| 1. |
- Akay, Alpaslan, 1975, et al.
(författare)
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Positional Concerns among the Poor: Does Reference Group Matter? Evidence from Survey Experiments
- 2014
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Ingår i: Journal of African Economies. - : Oxford University Press (OUP). - 0963-8024 .- 1464-3723. ; 23:5, s. 673-699
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Tidskriftsartikel (refereegranskat)abstract
- Previous research studies suggest a lower degree of positional concerns among people from poor countries. Yet the evidence is limited and most often builds on the assumption that people's reference groups are the same across all individuals. We conduct a survey experiment in urban Ethiopia that is modified to include multiplicity of reference groups. We estimate positional concerns considering various reference groups to test whether the low positional concerns found in the literature are due to misspecification of the reference groups. The results show a low degree of positional concern, which is highly stable across different reference groups.
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| 2. |
- Andersson, Sofia, 1972-, et al.
(författare)
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End-of-life discussions in residential care homes improves symptom control : a national register study
- 2024
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 14:e1, s. e1008-e1015
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.OBJECTIVE: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.METHODS: All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.RESULTS: The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.CONCLUSION: The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.
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| 3. |
- Björk, Lisa, et al.
(författare)
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Cooperation under risk and ambiguity
- 2016
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- The return from investments in public goods is almost always uncertain, in contrast to the most common setup in the existing empirical literature. We study the impact of natural uncertainty on cooperation in a social dilemma by conducting a public goods experiment in the laboratory in which the marginal return to contributions is either deterministic, risky (known probabilities) or ambiguous (unknown probabilities). Our design allows us to make inferences on differences in cooperative attitudes, beliefs, and one-shot as well as repeated contributions to the public good under the three regimes. Interestingly, we do not find that natural uncertainty has a significant impact on the inclination to cooperate, neither on the beliefs of others nor on actual contribution decisions. Our results support the generalizability of previous experimental results based on deterministic settings. From a behavioural point of view, it appears that strategic uncertainty overshadows natural uncertainty in social dilemmas.
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| 4. |
- Hedman, Christel, et al.
(författare)
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Pain prevalence and pain relief in end-of-life care - a national registry study
- 2024
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Ingår i: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 23, s. 1-8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Despite pain control being a top priority in end-of-life care, pain continues to be a troublesome symptom and comprehensive data on pain prevalence and pain relief in patients with different diagnoses are scarce.METHODS: The Swedish Register of Palliative Care (SRPC) was used to retrieve data from 2011 to 2022 about pain during the last week of life. Data were collected regarding occurrence of pain, whether pain was relieved and occurrence of severe pain, to examine if pain differed between patients with cancer, heart failure, chronic obstructive pulmonary disease (COPD) and dementia. Binary logistic regression models adjusted for sex and age were used.RESULTS: A total of 315 000 patients were included in the study. Pain during the last week of life was more commonly seen in cancer (81%) than in dementia (69%), heart failure (68%) or COPD (57%), also when controlled for age and sex, p < 0.001. Severe forms of pain were registered in 35% in patients with cancer, and in 17-21% in non-cancer patients. Complete pain relief (regardless of pain intensity) was achieved in 73-87% of those who experienced pain, depending on diagnosis. The proportion of patients with complete or partial pain relief was 99.8% for the whole group.CONCLUSIONS: The occurrence of pain, including severe pain, was less common in patients with heart failure, COPD or dementia, compared to patients with cancer. Compared with cancer, pain was more often fully relieved for patients with dementia, but less often in heart failure and COPD. As severe pain was seen in about a third of the cancer patients, the study still underlines the need for better pain management in the imminently dying.TRIAL REGISTRATION: No trial registration was made as all patients were deceased and all data were retrieved from The Swedish Register of Palliative Care database.
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| 5. |
- Hedman, Christel, et al.
