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European Journal of Endocrinology Sep 2017Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous... (Review)
Review
Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with The European Society for Pediatric Endocrinology, The Endocrine Society, European Society of Human Reproduction and Embryology, The American Heart Association, The Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society for Endocrinology, the Pediatric Endocrine Society, the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology and the Endocrine Society. Advocacy groups appointed representatives who participated in pre-meeting discussions and in the consensus meeting.
Topics: Congresses as Topic; Europe; Female; Humans; Ohio; Patient Care; Practice Guidelines as Topic; Turner Syndrome; United States; Women
PubMed: 28705803
DOI: 10.1530/EJE-17-0430 -
Palliative Medicine Sep 2017The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. (Review)
Review
BACKGROUND
The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care.
AIM
To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care.
DESIGN
A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE.
DATA SOURCES
Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting.
RESULTS
A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'.
CONCLUSION
Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.
Topics: Decision Making; Delphi Technique; Evidence-Based Practice; Humans; Palliative Care
PubMed: 28190381
DOI: 10.1177/0269216317690685 -
Palliative Medicine Sep 2014Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability... (Review)
Review
BACKGROUND
Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable.
AIM
To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning.
DESIGN
Systematic review.
DATA SOURCES
We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000-2012.
RESULTS
The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients' end-of-life wishes.
CONCLUSION
The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients' preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community.
Topics: Advance Care Planning; Advance Directives; Hospice Care; Hospitalization; Humans; Patient Preference; Resuscitation Orders; Terminal Care
PubMed: 24651708
DOI: 10.1177/0269216314526272 -
The Cochrane Database of Systematic... Apr 2016Midwives are primary providers of care for childbearing women around the world. However, there is a lack of synthesised information to establish whether there are... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Midwives are primary providers of care for childbearing women around the world. However, there is a lack of synthesised information to establish whether there are differences in morbidity and mortality, effectiveness and psychosocial outcomes between midwife-led continuity models and other models of care.
OBJECTIVES
To compare midwife-led continuity models of care with other models of care for childbearing women and their infants.
SEARCH METHODS
We searched the Cochrane Pregnancy and Childbirth Group's Trials Register (25 January 2016) and reference lists of retrieved studies.
SELECTION CRITERIA
All published and unpublished trials in which pregnant women are randomly allocated to midwife-led continuity models of care or other models of care during pregnancy and birth.
DATA COLLECTION AND ANALYSIS
Two review authors independently assessed trials for inclusion and risk of bias, extracted data and checked them for accuracy. The quality of the evidence was assessed using the GRADE approach.
MAIN RESULTS
We included 15 trials involving 17,674 women. We assessed the quality of the trial evidence for all primary outcomes (i.e. regional analgesia (epidural/spinal), caesarean birth, instrumental vaginal birth (forceps/vacuum), spontaneous vaginal birth, intact perineum, preterm birth (less than 37 weeks) and all fetal loss before and after 24 weeks plus neonatal death using the GRADE methodology: all primary outcomes were graded as of high quality.For the primary outcomes, women who had midwife-led continuity models of care were less likely to experience regional analgesia (average risk ratio (RR) 0.85, 95% confidence interval (CI) 0.78 to 0.92; participants = 17,674; studies = 14; high quality), instrumental vaginal birth (average RR 0.90, 95% CI 0.83 to 0.97; participants = 17,501; studies = 13; high quality), preterm birth less than 37 weeks (average RR 0.76, 95% CI 