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2.
  • Alvariza, Anette, et al. (author)
  • Ny definition av palliativ vård med fokus på lidande
  • 2020
  • In: Lakartidningen. - 0023-7205 .- 1652-7518. ; 117
  • Journal article (peer-reviewed)abstract
    • Palliative care was initially developed for patients with a cancer diagnosis and severe symptoms. Despite the ambition to broaden the palliative care approach to include other groups, patients with cancer are still a majority in specialised palliative care. The broader view and development of palliative care has led to an intense debate on existing definitions. Following a request from The Lancet Commission on global palliative care, the International Association of Hospice and Palliative Care (IAHPC) has presented a new definition. The proposal was developed in several stages, in collaboration with specialists in palliative care from a total of 88 countries. The IAHPC's definition differs from the WHO's definition in several aspects. Most importantly, the IAHPC's definition takes a reversed perspective and instead of focusing on life-threatening illness as motivating palliative care, the new proposal focuses on serious suffering of a person with severe illness.
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3.
  • Axelsson, Bertil, et al. (author)
  • Analgesic effect of paracetamol on cancer related pain in concurrent strong opioid therapy. A prospective clinical study
  • 2008
  • In: Acta Oncologica. - : Informa UK Limited. - 0284-186X .- 1651-226X. ; 47:5, s. 891-895
  • Journal article (peer-reviewed)abstract
    • Introduction. In palliative cancer care, when approaching death, swallowing difficulties and the burden of tablet intake frequently makes us reconsider each individual drug prescribed. Through the last two decades the routine of always combining a strong opioid with paracetamol has been widely spread in Sweden. Clinical experience has challenged this routine as many patients seem to manage equally well without paracetamol. To find out whether this might be of clinical importance, we wanted to perform a more systematic registration. Material and methods. Thirty-four incurable cancer patients with well controlled pain (NRS 4), treated by specialised palliative home care teams, with ongoing medication with the strong opioid paracetamol combination was recruited to this prospective clinical study. The effect of completely stopping paracetamol medication was evaluated four days later at follow-up. Results. At follow-up nine patients (26%) felt more pain compared to when they entered the study, two patients (6%) felt less pain and 23 (68%) felt no difference. When asked about their preference about future paracetamol treatment 18 patients (53%) wanted to stop taking it, six patients (18%) wanted to continue with regular paracetamol medication as before, and ten patients (29%) wanted to take paracetamol as needed. No clinical predictors of paracetamol response could be identified. Discussion. The results of this study indicate that a critical evaluation, in every patient, of the subjective additive analgesic effect of paracetamol in concurrent strong opioid therapy is advisable and that stopping paracetamol medication not necessarily implies increased pain. Rather in some patients the cessation of paracetamol medication is experienced as a relief as pain control is maintained with a lesser tablet burden.
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4.
  • Axelsson, Bertil, et al. (author)
  • Bostadsort avgör den palliativa vårdens resurser och kvalitet : Satsningar för att öka kompetensen behövs
  • 2016
  • In: Läkartidningen. - : Läkartidningen Förlag. - 0023-7205 .- 1652-7518. ; 113:47
  • Journal article (peer-reviewed)abstract
    • Access to palliative care is unequally distributed across Sweden and thus does not meet the needs. The holistic perspective of palliative care is sometimes contrasted with the usual medical focus on organ failure and disease. Palliative consultation teams provide specialist palliative care competencies for staff caring for patients in primary care, nursing homes and in hospitals. Efforts to increase knowledge and skills in palliative care is needed at undergraduate university level and through postgraduate and specialist training. Well organized cooperation between municipalities, county councils and primary care is crucial for patients in the final stages of life.
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  • Axelsson, Bertil (author)
  • The Challenge: Equal Availability to Palliative Care According to Individual Need Regardless of Age, Diagnosis, Geographical Location, and Care Level
  • 2022
  • In: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:7
  • Journal article (peer-reviewed)abstract
    • The European Council, the World Health Organization, the International Association of Hospice and Palliative Care, and various other national guidelines emphasize equal provision of palliative care. To fulfill this vision, all involved need to be aware of the existing situation even in western European countries. Data from the European Atlas of Palliative Care and the Swedish Registry of Palliative Care are used to illustrate the present inequalities. The data illustrate the unequal provision of palliative care relating to level of care, place of residence, diagnoses, and age. The challenge of providing equal palliative care remains, even in Western European countries, in spite of all positive developments. Different approaches that may contribute to successful implementation of equal palliative care are discussed. The challenge is still there and will require some effort to resolve.