(författare)
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Symptom management and support in dying patients with cancer and coronavirus disease-19 : a register-based study
- 2023
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Ingår i: Journal of Palliative Care. - : Sage Publications. - 0825-8597 .- 2369-5293. ; 38:3, s. 261-267
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Little is known to what extent access to specialist palliative care (SPC) for cancer patients dying with coronavirus disease-2019 (COVID-19) affects the occurrence of breakthrough symptoms, symptom relief, and overall care, compared to hospital deaths. Our aim was to include patients with both COVID-19 and cancer and compare those dying in hospitals with those dying in SPC with reference to the quality of end-of-life care.Methods: Patients with both cancer and COVID-19 who died in hospitals (n = 430) and within SPC (n = 384) were identified from the Swedish Register of Palliative Care. The hospital and SPC groups were compared regarding the quality of end-of-life care, including the occurrence of 6 breakthrough symptoms during the last week in life, symptom relief, end-of-life care decisions, information, support, and human presence at death.Results: Breakthrough of breathlessness was more common in the hospital patients compared to the SPC patients (61% and 39%, respectively; p <.001), while pain was less common (65% and 78%, respectively; p <.001). Breakthrough of nausea, anxiety, respiratory secretions, or confusion did not differ. All 6 symptoms, except for confusion, were more often completely relieved in SPC (p =.014 to p <.001 in different comparisons). In SPC, a documented decision about the goal being end-of-life care and information about this were more common than in hospitals (p <.001). Also, to have family members present at the time of death and for family members to be offered a follow-up talk afterward was more common in SPC (p <.001).Conclusion: More systematic palliative care routines may be an important factor for better symptom control and higher quality of end-of-life care in hospitals.
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| 6. |
- Lindemann, K., et al.
(författare)
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Elderly gynaecological cancer patients at risk for poor end of life care : a population-based study from the Swedish Register of Palliative Care
- 2020
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 59:6, s. 636-643
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient's age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.Results: We included 3940 patients with the following age distribution: 1.6% were 18-39 years of age, 12.3% 40-59 years, 37.2% 60-74 years, 28.9% 75-84 years and 20% were ≥85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the 'on demand prescription for pain', the goal level was reached.Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.
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| 7. |
- Martinsson, Lisa, et al.
(författare)
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Better quality of end-of-life care for persons with advanced dementia in nursing homes compared to hospitals : a Swedish national register study
- 2020
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Hospitalisation of patients with advanced dementia is generally regarded as less preferable compared to care at home or in a nursing home. For patients with other diagnoses, young age has been associated with better end-of-life care. However, studies comparing the quality of palliative care for persons with advanced dementia in hospitals and nursing homes are scarce. The aim of this study was to investigate whether quality of end-of-life care for patients with dementia depends on age, gender and place of death.Methods: The Swedish Register of Palliative Care (SRPC) was used to identify patients who died from dementia in hospitals or nursing homes during a three-year period. The likelihood of death occurring at a hospital, based on age and gender differences, was calculated. Associations between 13 end-of-life care quality indicators collected from the SRPC and age, gender and place of care were examined in a logistic regression model.Results: Death at a hospital was associated with poorer quality of end-of-life care for 10 of the 13 measured outcomes when compared to death at a nursing home, and with better quality according to two of the outcomes. Death at a hospital was more common for men compared to women and for younger patients compared to older. Receiving fluids intravenously or via enteral tube in the last 24 h of life was strongly associated with death at a hospital. Women were more likely to have their oral health assessed and less likely to have pressure ulcers at death. Eight of 12 end-of-life care outcomes showed better results for the age group 65 to 84 years compared to those 85 years or older.Conclusions: Death in hospitals was associated with poorer quality of end-of-life care compared to death in nursing homes. Our data support the importance of advance care planning and individual assessments in nursing homes to avoid referral to hospitals during end of life. Despite established recommendations to avoid hospitalisation if possible, there were strong associations between younger age, male gender and hospitalisation in the end of life. Further studies are needed to investigate the role of socioeconomic factors in end-of-life care for this patient group.
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| 8. |
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| 9. |
- Martinsson, Lisa, et al.