0.64 to 0.91; participants = 13,238; studies = eight; high quality) and less all fetal loss before and after 24 weeks plus neonatal death (average RR 0.84, 95% CI 0.71 to 0.99; participants = 17,561; studies = 13; high quality evidence). Women who had midwife-led continuity models of care were more likely to experience spontaneous vaginal birth (average RR 1.05, 95% CI 1.03 to 1.07; participants = 16,687; studies = 12; high quality). There were no differences between groups for caesarean births or intact perineum.For the secondary outcomes, women who had midwife-led continuity models of care were less likely to experience amniotomy (average RR 0.80, 95% CI 0.66 to 0.98; participants = 3253; studies = four), episiotomy (average RR 0.84, 95% CI 0.77 to 0.92; participants = 17,674; studies = 14) and fetal loss less than 24 weeks and neonatal death (average RR 0.81, 95% CI 0.67 to 0.98; participants = 15,645; studies = 11). Women who had midwife-led continuity models of care were more likely to experience no intrapartum analgesia/anaesthesia (average RR 1.21, 95% CI 1.06 to 1.37; participants = 10,499; studies = seven), have a longer mean length of labour (hours) (mean difference (MD) 0.50, 95% CI 0.27 to 0.74; participants = 3328; studies = three) and more likely to be attended at birth by a known midwife (average RR 7.04, 95% CI 4.48 to 11.08; participants = 6917; studies = seven). There were no differences between groups for fetal loss equal to/after 24 weeks and neonatal death, induction of labour, antenatal hospitalisation, antepartum haemorrhage, augmentation/artificial oxytocin during labour, opiate analgesia, perineal laceration requiring suturing, postpartum haemorrhage, breastfeeding initiation, low birthweight infant, five-minute Apgar score less than or equal to seven, neonatal convulsions, admission of infant to special care or neonatal intensive care unit(s) or in mean length of neonatal hospital stay (days).Due to a lack of consistency in measuring women's satisfaction and assessing the cost of various maternity models, these outcomes were reported narratively. The majority of included studies reported a higher rate of maternal satisfaction in midwife-led continuity models of care. Similarly, there was a trend towards a cost-saving effect for midwife-led continuity care compared to other care models.
AUTHORS' CONCLUSIONS
This review suggests that women who received midwife-led continuity models of care were less likely to experience intervention and more likely to be satisfied with their care with at least comparable adverse outcomes for women or their infants than women who received other models of care.Further research is needed to explore findings of fewer preterm births and fewer fetal deaths less than 24 weeks, and all fetal loss/neonatal death associated with midwife-led continuity models of care.
Topics: Amnion; Analgesia, Obstetrical; Cesarean Section; Continuity of Patient Care; Episiotomy; Female; Humans; Infant; Infant Mortality; Infant, Newborn; Midwifery; Models, Organizational; Patient Satisfaction; Perinatal Care; Postnatal Care; Pregnancy; Prenatal Care; Randomized Controlled Trials as Topic
PubMed: 27121907
DOI: 10.1002/14651858.CD004667.pub5 -
Journal of Clinical Oncology : Official... Jan 2017Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012... (Review)
Review
Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012 American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) on the integration of palliative care into standard oncology care for all patients diagnosed with cancer. Methods ASCO convened an Expert Panel of members of the ASCO Ad Hoc Palliative Care Expert Panel to develop an update. The 2012 PCO was based on a review of a randomized controlled trial (RCT) by the National Cancer Institute Physicians Data Query and additional trials. The panel conducted an updated systematic review seeking randomized clinical trials, systematic reviews, and meta-analyses, as well as secondary analyses of RCTs in the 2012 PCO, published from March 2010 to January 2016. Results The guideline update reflects changes in evidence since the previous guideline. Nine RCTs, one quasiexperimental trial, and five secondary analyses from RCTs in the 2012 PCO on providing palliative care services to patients with cancer and/or their caregivers, including family caregivers, were found to inform the update. Recommendations Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.
