The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping.

BACKGROUND: Current palliative care tools do not address distressing chronic symptoms that are most relevant to cystic fibrosis. METHODS: A CF-specific structured assessment based on a primary palliative care framework was administered to 41 adolescents and adults with CF. Descriptive and correlational analyses were conducted. RESULTS: Patients reported numerous physical and psychological symptoms (mean of 10 per patient), with psychological symptoms rated as more distressing. Anxiety (34%) and depression (44%) were prevalent and correlated with distress attributable to physical symptoms and difficulty with CF self-management, but did not correlate with disease severity. CONCLUSIONS: Individuals with CF, regardless of disease severity, face challenges managing symptom burden. Frequently reported symptoms are not consistently associated with distress, suggesting the importance of individualized evaluation. The CF-CARES (Coping, goal Assessment, and Relief from Evolving CF Symptoms) primary palliative care assessment model provides a framework for patients experiencing chronic symptoms to explore interventional options with their clinicians.

Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers.

BACKGROUND: Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations. METHODS: A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable). RESULTS: Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills. CONCLUSIONS: CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills.

Death of a child in the emergency department.

The American Academy of Pediatrics, American College of Emergency Physicians, and Emergency Nurses Association have collaborated to identify practices and principles to guide the care of children, families, and staff in the challenging and uncommon event of the death of a child in the emergency department in this policy statement and in an accompanying technical report.

Death of a child in the emergency department.

The American Academy of Pediatrics, American College of Emergency Physicians, and Emergency Nurses Association have collaborated to identify practices and principles to guide the care of children, families, and staff in the challenging and uncommon event of the death of a child in the emergency department in this policy statement and in an accompanying technical report.

Death of a child in the emergency department.

The death of a child in the emergency department (ED) is one of the most challenging problems facing ED clinicians. This revised technical report and accompanying policy statement reaffirm principles of patient- and family-centered care. Recent literature is examined regarding family presence, termination of resuscitation, bereavement responsibilities of ED clinicians, support of child fatality review efforts, and other issues inherent in caring for the patient, family, and staff when a child dies in the ED. Appendices are provided that offer an approach to bereavement activities in the ED, carrying out forensic responsibilities while providing compassionate care, communicating the news of the death of a child in the acute setting, providing a closing ritual at the time of terminating resuscitation efforts, and managing the child with a terminal condition who presents near death in the ED.

Patient- and family-centered care of children in the emergency department.

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and health care professionals. Providing patient- and family-centered care to children in the emergency department setting presents many opportunities and challenges. This technical report draws on previously published policy statements and reports, reviews the current literature, and describes the present state of practice and research regarding patient- and family-centered care for children in the emergency department setting as well as some of the complexities of providing such care. This technical report has been endorsed by the Academic Pediatric Association (formerly the Ambulatory Pediatric Association), the American College of Osteopathic Emergency Physicians, the National Association of Emergency Medical Technicians, the Institute for Family-Centered Care, and the American College of Emergency Physicians. This report is also supported by the Emergency Nurses Association.

Pediatric office emergencies.

PURPOSE OF REVIEW: An emergency in the office setting can be problematic without adequate staff, support, tools, and protocols. Though many emergencies are not immediately life-threatening, one risks the 'worst case scenario' occurring if not adequately prepared. Pediatric patients are prone to respiratory distress and compromise in many emergencies, and can rapidly decompensate without adequate support. A review of the history of emergency medical services for children and the framework for office emergency preparedness offers insight into current challenges for primary care providers. RECENT FINDINGS: Research has demonstrated that many primary care offices and clinics are ill prepared to handle common pediatric emergencies. Reliance on the Emergency Medical Services system is insufficient to assure optimal outcomes, especially given variations in the equipment, training, and experience of Emergency Medical Services providers in the care of children, and in remote areas where access may be delayed. Preparation and practice for office emergencies through 'mock code' exercises can increase practitioner confidence and reduce anxiety to perform life-saving care. SUMMARY: Better outcomes for office emergencies can result from staff training, availability of appropriate equipment and medications, maintenance of skills via formal and informal practice, and pathways for expeditious transfer to a definitive care facility.

Establishing the scope and methodological approach to out-of-hospital outcomes and effectiveness research.

Outcomes research offers out-of-hospital medicine a valuable methodology for studying the effectiveness of services provided in the out-of hospital setting. A clear understanding of the history and constructs of outcomes research is necessary for its integration into emergency medical services research. This report describes the conceptual framework of outcomes research and key methodological considerations for the successful implementation of out-of-hospital outcomes research. Illustrations of the specific applications of outcomes research and implications to existing methodologies are given, as well as suggestions for improved interdisciplinary research.

Risk adjustment and outcome measures for out-of-hospital respiratory distress.