(författare)
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Dying from COVID-19 in nursing homes-sex differences in symptom occurrence
- 2021
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Coronavirus disease 2019 (COVID-19), is a disease with diverse presentation. Several studies have shown different occurrence of symptoms for women and men, but no studies have been found examining sex differences in clinical presentation for nursing home residents dying from COVID-19.The objective of this study was to describe sex and age differences and the impact of a dementia diagnosis on symptom occurrence during the last week in life for persons dying from COVID-19 in nursing homes.Methods: This is a population-based retrospective study based on data from the Swedish Register of Palliative Care. A total of 1994 residents aged 65 or older who died from COVID-19 in nursing homes were identified. The impact of sex, age and a dementia diagnosis on six different symptoms was analysed using chi2-test and multivariate logistic regression.Results: Residents dying from COVID-19 were more often men (p <.002). Men more often had dyspnoea and death rattles (p <.001). Nausea was more common in women (p <.001). No sex differences in the occurrence of pain, anxiety or confusion were seen. Dyspnoea and nausea were less commonly reported in residents with dementia (p <.001).Conclusions: We found sex differences in symptom presentation for fatal COVID-19 in nursing home settings which remained after adjusting for age. Residents with a dementia diagnosis had fewer symptoms reported before death compared to those without dementia.Clinical presentation of fatal COVID-19 differs between women and men in nursing homes. Residents with fatal COVID-19 present with more unspecific and less prominent symptoms when also suffering from dementia.
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| 10. |
- Martinsson, Lisa, et al.
(författare)
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Improved data validity in the Swedish Register of Palliative Care
- 2017
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Ingår i: PLOS ONE. - : Public library science. - 1932-6203. ; 12:10
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 11. |
- Martinsson, Lisa, et al.
(författare)
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Increasing the number of patients receiving information about transition to end-of-life care : the effect of a half-day physician and nurse training
- 2016
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 6:4, s. 452-458
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 12. |
- Martinsson, Lisa, et al.
(författare)
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Parenteral Hydration in Dying Patients With Cancer : A National Registry Study
- 2024
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 67:5, s. 384-392
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Tidskriftsartikel (refereegranskat)abstract
- Context: Clinically assisted hydration during end-of-life care among patients with cancer is controversial; practice varies between clinical settings and countries, and there is a lack of evidence. Objectives: To examine whether breathlessness, respiratory secretion, or confusion correlates with receiving parenteral hydration during end of life, adjusted for sex, age, and place of death. Methods: The Swedish Register of Palliative Care database was used to collect data about the usage of parenteral hydration during the last day of life, and the occurrence of three symptoms during the last week. Adults dying from cancer during 2011–2021 in hospitals, in residential care homes, and within specialized palliative care were included. Correlation between parenteral hydration and symptoms was examined using χ2-test and logistic regression. Results: A total of 147,488 patients were included in the study. Parenteral hydration was more often prescribed to younger persons, to men, and in acute hospitals (compared to other settings), p < 0.001 in all three comparisons. Patients with hematological malignancies (20%) and ovarian cancer (16%) were most likely to receive parenteral hydration, while those with brain tumors (6%) were least likely. The presence of all three analyzed symptoms during the last week (breathlessness, respiratory secretion, and confusion) were significantly correlated with having received parenteral hydration during the last day of life (p < 0.001). In the final logistic regression model adjusted for age, sex, and place of death, the only symptom with remaining correlation to parenteral hydration was breathlessness (OR 1.56, 95% CI 1.50–1.6). Conclusion: There is an association between parenteral hydration and increased breathlessness in patients with cancer. Provision of parenteral hydration is more prevalent in men, younger patients, and those with hematological malignancies or ovarian cancer, and most widespread in acute hospital settings.
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| 13. |
- Martinsson, Lisa, et al.
