| 1. |
- Bergh, Ingrid, 1956, et al.
(författare)
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Pain and its relation to cognitive function and depressive symptoms: a Swedish population study of 70-year-old men and women.
- 2003
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Ingår i: Journal of pain and symptom management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 26:4, s. 903-12
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to investigate the prevalence of pain and its characteristics, and to examine the association of pain with cognitive function and depressive symptoms, in a representative sample of 70-year-old men and women. Data were collected within the gerontological and geriatric population studies in G?teborg, Sweden (H-70). A sample of 124 men and 117 women living in the community took part in the study. A questionnaire was applied which included four different aspects of pain experience: prevalence, frequency of episodes of pain, duration and number of locations. In close connection to this, depressive symptoms were assessed using the Center for Epidemiological Studies Depression Scale. The prevalence of pain during the last 14 days was higher in women (79%; n=91) than in men (53%; n=65) (P<0.001). Women (68%; n=78) also reported pain that had lasted for >6 months to a greater extent than men (38%; n=46) (P<0.001). The frequency of episodes of pain was also higher among women, 64% (n=74) reporting daily pain or pain several days during the last 14 days while 37% of the men (n=45) did so (P<0.001). Women (33%, n=38) also reported pain experience from >/=3 locations more often than men (11%; n=13) (P<0.001). On the other hand, the association between depressive symptoms and pain experience was more evident in men than in women. Women were taking significantly more antidepressants compared to men (P<0.03). The results show that pain is common in 70-year-old people and especially in women. However, associations between depressive symptoms and the four aspects of pain experience were more pronounced among men.
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| 2. |
- Börjeson, Sussanne, et al.
(författare)
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Treatment of nausea and emesis during cancer chemotherapy : Discrepancies between antiemetic effect and well-being
- 2002
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Ingår i: Journal of Pain and Symptom Management. - 0885-3924 .- 1873-6513. ; 24:3, s. 345-358
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study was to describe the relationship between antiemetic effect and well-being in patients receiving four different antiemetic treatment strategies, representing developments in the field during the past 15 years. A total of 162 women with ovarian cancer receiving cisplatin-based chemotherapy and participating in two comparative antiemetic trials were enrolled and studied for up to four cycles. In study I, a combined antiemetic strategy including a nursing intervention program (increased access to support and increased information) and antiemetics based on high-dose metoclopramide and dexamethasone was compared with the standard antiemetic treatment during the 1980s. In study II, ondansetron plus dexamethasone/placebo was evaluated. The assessment methods used were similar for all patients. Questionnaires were used to assess frequency, intensity, and duration of nausea, emesis, anxiety, pain, and well-being at baseline, and for acute (24 hours after chemotherapy) and delayed (up to 2 weeks after chemotherapy) symptoms. The mean intensity of acute nausea during the first cycle was higher in the groups in study I, as compared to the groups in study II. The group receiving a nursing intervention reported better well-being than the other groups. Duration of nausea was an important predictor of well-being, even when nausea intensity was controlled. Apart from nausea intensity, nausea duration and nursing interventions may be important determinants for well-being during chemotherapy. © U.S. Cancer Pain Relief Committee, 2002.
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| 3. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Characteristics and Quality of Life of Patients Who Choose Home Care at the End of Life
- 2008
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier Inc.. - 0885-3924 .- 1873-6513. ; 36:3, s. 217-227
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Tidskriftsartikel (refereegranskat)abstract
- Cancer patients with advanced disease and short-survival expectancy were given hospitalbased advanced home care (AHC) or conventional care (CC), according to their preference. The two groups were compared at baseline to investigate whether there were differences between the AHC and the CC patients that may help explain their choice of care. The patients were consecutively recruited over 2½ years. Sociodemographic and medical data, and the health-related quality of life (HRQL) of the two groups were compared. HRQL was assessed using a self-reporting questionnaire, including the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQC30), the Impact of Event Scale (IES), five questions about social support, and two items concerning general well-being. The AHC group showed significantly poorer functioning on all the EORTC QLQ-C30 scales and an overall higher symptom burden than the CC patients. Fewer of the AHC patients were receiving cancer treatment. The AHC patients had lived longer with their cancer diagnosis, had a significantly shorter survival after study enrollment, and a significantly poorer performance status. The major differences between the two groups seemed to be related to being at different stages in their disease. The results indicate that patients are reluctant to accept home care until absolutely necessary due to severity of functioning impairments and symptom burden. These findings should be taken into consideration in planning palliative care services. J Pain Symptom Manage 2008;36:217e227. 2008 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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| 4. |
- Andersson, Sofia, 1972-, et al.
(författare)
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Factors Associated With Symptom Relief in End-of-Life Care in Residential Care Homes: A National Register-Based Study
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 55:5, s. 1304-1312
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Tidskriftsartikel (refereegranskat)abstract
- Context. Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.& para;& para;Objectives. The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care.& para;& para;Methods. The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N 22,855). Univariate and multiple logistic regression analyses were conducted.& para;& para;Results. Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety.& para;& para;Conclusion. Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 5. |
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| 6. |
- Axelsson, Lena, et al.
(författare)
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Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease : A National Registry Study About the Last Week of Life
- 2018
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 55:2, s. 236-244
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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.
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| 7. |
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| 8. |
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| 9. |
- Buiting, Hilde M., et al.
(författare)
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Forgoing artificial nutrition or hydration in patients nearing death in six European countries
- 2007
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 34:3, s. 305-314
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Tidskriftsartikel (refereegranskat)abstract
- Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the Practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shorlening drugs to relieve symptoms than other Patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.