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8.
  • Axelsson, Bertil (author)
  • The incurable cancer patient at the end of life : Medical care utilization, quality of life and the additive analgesic effect of paracetamol in concurrent morphine therapy
  • 2001
  • Doctoral thesis (other academic/artistic)abstract
    • Only 12% of the patients died at home. When the period between diagnosis and death was less than one month, every patient died in an institution. Younger patients, marriedpatients, and those living within the 40 km radius of the hospital utilized more hospital days. The "length of terminal hospitalisation" and the "proportion of days at home/ total inclusion days" seemed to be feasible outcome varibles when evaluating a palliative support service. The hospital-based palliative support service in this study defrayed its own costs due to a median saving of 10 hospital days/patient, compared with matched historical controls.A 19-item quality of life questionnaire (AQEL) was developed which evidenced good signs of reliability and validity. The item most closely correlated to global quality of life was the sense of meaningfulness. This was true for both patients and their spouses. Patients´ levels of pain and anxiety did not increase at the end of life. In this study we could not find convincing evidence for an additive analgesic effect of paracetamol in morphine therapy of pain in cancer patients.
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  • Eljas Ahlberg, Eva, et al. (author)
  • End-of-life care in amyotrophic lateral sclerosis : A comparative registry study
  • 2021
  • In: Acta Neurologica Scandinavica. - : John Wiley & Sons. - 0001-6314 .- 1600-0404. ; 143:5, s. 481-488
  • Journal article (peer-reviewed)abstract
    • Background: Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End‐of‐life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS.Aim: To study whether the quality of end‐of‐life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management, and communication.Design: This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012–2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3,300).Results: Between‐group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as‐needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end‐of‐life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer.Conclusions: The results indicate that patients with ALS receive poorer end‐of‐life care than patients dying from cancer in terms of validated symptom assessments, prescription of as‐needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.
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12.
  • Fritzson, Anna, et al. (author)
  • Association between parenteral fluids and symptoms in hospital end-of-life care : an observational study of 280 patients
  • 2015
  • In: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 5:2, s. 160-168
  • Journal article (peer-reviewed)abstract
    • 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.
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  • Gholiha, Alex, et al. (author)
  • Stora luckor i journaler vid vård i livets slutskede : Journaluppgifter saknas för data inrapporterade till Palliativregistret
  • 2011
  • In: Läkartidningen. - : Sveriges läkarförbund. - 0023-7205 .- 1652-7518. ; 108:16-17, s. 918-921
  • Journal article (peer-reviewed)abstract
    • 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.
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  • Gray, Sarah, et al. (author)
  • The prevalence of deranged C-reactive protein and albumin in patients with incurable cancer approaching death
  • 2018
  • In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:3
  • Journal article (peer-reviewed)abstract
    • 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.
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  • Gustafsson, Agnetha (author)
  • Evaluation of attenuation and scatter corrections in lung and brain SPECT
  • 2001
  • Doctoral thesis (other academic/artistic)abstract
    • Single Photon Emission Computed Tomography (SPECT) is used to image functional processes in the human body. The image process is affected by physical effects such as attenuation, scatter, spatial resolution and statistical noise. The aim of this work was to investigate how attenuation and scatter effects and their associated correction methods affect the image quality in lung and brain SPECT.The effects of attenuation and scattering on the image of a uniform activity distribution in the lungs was investigated using Monte Carlo simulated data and the attenuation effect was evaluated in healthy volunteers. The homogeneity was measured as the CV inside a well-defined lung contour. The attenuation effect in lung SPECT was estimated to be about 13-14% expressed as the CV. The homogeneity improved with increasing accuracy of the attenuation correction method. After attenuation correction the remaining inhomogeneity in healthy subjects was considerable and could not be explained by statistical noise and camera non-uniformity. A non-uniform attenuation correction was thus required and a TCT-based density map was found to be adequate in most instances.The accuracy of the attenuation correction methods was studied in Monte Carlo simulated brain SPECT using the normalised mean square error, NMSE. The different degrees of accuracy in the methods were also reflected in the absolute deviation of the relative regional cerebral blood flow (rCBF) according to the min-max method. The NMSE value improved with the accuracy of the attenuationcorrection method. The difference in relative rCBF value was generally less than 5%. Therefore, it is unlikely that the choice of attenuation correction method will affect the diagnostic accuracy.The detectability, expressed as the contrast-to-noise-ratio dependence on the choice of energy window, was evaluated using SPECT studies of a thorax phantom containing cold lesions inside the lungs and a realistic brain phantom. The effects of subtractive scatter correction methods such as the dual-window method (DW), the triple-energy-window method (TEW) and the Klein-Nishina method (KN) were also evaluated. An optimal photopeak window setting was found to be 128-154 keV in lung SPECT for a gamma camera with 10% energy resolution, and 130-154 keV in rCBF SPECT for a gamma camera with 9% energy resolution. The detection limit for lung SPECT for spherical lesions is about 2 cm in diameter when normal variations in the lungs are relatively small compared with the statistical noise level. Under these conditions the detectability is degraded by using scatter correction, except when the TEW scatter correction is used for small lesions (<3 cm in diameter), when about the same detectability is achieved.
