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AimsThis study aimed to describe symptom prevalence of pain, shortness of breath, anxiety, and nausea and to identify factors associated with symptom relief in patients with heart failure during their last week of life.Methods and resultsThis nationwide study used data from the Swedish Register of Palliative Care and the Swedish Causes of Death Certificate Register. The sample included 4215 patients with heart failure as the underlying cause of death. Descriptive statistics and logistic regression were used to analyse data. Pain was the most prevalent symptom (64.0%), followed by anxiety (45.1%), shortness of breath (28.8%), and nausea (11.4%). Pain was the most often totally relieved (77.5%), followed by anxiety (68.4%), nausea (54.7%), and shortness of breath (37.1%). Key aspects of palliative care such as documented palliative care in the patient record, individual medication prescriptions by injection, symptom assessment with validated scales, documented end-of-life discussions with patients and/or family members, and external consultation were significantly associated with symptom relief. Relief of pain, shortness of breath, anxiety, and nausea were significantly better managed in nursing homes and hospice/inpatient palliative care compared with care in hospitals.ConclusionsThe results show that key aspects of palliative care during the last week of life are significantly associated with symptom relief. Increased access to palliative care could provide a way to improve care during the last week of life for patients with heart failure. Home-based settings provided more symptom relief than hospitals, which may indicate that the latter focuses on treatments and saving lives rather than promoting life before death.

IntroductionPhysical activity and appetite are important components for maintaining health. Yet, the association between physical activity and appetite in heart failure (HF) populations is not completely understood. The aim of the present study was to investigate the relationship between physical activity, functional capacity, and appetite in patients with HF.MethodsThis was a prospective observational study. In total, 186 patients diagnosed with HF, New York Heart Association (NYHA) class II-IV (mean age 70.7, 30% female), were included. Physical activity was measured using a multi-sensor actigraph for seven days and with a self-reported numeric rating scale. Physical capacity was measured by the six-minute walk test. Appetite was measured using the Council on Nutrition Appetite Questionnaire. Data were collected at inclusion and after 18 months. A series of linear regression analyses, adjusted for age, NYHA class, and B-type natriuretic peptide were conducted.ResultsAt baseline, higher levels of physical activity and functional capacity were significantly associated with a higher level of appetite in the unadjusted models. In the adjusted models, number of steps ( p = 0.019) and the six-minute walk test ( p = 0.007) remained significant. At the 18-month follow-up, all physical activity variables and functional capacity were significantly associated with appetite in the unadjusted regression models. In the adjusted models, number of steps ( p = 0.001) and metabolic equivalent daily averages ( p = 0.040) remained significant.ConclusionA higher level of physical activity measured by number of steps/day was associated with better self-reported appetite, both at baseline and the 18-month follow-up. Further research is needed to establish causality and explore the intertwined relationship between activity and appetite in patients with HF.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing. [ABSTRACT FROM AUTHOR]

Objectives: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care. Methods: The study had a pre–post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness – Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test. Results: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n  = 26, 81%) and women (n  = 19, 58%) and two-fifths had a university degree (n  = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p  = 0.002). No significant changes were found on caregiver burden or quality of life. Significance of results: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care. [ABSTRACT FROM AUTHOR]

IntroductionThere is a paucity of research about the impact of palliative care (PC) on perceived control (i.e. one's perceived influence over outcomes or events in the environment) and activation (i.e. ability to self-manage) in patients with symptomatic heart failure (HF). Likewise, little is known about the association between perceived control, activation, and symptom distress in this patient population. We hypothesized that patients with advanced HF who received ongoing PC services (i.e. ≥2 PC consultations) vs no access or a single PC consultation would have greater improvements in perceived control and activation and greater reductions in symptom distress three months post-discharge for HF exacerbation.MethodsForty-two patients (average age 53.9±8.0 years; predominantly male (72%), White (61%) and married (69%)) participated in the study. However, only 36 (85.7%) patients completed an outpatient PC consultation of which 29 (69%) patients returned for additional follow-up visits with the PC team. Data on perceived control, activation, and symptom distress were collected at baseline and three months. Parametric statistical models were applied to draw conclusions.ResultsFindings showed that the patients who received ≥2 PC consultations had greater improvements in perceived control and activation than their counterparts; these increases were associated with greater reductions in symptom distress.ConclusionOur findings suggest that on-going PC interventions enhance perceived control and activation in patients with advanced HF and open up the possibility of planning larger studies to assess the effect of PC on these variables as possible mediators to improvements in self-management and clinical outcomes.