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| 10. |
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| 11. |
- Dussel, Veronica, et al.
(författare)
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Looking beyond where children die : Determinants and effects of planning a child's location of death.
- 2009
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 37:1, s. 33-43
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Tidskriftsartikel (refereegranskat)abstract
- While dying at home may be the choice of many, where people die may be less important than argued. We examined factors associated with parental planning of a child's location of death (LOD) and its effects on patterns of care and parent's experience. In a cross-sectional study of 140 parents who lost a child to cancer at one of two tertiary-level U.S. pediatric hospitals, 88 (63%) planned the child's LOD and 97% accomplished their plan. After adjusting for disease and family characteristics, families whose primary oncologist clearly explained treatment options during the child's end of life and who had home care involved were more likely to plan LOD. Planning LOD was associated with more home deaths (72% vs. 8% among those who did not plan, P<0.001) and fewer hospital admissions (54% vs. 98%, P<0.001). Parents who planned were more likely to feel very prepared for the child's end of life (33% vs. 12%, P=0.007) and very comfortable with LOD (84% vs. 40%, P<0.001), and less likely to have preferred a different LOD (2% vs. 46%, P<0.001). Among the 73 nonhome deaths, planning was associated with more deaths occurring in the ward than in the intensive care unit or other hospital (92% vs. 33%, P<0.001), and fewer children being intubated (21% vs. 48%, P=0.029). Comprehensive physician communication and home care involvement increase the likelihood of planning a child's LOD. Opportunity to plan LOD is associated with outcomes consistent with high-quality palliative care, even among nonhome deaths, and thus may represent a more relevant outcome than actual LOD.
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| 12. |
- Ekstedt, Mirjam, et al.
(författare)
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Factors That Hinder and Facilitate Cancer Patients' Knowledge About Pain Management-A Qualitative Study
- 2019
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 57:4, s. 753-760
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Tidskriftsartikel (refereegranskat)abstract
- Context. Pain management education may improve pain control for some patients, whereas individual differences exist. Objectives. To evaluate possible critical components, facilitators, and hindrances for improved knowledge about pain management, in not hospitalized adult oncology patients with pain from bone metastasis participating in a pain management intervention. Methods. This substudy is a qualitative evaluation of the PRO-SELF Pain Control Program, tested in a randomized controlled trial. During six weeks, 87 participants in the intervention group received tailored coaching encounters by a trained oncology nurse. Three encounters for each patient were audio recorded. The encounter between patient's with the largest (n = 12) and lowest (n = 8) change in knowledge about pain management from before to after the intervention was transcribed verbatim and analyzed with qualitative content analysis. Results. The critical components of the intervention were repetition of information, struggling with resistance, use of peer experiences, and keeping track of variations. Facilitators of improvement were patients' trust and preparedness to try new procedures, the patient's self-awareness and body awareness, and taking active role in own care. Difficulties in processing complex information, culturally conditioned behaviors, fear, and lack of knowledge were the most important barriers to the success of the intervention. Conclusion. Education in pain management in cancer patients requires repeated information, allowing time for overcoming resistance related to dysfunctional beliefs and fear. To facilitate the patient's involvement in their pain management, tailored and person-centered education is needed. (C) 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 13. |
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| 14. |
- Ekström, Magnus P., et al.
(författare)
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Minimal Clinically Important Differences and Feasibility of Dyspnea-12 and the Multidimensional Dyspnea Profile in Cardiorespiratory Disease
- 2020
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 60:5, s. 968-975
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Tidskriftsartikel (refereegranskat)abstract
- Context: Breathlessness is a cardinal symptom in cardiorespiratory disease and consists of multiple dimensions that can be measured using the instruments Dyspnea-12 (D12) and the Multidimensional Dyspnea Profile (MDP). Objectives: The objective of the study is to determine the minimal clinically important differences (MCIDs) of all D12 and MDP summary and subdomain scores as well as the instruments' feasibility in patients with cardiorespiratory disease. Methods: Prospective multicenter cohort study of outpatients with diagnosed cardiorespiratory disease and breathlessness in daily life. D12 and MDP were assessed at baseline, after 30-90 minutes and two weeks. MCIDs were calculated using anchor-based and distributional methods for summary and subdomain scores. Feasibility was assessed as rate of missing data, help required, self-reported difficulty, and completion time. Results: A total 182 outpatients (53.3% women) were included; main diagnoses were chronic obstructive pulmonary disease (COPD; 25%), asthma (21%), heart failure (19%), and idiopathic pulmonary fibrosis (19%). Anchor-based MCIDs were for D12 total score 2.83 (95% CI 1.99-3.66); D12 physical 1.81 (1.29-2.34); D12 affective 1.07 (0.64-1.49); MDP A1 unpleasantness 0.82 (0.56-1.08); MDP perception 4.63 (3.21-6.05), and MDP emotional score 2.37 (1.10-3.64). The estimates were consistent with small-to-moderate effect sizes using distributional analysis, and MCIDs were similar between COPD and non-COPD patients. The instruments were generally feasible and quick to use. Conclusion: D12 and MDP are responsive to change and feasible for use for assessing multidimensional breathlessness in outpatients with cardiorespiratory disease. MCIDs were determined for use as endpoints in clinical trials.
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| 15. |
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| 16. |
- Hagell, Peter, 1966-, et al.