(författare)
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Patients' perspectives on information from physicians during palliative chemotherapy : A qualitative study
- 2016
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 14:5, s. 495-502
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
- Martinsson, Lisa, 1985-
(författare)
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Quality improvement in palliative care : the role of a national quality register and perceptions of information during palliative chemotherapy
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionThere is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care.Honest information from physicians is regarded as an important part of palliative care. Information about the transition to end-of-life care (ITEOL), conveyed by physicians to patients, has also been described as a ‘breakpoint conversation’.Quality registers enable monitoring and improvement of quality of care, and clinical research. The Swedish Register of Palliative Care (SRPC) is a Swedish national quality register that collects data from hospitals, hospices, nursing homes and home care, with an end-of-life questionnaire (ELQ) about palliative care content focusing on the last week of life.AimsStudy I – The aim was to examine the validity of the ELQ from the SRPC.Study II – The aim was to examine whether participation in the SRPC increases the quality of palliative care over a three-year period regarding eight items in the ELQ.Study III – The aim was to examine whether an educational intervention for physicians and nurses in nursing homes and hospitals increases the proportion of patients who receive ITEOL.Study IV – The aim was to describe how patients with cancer perceive the information they receive from physicians during palliative chemotherapy.MethodsStudy I – Data from 100 medical records and data from the paper versions of the ELQ filled in at a specialised palliative unit were compared with data reported to the SRPC.Study II – Data from eight items in the ELQ reported to the SRPC from all healthcare units that had reported patients continuously during a three-year period were compared year-by-year with logistic regression.Study III – 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. Four hospitals and four municipalities were assigned matched controls. The proportion of patients who received ITEOL before and after the intervention was measured with the ELQ. The effect of the intervention was analysed with a multivariable logistic regression model.Study IV – Fifteen semi-structured interviews with patients with incurable cancer were conducted, transcribed verbatim and analysed with qualitative content analysis.ResultsStudy I – The questions in the ELQ showed a congruity of 22% to 100% when comparing data from medical records with data reported to the SRPC. Eight questions fell below 80%. The paper versions filled in at the unit and the data reported to the SRPC showed a congruity of between 91% and 100%.Study II – The prevalence of six symptoms decreased. The prescription of PRN (pro re nata – ‘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. There was no change in the proportion of patients or next of kin who received ITEOL.Study III – The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a six-month period before the intervention) to 42.0% (during a six-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 the multivariable model.Study IV – Three categories were disclosed during the analytical process: ‘living with a death sentence’, ‘depending on chemotherapy’, and ‘living with uncertainty’.ConclusionsA national quality register has the potential of contributing to quality improvement in palliative care. Study I showed varied validity in the ELQ, implying a need to modify the questionnaire. Study II showed that participation in the SRPC was covariant with quality improvements in end-of-life care over time. Study III showed that more patients received ITEOL after an educative half-day intervention directed to physicians and nurses. Study IV showed that patients undergoing palliative chemotherapy perceived that their disease was incurable and deadly, and that conditions for future treatment and survival were uncertain.
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| 15. |
- Martinsson, Lisa, et al.
(författare)
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Quality of end-of-life care in patients with dementia compared to patients with cancer : A population-based register study
- 2018
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 13:7
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Globally, dementia is one of the leading causes of death. Given the growing elderly population in the world, the yearly number of deaths by dementia is expected to increase. Patients dying from dementia are reported to suffer from a burden of symptoms similar to that of patients with cancer, but receive less medication against symptoms, have a lower probability of palliative care planning and seldom have access to specialised palliative care. Studies investigating the quality of palliative care in dementia are scarce. The aim of this Swedish national study was to compare the quality of end-of-life care between patients with dementia and patients with cancer regardless of place of care. Methods Thirteen end-of-life care quality indicators collected by the Swedish Register of Palliative Care (SRPC) were compared between patients dying from dementia and patients dying from cancer. Data were collected from deaths occurring in nursing homes, hospitals, specialised and general palliative home care, and palliative in-patient units during a three-year period (during March 2012 to February 2015). Analyses were performed using a multivariable logistic regression model, adjusted for age and gender. A subgroup of patients with Alzheimer's disease was identified and compared to patients with other and unspecified types of dementia. Results A total of 4624 deaths from Alzheimer's disease, 11 804deaths from other dementia diagnoses and 51 609 deaths from cancer were included. For six of the 13 quality indicators examined (prescription of PRN drugs against nausea and anxiety, information and bereavement support offered to next of kin, pain assessment and specialised palliative care consultations), poorer outcomes were shown for the dementia group in comparison to the cancer group. Two outcomes (prevalence of pressure ulcers and fluid therapy during the last 24 hours in life) showed better outcomes for the dementia group. The outcomes for the 13 quality indicators were similar for patients with Alzheimer's disease compared to patients with other and unspecified types of dementia. Conclusions The findings in this study indicates that patients dying from Alzheimer's disease and other types of dementia receive a poorer quality of end-of-life care concerning several important end-of-life care areas when compared to patients dying from cancer. Guidelines for end-of-life care in Sweden cannot explain or justify these differences. Further studies are needed to find possible ways to improve end-of-life care in the large and growing group of patients dying from dementia.