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  • Henoch, Ingela, et al. (author)
  • 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 care.
  • 2010
  • In: Quality of life research. - : Springer Science and Business Media LLC. - 1573-2649 .- 0962-9343. ; 19:5, s. 739-750
  • Journal article (peer-reviewed)abstract
    • PURPOSE: The aim of the study was to further validate the Assessment of Quality of life at the End of Life (AQEL) questionnaire, to explore whether conceptually consistent scales could be confirmed and how the instrument relates to other widely used and validated HRQL instruments. METHODS: A total of 106 patients with lung cancer in palliative care completed the 20-item AQEL, the EORTC QLQ-C30, Hospital Anxiety and Depression Scale (HADS), Sense of Coherence (SOC-13) and Social Support Survey (SSS). Construct validity of the AQEL was tested by multitrait scaling, principal components analysis, inter-scale correlations and known-groups comparisons. RESULTS: Five scales were supported by multitrait scaling: Basic function, Activity, Emotional function, Cognitive function and Existential needs, with satisfactory (>.7) internal consistency for the latter three and intermediate (>.5) for the remaining two. A Social support scale was supported by principal components analysis, but exhibited a low internal consistency. Items on health care issues and physical symptoms worked best as individual items. Expected correlations with other instruments were found for all scales. Activity was sensitive to different levels of functioning as defined by performance status. CONCLUSIONS: This study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.
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  • Herlitz, Johan, 1949, et al. (author)
  • Type of arrhythmia at EMS arrival on scene in out-of-hospital cardiac arrest in relation to interval from collapse and whether a bystander initiated CPR.
  • 1996
  • In: The American journal of emergency medicine. - : W.B. Saunders Co.. - 0735-6757 .- 1532-8171. ; 14:2, s. 119-23
  • Journal article (peer-reviewed)abstract
    • Outcome after cardiac arrest is strongly related to whether the patient has ventricular fibrillation at the time the emergency medical service (EMS) arrives on the scene. The occurrence of various arrhythmias at the time of EMS arrival among patients with out-of-hospital cardiac arrest was studied in relation to the interval from collapse and whether cardiopulmonary resuscitation (CPR) was initiated by a bystander. The patients studied were all those with out-of-hospital cardiac arrest in Goteborg, Sweden, between 1980 and 1992 in whom CPR was attempted by the arriving EMS and for whom the interval between collapse and the arrival of EMS was known. In all, information on the time of collapse and the arrival of EMS was available for 1,737 patients. Among patients for whom EMS arrived within 4 minutes of collapse, 53% were found in ventricular fibrillation/tachycardia. There was a successive decline in occurrence of such arrhythmias with time. However, when the interval exceeded 20 minutes, ventricular fibrillation/tachycardia was still observed in 27% of cases. Bystander CPR increased the occurrence of such arrhythmias regardless of the interval between collapse and EMS arrival.
