1.
Axelsson, Lena, et al.
(författare)
Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
2018
Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
Tidskriftsartikel (refereegranskat) abstract
Context. End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. Objectives. To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. Methods. This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. Results. About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. Conclusion. Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
2.
Öhlén, Joakim, 1958, et al.
(författare)
Variations in Care Quality Outcomes of Dying People : Latent Class Analysis of an Adult National Register Population
2017
Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 53:1, s. 13-24
Tidskriftsartikel (refereegranskat) abstract
Context. Symptom relief is a key goal of palliative care. There is a need to consider complexities in symptom relief patterns for groups of people to understand and evaluate symptom relief as an indicator of quality of care at end of life. Objectives. The aims of this study were to distinguish classes of patients who have different symptom relief patterns during the last week of life and to identify predictors of these classes in an adult register population. Methods. In a cross-sectional retrospective design, data were used from 87,026 decedents with expected deaths registered in the Swedish Register of Palliative Care in 2011 and 2012. Study variables were structured into patient characteristics, and processes and outcomes of quality of care. A latent class analysis was used to identify symptom relief patterns. Multivariate multinomial regression analyses were used to identify predictors of class membership. Results. Five latent classes were generated: "relieved pain,'' "relieved pain and rattles,'' "relieved pain and anxiety,'' "partly relieved shortness of breath, rattles and anxiety,'' and "partly relieved pain, anxiety and confusion.''Important predictors of class membership were age, sex, cause of death, and having someone present at death, individual prescriptions as needed (PRN) and expert consultations. Conclusion. Interindividual variability and complexity in symptom relief patterns may inform quality of care and its evaluation for dying people across care settings. (C) 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
3.
Ozanne, Anneli, 1978, et al.
(författare)
Symptom relief during last week of life in neurological diseases
2019
Ingår i: Brain and Behavior. - : Wiley. - 2162-3279. ; 9:8
Tidskriftsartikel (refereegranskat) abstract
Objectives The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND). Material & Methods Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death. Results The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions. Conclusions The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.
4.
Årestedt, Kristofer, 1968-, et al.
(författare)
Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
2018
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
Tidskriftsartikel (refereegranskat) abstract
BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
5.
Alvariza, Anette, et al.
(författare)
A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
2018
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
Tidskriftsartikel (refereegranskat) abstract
Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
6.
Öhlén, Joakim, 1958, et al.
(författare)
Determinants in the place of death for people with different cancer types: a national population-based study.
2017
Ingår i: Acta oncologica. - 0284-186X .- 1651-226X. ; 56:3, s. 455-461
Tidskriftsartikel (refereegranskat) abstract
Place of death has for the past decade increasingly come to be regarded as a robust indicator of how palliative care is organized and provided, and is also recognized as an important factor for well being at the end of life. Variations in place of cancer deaths have previously been reported in the context of country-specific healthcare organization, but without differentiating between cancer types and national regional variations. Our aim was to examine, at a population level, where people with cancer diseases die in Sweden, and to investigate associations of place of death and cancer type with individual, socioeconomic and geographical characteristics of the deceased.This population level study is based on death certificate data (sex; age; underlying cause of death and place of death) and population register data (educational attainment, marital status, living arrangements, area of residence, degree of urbanization, and healthcare region) of all 2012 cancer deaths in Sweden, with a registered place of death (hospital, nursing home, home, other places). Data were explored descriptively. To investigate associations between place of death and cancer types, and individual, socioeconomic and environmental characteristics, a series of multivariable logistic regression analyses were performed.The most frequent type of cancer death occurring at home was upper gastrointestinal cancer (25.6%) and the least frequent was hematological cancer (15.2%). Regional variations in cancer deaths occurring at home ranged from 17.1% to 28.4%. Factors associated with place of death by cancer type were age, educational attainment, marital status, healthcare regions and degree of urbanization.Large healthcare regional variations in place of death among different cancer types were found. The socioeconomic inequality previously demonstrated for screening, diagnostic and treatment processes, rehabilitation and survival thus also seems to be reflected in the place of death.
7.
Ozanne, Anneli, 1978, et al.
(författare)
Dying in Neurological Disease - Different Pattern of Needs
2019
Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-467.