Aim: To explore the experiences of family members of adult persons with type 1 diabetes concerning both the approach of healthcare professionals and feelings of alienation in encounters with professional diabetes care. Methods: A cross‐sectional explorative quantitative and qualitative design. The Family Involvement and Alienation Questionnaire—Revised (FIAQ‐R), including an open‐ended question, was answered by 37 family members of adult persons with type 1 diabetes. Analyses included descriptive statistics and qualitative analysis. The study has received ethical approval. Results: Family members rated the approach of the healthcare professionals as being somewhat positive and considered that the approach towards them is important. They only felt partially alienated from the professional care. Qualitative data revealed that the family members often lacked direct access to the professional care and that their involvement was dependent on their relationship with the person with diabetes. Findings highlighted that the family members' wish to be involved in the care was sometimes unanswered. Conclusion: Based on the findings, it is reasonable to stress the importance of considering family members' perspectives and involving them in diabetes care to improve overall patient support. [ABSTRACT FROM AUTHOR]

Introduction: Umbilical cord prolapse (UCP) is a rare but severe obstetric complication in the presence of a rupture of the membranes. Although it is not possible to prevent a spontaneous rupture of the membranes (SROM), it is possible to prevent an amniotomy, which is a commonly used intervention in labor. This study aimed to explore the incidence and risk factors that are associated with UCP in labor when amniotomy is used vs SROM. Material and methods: A retrospective nationwide register study was conducted of all births in Sweden from January 2014 to June 2020 that were included in the Swedish Pregnancy Register (n = 717 336). The main outcome, UCP, was identified in the data by the International Classification of Diseases (ICD‐10) diagnosis code O69.0. Multiple binary logistic regression analysis was used to identify the risk factors. Results: Amniotomy was performed in 230 699 (43.6%) of all pregnancies. A UCP occurred in 293 (0.13%) of these cases. SROM occurred in 298 192 (56.4%) of all cases, of which 352 (0.12%) were complicated by UCP. Risk factors that increased the odds of UCP for both amniotomy and SROM were: higher parity, non‐cephalic presentation and an induction of labor. Greater gestational age reduced the odds of UCP. Risk factors associated with only amniotomy were previous cesarean section and the presence of polyhydramnios. Identified risk factors for UCP in labor with SROM were a higher maternal age and maternal origin outside of the EU. Conclusions: UCP is a rare complication in Sweden. Beyond confirming the previously recognized risk factors, this study found induction of labor and previous cesarean section to be risk factors in labor when amniotomy is used. [ABSTRACT FROM AUTHOR]

Background: Continuity of care is viewed as a hallmark of high‐quality care in the primary care context. Measures to evaluate the quality of provider performance are scarce, and it is unclear how the assessments correlate with patients' experiences of care as coherent and interconnected over time, consistent with their preferences and care needs. Aim: To develop and evaluate a patient‐reported experience measure of continuity of care in primary care for patients with complex care needs. Method: The study was conducted in two stages: (1) development of the instrument based on theory and empirical studies and reviewed for content validity (16 patients with complex care needs and 8 experts) and (2) psychometric evaluation regarding factor structure, test–retest reliability, internal consistency reliability, and convergent validity. In all, 324 patients participated in the psychometric evaluation. Results: The Patient Experienced Continuity of care Questionnaire (PECQ) contains 20 items clustered in four dimensions of continuity of care measuring Information (four items), Relation (six items), Management (five items), and Knowledge (five items). Overall, the hypothesized factor structure was indicated. The PECQ also showed satisfactory convergent validity, internal consistency, and stability. Conclusion/Implications: The PECQ is a multidimensional patient experience instrument that can provide information on various dimensions useful for driving quality improvement strategies in the primary care context for patients with complex care needs. Patient or Public Contribution: Patients have participated in the content validation of the items. [ABSTRACT FROM AUTHOR]