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  • Holmlund, Bertil, et al. (author)
  • Mikroekonomi
  • 1998
  • Book (other academic/artistic)
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  • Johansson, Bertil, et al. (author)
  • Isodicentric 7p, idic(7)(q11.2), in acute myeloid
  • 2001
  • In: Genes, Chromosomes and Cancer. - 1045-2257. ; 30:3, s. 261-266
  • Journal article (peer-reviewed)abstract
    • Three adult de novo acute myeloid leukemias (AML M1, M2, and M4) with an isochromosome 7p are presented. No additional abnormalities were deterred by G-band and multicolor, using combined binary ratio labeling, fluorescence in situ hybridization (FISH) analyses, indicating that the i(7p) was the sole. i.e., the primary, chromosomal aberration. Although the patients were elderly-68, 72, and 78 years old-they all responded very well to chemotherapy, achieving complete remission lasting more than a year. Further FISH analyses, using painting, centromeric, as well as 7q11.2-specific YAC probes, revealed that the i(7p) contained two centromeres and that the breakpoints were located in 7q11.2. Thus, the abnormality should formally be designated idic(7)(q11.2). The detailed mapping disclosed a breakpoint heterogeneity, with the breaks in 7q11.2 varying among the cases, being at least 1,310 kb apart. Furthermore, the breakpoints also differed within one of the cases, being located on both the proximal and the distal side of the most centromeric probe used. Based on our three patients, as well as on a previously reported 82-year-old patient with AML M2 and idic(7)(q11) as the only chromosomal change, we suggest that this abnormality, as the sole anomaly, is associated with AML in elderly patients who display a good response to induction chemotherapy and. hence, have a favorable prognosis. Furthermore, the heterogeneous breakpoints in 7q11.2 suggest that the important functional outcome of the idic(7)(q11.2) is the genomic imbalance incurred, i.e., gain of 7p and loss of 7q material, rather than a rearrangement of a specific gene.
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  • Jönsson, Arne, 1955-, et al. (author)
  • Skim reading of audio information
  • 2008
  • In: The second Swedish Language Technology Conference SLTC-08,2008. ; , s. 23-24
  • Conference paper (peer-reviewed)
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  • Jönsson, Arne, 1955-, et al. (author)
  • Using Language Technology to Improve Interaction and Provide Skim Reading Abilities to Audio Information Services
  • 2008
  • In: Collaboration and the Knowledge Economy: Issues, Applications, Case Studies. - : IOS Press. - 9781586039240 ; , s. 1289-
  • Conference paper (other academic/artistic)abstract
    • In this paper we present language technology enhancements to audio-based information services (i.e. services where information is presented using spoken language). The enhancements presented in the paper addresses two issues for audio-based services: 1) interaction with the service is rigid and 2) the ability to listen to summaries is limited. Our developments allow for more natural and efficient control of the service and means that facilitates skim reading. Using speech dialogue instead of traditional buttons provides means for more advanced navigation in the audio material. Vector space techniques are used to collect the most relevant sentences in a text and allows for skim reading of varying depth.
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  • Larsson, Anne, 1972- (author)
  • Corrections for improved quantitative accuracy in SPECT and planar scintigraphic imaging
  • 2005
  • Doctoral thesis (other academic/artistic)abstract
    • A quantitative evaluation of single photon emission computed tomography (SPECT) and planar scintigraphic imaging may be valuable for both diagnostic and therapeutic purposes. For an accurate quantification it is usually necessary to correct for attenuation and scatter and in some cases also for septal penetration. For planar imaging a background correction for the contribution from over- and underlying tissues is needed. In this work a few correction methods have been evaluated and further developed. Much of the work relies on the Monte Carlo method as a tool for evaluation and optimisation. A method for quantifying the activity of I-125 labelled antibodies in a tumour inoculated in the flank of a mouse, based on planar scintigraphic imaging with a pin-hole collimator, has been developed and two different methods for background subtraction have been compared. The activity estimates of the tumours were compared with measurements in vitro. The major part of this work is attributed to SPECT. A method for attenuation and scatter correction of brain SPECT based on computed tomography (CT) images of the same patient has been developed, using an attenuation map calculated from the CT image volume. The attenuation map is utilised not only for attenuation correction, but also for scatter correction with transmission dependent convolution subtraction (TDCS). A registration method based on fiducial markers, placed on three chosen points during the SPECT examination, was evaluated. The scatter correction method, TDCS, was then optimised for regional cerebral blood flow (rCBF) SPECT with Tc-99m, and was also compared with a related method, convolution scatter subtraction (CSS). TDCS has been claimed to be an iterative technique. This requires however some modifications of the method, which have been demonstrated and evaluated for a simulation with a point source. When the Monte Carlo method is used for evaluation of corrections for septal penetration, it is important that interactions in the collimator are taken into account. A new version of the Monte Carlo program SIMIND with this capability has been evaluated by comparing measured and simulated images and energy spectra. This code was later used for the evaluation of a few different methods for correction of scatter and septal penetration of I-123 brain SPECT. The methods were CSS, TDCS and a method where correction for scatter and septal penetration are included in the iterative reconstruction. This study shows that quantitative accuracy in I-123 brain SPECT benefits from separate modelling of scatter and septal penetration.