Konferensbidrag (övrigt vetenskapligt/konstnärligt) abstract
Background: Many neurological diseases are progressive and cause phys- ical and psychological impairments, but motor neuron disease (MND) and tumors in the central nervous system (CNS tumor) often result in more rapid deterioration than other neurological diseases (OND). Aims: Was to compare symptom prevalence and relief, and palliative ori- ented care last week of life for patients grouped in MND, CNS tumor, and OND. Methods: A retrospective study from the Swedish Register of Palliative Care, documenting quality of care indicators during the last week of life in 2011-2012. Multivariable multinomial logistic regression was used to compare the three patient groups. Results: At the study period, 419 patients with MND, 799 patients with CNS tumor, and 1407 patients with OND were reported as underlying cause of death. Last week of life the “Frequencies of “Partial/no relief” / “symptom prevalence” (%)” in Shortness-of-breath was 150/220 (68) in MND, 54/100(54) in CNS tumor, and 177/265 (67) in OND; in the same order it was in Anxiety 94/220 (43), 87/261 (33), and 103/319 (32); in Rattles it was 141/218 (65), 227/462 (49), and 432/774 (56); in Pain it was 57/188 (30), 109/555 (20), and 144/661 (22); in Nausea it was 14/37 (38), 27/70 (39), and 29/54 (54), and in Confusion it was 23/25 (92) 171/196 (87) 148/179 (83). Patients with CNS tumor had greater odds of having totally relieved pain and rattles relative to partly/not at all relieved symptoms compared to MND and OND. Patients with MND and CNS tumor had greater odds of having end-of-life conversations, a consultation of a specialized palliative team and other external competence, and family members having an after death conversationthan in OND. Conclusions: All groups experienced symptom distress with variation in symptom relief. Patients with CNS tumor seem to receive better care than patients with MND and OND. Individual care planning is recom- mended to promote symptom relief regardless of diagnosis.
8.
Alvariza, Anette, et al.
(författare)
Carer Support Needs and Quality of Life in Palliative Care: A Methodological and Empiri-cal Study
2019
Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-148..
Konferensbidrag (övrigt vetenskapligt/konstnärligt) abstract
Background: The Carer Support Needs Assessment Tool (CSNAT) was developed to identify support needs of family carers in the context of palliative care which aims to improve quality of life, not just of patients but also their families. Aims: This study aims to 1) evaluate validity and reliability of the CSNAT in a sample of Swedish family carers and nurses in a specialised palliative care context, 2) investigate associations between carer support needs and quality of life. Methods: The study was conducted in four stages I: translation of CSNAT to Swedish; II: cognitive interviews with 8 family carers and 10 nurses; III: completion of the CSNAT, Preparedness for Caregiving Scale, Caregiver Burden Scale, Quality of Life in Life Threatening Illness- Family Carer Version by 118 family carers (spouses/partners: mean age 68 years; 69 women and 45 men). Evaluation of data quality, construct validity and test-retest reliability; IV: Investigation of associations between carer support needs and qual- ity of life using linear regression analyses. Results: CSNAT items were considered relevant and useful to identify support needs and demonstrated sound psychometric properties with satisfactory data quality and few problems with missing data. All items had satisfactory test-retest reliability. Construct validity was supported, as CSNAT items correlated with caregiver burden and preparedness. Associations were found between CSNAT items and seven different domains that represent carer quality of life; carer state, patient wellbe- ing, quality of care, outlook, environment and finances. Having more support needs was associated with poorer quality of life. Conclusion: This study adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family carers in pal- liative care. Associations between carer support needs and quality of life suggests that carers’ quality of life may be improved by acknowledging and addressing their needs for support.
9.
Anna, O'Sullivan, et al.
(författare)
Bereaved Family Members’ Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness
2019
Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-191.
Konferensbidrag (övrigt vetenskapligt/konstnärligt) abstract
Background: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking in the Swedish context. Aims: This study explored bereaved family members’ satisfaction with care in several care places, during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased persons and their family members. Methods: A retrospective cross-sectional survey design using the VOICES (SF) questionnaire, descriptive statistics and logistic regression was applied. The sample was 485 family members (age range 20-90 years, 70% women) of persons who died in hospitals in two Swedish health care regions. The deceased persons (age range 27-100) died mainly of circulatory or respiratory diseases, or malignant neoplasm. Results: Of the family members 77, 3% were satisfied with all care received during the last three months of life, when added together and rated as one. The results show variations in care satisfaction between different care places and care services; 87,2 % of the bereaved family members had a high satisfaction with care in hospices, followed by hos- pitals (85,9%), district nurses (68,9%), nursing homes (63,0%), special- ized home care (60,0%) and GPs (55,6%). Spouses were more likely to be satisfied with the care than children or other family members. Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person or the bereaved family member had a higher edu- cational attainment and a length of illness before death for one year or longer. Conclusions: The satisfaction with care is influenced by the care place/ type of care service, as well as by diagnoses, length of illness, educa- tional attainment and the relationship between the deceased person and the family member.
10.
