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  • 1.
    Axelsson, Bertil
    et al.
    Onkologi.
    Stellborn, Per
    Ström, Greta
    Analgesic effect of paracetamol on cancer related pain in concurrent strong opioid therapy. A prospective clinical study.2008In: Acta Oncol, ISSN 1651-226X, Vol. 47, no 5, p. 891-895Article in journal (Refereed)
  • 2.
    Fritzson, Anna
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Tavelin, Björn
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Association between parenteral fluids and symptoms in hospital end-of-life care: an observational study of 280 patients2015In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 5, no 2, p. 160-168Article in journal (Refereed)
    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.

  • 3. Gholiha, Alex
    et al.
    Fransson, Greger
    Fürst, Carl Johan
    Heedman, Per-Anders
    Lundström, Staffan
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Stora luckor i journaler vid vård i livets slutskede: Journaluppgifter saknas för data inrapporterade till Palliativregistret2011In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 108, no 16-17, p. 918-921Article in journal (Refereed)
    Abstract [sv]

    Dokumentation av vårdåtgärder och bedömningar är väsentlig för en optimal pal­lia­tiv vård.

    I denna studie har vi jämfört åtgärder som inrapporterats till Svenska palliativregistret i samband med dödsfall med den befintliga journaldokumentationen.

    Genom slumpmässigt urval deltog totalt 14 registeraktiva vårdenheter representerande de fem vanligaste enhetstyperna. De tio senaste dödsfallen på varje enhet grans­kades med fokus på vårdinnehållet sista veckan i livet.

    Bristfällig journaldokumentation noterades i stor utsträckning (8–76 procent).

    Behovet av tydliga sökord är stort för att såväl läkares som sjuksköterskors journaldokumentation ska kunna leva upp till modern standard vad gäller palliativa vårdinsatser i livets slutskede.

  • 4. Gray, Sarah
    et al.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. Östersunds sjukhus.
    The prevalence of deranged C-reactive protein and albumin in patients with incurable cancer approaching death2018In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 3, article id e0193693Article in journal (Refereed)
    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.

  • 5. Henoch, Ingela
    et al.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Bergman, Bengt
    The assessment of quality of life at the end of life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care2010In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 19, no 5, p. 739-750Article in journal (Refereed)
    Abstract [en]

    This study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.

  • 6. Lind, Susanne
    et al.
    Adolfsson, Jan
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. FoU unit, Östersunds Hospital, Östersund, Sweden.
    Fürst, Carl Johan
    Quality indicators for palliative and end of life care: a review of Swedish policy documents2013In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 3, no 2, p. 174-180Article in journal (Refereed)
    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.

  • 7. Lind, Susanne
    et al.
    Adolfsson, Jan
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences. FoU unit, Östersunds Hospital, Östersund, Sweden.
    Fürst, Carl Johan
    Quality indicators for palliative and end of life care: a review of Swedish policy documents2015In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 5, no 4, p. 413-419Article in journal (Refereed)
    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.

  • 8.
    Lundquist, Gunilla
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Lindqvist, Olav
    Karolinska Institutet.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Transition to End-of-Life Care in End-Stage Cancer: Triggers, Timing, Context, and Consequences of Breakpoint CommunicationsManuscript (preprint) (Other academic)
  • 9.
    Lundquist, Gunilla
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Rasmussen Holritz, Birgit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Information of imminent death or not: does it make a difference?2011In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 29, no 29, p. 3927-3931Article in journal (Refereed)
    Abstract [en]

    Purpose: This study examines whether end-of-life care for patients with cancer who were informed about imminent death differs from care for those patients with cancer who were not informed.

    Patients and Methods: This study included all cancer deaths between 2006 and 2008 for which the patient did not lose his or her decision-making capacities until hours or days before death (N=13,818). These patients were taken from a national quality register for end-of-life care. The majority of the patients—91% (n=12,609) —had been given information about imminent death; 9% (n=1,209) had not been informed. Because of the difference in sample size, a matching procedure was performed to minimize bias. This resulted in a comparison of 1,191 informed and 1,191 uniformed patients. Nonparametric methods were used for statistical analyses.