(författare)
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Assessment of burden among family caregivers of people with Parkinson’s disease using the Zarit Burden Interview
- 2017
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Ingår i: Journal of Pain and Symptom Management. - 0885-3924 .- 1873-6513. ; 53:2, s. 272-278
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Tidskriftsartikel (refereegranskat)abstract
- Context: Previous studies have supported the psychometric properties of the 22-item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson´s disease (PD). However, its short-forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.Objectives: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.Methods: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age, 69.6 years) of a local Swedish PD society branch were analysed according to classical test theory methods based on polychoric/polyserial correlations. Results: Missing item responses were ≤5%. Corrected item-total correlations were ≥0.42 and floor-/ceiling effects were <20%, besides for the briefest (4- and 1-item) short-forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha, 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short-forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (AUC, 0.91-0.98) relative to the full ZBI-22.Conclusion: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or -12 is suggested for use; other short-forms can be used when caregiver burden is of less central focus or for clinical screening.
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| 17. |
- Hagell, Peter, et al.
(författare)
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Assessment of Burden Among Family Caregivers of People With Parkinson's Disease Using the Zarit Burden Interview
- 2017
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 53:2, s. 272-278
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Previous studies have supported the psychometric properties of the 22-Item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson's disease (PD). However, its short forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.OBJECTIVES: To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.METHODS: Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age 69.6 years) of a local Swedish PD society branch were analyzed according to classical test theory methods based on polychoric/polyserial correlations.RESULTS: Missing item responses were ≤ 5%. Corrected item-total correlations were ≥ 0.42 and floor/ceiling effects were <20%, besides for the briefest (4- and 1-item) short forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (area under the curve, 0.91-0.98) relative to the full ZBI-22.CONCLUSION: This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or ZBI-12 is suggested for use; other short forms can be used when caregiver burden is of less central focus or for clinical screening.
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| 18. |
- Hagell, Peter, et al.
(författare)
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Measuring fatigue in Parkinson's disease : a psychometric study of two brief generic fatigue questionnaires.
- 2006
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 32:5, s. 420-32
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Tidskriftsartikel (refereegranskat)abstract
- This study evaluated and compared the measurement properties of the 13-item Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and the 9-item Fatigue Severity Scale (FSS) in 118 consecutive Parkinson's disease (PD) patients, using traditional and Rasch measurement methodologies. Both questionnaires exhibited excellent data quality and reliability (coefficient alpha>or=0.9), and acceptable rating scale functionality, and both discriminated between fatigued and nonfatigued patients. Factor and Rasch analyses provided general support for unidimensionality of both FACIT-F and FSS, although they do not appear to measure identical aspects of fatigue. No signs of differential item functioning (DIF) were found for the FACIT-F, whereas potential age DIF was detected for two FSS items. These results support the measurement validity of both questionnaires in PD, although the FACIT-F displayed better measurement precision and modest psychometric advantages over the FSS. Availability of psychometrically sound fatigue measures that are applicable across disorders provides a sound basis for advancing the understanding of this common and distressing complaint.
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| 19. |
- Hagell, Peter, et al.
(författare)
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Measuring fatigue in Parkinsons disease: A psychometric study of two brief generic fatigue questionnaires
- 2006
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 32:5, s. 420-432
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Tidskriftsartikel (refereegranskat)abstract
- This study evaluated and compared the measurement properties of the 13-item Functional Assessment of Chronic Illness Therapy-Fatigue Scale (FACIT-F) and the 9-item Fatigue Severity Scale (FSS) in 118 consecutive Parkinsons disease (PD) patients, using traditional and Rasch measurement methodologies. Both questionnaires exhibited excellent data quality and reliability (coefficient alpha greater than= 0.9), and acceptable rating scale functionality, and both discriminated between fatigued and nonfatigued patients. factor and Rasch analyses provided general support for unidimensionality of both FACIT-F and FSS, although they do not appear to measure identical aspects of fatigue. No signs of differential item functioning (DIF) were found for the FACIT-F, whereas potential age DIF, was detected for two FSS items. These results support the measurement validity of both questionnaires in PD, although the FACIT-F displayed better measurement precision and modest psychometric advantages over the FSS. Availability of psychometrically sound fatigue measures that are applicable across disorders provides a sound basis for advancing the understanding of this common and distressing complaint.
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| 20. |
- Hallén, Katarina, et al.
(författare)
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Transcutaneous electrical nerve stimulation induces vasodilation in healthy controls but not in refractory angina patients.
- 2010
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Ingår i: Journal of pain and symptom management. - : Elsevier BV. - 1873-6513 .- 0885-3924. ; 40:1, s. 95-101
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Transcutaneous electrical nerve stimulation (TENS) is an effective treatment option to relieve ischemic pain in refractory angina pectoris (RAP). In healthy persons, TENS enhances local blood flow, but the mechanism responsible for the anti-ischemic effect in RAP seems to be different. OBJECTIVE: The aim of the present investigation was to compare the difference in blood flow and vasodilatory response to TENS between angina patients and healthy controls and evaluate how vascular response in these groups is affected by amperage dosage above and below motor threshold levels. METHODS: Our study evaluated upper limb vascular responses to low- and high-dose TENS (below and above motor threshold) in RAP patients compared with healthy controls. TENS was applied on the nondominating forearm. Forearm blood flow (FBF) was measured by venous occlusion plethysmography. Forearm vascular resistance (FVR) was determined (mean arterial pressure [MAP]/FBF). Measurements were done during baseline, low-dose TENS, high-dose TENS, and during recovery. RESULTS: A significant dose-dependent increase in FBF in response to TENS stimulation was seen in controls (n=18) but not in RAP (n=23) (P=0.008). There was no significant difference in FVR ratio (FVR(stim)/FVR(ctrl)) between control (n=7) and RAP (n=23) groups at low dose (controls, 5.7+/-21%; RAP, 9.7+/-20%) or recovery (controls, -4.6+19%; RAP, 5.9+25%). High-dose TENS resulted in a significantly reduced FVR ratio (-16.8+/-11%) in controls (n=7) compared with RAP (1.6+/-32%, n=23) (P=0.02). CONCLUSION: High-dose TENS induces forearm vasodilation in healthy subjects but not in patients with RAP. These findings suggest that TENS has different vascular effects in patients with severe coronary artery disease compared with healthy controls.