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| 16. |
- Martinsson, Lisa, et al.
(författare)
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Registration in a quality register : a method to improve end-of-lifecare—a cross-sectional study
- 2012
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 2:4
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 17. |
- Martinsson, Lisa, et al.
(författare)
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Symptom assessment in the dying : family members versus healthcare professionals
- 2023
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: Symptom management and support of the family members (FMs) are consideredessential aspects of palliative care. During end of life, patients are often not able to self-reportsymptoms. There is little knowledge in the literature of how healthcare professionals(HCPs) assess symptoms compared with FMs.The objective was to compare the assessment ofsymptoms and symptom relief during the final week of life between what was reported by FMsand what was reported by HCPs.Methods: Data from the Swedish Register of Palliative Care from 2021 and 2022 were usedto compare congruity of the assessments by the FMs and by HCPs regarding occurrence and reliefof three symptoms (pain, anxiety and confusion), using Cohen’s kappa.Results: A total of 1131 patients were included. The agreement between FMs and HCPs was poorfor occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety(kappa 0.30). When agreeing on a symptom being present, agreement on relief of thatsymptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trendwas that HCPs more often rated occurrence of pain and anxiety, less often occurrence ofconfusion and more often complete symptom relief compared with the FMs.Conclusions: The views of FMs and HCPs of the patients’ symptoms differ in the end-of-life context, but both report important information and their symptom assessments should beconsidered both together and individually. More communication between HCPs and FMs couldprobably bridge some of these differences.
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| 18. |
- Martinsson, Lisa, et al.
(författare)
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Symptoms, symptom relief and support in COVID-19 patients dying in hospitals during the first pandemic wave
- 2021
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: At the time of the first wave of the COVID-19 pandemic in Sweden, little was known about how effective our regular end-of-life care strategies would be for patients dying from COVID-19 in hospitals. The aim of the study was to describe and evaluate end-of-life care for patients dying from COVID-19 in hospitals in Sweden up until up until 12 November 2020.Methods: Data were collected from the Swedish Register of Palliative Care. Hospital deaths during 2020 for patients with COVID-19 were included and compared to a reference cohort of hospital patients who died during 2019. Logistic regression was used to compare the groups and to control for impact of sex, age and a diagnosis of dementia.Results: The COVID-19 group (1476 individuals) had a lower proportion of women and was older compared to the reference cohort (13,158 individuals), 81.8 versus 80.6 years (p <.001). Breathlessness was more commonly reported in the COVID-19 group compared to the reference cohort (72% vs 43%, p <.001). Furthermore, anxiety and delirium were more commonly and respiratory secretions, nausea and pain were less commonly reported during the last week in life in the COVID-19 group (p <.001 for all five symptoms). When present, complete relief of anxiety (p =.021), pain (p =.025) and respiratory secretions (p =.037) was more often achieved in the COVID-19 group. In the COVID-19 group, 57% had someone present at the time of death compared to 77% in the reference cohort (p <.001).Conclusions: The standard medical strategies for symptom relief and end-of-life care in hospitals seemed to be acceptable. Symptoms in COVID-19 deaths in hospitals were relieved as much as or even to a higher degree than in hospitals in 2019. Importantly, though, as a result of closing the hospitals to relatives and visitors, patients dying from COVID-19 more frequently died alone, and healthcare providers were not able to substitute for absent relatives.
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| 19. |
- Martinsson, Lisa, et al.