The purpose of the Emergency Medical Services Outcomes Project (EMSOP) is to develop a foundation and framework for out-of-hospital outcomes research. In prior work, this group delineated the priority conditions, described conceptual models, suggested core and risk adjustment measures potentially useful to emergency medical services research, and summarized out-of-hospital pain measurement. In this fifth article in the EMSOP series, the authors recommend specific risk-adjustment measures and outcome measures for use in out-of-hospital research on patients presenting with respiratory distress. The methodology included systematic literature searches and a structured review by an expert panel. The EMSOP group recommends use of pulse oximetry, peak expiratory flow rate, and the visual analog dyspnea scale as potential risk-adjustment measures and outcome measures for out-of-hospital research in patients with respiratory distress. Furthermore, using mortality as an outcome measure is also recommended. Future research is needed to alleviate the paucity of validated tools for out-of-hospital outcomes research.

Emergency Medical Services Outcomes Project (EMSOP) IV: pain measurement in out-of-hospital outcomes research.

The purpose of the Emergency Medical Services Outcomes Project (EMSOP) is to develop a foundation and framework for out-of-hospital outcomes research. In prior work (EMSOP I), discomfort had the highest weighted score among outcome categories for the top 3 adult conditions (ie, minor trauma, respiratory distress, chest pain) and the first and third highest rankings for children's conditions (ie, minor trauma, respiratory distress). In this fourth article in the EMSOP series, we discuss issues relevant to the measurement of pain in the out-of-hospital setting, recommended pain measures that require evaluation, and implications for outcomes research focusing on pain. For adults, adolescents, and older children, 2 verbal pain-rating scales are recommended for out-of-hospital evaluation: (1) the Adjective Response Scale, which includes the responses "none," "slight," "moderate," "severe," and "agonizing," and (2) the Numeric Response Scale, which includes responses from 0 (no pain) to 100 (worst pain imaginable). The Oucher Scale, combining a visual analog scale with pictures, seems most promising for out-of-hospital use among younger children. Future research in out-of-hospital care should be conducted to determine the utility and feasibility of these measures, as well as the effectiveness of interventions for pain relief.

Emergency Medical Services Outcomes Project III (EMSOP III): the role of risk adjustment in out-of-hospital outcomes research.

The purpose of the Emergency Medical Services Outcomes Project (EMSOP) is to develop a foundation and framework for out-of-hospital outcomes research. Fundamental to that purpose is the identification of priority conditions, risk-adjustment measures (RAMs), and outcome measures. In this third EMSOP article, we examine the topic of risk adjustment, discuss the relevance of risk adjustment for out-of-hospital outcomes research, and recommend RAMs that should be evaluated for potential use in emergency medical services (EMS) research. Risk adjustment allows better judgment about the effectiveness and quality of alternative therapies; it fosters a better comparison of potentially dissimilar groups of patients. By measuring RAMs, researchers account for an important source of variation in their studies. Core RAMs are those measures that might be necessary for out-of-hospital outcomes research involving any EMS condition. Potential core RAMs that should be evaluated for their feasibility, validity, and utility in out-of-hospital research include patient age and sex, race and ethnicity, vital signs, level of responsiveness, Glasgow Coma Scale, standardized time intervals, and EMS provider impression of the presenting condition. Potential core RAMs that could be obtained through linkage to other data sources and that should be evaluated for their feasibility, validity, and utility include principal diagnosis and patient comorbidity. We recommend that these potential core RAMs be systematically evaluated for use in risk adjustment of out-of-hospital patient groups that might be used for outcomes research

EMS Agenda for the Future: Where We Are Where We Want to Be.

During the past 30 years, emergency medical services (EMS) in the United States have experienced explosive growth. The American health care system is now transforming, providing an opportune time to examine what we have learned over the past three decades in order to create a vision for the future of EMS. Over the course of several months, a multidisciplinary steering committee collaborated with hundreds of EMS-interested individuals, organizations, and agencies to develop the "EMS Agenda for the Future." Fourteen EMS attributes were identified as requiring continued development in order to realize the vision established within the Agenda. They are Integration of Health Services, EMS Research, Legislation and Regulation, System Finance, Human Resources, Medical Direction, Education Systems, Public Education, Prevention, Public Access, Communication Systems, Clinical Care, Information Systems, and Evaluation. Discussion of these attributes provides important guidance for achieving a vision for the future of EMS that emphasizes its critical role in American health care. [Delbridge TR, Bailey B, Chew JL Jr, Conn AKT, Krakeel JJ, Manz D, Miller DR, O'Malley PJ, Ryan SD, Spaite DW, Stewart RD, Suter RE, Wilson EM: EMS agenda for the future: Where we are … where we want to be. Ann Emerg Med February 1998;31:251-263.].