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| 21. |
- Hedén, Lena, et al.
(författare)
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Parents' perceptions of their child's symptom burden during and after cancer treatment.
- 2013
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 46:3
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Previously reported studies of children with cancer mostly provide cross-sectional knowledge of the prevalence of symptoms but do not show when during the disease trajectory and after the end of successful treatment certain symptoms are most prevalent and/or distressing.OBJECTIVES: The aim was to describe parents' perceptions of their child's symptom burden longitudinally during and after cancer treatment and to investigate whether parents' perceptions vary with child characteristics and parent gender.METHODS: One hundred sixty parents (49% fathers) of 89 children answered a modified version of the Memorial Symptom Assessment Scale (MSAS) 10-18 at six different time points from one week after the child's diagnosis (T1) to 12-18 months after the end of successful treatment (T6).RESULTS: Feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms. During treatment, the most prevalent symptom is less hair than usual. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout the treatment. The child's symptom burden decreases over time. There is no difference regarding the reported symptom burden between the parents of a daughter or a son, or parents of a child older or younger than seven years of age. Mothers' and fathers' assessments of the symptom number, total MSAS and the subscales, are associated, but mothers' assessments are often higher than fathers' assessments.CONCLUSION: The prevalence and distress of symptoms and symptom burden decrease over time. However, even though the cancer is cured, feeling sad is reported as being prevalent and psychological distress is an issue. A dialogue between staff and the family about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during the disease trajectory.
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| 22. |
- Henoch, Ingela, 1956, et al.
(författare)
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The impact of symptoms, coping capacity, and social support on quality of life experience over time in patients with lung cancer.
- 2007
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Ingår i: Journal of pain and symptom management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 34:4, s. 370-9
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Tidskriftsartikel (refereegranskat)abstract
- The aims of the study were to investigate lung cancer patients' quality of life (QoL) over time in a palliative setting and to determine how QoL is influenced by symptoms, coping capacity, and social support. One hundred and five consecutive patients with incurable lung cancer were included. A comprehensive set of questionnaires was used at baseline, including the Assessment of Quality of Life at the End of Life, Cancer Dyspnea Scale, Visual Analog Scale of Dyspnea, Hospital Anxiety and Depression scale, Sense of Coherence Questionnaire, and Social Support Survey, of which the first four were used also at three, six, nine, and 12 months. Dyspnea, depression, and global QoL deteriorated over time. Performance status, anxiety, depression, components of dyspnea, pain, and the meaningfulness component of coping capacity correlated with global QoL at all, or all but one follow-up measurements. In a multivariate analysis with global QoL as the dependent variable, depression was a significant predictor at four out of five assessments, whereas coping capacity, anxiety, performance status, pain, and social support entered the model at one or two assessments. Emotional distress and coping capacity influence QoL and might be targets for intervention in palliative care.
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| 23. |
- Henoch, Ingela, 1956, et al.
(författare)
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Training Intervention for Health Care Staff in the Provision of Existential Support to Patients With Cancer : A Randomized, Controlled Study
- 2013
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 46:6, s. 785-794
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Tidskriftsartikel (refereegranskat)abstract
- Context: When a patient receives a cancer diagnosis, existential issues become more compelling. Throughout the illness trajectory, patients with cancer are cared for in oncology wards, by home care teams or in hospices. Nurses working with these patients are sometimes aware of the patients' existential needs but do not feel confident when discussing these issues.Objectives: To determine the effects of a training intervention, where the focus is on existential issues and nurses' perceived confidence in communication and their attitude toward caring for dying patients.Methods: This was a randomized, controlled trial with a training intervention comprising theoretical training in existential issues combined with individual and group reflection. In total, 102 nurses in oncology and hospice wards and in palliative home care teams were randomized to a training or non-training group. Primary outcomes, confidence in communication, and attitude toward the care of dying patients were measured at baseline, immediately after the training, and five to six months later.Results: Confidence in communication improved significantly in the training group from baseline (before the training) to both the first and second follow-up, that is, immediately after the training and five months later. The attitude toward caring for the dying did not improve in the training group.Conclusion: This study shows that short-term training with reflection improves the confidence of health care staff when communicating, which is important for health care managers with limited resources. Further studies are needed to explore how patients experience the communication skills of health care staff after such training.
