tool in assessment of performance status until further research is conducted. 

Keywords
Cancer, Case-control study, Chemotherapy, Decision-making, Palliative care, Questionnaire, Rural hospitals
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:umu:diva-120635 (URN)10.1016/j.ejon.2015.11.001 (DOI)000373412200036 ()
Available from: 2016-08-17 Created: 2016-05-18 Last updated: 2018-06-07Bibliographically approved
Näppä, U., Lundgren, A.-B. & Axelsson, B. (2016). The effect of bereavement groups on grief, anxiety, and depression - a controlled, prospective intervention study. BMC Palliative Care, 15, Article ID 58.
Open this publication in new window or tab >>The effect of bereavement groups on grief, anxiety, and depression - a controlled, prospective intervention study
2016 (English)In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 15, article id 58Article in journal (Refereed) Published
Abstract [en]

Background: Bereavement groups are believed to be beneficial as preventive interventions to reduce the development of complicated grief for people at risk after the death of a significant other. This study aimed to investigate whether measurable effects on grief, anxiety, and depression could be detected in those participating in bereavement groups compared to non-participating controls.

Methods: Questionnaires covering the Texas Revised Inventory of Grief (TRIG), the Hospital Anxiety and Depression Scale (HADS), and background questions were handed out pre-intervention, five weeks and one year post-intervention to bereaved caregivers invited to bereavement groups. The results were analysed with non-parametric methods.

Results: A total of 124 individuals answered the questionnaires, and were divided into three categories: participants, non-participants unable to participate, and non-participants not wanting to participate in bereavement groups. At the one-year follow up, participants and those unable to participate reported higher levels of grief and were more anxious than those not wanting to participate. Depression did not differ between the groups.

Conclusions: Participation in bereavement groups did not produce any effects on grief, anxiety, or depression in comparison to non-participants who were unable to participate. Non-participants who did not want to participate reported lower levels of grief and anxiety than the other two groups.

Keywords
Bereavement, Cancer, Family caregivers, Oncology, Palliative care, Support
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:umu:diva-124328 (URN)10.1186/s12904-016-0129-0 (DOI)000379857000001 ()27405317 (PubMedID)
External cooperation:
Available from: 2016-09-07 Created: 2016-08-04 Last updated: 2018-06-07Bibliographically approved
Fritzson, A., Tavelin, B. & Axelsson, B. (2015). Association between parenteral fluids and symptoms in hospital end-of-life care: an observational study of 280 patients. BMJ Supportive & Palliative Care, 5(2), 160-168
Open this publication in new window or tab >>Association between parenteral fluids and symptoms in hospital end-of-life care: an observational study of 280 patients
2015 (English)In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 5, no 2, p. 160-168Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: To investigate whether dying patients receiving parenteral fluids (PF) suffer from more or less symptoms than patients who do not receive PF. Today's evidence on how PF affects palliative patients' symptoms is very scarce. Nevertheless, 40% of the patients who die expectedly in Swedish hospitals receive PF during their last 24 h of life.

METHODS: A historical cohort study of medical records was performed. Of the 530 patients who were reported to have died expectedly at hospital in Västerbotten county (Sweden) between 1 January 2011 and 30 June 2012, 140 cases who had received PF and 140 controls who had not received PF were identified by stratified randomisation and matched by age, sex and main disease. The groups were compared regarding documented presence of dyspnoea, respiratory secretions, anxiety, nausea and confusion during the last 24 h and the last week of life.

RESULTS: The prevalence of documented dyspnoea in the PF groups was higher than in the non-PF groups (51% vs 22% last 24 h, p<0.0001; 70% vs 45% last 7 days, p<0.001). The proportions of patients suffering from dyspnoea increased with larger administered volume. Although our main hypothesis--that the prevalence of respiratory secretions would be higher in the PF group--was not confirmed, we found a tendency in that direction (63% vs 50% last week, p=0.072). No clinically significant differences in anxiety, nausea or confusion were found.

CONCLUSIONS: There is an association between PF administration and increased frequency of documented dyspnoea for terminally ill patients in their last week of life.

National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-109657 (URN)10.1136/bmjspcare-2013-000501 (DOI)000360580700008 ()24644196 (PubMedID)
Available from: 2015-10-02 Created: 2015-10-02 Last updated: 2018-06-07Bibliographically approved
Lind, S., Adolfsson, J., Axelsson, B. & Fürst, C. J. (2015). Quality indicators for palliative and end of life care: a review of Swedish policy documents. BMJ Supportive & Palliative Care, 5(4), 413-419
Open this publication in new window or tab >>Quality indicators for palliative and end of life care: a review of Swedish policy documents
2015 (English)In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 5, no 4, p. 413-419Article in journal (Refereed) Published
Abstract [en]

Background 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. Methods 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. Results 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. Conclusions 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.

Keywords
Symptoms and symptom management, End-of-life, Cancer, Chronic conditions, Quality indicators
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-130283 (URN)10.1136/bmjspcare-2012-000390rep (DOI)000365847100014 ()26586687 (PubMedID)
Note

Republished research.

Available from: 2017-01-16 Created: 2017-01-16 Last updated: 2018-06-09Bibliographically approved
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