(författare)
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Translation and cultural adaptation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) to Swedish
- 2022
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Ingår i: BMC Nursing. - : BioMed Central. - 1472-6955. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Systematic assessment tools are helpful for improving and maintaining quality of care. The Integrated Palliative care Outcome Scale (IPOS) was developed for systematic assessment of persons receiving palliative care in a patient-centred way. A version of this tool, the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem), has been developed for patients with dementia. The aim of this study was to develop a version of the IPOS-Dem translated into Swedish and culturally adapted to a Swedish care setting.Methods: Forward and backward translations from English into Swedish were performed to develop a first Swedish version. This version was modified for clarity and cultural adaptation based on 13 interviews with nurses and assistant nurses working in geriatrics and dementia care homes.Results: The interview process revealed several issues with the first version that emerged from the translation process. This was changed and further tested to work well, resulting in the final version of the Swedish IPOS-Dem. The tool was perceived as clinically useful but somewhat overlapping with already implemented tools for assessing behavioural and psychological symptoms in dementia.Conclusion: The Swedish version of the IPOS-Dem can now be used as a tool for assessing palliative care related problems and concerns for persons with advanced dementia. Future studies can focus on implementation as well as examining validity and reliability of this tool in a Swedish context.
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| 20. |
- Martinsson, Lisa, et al.
(författare)
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Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care
- 2011
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Ingår i: ACTA ONCOLOGICA. - : Informa Healthcare. - 0284-186X .- 1651-226X. ; 50:5, s. 642-647
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 21. |
- Martinsson, Lisa, et al.
(författare)
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Were Clinical Routines for Good End-of-Life Care Maintained in Hospitals and Nursing Homes During the First Three Months of the Outbreak of COVID-19? : A National Register Study
- 2021
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 61:1, s. 11-19
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Tidskriftsartikel (refereegranskat)abstract
- Context: Although the coronavirus disease 2019 (COVID-19) pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care.Objectives: The objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths because of COVID-19 compared with a reference cohort from 2019 and whether they differed between nursing homes and hospitals.Methods: Data about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March-May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort and between the nursing home and hospital COVID-19 deaths.Results: About 1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared with the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had a specialized palliative care team consultation (P < 0.0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes: 18%; hospitals: 100%).Conclusion: This national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.
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| 22. |
- Nilsson, R. Henrik, 1976, et al.
(författare)
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Improving ITS sequence data for identification of plant pathogenic fungi
- 2014
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Ingår i: Fungal Diversity. - : Springer Science and Business Media LLC. - 1560-2745 .- 1878-9129. ; 67:1, s. 11-19
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Tidskriftsartikel (refereegranskat)abstract
- Plant pathogenic fungi are a large and diverse assemblage of eukaryotes with substantial impacts on natural ecosystems and human endeavours. These taxa often have complex and poorly understood life cycles, lack observable, discriminatory morphological characters, and may not be amenable to in vitro culturing. As a result, species identification is frequently difficult. Molecular (DNA sequence) data have emerged as crucial information for the taxonomic identification of plant pathogenic fungi, with the nuclear ribosomal internal transcribed spacer (ITS) region being the most popular marker. However, international nucleotide sequence databases are accumulating numerous sequences of compromised or low-resolution taxonomic annotations and substandard technical quality, making their use in the molecular identification of plant pathogenic fungi problematic. Here we report on a concerted effort to identify high-quality reference sequences for various plant pathogenic fungi and to re-annotate incorrectly or insufficiently annotated public ITS sequences from these fungal lineages. A third objective was to enrich the sequences with geographical and ecological metadata. The results – a total of 31,954 changes – are incorporated in and made available through the UNITE database for molecular identification of fungi (http://unite.ut.ee), including standalone FASTA files of sequence data for local BLAST searches, use in the next-generation sequencing analysis platforms QIIME and mothur, and related applications. The present initiative is just a beginning to cover the wide spectrum of plant pathogenic fungi, and we invite all researchers with pertinent expertise to join the annotation effort.
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| 23. |
- Strang, Peter, et al.
