The article substantiates actuality of elaboration of the concept of development of palliative care of children and adolescents. The analysis of legislative and normative legal base, international documents, scientific studies related to this issue are analyzed. The situation in the regions ofthe Russian Federation is examined concerning organization of palliative care of children and its forms, provision of pharmaceuticals and specialized equipment and professional training of specialists. The demand of children population in palliative care in Russia is calculated according data of 2012. The results of carried out study are used as a basis of determining measures of development of system of palliative care of children and adolescents in the Russian Federation to propose as a foundation for the National concept as a necessary condition for organization of effective and efficient service.
Interventions to improve palliative care encounter challenges beyond the usual implementation problems because of palliative care's complex and changing character. In this study, we explored barriers and facilitators faced by health-care professionals in five European countries (England, Germany, Italy, Norway and the Netherlands) with regard to improving the organization of their palliative care service.
Semi-structured individual and focus group interviews were conducted with purposefully selected health-care professionals. The constant comparative method was used to analyse the data.
Professionals working in hospitals, hospices, nursing homes and primary care facilities who provide palliative care to adult patients were interviewed (n =40) or participated in ten focus group interviews (n =59). Barriers and facilitators were inductively grouped into 16 categories and arranged into five themes: innovation, individual professional level, group dynamics, organizational context and local political-economic context. Although the barriers and facilitators identified differed in scope, context, strength and provenance, they were shared by professionals from different European countries.
This study identified barriers and facilitators to organizational change in palliative care. Some of these barriers and facilitators were experienced by professionals in almost all countries and are therefore prerequisites to change. Understanding the barriers to and facilitators of change will help tailor organizational improvements to the needs of individuals and organizations.
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We evaluated the outcome of person-centred and integrated Palliative advanced home caRE and heart FailurE caRe (PREFER) with regard to patient symptoms, health-related quality of life (HQRL), and hospitalizations compared with usual care.
From January 2011 to October 2012, 36 (26 males, 10 females, mean age 81.9?years) patients with chronic heart failure (NYHA class III-IV) were randomized to PREFER and 36 (25 males, 11 females, mean age 76.6?years) to the control group at a single centre. Prospective assessments were made at 1, 3, and 6 months using the Edmonton Symptom Assessment Scale, Euro Qol, Kansas City Cardiomyopathy Questionnaire, and rehospitalizations. Between-group analysis revealed that patients receiving PREFER had improved HRQL compared with controls (57.6?±?19.2 vs. 48.5?±?24.4, age-adjusted P-value?=?0.05). Within-group analysis revealed a 26% improvement in the PREFER group for HRQL (P?=?0.046) compared with 3% (P?=?0.82) in the control group. Nausea was improved in the PREFER group (2.4?±?2.7 vs. 1.7?±?1.7, P?=?0.02), and total symptom burden, self-efficacy, and quality of life improved by 18% (P?=?0.035), 17% (P?=?0.041), and 24% (P?=?0.047), respectively. NYHA class improved in 11 of the 28 (39%) PREFER patients compared with 3 of the 29 (10%) control patients (P?=?0.015). Fifteen rehospitalizations (103?days) occurred in the PREFER group, compared with 53 (305?days) in the control group.
Person-centred care combined with active heart failure and palliative care at home has the potential to improve quality of life and morbidity substantially in patients with severe chronic heart failure.
Up to 30% of patients with laryngeal squamous cell carcinoma (SCC) present with recurrence after treatment. We analyzed factors associated with the risk of cancer recurrence and prognosis after recurrence.
A nationwide laryngeal SCC cohort from Finnish university hospitals during 2001 to 2005 with initial successful therapy (n = 316) was analyzed.
Laryngeal SCC recurred in 22% of patients. The median time to recurrence was 9 months, with 90% occurring within 36 months after treatment. The World Health Organization (WHO) performance status >0, neck metastasis at presentation, and nonsurgical treatment were independent prognostic factors for recurrence. Patients with local recurrence had a 5-year overall survival (OS) of 53% compared with 5% in patients with regional/distant recurrences. OS for glottic and nonglottic laryngeal SCC recurrence was 45% and 0%, respectively.
Contemporary radiooncological management of bone metastases from breast cancer: factors associated with prescription of different fractionation regimens (short or long course) in a rural part of North Norway with long travel distance.