Topics: Communication; Evidence-Based Medicine; Humans; Neoplasms; Palliative Care; Patient Care Team; Referral and Consultation
PubMed: 28034065
DOI: 10.1200/JCO.2016.70.1474 -
International Journal of Environmental... Oct 2021Intensive care unit discharge is an important transition that impacts a patient's wellbeing. Nurses can play an essential role in this scenario, potentiating patient... (Review)
Review
Intensive care unit discharge is an important transition that impacts a patient's wellbeing. Nurses can play an essential role in this scenario, potentiating patient empowerment. A systematic review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (the PRISMA Statement. Embase), PubMed/MEDLINE, CINAHL, Cochrane Central Register of Controlled Trials (CENTRAL), CUIDEN Plus, and LILACS databases; these were evaluated in May 2021. Two independent reviewers analyzed the studies, extracted the data, and assessed the quality of evidence. Quality of the studies included was assessed using the Cochrane risk-of-bias tool. Of the 274 articles initially identified, eight randomized controlled trials that reported on nursing interventions had mainly focused on patients' ICU discharge preparation through information and education. The creation of ICU nurse-led teams and nurses' involvement in critical care multidisciplinary teams also aimed to support patients during ICU discharge. This systematic review provides an update on the clinical practice aimed at improving the patient experience during ICU discharge. The main nursing interventions were based on information and education, as well as the development of new nursing roles. Understanding transitional needs and patient empowerment are key to making the transition easier.
Topics: Critical Care; Humans; Intensive Care Units; Patient Discharge; Patient Participation
PubMed: 34769569
DOI: 10.3390/ijerph182111049 -
Nurse Education in Practice May 2023To synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in... (Review)
Review
AIM
To synthesise the experiences of nursing students encountering patient death and caring for patients under palliative care or at end-of-life and their families in clinical settings BACKGROUND: Nurses are pivotal in caring for dying patients and families. It has been reported that nursing students feel unprepared in caring for dying patients and handling patient death. Understanding their experiences would better inform how palliative care education can be improved and how students can be better supported in clinical settings.
DESIGN
A qualitative systematic review and meta-synthesis METHODS: PubMed, Embase, CINAHL, PsycINFO, ProQuest and Google Scholar were searched for peer-reviewed articles and theses/dissertations published between 1 January 2012-25 Feb 2023. Qualitative studies of any design reporting nursing students' experiences of patient death, caring for patients under palliative care, at end-of-life, or with time-limiting diseases in clinical settings in English were included. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Data were synthesised using Sandelowski and Barroso's 2-step framework through a meta-summary using thematic analysis, which were then integrated into meta-syntheses using an event timeline.
RESULTS
The review included 71 studies from 26 countries (n = 1586 nursing students). The meta-summary contained 8 themes and 23 subthemes: (1) Communication experience with patients and families, (2) Satisfaction with care provided to patients and families, (3) Impact of the COVID-19 pandemic on death and dying, (4) Perceptions of death and dying, (5) Impact of death, (6) Nursing education on palliative end-of-life care, (7) Support systems and coping methods, (8) Learning outcomes. The meta-synthesis depicted nursing students' experiences before, during and after encountering dying patients, families and patient death. Suggestions for nursing faculty and clinical staff on how they could equip students with necessary skills and knowledge and support them in clinical settings were also provided.
CONCLUSIONS
While caring for dying patients and families was beneficial to nursing students' learning and professional development, they encountered many challenges. Governments, clinical and academic nursing leaders must prioritise the integration of palliative care content into the curricula across nursing schools in face of increasing palliative and end-of-life care needs in patients. Nursing schools should ensure that students are adequately prepared by designing culturally and socioeconomically relevant curricula, integrating theoretical and experiential learning and offering students a thorough understanding of palliative and end-of-life care. Clinical staff and nursing instructors should support students emotionally and guide them in patient care.
Topics: Humans; Students, Nursing; Pandemics; COVID-19; Terminal Care; Palliative Care; Death
PubMed: 37004470
DOI: 10.1016/j.nepr.2023.103625 -
BMC Palliative Care Jul 2018This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside... (Review)
Review
BACKGROUND
This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.
METHODS
Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.
RESULTS
Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.
CONCLUSION
Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.
Topics: Caregivers; Humans; Needs Assessment; Neoplasms; Patient Care; Prevalence; Surveys and Questionnaires
PubMed: 30037346
DOI: 10.1186/s12904-018-0346-9 -
Journal of Clinical Nursing Oct 2021To synthesise qualitative research evidence on the experience of stroke survivors and informal caregivers in hospital-to-home transitional care. (Review)
Review
AIMS AND OBJECTIVES
To synthesise qualitative research evidence on the experience of stroke survivors and informal caregivers in hospital-to-home transitional care.