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| 24. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Use of the Preparedness for Caregiving Scale in Palliative Care : A Rasch Evaluation Study
- 2015
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 50:4, s. 533-541
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Tidskriftsartikel (refereegranskat)abstract
- Context. Studies have shown that family carers who feel more prepared for the caregiver role tend to have more favorable experiences. Valid and reliable methods are needed to identify family carers who may be less prepared for the role of supporting a person who needs palliative care. Objectives. The aim of this study was to evaluate the measurement properties of the original English version and a Swedish version of the Preparedness for Caregiving Scale (PCS). Methods. The sample (n = 674) was taken from four different intervention studies from Australia and Sweden, all focused on improving family carers' feelings of preparedness. Family carers of patients receiving palliative home care were selected, and baseline data were used. The measurement properties of the PCS were evaluated using the Rasch model. Results. Both the English and Swedish versions of the PCS exhibit sound measurement properties according to the Rasch model. The items in the PCS captured different levels of preparedness. The response categories were appropriate and corresponded to the level of preparedness. No significant differential item functioning for age and sex was detected. Three items demonstrated differential item functioning by language but did not impact interpretation of scores. Reliability was high (>0.90) according to the Person Separation Index. Conclusion. The PCS is valid for use among family carers in palliative care. Data provide support for its use across age and gender groups as well as across the two language versions. (C) 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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| 25. |
- Holmfred, Anette, et al.
(författare)
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Intrathecal catheters with subcutaneous port systems in patients with severe cancer-related pain managed out of hospital : the risk of infection
- 2006
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 31:6, s. 568-572
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Tidskriftsartikel (refereegranskat)abstract
- Intrathecal catheters have been used for many years to treat severe pain resistant to conventional treatment modalities. Previous studies have found a rate of serious infection of 2%-3% using these catheters in home situations. However, many authors used prophylactic antibiotics routinely in this group of patients, which are both costly and associated with a risk of developing antibiotic resistance. We were interested in studying whether improved hygiene during insertion and care of these catheters in the hospice or home environment would reduce the incidence of catheter-related infections. The results show that prophylactic antibiotic is not necessary, but a careful handling of the system with aseptic technique is important. The infections we registered appeared more than 2 weeks after insertion of the catheters. We now use this method routinely when inserting an intrathecal catheter with a subcutaneous port.
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| 26. |
- Kenne Sarenmalm, Elisabeth, 1956, et al.
(författare)
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Coping with recurrent breast cancer: predictors of distressing symptoms and health-related quality of life.
- 2007
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Ingår i: Journal of pain and symptom management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 34:1, s. 24-39
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Tidskriftsartikel (refereegranskat)abstract
- Little is known about how postmenopausal women with recurrent breast cancer cope with distressing symptoms and which factors predict health-related quality of life (HRQOL). In the present study, 56 consecutively enrolled patients completed questionnaires measuring symptom occurrence, coping capacity, coping efforts, and HRQOL at the time of recurrence. Results from this study illustrate that women with recurrent breast cancer suffer from multiple, concurrent, and interrelated symptoms of illness, anxiety, depression, and fatigue. Highly prevalent symptoms are lack of energy, difficulty sleeping, pain, worrying, problems with sexual interest, feeling sad, and dry mouth. The most frequently occurring symptom is problem with sexual interest, and the most severe symptom is worrying. The most distressing symptom experienced is pain. The majority of the women report 10-23 symptoms. Women who experience multiple symptoms also report higher levels of symptom distress. The experience of distressing symptoms is predicted by coping capacity, and the coping efforts experienced predict HRQOL. Patients with lower coping capacity report higher prevalence of symptoms, experience higher levels of distress, and experience worse perceived health, which in turn may decrease their HRQOL. To help women manage recurrent breast cancer, it is important to use multidimensional measurement to identify, evaluate, and treat distressing symptoms, and not assess single symptoms only. Care must be based upon the awareness of critical factors that exacerbate vulnerability to distress, as well as the ability to adapt to a recurrent breast cancer disease.
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| 27. |
- Kenne Sarenmalm, Elisabeth, et al.
(författare)
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Symptom Burden Clusters : A Challenge for Targeted Symptom Management. A Longitudinal Study Examining Symptom Burden Clusters in Breast Cancer
- 2014
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 47:4, s. 731-741
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Tidskriftsartikel (refereegranskat)abstract
- Context: Although there has been a growing interest in cancer symptom clusters, less is known about symptom burden clusters.Objectives: To explore clusters of burdensome symptoms over time, the impact on health status and quality of life, and coping capacity in patients with breast cancer.Methods: In this longitudinal study, a sample of 206 patients completed the Memorial Symptom Assessment Scale, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and the Sense of Coherence scale, at diagnosis of primary or recurrent breast cancer, and at one-, three-, and six-month follow-ups.Results: Three clusters of burdensome symptoms were identified: emotional symptom burden, gastrointestinal symptom burden, and unwellness symptom burden. Most burdensome were emotional symptoms, with worrying, feeling sad, and feeling nervous as the core or defining symptoms. Over time, additional symptoms escalated the emotional symptom burden. The gastrointestinal symptom burden, with "change in the way food tastes" as a core symptom, was more often associated with chemotherapy. Less stable over time, the unwellness symptom burden could be interpreted as short- and long-term side effects of hormonal therapy. Of these clusters, only the emotional symptom burden cluster significantly diminished health status and quality of life. Patients reporting lower coping capacity experienced higher levels of symptom burden.Conclusion: This study provides insights into symptom burden clusters over time. A challenging approach toward symptom management in clinical oncology is to target the burden of a symptom cluster and to recognize the need for individually designed interventions to ameliorate symptom burden in cancer patients.
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| 28. |
- Kjellgren, Helena, et al.