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  • Larsson, Peter, 1963- (author)
  • Calibration of Ionization Chambers for Measuring Air Kerma Integrated over Beam Area in Diagnostic Radiology
  • 2006
  • Doctoral thesis (other academic/artistic)abstract
    • The air kerma area product PKA is an important quantity used by hospital physicists in quality assurance and optimization processes in diagnostic radiology and is recommended by national authorities for setting of diagnostic reference levels. PKA can be measured using a transmission ionization chamber (kerma area product (KAP) meter) mounted on the collimator housing. Its signal QKAP must be calibrated to give values of PKA. The objective of this thesis is to analyze the factors influencing the accuracy of the calibration coefficients k= PKA/QKAP and of reported PKA-values.Due to attenuation and scatter in the KAP-meter and presence of extra-focal radiation, values of PKA depend on the choice of integration area A and the distance of the reference plane from the focal spot yielding values of PKA that may differ by as much as 23% depending on this choice. The two extremes correspond to (1) PKA=PKA,o integrated over the exit surface of the KAP-meter resulting in geometry independent calibration coefficients and (2) PKA=PKA,Anom integrated over the nominal beam area in the patient entrance plane resulting in geometry dependent calibration coefficients.Three calibration methods are analysed. Method 1 aims at determine PKA,Anom, for clinical use at the patient entrance plane. At standard laboratories, the method is used to calibrate with respect to radiation incident on the KAP-meter. Problems with extra-focal and scattered radiation are then avoided resulting in calibration coefficients with low standard uncertainty (±1.5 %, coverage factor 2). Method 2 was designed in this work to approach determination of PKA,o using thermoluminescent detectors to monitor contributions from extra-focal radiation and account for the heel effect. The uncertainty in derived calibration coefficients was ± 3% (coverage factor 2). Method 3 uses a Master KAP-meter calibrated at a standard laboratory for incident radiation to calibrate clinical KAP-meters. It has potential to become the standard method in the future replacing the tedious method 2 for calibrations aiming at determination of PKA,o.Commercially available KAP-meters use conducting layers of indium oxide causing a strong energy dependence of their calibration coefficients. This dependence is investigated using Monte Carlo simulations and measurements. It may introduce substantial uncertainties in reported PKA– values since calibration coefficients as obtained from standard laboratories are often available only at one filtration (2.5 mm Al) as function of tube voltage or HVL. This is not sufficient since higher filtrations are commonly used in practice, including filters of Cu. In extreme cases, calibration coefficients for the same value of HVL but using different tube voltages and filtrations can deviate by as much as 30%. If standardised calibration methods are not used and choice of calibration coefficients not carefully chosen with respect to beam quality, the total uncertainty in reported PKA–values may be as large as 40-45%. Conversion of PKA-values to risk related quantities is briefly discussed. The large energy dependence of the conversion coefficients, ε/PKA, for determination of energy imparted,ε, to the patient reduces to a lower energy dependence of calibration coefficients CQ,ε = ε/QKAP for determination of ε from the KAP-meter signal.
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28.
  • Lind, Susanne, 1962-, et al. (author)
  • Quality indicators for palliative and end of life care : a review of Swedish policy documents
  • 2013
  • In: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
  • Journal article (peer-reviewed)abstract
    • 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.
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29.
  • Lind, Susanne, 1962-, et al. (author)
  • Quality indicators for palliative and end of life care : a review of Swedish policy documents
  • 2013
  • In: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
  • Journal article (peer-reviewed)abstract
    • 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.
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30.
  • Lind, Susanne, et al. (author)
  • Quality indicators for palliative and end of life care : a review of Swedish policy documents
  • 2015
  • In: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 5:4, s. 413-419
  • Journal article (peer-reviewed)abstract
    • 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.
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32.
  • Lundquist, Gunilla, et al. (author)
  • Information of imminent death or not : does it make a difference?
  • 2011
  • In: Journal of Clinical Oncology. - Orlando, FL : Grune & Stratton. - 0732-183X .- 1527-7755. ; 29:29, s. 3927-3931
  • Journal article (peer-reviewed)abstract
    • 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.
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33.
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34.