BACKGROUND
Due to a shortened hospital stay, stroke survivors/caregivers must take over complex care on discharge from hospital to home. Gaps in the literature warrant a meta-synthesis of qualitative studies on perceived enablers and barriers during this crucial period.
DESIGN
A systematic review and meta-synthesis.
METHODS
A review was guided by Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) checklist where six databases were searched from April to June 2020 including CINAHL Plus, MEDLINE, PsycINFO, Scopus, Web of Science and ProQuest and ProQuest Dissertations and Theses. There was no date limit to the search. Selected studies were critically appraised. A thematic synthesis approach was applied.
RESULTS
The synthesis of 29 studies identified three major findings. First, partnerships with stroke survivors/caregivers empower discharge preparation, foster competence to navigate health and social care systems and activate self-management capabilities. Second, gaps in discharge planning and the lack of timely postdischarge support contribute to unmet care needs for stroke survivors/caregivers and affect their ability to cope with poststroke changes. Third, stroke survivors/caregivers expect integrated transitional care that promotes shared decision-making and enables long-term self-management at home.
CONCLUSIONS
Hospital-to-home transition is a challenging period in the trajectory of poststroke rehabilitation and recovery. Further research is required to deepen understandings of all stakeholders' views and address unmet needs during transitional care.
RELEVANCE TO CLINICAL PRACTICE
Protocols and clinical guidelines relating to discharge planning and transitional care need to be reviewed to ensure partnership approach with survivors/caregivers in the design and delivery of individualised transitional care. Stroke nurses are in a unique position to lead timely support for survivors/caregivers and to bridge service gaps in hospital-to-home transitional care.
Topics: Aftercare; Caregivers; Hospitals; Humans; Patient Discharge; Stroke; Stroke Rehabilitation; Survivors; Transitional Care
PubMed: 33872424
DOI: 10.1111/jocn.15807 -
The American Journal of Hospice &... Aug 2018To present the findings of a systematic review on the use of simulation-based learning experiences (SBLEs) to teach communication skills to nursing students and... (Review)
Review
OBJECTIVES
To present the findings of a systematic review on the use of simulation-based learning experiences (SBLEs) to teach communication skills to nursing students and clinicians who provide palliative and end-of-life care to patients and their families.
BACKGROUND
Palliative care communication skills are fundamental to providing holistic patient care. Since nurses have the greatest amount of direct exposure to patients, building such communication competencies is essential. However, exposure to patients and families receiving palliative and end-of-life care is often limited, resulting in few opportunities to learn these skills in the clinical setting. Simulation-based learning experiences can be used to supplement didactic teaching and clinical experiences to build the requisite communication skills.
METHODS
Searches of CINAHL, MEDLINE, PsychINFO, ERIC, and Web of Science electronic databases and Grey Literature returned 442 unique records. Thirty articles met the established criteria, including the SBLE must contain a nursing role.
RESULTS
Simulation-based learning experience are being used to teach palliative and end-of-life communication skills to nursing students and clinicians. Lack of standardization, poor evaluation methods, and limited exposure to the entire interprofessional team makes it difficult to identify and disseminate validated best practices.
CONCLUSION
While the need for further research is acknowledged, we recommend this evidence be augmented by training programs that utilize SBLEs through (1) applying standards, (2) clearly specifying goals and objectives, (3) integrating externally validated scenarios, and (4) employing rigorous evaluation methods and measures that link the SBLE to the training objectives and desired clinician practice behaviors and patient outcomes.
Topics: Clinical Competence; Communication; Education, Nursing; Formative Feedback; Humans; Nurse's Role; Palliative Care; Simulation Training; Terminal Care
PubMed: 29514480
DOI: 10.1177/1049909118761386