(författare)
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Exploring Objects at the End of Life
- 2016
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 52:6, s. E37-E37
-
Tidskriftsartikel (refereegranskat)abstract
- Objectives: While there has been an increasing recognition that the physical setting matters in end-of-life (EoL) care, objects (e.g. beds, socks, hearing aids) are notably overlooked and it is unknown how they add meaning to care settings, particularly beyond usability and functionality. In our study, we set out to explore the EoL setting from the perspective of family members. Through a preliminary analysis we noted that objects were mentioned throughout the narratives and therefore we focused our analysis on exploring the roles of objects. Methods: We interviewed 25 family members, recruited from residential care facilities, as well as palliative in-patient and homecare units, who had witnessed the dying and death of someone close to them. The interviews were prompted by open inquiries about EoL experiences, rather than specific questions about settings. The narratives were transcribed verbatim and analyzed using thematic analysis. Results: Objects were conceptualized as having interconnected roles relating to temporality, the everyday, and care. Many talked about rearranging objects to mark beginnings and ends in moments of transitions and thus rendering temporality tangible. Simultaneously, objects had roles in transforming everyday life and were assigned new meanings through the contexts they were part of. Objects were also interpreted as signs of care, where lack of sensitivity towards surrounding objects was associated with poor care. Conclusions: Our results indicate that objects are dynamic, in that interaction with objects and the meaning of these interactions change throughout the dying process. This contrasts with other studies, which have tended to approach the EoL settings as discrete with predefined properties, reinforcing instrumental and unidirectional understandings of relationships between people and settings. Our study expands on knowledge of objects in EoL processes and we argue the potential of this knowledge as a means to enhance supportive EoL settings.
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| 29. |
- Klint, Åsa, et al.
(författare)
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Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough
- 2019
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 1873-6513 .- 0885-3924. ; 58:5, s. 1-791
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Fear of pain resonates with most people, in particular, in relation to dying. Despite this, there are still people dying with unrelieved pain.OBJECTIVES: We quantified the risk, and investigated risk factors, for dying with unrelieved pain in a nationwide observational cohort study.METHODS: Using data from Swedish Register of Palliative Care, we analyzed 161,762 expected deaths during 2011-2015. The investigated risk factors included cause of death, place of death, absence of an end-of-life (EoL) conversation, and lack of contact with pain management expertise. Modified Poisson regression models were fitted to estimate risk ratios (RRs) and 95% confidence intervals (CIs) for dying with unrelieved pain.RESULTS: Unrelieved pain during the final week of life was reported for 25% of the patients with pain, despite prescription of opioids PRN in 97% of cases. Unrelieved pain was common both among patients dying of cancer and of nonmalignant chronic diseases. Statistically significant risk factors for unrelieved pain included hospital death (RR = 1.84, 95% CI 1.79-1.88) compared with dying in specialist palliative care, absence of an EoL conversation (RR = 1.42, 95% CI 1.38-1.45), and dying of cancer in the bones (RR = 1.13, 95% CI 1.08-1.18) or lung (RR = 1.10, 95% CI 1.06-1.13) compared with nonmalignant causes.CONCLUSION: Despite almost complete prescription of opioids PRN for patients with pain, patients die with unrelieved pain. Health care providers, hospitals in particular, need to focus more on pain in dying patients. An EoL conversation is one achievable intervention.
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| 30. |
- Kotronoulas, Grigorios, et al.
(författare)
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Sleep and sleep-wake disturbances in care recipient-caregiver dyads in the context of a chronic illness : a critical review of the literature
- 2013
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 45:3, s. 579-594
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Forskningsöversikt (refereegranskat)abstract
- Context. Alterations in sleep-wake patterns of care recipients and their informal caregivers are common in the context of a chronic illness. Given the current notion that sleep may be regulated within and affected by close human relationships, concurrent and interrelated sleep problems may be present in care recipient-caregiver dyads. Objectives. To critically analyze evidence regarding concurrent sleep patterns or changes in care recipient-caregiver dyads in the context of a chronic illness and address methodological and research gaps. Methods. Using a wide range of key terms and synonyms, three electronic databases (Medline, CINAHL, and Embase) were systematically searched for the period between January 1990 and July 2011. Results. Ten studies met prespecified selection criteria and were included for analysis. Study quality was fair to good on average. Seven studies were conducted in the context of dementia or Parkinson's disease, two in the context of cancer, and one study included a group of community elders with mixed related comorbidities and their informal caregivers. Bidirectional associations in the sleep of care recipient-caregiver dyads seem to exist. Concurrent and comparable nocturnal sleep disruptions also may be evident. Yet, inconsistencies in the methods implemented, and the samples included, as well as uncertainty regarding factors coaffecting sleep, still preclude safe conclusions to be drawn on. Conclusion. The dyadic investigation of sleep is a promising approach to the development of truly effective interventions to improve sleep quality of care recipients and their caregivers. Nevertheless, more systematic, longitudinal dyadic research is warranted to augment our understanding of co-occurrence and over time changes of sleep problems in care recipient-caregiver dyads, as well as to clarify covariates/factors that appear to contribute to these problems within the dyad and across time and context of illness. J Pain Symptom Manage 2013;45:579-594. (C) 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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| 31. |
- Krevers, Barbro, 1955-, et al.
(författare)
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The sense of security in care-relatives' evaluation instrument : its development and presentation.