(författare)
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COVID-19 : Symptoms in Dying Residents of Nursing Homes and in Those Admitted to Hospitals
- 2021
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 24:7, s. 1067-1071
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To compare symptom prevalence and relief in residents who died in nursing homes with residents who were acutely referred to hospitals.Design: Data on symptoms during the last week of life from the Swedish Register of Palliative Care (SRPC).Setting and Subjects: Nursing homes (n = 1903 deaths) and hospitals in Sweden (n = 202 nursing home residents who were admitted to hospital before death). Data were retrieved on August 24, 2020.Results: Residents who died in hospitals had more breakthrough symptoms of breathlessness (60% vs. 31%, p < 0.0001) and delirium (41% vs. 25%, p < 0.0001) than those who died in nursing homes. When symptoms were present, complete symptom relief was seen less often in hospitals compared with nursing homes (breathlessness, 28% vs. 47%, p < 0.001; delirium, 10% vs. 35%, p < 0.0001; respiratory secretions, 30% vs. 55%, p < 0.0001).Conclusion: Despite access to oxygen and pharmacologic/nonpharmacologic therapies in hospitals, symptom relief in dying nursing home residents acutely admitted to hospitals was lower compared with those who died in nursing homes, possibly because of differences in patient characteristics.
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| 24. |
- Strang, Peter, et al.
(författare)
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Dying From COVID-19 : Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals: A National Register Study
- 2020
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 60:4, s. E2-E13
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Tidskriftsartikel (refereegranskat)abstract
- Context: Preparation for an impending death through end-of-life (EOL) discussions and human presence when a person is dying is important for both patients and families.Objectives: The aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from coronavirus disease 2019 (COVID-19), comparing deaths in nursing homes and hospitals.Methods: The national Swedish Register of Palliative Care was used. All expected deaths from COVID-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019).Results: A total of 1346 expected COVID-19 deaths in nursing homes (n = 908) and hospitals (n = 438) were analyzed. Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (P < 0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, P < 0.001), and dying with someone present was much more uncommon (59% vs. 83%, P < 0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, P < 0.0001), and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, P < 0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (P < 0.001). The corresponding figures for staff were 52% and 38% (P < 0.0001).Conclusion: Dying from COVID-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families.
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| 25. |
- Tegenborg, Sussi, 1968-
(författare)
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Pain or no pain? That is the question : an evaluation of the observational pain assessment instrument Abbey Pain Scale in patients with cancer
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: The Abbey Pain Scale (APS) is an observational pain assessment instrument that was created for use among patients with dementia. It is sometimes used in Sweden to assess pain in patients with advanced cancer who are unable to vocalize their pain, but it has never been evaluated in this population.Aim: To evaluate observational pain assessment for people with advanced cancer in a palliative care setting, focusing on the APS.Methods: The APS was translated and adapted into a Swedish dementia context through interviews with health care professionals (n=11). The resulting APS-SE was then used in a qualitative content analysis exploring health care professionals’ experience of using the instrument in patients with advanced cancer (n=12). The psychometrics of the APS-SE when used in patients with advanced cancer (n=72) were determined through test-retest and inter-rater reliability, internal consistency reliability, and responsiveness to opioids. Criterion validity was determined against the patients’ self-reported pain (n=45).Results: The APS-SE was comprehensible by users within dementia care, regardless of their educational and linguistic background. The qualitative analysis revealed that when used in patients with advanced cancer, the APS-SE fulfilled the need for an observational pain assessment instrument, but was not always on target and did not fully suit the clinical situation. The psychometric analysis showed slight criterion validity (κ=0.08) and unacceptable internal consistency reliability (Cronbach’s α=0.01). The test-retest reliability was good (ICC=0.82) and the inter-rater reliability moderate (ICC=0.64), but the latter had a confidence interval ranging from poor to good. Responsiveness to opioids was demonstrated (p=0.01).Conclusions: This thesis underscores the need for a specialized observational pain assessment instrument explicitly tailored for patients with advanced cancer. The current lack of a recognized alternative emphasizes the importance of developing such an instrument to address the critical gap in observational pain assessment in the palliative oncology setting.
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| 26. |
- Tegenborg, Sussi, et al.