    Results: Informed patients significantly more often had parenteral drugs prescribed as needed (ie, PRN), had his or her family informed, died in his or her preferred place, and had family who were offered bereavement support. There was no difference in symptom control (ie, pain, anxiety, confusion, nausea, and respiratory tract secretions) between the groups.

    Conclusion: Providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.

  • 10. Lundström, Staffan
    et al.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Heedman, Per-Anders
    Fransson, Greger
    Fürst, Carl Johan
    Developing a national quality register in end-of-life care: The Swedish experience2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 4, p. 313-321Article in journal (Refereed)
    Abstract [en]

    Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. Aim: To establish, test and manage a national quality register for end-of-life care. Design: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. Setting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. Results: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. Conclusions: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

  • 11.
    Martinsson, Lisa
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. Swedish Register of Palliative Care, Kalmar, Sweden.
    Melin-Johansson, Christina
    Patients’ perception of information from physicians during palliative chemotherapy: a qualitative study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 14, no 5, p. 495-502Article in journal (Refereed)
    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.

  • 12.
    Martinsson, Lisa
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Fürst, Carl Johan
    Lundström, Staffan
    Nathanaelsson, Lena
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Axelsson, Bertil
    Registration in a quality register: a method to improve end-of-lifecare—a cross-sectional study2012In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 2, no 4, article id e001328Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Structured methods to assess and support improvement in the quality of end-of-life care are lacking and need to be developed. This need is particularly high outside the specialised palliative care. This study examines whether participation in a national quality register increased the quality of end-of-life care.

    DESIGN: This study is a cross-sectional longitudinal register study.

    SETTING: The Swedish Register of Palliative Care (SRPC) collects data about end-of-life care for deaths in all types of healthcare units all over Sweden. Data from all 503 healthcare units that had reported patients continuously to the register during a 3-year period were analysed. PRIMARY AND SECONDARY OUTCOME MEASURES: Data on provided care during the last weeks of life were compared year-by-year with logistic regression.

    PARTICIPANTS: The study included a total 30 283 patients. The gender distribution was 54% women and 46% men. A total of 60% of patients in the study had a cancer diagnosis.

    RESULTS: Provided end-of-life care improved in a number of ways. The prevalence of six examined symptoms decreased. The prescription of 'as needed' medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient's next of kin was more often offered a follow-up appointment after the patient's death. No changes were seen with respect to providing information to the patient or next of kin.

    CONCLUSIONS: Participation in a national quality register covariates with quality improvements in end-of-life care over time.

  • 13.
    Martinsson, Lisa
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Heedman, Per-Anders
    Eriksson, Monika
    Tavelin, Björn
    Umeå University, Faculty of Medicine, Department of Radiation Sciences. Swedish Register of Palliative Care, Kalmar, Sweden.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences. Swedish Register of Palliative Care, Kalmar, Sweden.
    Increasing the number of patients receiving information about transition to end-of-life care: the effect of a half-day physician and nurse training2016In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 6, no 4, p. 452-458Article in journal (Refereed)
    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.

  • 14.
    Martinsson, Lisa
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Heedman, Per-Anders
    Lundström, Staffan
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Improved data validity in the Swedish Register of Palliative Care2017In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 12, no 10, article id e0186804Article in journal (Refereed)
    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.

  • 15.
    Martinsson, Lisa
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Heedman, Per-Anders
    Lundström, Staffan
    Fransson, Greger
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Validation study of an end-of-life questionnaire from the Swedish register of palliative care2011In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 50, no 5, p. 642-647Article in journal (Refereed)
    Abstract [en]

    Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end-of-life questionnaire (ELQ), which is validated in this study.

    Material and methods. This study included 169 consecutive patients who had died at a palliative unit. That unit had developed a computerized end-of-life medical record module that enabled a comparison between reported data and medical records, illustrating the validity of the registry questionnaire. The paper versions of the ELQs filled in at the unit were also inspected to determine the extent of registration mistakes when completing the web questionnaire.

    Results. Data from the medical records and data from the ELQs reported to the SRPC showed a congruity of 22 to 100%. A working limit of acceptable congruity was set to 80%. Eight questions fell below that line. Some of these differences were caused by systematic errors. The paper versions filled in at the unit and the data from the ELQs reported to the SRPC had a congruity of between 96% and 100%, with the exception of one question about pain evaluation, which had 91% congruity.