- 2015
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 49:3, s. 586-94
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Relatives' sense of security in their family members' palliative home care is important, and a valid and reliable instrument is needed to measure this.OBJECTIVES: The aim of this article is to report the development, structure, and psychometric properties of a new instrument, the Sense of Security in Care-Relatives' Evaluation (SEC-R), in palliative home care.METHODS: Instrument development was based on a previous study and review of the literature; 213 relatives (55% women) of patients in palliative home care were recruited (response rate 73%) and participated in a structured interview based on a questionnaire. Principal component analysis (PCA) was used to identify subscales. The construction was tested in correlation with other scales and questions representing concepts expected to be related to sense of security in care.RESULTS: The PCA resulted in three subscales, namely care interaction, mastery and patient situation, which had an explained variance of 53%. Internal consistency of the subscales ranged from 0.76 to 0.78. The final instrument comprises 17 items. The scales were associated with the quality-of-care process and the relatives' situation, perceived health, quality of life, stress, general sense of security, and general sense of security in care.CONCLUSION: The SEC-R provides a three-component assessment of palliative home care settings using valid and reliable scales associated with other concepts. The SEC-R is a manageable means of assessment that may contribute to quality-of-care measures and to further research on relatives' sense of security in care.
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| 32. |
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| 33. |
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| 34. |
- Lindqvist, Olav, et al.
(författare)
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Time and Bodily Changes in Advanced Prostate Cancer : Talk About Time As Death Approaches
- 2008
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 36:6, s. 648-656
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Tidskriftsartikel (refereegranskat)abstract
- The disease trajectory of living with incurable cancer is characterized by, increasing bodily deterioration and problems. In this paper, we have focused on the change in temporal awareness as manifested in the narrations of two men with hormone refractory prostate cancer and, skeletal metastases as they approach death. The two men participated in in-depth research interviews during the last part of their lives, sharing a similar disease trajectory with increaseing bodily change and decreasing physical function. Both died a lingering cancer,related death. The first and last research interviews were analyzed using a discourse analytic method. Findings show that the temporal awareness in the interviews changes as the illness progresses and death approaches. In the last interviews, the present is flooded with bodily problems; the past and the future are hardly present except for the future beyond the mens own deaths. Pain.,fatigue, nausea, and other symptoms figure largely in this change, and there is no time for much more than attending to bodily needs in a present that is dominated by problems. Here, the importance of alleviating bodily problems once again becames paramount, and two questions are raised: Is the often reported withdrawal from life, when death is imminent, a physical necessity rather than a psychological one, and is it possible to free time from, the time-consuming problems of the present by means of a more concentrated attempt, to alleviate these problems?
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| 35. |
- Lundström, S, et al.
(författare)
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Propofol
- 2010
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Ingår i: Journal of pain and symptom management. - : Elsevier BV. - 1873-6513 .- 0885-3924. ; 40:3, s. 466-70
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Tidskriftsartikel (refereegranskat)
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| 36. |
- 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
-
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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| 37. |
- 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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| 38. |
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| 39. |
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| 40. |
- Milberg, Anna, et al.
(författare)
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Patients Sense of Security During Palliative Care-What Are the Influencing Factors?
- 2014
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 48:1, s. 45-55
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT:Having a sense of security is vitally important to patients who have a limited life expectancy.OBJECTIVES:We sought to identify the factors associated with patients' sense of security during the palliative care period.METHODS:We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link).RESULTS:Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model.CONCLUSION:These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.
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| 41. |
- Molassiotis, Alex, et al.
(författare)
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Symptom cluster patterns during the first year after diagnosis with cancer
- 2010
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 39:5, s. 847-858
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Tidskriftsartikel (refereegranskat)abstract
- Context. Research about clusters of symptoms in oncology is an emerging field of study. However, there is still conceptual confusion about clusters of symptoms and little agreement across studies. Objectives. The aim of the present study was to explore clusters of symptoms over time in a large heterogeneous group of patients with cancer and thereby contribute to the conceptual and methodological debate in this research area. Methods. A longitudinal design was used to assess symptoms in cancer patients over four time points during the first year after diagnosis using the Memorial Symptom Assessment Scale. The study recruited 143 patients from five U.K. cancer centers and provided 504 symptom assessments at the beginning of treatment and 3, 6, and 12 months later. Results. Six symptom clusters were identified at the first assessment, which were maintained across the assessment points with slight variations. These included gastrointestinal, hand/foot, body image, respiratory, nutritional, and emotional symptom clusters. The behavior of the clusters over time highlighted the complexities of symptom cluster assessment and the dynamic relationships between symptoms. Frequency, severity, and distress from symptoms were significantly higher (up to 75% higher) in patients who experienced a cluster of symptoms than in the overall sample, suggesting that symptom assessments in unselected patients underestimate the symptom burden in subgroups of patients. Conclusion. We propose attention to symptom clusters that are stable across time and include core or defining symptoms within the cluster, and we further discuss the usefulness and applicability of conceptual and methodological criteria used in this study for future symptom cluster research. J Pain Symptom Manage 2010;39:847-858. (C) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
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| 42. |
- Nilsson, Maria, et al.