(författare)
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Physicians’ and nurses’ experience of using the Abbey Pain Scale (APS) in people with advanced cancer : a qualitative content analysis
- 2023
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Ingår i: BMC Nursing. - : BioMed Central (BMC). - 1472-6955. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The Abbey Pain Scale (APS), an observational scale used to assess pain in people with end-stage dementia, is also widely used in Sweden to assess pain in patients with advanced cancer. It is unclear whether the APS is appropriate in this context. This study aims to explore physicians’ and nurses’ experiences of using a Swedish translation of the APS (the APS-SE) in people with advanced cancer.Methods: Conventional qualitative content analysis was used to analyse interviews with physicians (n = 6) and nurses (n = 6) working in oncology and specialised palliative care about their experiences of using the APS-SE.Results: Three categories were created: fills a need, not always on target, and does not fully suit the clinical situation. Participants reported that although the APS-SE provides support in a challenging situation, it sometimes misses the mark: it does not distinguish well between pain and other types of suffering and its pain score tends not to reflect professionals’ intuitive perceptions of patients’ suffering. Some parts of the APS-SE were not considered useful, and others were perceived as ethically questionable.Conclusion: Health professionals greatly need an observational pain assessment tool for people with advanced cancer. The APS-SE is helpful in this context, but participants did not perceive it as ideal. Its problems seem inherent to the original APS rather than related to its translation from English to Swedish. Further research is needed to provide a more suitable pain assessment tool for patients with advanced cancer.
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| 27. |
- Tegenborg, Sussi, et al.
(författare)
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The Abbey Pain Scale : not sufficiently valid or reliable for assessing pain in patients with advanced cancer
- 2023
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Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 62:8, s. 953-960
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Tidskriftsartikel (refereegranskat)abstract
- Background: Patients with advanced cancer can be unable to verbalize their pain. The Abbey Pain Scale (APS), an observational tool, is used to assess pain in this setting, but has never been psychometrically tested for people with cancer. The aim of this study was to assess the validity, reliability, and the responsiveness of the APS to opioids for patients with advanced cancer in a palliative oncology care setting.Material and Methods: Patients with advanced cancer and poor performance status, drowsiness, unconsciousness, or delirium, were assessed for pain using a Swedish translation of the APS (APS-SE) and, if possible, the Numeric Rating Scale (NRS). The assessments using APS were conducted simultaneously, but independently, by the same raters on two separate occasions, approximately one hour apart. Criterion validity was assessed by comparing the APS and NRS values using Cohen’s kappa (κ). Inter-rater reliability was determined using the intraclass correlation coefficient (ICC), internal consistency using Cronbach’s α, and responsiveness to opioids using the Wilcoxon signed-rank test.Results: Seventy-two patients were included, of whom n = 45 could rate their pain using the NRS. The APS did not detect any of the n = 22 cases of moderate or severe pain self-reported using the NRS. The APS at first assessment had a κ of 0.08 (CI: −0.06 to 0.22) for criterion validity, an ICC of 0.64 (CI: 0.43–0.78) for inter-rater reliability, and a Cronbach’s α of 0.01 for internal consistency. The responsiveness to opioids was z = −2.53 (p = 0.01).Conclusion: The APS was responsive to opioids but displayed insufficient validity and reliability and did not detect moderate or severe pain as indicated by the NRS. The study showed a very limited clinical use of the APS in patients with advanced cancer.
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| 28. |
- Tegenborg, Sussi, et al.
(författare)
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Translation, cultural adaptation and recommendations for clinical implementation of the Abbey Pain Scale to a Swedish dementia care context
- 2023
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 10:3, s. 1367-1374
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To translate and culturally adapt the APS for people with end-stage dementia in various care settings in Sweden and to investigate factors important for clinical implementation.Design: Qualitative study design with interviews with care staff.Methods: After an initial discussion of concepts, the Abbey Pain Scale was translated into Swedish and back into English to check for accuracy. The resulting Swedish version was then revised and culturally adapted through a series of interviews with nursing assistants, nurses and physicians (n = 11) to develop the final Swedish version.Results: A Swedish version of the Abbey Pain Scale was developed. The instrument was considered straightforward and easy to use, but needed adjustments to make it more comprehensible to staff with less education in health care or with other first languages than Swedish. It was found important to carefully introduce new staff members to the instrument, to ensure they understand all the words and items.
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