  • Lundstrom, Staffan, et al. (author)
  • Developing a national quality register in end-of-life care: The Swedish experience
  • 2012
  • In: Palliative Medicine. - : SAGE Publications (UK and US). - 0269-2163 .- 1477-030X. ; 26:4, s. 313-321
  • Journal article (peer-reviewed)abstract
    • 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. less thanbrgreater than less thanbrgreater thanAim: To establish, test and manage a national quality register for end-of-life care. less thanbrgreater than less thanbrgreater thanDesign: 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. less thanbrgreater than less thanbrgreater thanSetting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. less thanbrgreater than less thanbrgreater thanResults: 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. less thanbrgreater than less thanbrgreater thanConclusions: 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.
  •  
35.
  • Mahalingam, A. Kannan, et al. (author)
  • HIV-1 Protease Inhibitors with a Transition-State Mimic Comprising a Tertiary Alcohol : Improved Antiviral Activity in Cells
  • 2010
  • In: Journal of Medicinal Chemistry. - : American Chemical Society (ACS). - 0022-2623 .- 1520-4804. ; 53:2, s. 607-615
  • Journal article (peer-reviewed)abstract
    • By a small modification in the core structure of the previously reported series of HIV-1 protease inhibitors that encompasses a tertiary alcohol as part of the transition-state mimicking scaffold, up to 56 times more potent compounds were obtained exhibiting EC50 values down to 3 nM. Three of the inhibitors also displayed excellent activity against selected resistant isolates of HIV-1. The synthesis of 25 new and optically pure HIV-1 protease inhibitors is reported, along with methods for elongation of the inhibitor Pl' side chain using microwave-accelerated, palladium-catalyzed cross-coupling reactions, the biological evaluation, and X-ray data obtained from one of the most potent analogues cocrystallized with both the wild type and the L63P, V82T, 184 V mutant of the HIV-1 protease.
  •  
36.
  • Malm, Annika, 1970, et al. (author)
  • The association of drinking water treatment and distribution network disturbances with Health Call Centre contacts for gastrointestinal illness symptoms
  • 2013
  • In: Water Research. - : Elsevier BV. - 0043-1354 .- 1879-2448. ; 47:13, s. 4474-4484
  • Journal article (peer-reviewed)abstract
    • There are relatively few studies on the association between disturbances in drinking waterservices and symptoms of gastrointestinal (GI) illness. Health Call Centres data concerningGI illness may be a useful source of information. This study investigates if there is anincreased frequency of contacts with the Health Call Centre (HCC) concerning gastrointestinal symptoms at times when there is a risk of impaired water quality due to disturbances at water works or the distribution network. The study was conducted inGothenburg, a Swedish city with 0.5 million inhabitants with a surface water source ofdrinking water and two water works. All HCC contacts due to GI symptoms (diarrhoea,vomiting or abdominal pain) were recorded for a three-year period, including also sex, age,and geocoded location of residence. The number of contacts with the HCC in the affectedgeographical areas were recorded during eight periods of disturbances in the water works(e.g. short stops of chlorine dosing), six periods of large disturbances in the distributionnetwork (e.g. pumping station failure or pipe breaks with major consequences), and 818pipe break and leak repairs over a three-year period. For each period of disturbance theobserved number of calls was compared with the number of calls during a control periodwithout disturbances in the same geographical area. In total about 55, 000 calls to the HCCdue to GI symptoms were recorded over the three-year period, 35 per 1000 inhabitants andyear, but much higher (>200) for children
  •  
37.
  • Martinsson, Lisa, et al. (author)
  • Improved data validity in the Swedish Register of Palliative Care
  • 2017
  • In: PLOS ONE. - : Public library science. - 1932-6203. ; 12:10
  • Journal article (peer-reviewed)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.
  •  
38.
  • Martinsson, Lisa, et al. (author)
  • 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
  • In: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 6:4, s. 452-458
  • Journal article (peer-reviewed)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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39.
  • Martinsson, Lisa, et al. (author)
  • Patients' perspectives on information from physicians during palliative chemotherapy : A qualitative study
  • 2016
  • In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 14:5, s. 495-502
  • Journal article (peer-reviewed)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.
  •  
40.
  • Martinsson, Lisa, 1985- (author)
  • Quality improvement in palliative care : the role of a national quality register and perceptions of information during palliative chemotherapy
  • 2015
  • Doctoral thesis (other academic/artistic)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.
  •  
41.