    Discussion. The results in this study will be used to improve and further develop the register. Some questions need to be more specific to promote more valid registrations. Consensus on quality issues in end-of-life care would simplify the work of writing and answering the questionnaire. It is desirable to perform a similar study at hospital wards that do not specialize in palliative care; however, the anticipated lack of palliative documentation could make such a study difficult to perform.

  • 16. Melin-Johansson, Christina
    et al.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Gaston-Johansson, F
    Danielson, E
    Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team2010In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, no 2, p. 243-250Article in journal (Refereed)
    Abstract [en]

    The aims of this study were to describe and compare quality of life before and after designation to a palliative homecare team in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global quality of life. We measured patients' quality of life 1 week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (Axelsson & Sjödén 1999). Of 163 eligible patients 63 participated without attrition. Patients' quality of life improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (P = 0.009), nausea (P = 0.008), anxiety (P = 0.007), getting hold of staff (P = 0.000), received care (P = 0.003) and global quality of life (P = 0.023). Depression/low in mood (r = 0.55) and meaningfulness (r = 0.70) associated to global quality of life. Furthermore, pain (P = 0.028) and meaningfulness (P = 0.028) predicted global quality of life. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global quality of life.

  • 17. Melin-Johansson, Christina
    et al.
    Ödling, Gunvor
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Danielson, Ella
    The meaning of quality of life: narrations by patients with incurable cancer in palliative home care2008In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 3, p. 231-238Article in journal (Refereed)
    Abstract [en]

    This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.

  • 18.
    Nilsson, Martin
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Tavelin, Björn
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    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 cancer2014In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 53, no 3, p. 414-419Article in journal (Refereed)
    Abstract [en]

    Background. 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. Material and methods. 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. Results. 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. Discussion. 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.

  • 19.
    Näppä, Ulla
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Avoiding harmful palliative chemotherapy treatment in the end of life: development of a brief patient-completed questionnaire for routine assessment of performance status2012In: The journal of supportive oncology, ISSN 1544-6794, Vol. 10, no 6, p. 230-237Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Earlier studies have shown that up to 43% of patients with incurable cancer are treated with palliative chemotherapy in the last month of their lives. Although pretreatment blood tests are acceptable, the patient's general condition may not permit further palliative chemotherapy treatment (PCT). Presently, there is no patient self-assessment tool available to monitor performance status during PCT.

    OBJECTIVES: To describe the development process of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire, and the testing of its psychometric properties.

    METHODS: The questionnaire was developed by the authors based on the Eastern Cooperative Oncology Group Performance Status Rating (ECOG PSR) scale as well as their clinical experience with PCT. Adult patients who were diagnosed with epithelial cancers (n = 118) were enrolled to test the PSPC questionnaire for reliability, sensitivity for change, and validity.

    RESULTS: After stepwise modifications of the PSPC questionnaire, psychometric tests revealed acceptable values for reliability (via a test-retest method), sensitivity for change (via a comparison of patients with progressive disease over time), and validity (via a comparison of the PSPC vs the Edmonton Symptom Assessment System [ESAS]).

    LIMITATIONS: At this stage of questionnaire development, we are unable to conclude whether the PSPC is superior to the conventional ECOG PSR in the evaluation of performance status and the prediction of chemotherapy response.

    CONCLUSION: Psychometric tests suggest that the PSPC questionnaire may be a useful patient-completed tool in the late stages of cancer disease to routinely monitor performance status in palliative chemotherapy treatments so as to minimize the risk of inflicting more harm than good.

  • 20.
    Näppä, Ulla
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen, Birgit H
    Umeå University, Faculty of Medicine, Department of Nursing.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Can a performance status questionnaire decrease palliative chemotherpy in the last months of life?Manuscript (preprint) (Other academic)
    Abstract [en]

    Background: Physicians often offer further palliative chemotherapy treatments (PCT) late in the cancer disease trajectory, even when treatment benefits are doubtful.

    Objective: Our main aim was to investigate whether routine use of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire would affect the proportions of patients receiving PCT during the last month of life, hospital admissions, documentation of performance status and the decisions to cease PCT, and/or place of death. A secondary aim was to gather registered nurses’ experiences of 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. Patients’ comments in the questionnaires were analyzed and nurses reflections collected in a work-journal.