(författare)
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Fatigue in Parkinson’s disease : measurement properties of a generic and a condition-specific rating scale
- 2013
-
Ingår i: Journal of Pain and Symptom Management. - 0885-3924 .- 1873-6513. ; 46:5, s. 737-746
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Tidskriftsartikel (refereegranskat)abstract
- Context: High quality fatigue rating scales are needed to advance understanding of fatigue nd determine the efficacy of interventions. Several fatigue scales are used in Parkinson’s isease, but few have been tested using modern psychometric methodology (Rasch analysis).Objectives: To examine the measuring properties of the generic Functional Assessment of hronic Illness Therapy - Fatigue (FACIT-F) scale and the condition-specific 16-item arkinson Fatigue Scale (PFS-16) using Rasch analysis.Methods: Postal survey data (n=150; 47% women; mean age, 70) were Rasch analyzed. FS-16 scores were tested according both to the original polytomous and the suggested lternative dichotomized scoring methods.Results: The PFS-16 showed overall Rasch model fit whereas the FACIT-F showed signs of isfit, which probably was due to a sleepiness-related item and mixing of ositively/negatively worded items. There was no differential tem functioning by disease uration but by fatigue status (greater likelihood of needing to sleep or rest during the day mong people classified as non-fatigued) in the PFS-16 and FACIT-F. However, this did not mpact total score based estimated person measures. Targeting and reliability (≥0.86) was ood, but the dichotomized PFS-16 showed compromised measurement precision. olytomous and dichotomized PFS-16 and FACIT-F scores identified 6, 3 and 4 statistically istinct sample strata, respectively.Conclusion: We found general support for the measurement properties of both scales. owever, polytomous PFS-16 scores exhibited advantages compared to dichotomous PFS-16 nd FACIT-F scores. Dichotomization of item responses compromises measurement recision and ability to separate people, and should be avoided.
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| 43. |
- Nilsson, Maria H, et al.
(författare)
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Fatigue in Parkinson's Disease: Measurement Properties of a Generic and a Condition-specific Rating Scale.
- 2013
-
Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 1873-6513 .- 0885-3924. ; 46:5, s. 737-746
-
Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: High-quality fatigue rating scales are needed to advance the understanding of fatigue and determine the efficacy of interventions. Several fatigue scales are used in Parkinson's disease, but few have been tested using modern psychometric methodology (Rasch analysis). OBJECTIVES: To examine the measurement properties of the generic Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale and the condition-specific 16-item Parkinson Fatigue Scale (PFS-16) using Rasch analysis. METHODS: Postal survey data (n=150; 47% women; mean age 70 years) were Rasch analyzed. The PFS-16 scores were tested according to both the original polytomous and the suggested alternative dichotomized scoring methods. RESULTS: The PFS-16 showed overall Rasch model fit, whereas the FACIT-F showed signs of misfit, which probably was the result of a sleepiness-related item and mixing of positively/negatively worded items. There was no differential item functioning by disease duration but by fatigue status (greater likelihood of needing to sleep or rest during the day among people classified as nonfatigued) in the PFS-16 and FACIT-F. However, this did not impact total score-based estimated person measures. Targeting and reliability (≥0.86) were good, but the dichotomized PFS-16 showed compromised measurement precision. Polytomous and dichotomized PFS-16 and FACIT-F scores identified six, three, and four statistically distinct sample strata, respectively. CONCLUSION: We found general support for the measurement properties of both scales. However, polytomous PFS-16 scores exhibited advantages compared with dichotomous PFS-16 and FACIT-F scores. Dichotomization of item responses compromises measurement precision and the ability to separate people, and should be avoided.
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| 44. |
- Pöder, Ulrika, et al.
(författare)
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Parents' Perceptions of Their Children's Cancer-Related Symptoms During Treatment : A Prospective, Longitudinal Study
- 2010
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 40:5, s. 661-670
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: This article describes a comprehensive assessment of treatment-related symptoms in children aged 0-18 years undergoing cancer treatment from the perspective of their parents. OBJECTIVES: The aim was to describe which symptoms that, according to parents, cause most problems for children receiving cancer treatment and to explore whether there is a relationship between parents' ratings of their children's symptoms and their own posttraumatic stress at one week (T1), two months (T2), and four months (T3) after a child's cancer diagnosis. METHODS: In total, 214 parents (107 mothers and 107 fathers) of 115 children answered a modified version of the Memorial Symptom Assessment Scale 10-18 and the PTSD Checklist Civilian Version over the telephone at T1-T3. RESULTS: According to parents, the following symptom areas cause the most problems for children undergoing cancer treatment: emotional distress, fatigue, nutrition, and pain. Pain is the most problematic area. The prevalence of most symptoms and the symptom burden decreases over time. Parents' ratings of their children's symptom burden and their own emotional distress, and mothers' and fathers' ratings of their child's symptom burden, are associated. Parents of adolescents report a greater symptom burden for their child than the parents of the youngest children. CONCLUSION: The opinions of both the patient and the parent are important in pediatrics. The results of this study can be used to guide health care professionals within pediatric oncology in their discussions of cancer treatment's adverse effects with patients and families. Not only the expectations and potential interventions but also the sources of worry should be discussed.
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| 45. |
- Rosenberg, Abby R, et al.
(författare)
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Long-term psychosocial outcomes among bereaved siblings of children with cancer
- 2015
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 49:1, s. 55-65
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT.: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.OBJECTIVES: To describe: 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings; and 2) potentially modifiable factors associated with poor outcomes.METHODS: Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years old or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support).RESULTS: Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD=7.8). Anxiety, depression, and illicit substance use increased during the year following their brother/sister's death, but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say "goodbye," and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P<0.001-0.031). Almost all siblings reported their loss still affected them; half stated the experience impacted current educational and career goals.CONCLUSION: How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year following sibling death may mitigate poor long-term outcomes.
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| 46. |
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| 47. |
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| 48. |
- 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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