The aim of this study was to reduce barriers that prevent implementation of evidence-based recommendations about single-fraction palliative radiotherapy (PRT) and to demonstrate that single-fraction PRT yields similar outcomes as long-course treatment (=10 fractions) in patients with bone metastases from breast cancer. This retrospective study (2007-2014) included 118 Norwegian female patients. All patients received guideline-conform systemic therapy including bone-targeting agents. Median survival was 12.7 months. Long-course PRT was prescribed in 60% of patients, while 21% had PRT with a single fraction of 8 Gy to at least one target. Reirradiation rate was not significantly higher after 8 Gy (9%, compared to 5% after long-course PRT and 6% after 4 Gy x5). Patients with favorable baseline characteristics such as younger age and good performance status (PS) were significantly more likely to receive long-course PRT. Biological subtype and comorbidity did not correlate with fractionation. Prognosis was influenced by biological subtype, extra-skeletal disease extent, severe anemia and abnormal CRP. The limited need for reirradiation after single fraction PRT might encourage physicians to prescribe this convenient regimen, which would improve resource utilization. Even patients with PS3 had a median survival of 3 months, which indicates that they could experience worthwhile clinical benefit.
Older/elderly patients with acute lymphoblastic leukemia (ALL) are poorly represented in clinical trials.
Using Swedish national leukemia registries, we investigated disease/patient characteristics, treatment choices, outcome, and the impact of an age-adapted protocol (introduced in 2009) in this population-based study of patients aged 55-85 years, diagnosed with ALL 2005-2012.
Of 174 patients, 82% had B-phenotype, 11% Burkitt leukemia (excluded), and 7% T-phenotype. Philadelphia chromosome positivity (Ph+) occurred in 35%. Of the 155 B- and T-ALL patients, 80% were treated with intensive protocols, and 20% with a palliative approach. Higher age and WHO performance status =2 influenced the choice of palliation. Intensive, palliative, and both approaches resulted in complete remission rate 83/16/70% and 3-year overall survival (OS) 32/3/26%. The age-adapted protocol did not improve outcome. With intensive treatment, platelet count =35×109 /L and age =75 years were adverse prognostic factors for OS, Ph+ was not. Male sex was an adverse prognostic factor in the 55-64 year age-group.
We report a high frequency of Ph+ in older/elderly patients, with no evidence of poorer outcome compared to Ph-negative disease. Overall prognosis for elderly patients with ALL remains dismal, despite the use of age-adapted treatment.
Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (family caregivers). To develop and deliver the most effective services to these carers, their QOL needs to be measured with acceptable and psychometrically sound instruments that have content validity.
This study reports three phases of the development and testing of such a measure: QOLLTI-F, Quality of Life in Life Threatening Illness--Family Carer Version, simultaneously in English and French. Participants were carers from 12 Canadian palliative care services who were asked to complete QOLLTI-F on three occasions.
The final version of QOLLTI-F consists of 16 items. It was deemed acceptable by the vast majority of carers and a longer, 24-item version was completed in a median of 12 min. Content validity was assured by inclusion of all domains reported by carers to be important to their QOL: state of carer, patient wellbeing, quality of care, outlook, environment, finances and relationships. Construct validity was demonstrated, as principal components analysis indicated that the 16 items did indeed reflect these seven domains. Furthermore, the seven domain scores predicted 53% of the variance in global QOL, although the QOLLTI-F Total score predicted less well (43%). The test-retest reliability for the QOLLTI-F Total score was 0.77-0.80 and ranged from 0.50 to 0.79 for the seven domain scores. All QOLLTI-F scores were shown to be significantly different between days the carers considered bad, average and good, demonstrating responsiveness to change, with the exception of the Financial Concerns submeasure, which did not distinguish between average and good days.
QOLLTI-F is unique in that in measuring one person's QOL (the carer's) it includes their perception of the condition of another (the patient). This attests to the close relationship between the two. It is also unique in that its content is derived from a qualitative study asking carers what is important to their own QOL, rather than focusing on the changes or burdens related to caregiving. QOLLTI-F also has the advantage of being briefer than other carer QOL measures. It contains measures of seven different domains that are determinants of carer QOL, in addition to a summary score. All these measures are valid, reliable and responsive to change in QOL.