  • Martinsson, Lisa, et al. (author)
  • Registration in a quality register : a method to improve end-of-lifecare—a cross-sectional study
  • 2012
  • In: BMJ Open. - : BMJ. - 2044-6055. ; 2:4
  • Journal article (peer-reviewed)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.
  •  
42.
  • Martinsson, Lisa, et al. (author)
  • Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care
  • 2011
  • In: ACTA ONCOLOGICA. - : Informa Healthcare. - 0284-186X .- 1651-226X. ; 50:5, s. 642-647
  • Journal article (peer-reviewed)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.
  •  
43.
  •  
44.
  •  
45.
  • Melin-Johansson, Christina, et al. (author)
  • Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team
  • 2010
  • In: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 19:2, s. 243-250
  • Journal article (other academic/artistic)abstract
    • The aims of this study were to describe and compare quality of life (QOL) before and after designation to a palliative homecare team (PHT) in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global QOL. We measured patients� QOL one week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (AQEL). Of 163 eligible patient 63 participated without attrition. Patients� QOL improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (p=.009), nausea (p=.008), anxiety (p=.007), getting hold of staff (p=.000), received care (p=.003) and global QOL (p=.023). Depression/low in mood (r=.55) and meaningfulness (r=.70) associated to global QOL. Furthermore, pain (p=.028) and meaningfulness (p=.028) predicted global QOL. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global QOL.
  •  
46.
  • Melin Johansson, Titti, et al. (author)
  • Caregivers' perceptions about terminally ill family members' quality of life
  • 2007
  • In: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 16:4, s. 338-345
  • Journal article (peer-reviewed)abstract
    • Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.
  •  
47.
  • Melin Johansson, Titti, et al. (author)
  • The meaning of quality of life: narrations by patients with incurable cancer in palliative home care
  • 2008
  • In: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 6:3, s. 231-238
  • Journal article (peer-reviewed)abstract
    • OBJECTIVE: The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden. METHODS: To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004-2006. Qualitative content analysis was used to interpret the meaning regarding quality of life. RESULTS: Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients' psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team. SIGNIFICANCE OF RESULTS: 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.
  •  
48.
  • Nilsson, Jonas, et al. (author)
  • Geographical Differences in Likelihood of Home Death Among Palliative Cancer Patients : A National Population-based Register Study
  • 2020
  • In: Anticancer Research. - : International Institute of Anticancer Research. - 0250-7005 .- 1791-7530. ; 40:7, s. 3897-3903
  • Journal article (peer-reviewed)abstract
    • Background/Aim: Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death.Patients and Methods: Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed.Results: Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas.Conclusion: Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.
  •  
49.
  • Nilsson, Jonas, et al. (author)
  • Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients
  • 2021
  • In: BMC Palliative Care. - : BioMed Central (BMC). - 1472-684X. ; 20
  • Journal article (peer-reviewed)abstract
    • Background: An important aspect of end-of-life care is the place of death. A majority of cancer patients prefer home death to hospital death. At the same time, the actual location of death is often against patient's last-known wish. The aim of this study was to analyze whether socioeconomic factors influence if Swedish palliative cancer patients die at home or at a hospital. There is no previous study on location of death encompassing several years in Swedish cancer patients.Methods: Data was collected from the Swedish Register of Palliative Care for patients diagnosed with brain tumor, lung, colorectal, prostate or breast cancer recorded between 2011 and 2014. The data was linked to the Swedish Cancer Register, the Cause of Death Register and the Longitudinal Integration Database for health-insurance and labor-market studies. A total of 8990 patients were included.Results: We found that marital status was the factor that seemed to affect the place of death. Lack of a partner, compared to being married, was associated with a higher likelihood of dying at a hospital.Conclusion: Our findings are in line with similar earlier studies encompassing only 1 year and based on patients in other countries. Whether inequalities at least partly explain the differences remains to be investigated. Patients dying of cancer in Sweden, who do not have a life partner, may not have the option of dying at home due to lack of informal support. Perhaps the need of extensive community support services to enable home death have to improve, and further studies are warranted to answer this question.
  •  
50.
  • Nilsson, Martin, et al. (author)
  • A study of patients not registered in the Swedish cancer register but reported to the Swedish register of palliative care 2009 as deceased due to cancer
  • 2014
  • In: Acta Oncologica. - : Informa Healthcare. - 0284-186X .- 1651-226X. ; 53:3, s. 414-419
  • Journal article (peer-reviewed)abstract
    • 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.
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