    Results: No significant differences were found between users or 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 (38% versus 17%). Nurses considered the questionnaires superior to verbal communication in providing accurate pictures of patients’ performance status.

    Limitations: The results of this interim analysis could have been more significant if the originally planned number of patients had been recruited.

    Conclusion: The proportion of patients receiving PCT during the last month of life was lower than in a previous study (25% versus 32%). As we found no significant differences between the study group and the control group, we cannot claim this to be an effect of PSPC use.

  • 21.
    Näppä, Ulla
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences. Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/Medical Management Centre, Karolinska Institutet, S-171 77 Stockholm, Sweden.
    Rasmussen, Birgit H.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Routine assessment of performance status during palliative chemotherapy when approaching end-of-life2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 266-271Article in journal (Refereed)
    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. 

  • 22.
    Näppä, Ulla
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology. Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen Holritz, Birgit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Palliative chemotherapy during the last month of life2011In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 22, no 11, p. 2375-2380Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: This study analyses the potential discriminative characteristics for patients with incurable cancer who received palliative chemotherapy during their last month of life.

    PATIENTS AND METHODS: The study includes all patients with epithelial cancer treated with palliative chemotherapy who died in 2008 in northern Sweden. Demographic parameters and care utilization data were registered. Data were analyzed using nonparametric methods.

    RESULTS: Of 374 included patients, 87 (23%) received chemotherapy during the last month of life. These patients had a significantly shorter survival time from first palliative treatment to death, were admitted more frequently to hospital, more often lacked a documented decision to cease treatment, and died less frequently at home.

    CONCLUSIONS: The results indicate covariations between palliative chemotherapy treatments in the last month of life and unfavorable patient outcomes. As almost one of four patients with incurable cancer received their last round of palliative chemotherapy <31 days before death, there is a potential for improved routines.

  • 23. Näppä, Ulla
    et al.
    Lundgren, Ann-Britt
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    The effect of bereavement groups on grief, anxiety, and depression - a controlled, prospective intervention study2016In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 15, article id 58Article in journal (Refereed)
    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.

  • 24.
    Näppä, Ulla
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Rasmussen, Birgit H
    Umeå University, Faculty of Medicine, Department of Nursing.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
    Challenging situations when administering palliative chemotherapy: a nursing perspective2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 591-597Article in journal (Other academic)
    Abstract [en]

    Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer.

    Methods: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis.

    Results: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician.

    Conclusion: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members – nurses, physicians, patients, and relatives – are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.

  • 25. Starlander, Jan
    et al.
    Melin-Johansson, Christina
    Jonsson, Håkan
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Oral-parenteral conversion factor for morphine in palliative cancer care: a prospective randomized crossover pilot study2011In: Pain Research and Treatment, ISSN 2090-1550, p. 504034-Article in journal (Refereed)
    Abstract [en]

    Objective. This pilot study clinically tests whether a conversion factor of 2 to 1 is appropriate when changing from oral to parenteral morphine administration in the treatment of cancer-related nociceptive pain and calculates the size of an adequately powered future study.

    Methods. Eleven outpatients with incurable cancer and well-controlled nociceptive pain were randomly assigned to either intravenous or subcutaneous morphine using half the previous oral 24-hour dose. Each group crossed over after the first three-day period. Serum concentrations of morphine and its metabolites were monitored as well as intensity of pain.

    Results. Oral to subcutaneous and oral to intravenous quotas of morphine concentrations were approximately 0.9. Subcutaneous to intravenous morphine quotas were 1.

    Conclusions. The conversion factor of 2 to 1 seems to be a reasonable average but with an obvious need for individual adjustments. Concurrent medications and substantially higher doses of morphine could potentially affect the appropriate conversion factor. An adequately powered study to validate these findings would need at least 121 patients.

  • 26. Udo, C.
    et al.
    Lövgren, M.
    Lundquist, G.
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Palliative care physicians' experiences of end-of-life communication: A focus group study2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 1, article id e12728Article in journal (Refereed)
    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.

  • 27. Udo, Camilla
    et al.
    Kreicbergs, Ulrika
    Axelsson, Bertil
    Umeå University, Faculty of Medicine, Department of Radiation Sciences. Unit of Clinical Research Centre‐Östersund.
    Björk, Olle
    Lövgren, Malin
    Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed)
    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.

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