Training Needs of Nutrition Educators Engaged in Policy, Systems, and Environmental Approaches.

OBJECTIVE: Assess training needs of nutrition educators incorporating policy, systems, and environmental (PSE) approaches into their obesity prevention efforts, to identify content for online training. METHODS: Conducted a national, online survey of state and local Expanded Food and Nutrition Education Program and Supplemental Nutrition Assistance Program Education professionals engaged in PSE efforts. RESULTS: Respondents (n = 601) rated the importance of 24 training topics related to planning, implementing, and evaluating PSE approaches. Most (21) topics were rated very important or essential, confirming the need for a comprehensive approach. Paired-sample t tests found significant differences (P <0.001) in some training needs between local and state staff (eg, training in evaluation rated higher for state staff). Training needs did not differ by program, region, or length of employment. The top 5 settings for PSE efforts were schools, farmers' markets, food banks/pantries, community gardens, and after-school programs. CONCLUSIONS AND IMPLICATIONS: Results informed the development of an online training for program implementers. Future research will be needed to assess and refine training needs further, which will evolve as nutrition educators gain more experience in PSE approaches.

Location of Clinician-Family Communication at the End of Life in the Pediatric Intensive Care Unit and Clinician Perception of Communication Quality.

Background: Communication between clinicians and families of dying children in the pediatric intensive care unit (PICU) is critically important for optimal care of the child and the family. Objective: We examined the current state of clinician perspective on communication with families of dying children in the PICU. Design: Prospective case series over a 15-month study period. Setting/Subjects: We surveyed nurses, psychosocial staff, and physicians who cared for dying children in PICUs at five U.S. academic hospitals. Measurements: Clinicians reported on the location of communication, perceived barriers to end-of-life care, and rated the quality of communication (QOC). Results: We collected 565 surveys from 287 clinicians who cared for 169 dying children. Clinicians reported that the majority of communication occurred at the bedside, and less commonly family conferences and rounds. Ten barriers to care were examined and were reported with frequencies of 2%-32%. QOC was rated higher when the majority of conversations occurred during family conferences (p = 0.01) and lower for patients of non-white race (p = 0.03). QOC decreased when 8 of the 10 barriers to care were reported. Conclusions: When a child is dying, clinicians report that communication with the family occurs most frequently at the child's bedside. This has important implications for future ICU communication research as the majority of previous research and education has focused on family care conferences. In addition, findings that QOC is perceived as lower for non-white patients and when clinicians perceive that barriers hindering care are present can help direct future efforts to improve communication in the PICU.

Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study.

BACKGROUND: Surveys suggest that most research participants desire access to secondary (incidental) genomic findings. However, few studies clarify whether preferences vary by the nature of the finding. METHODS: We surveyed members of the JHS (Jackson Heart Study, n=960), the FHS (Framingham Heart Study; n=955), and African American members of the FHS Omni cohort (n=160) who had consented to genomic studies. Each factorial survey included 3 vignettes, randomly selected from a set of 64, that described a secondary genomic result. Vignettes varied systematically by 5 factors identified by expert panels as salient: phenotype severity, actionability (preventability), reproductive significance, and relative and absolute risk of the phenotype. Respondents indicated whether they would want to receive the result. Data were analyzed separately by cohort using generalized linear mixed models. RESULTS: Response rates ranged from 67% to 73%. Across vignettes, 88% to 92% of respondents would definitely or probably want to learn the result. In multivariate analyses among JHS respondents, desire for results was associated with positive attitudes towards genetic testing, lower education, higher subjective numeracy, and younger age, but not with any of the 5 factors. Among FHS respondents, desire for results was associated with higher absolute risk, preventability, reproductive risk, and positive attitudes towards genetic testing. Among FHS Omni respondents, desire for results was associated with positive attitudes towards genetic testing and younger age. CONCLUSIONS: Most genetic research participants desire return of secondary genetic results. Several factors identified by expert panels as salient are associated with preferences among FHS, but not JHS or FHS Omni, participants.

Male gender and unemployment are associated with lower levels of perceived social support in adults with cystic fibrosis.

OBJECTIVE: Adults with cystic fibrosis (CF) face unique challenges with regard to the attainment and maintenance of social support. Although social support has been shown to improve treatment outcomes in other patient-populations, research on social support in adults with CF is limited. In fact, no studies have examined factors associated with less perceived social support in this population. The current study aimed to fill this gap, thus providing CF care teams with empirical evidence about who may be most likely to lack support and inform future intervention. METHODS: Participants in this cross-sectional study included 233 adults with CF who were part of a larger, longitudinal study. Participants completed the Interpersonal Support Evaluation List, a measure of social support, and attended routine clinical visits where measures of disease severity were obtained. RESULTS: Being female and employed were associated with greater perceptions of social support in this sample. Age, income, education, marital status, and disease-severity were not related to perceptions of social support. CONCLUSION: The present study revealed that individuals with CF who are unemployed and those who are male perceived having lower social support, perhaps identifying subgroups for whom targeted interventions may be appropriate.

Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.

Genetic analysis has become integral to many large cohort studies. However, little is known about longitudinal cohort study participants' attitudes toward genetics and genetic testing. We analyzed data from a survey of participants in the Jackson Heart Study (n = 960), Framingham Heart Study (n = 955), and Framingham Heart Study-Omni Cohort (n = 160). Based on a three-question attitude scale, most participants had positive attitudes toward genetic testing (median score = 4.3-5/5). Participants were also asked to select words to describe their attitudes toward genetics. More respondents endorsed the positive words "hopeful" (60%-70%), "optimistic" (44%-64%), "enthusiastic" (35%-43%), or "excited" (28%-30%) than the negative words "cautious" (35%-38%), "concerned" (25%-55%), "worried" (6%-13%), "pessimistic" (2%-5%), or "horrified" (1%-5%). Characteristics associated with favorable attitudes were greater genetics knowledge, higher subjective numeracy, experience with genetic testing, less frequent religious attendance, and not being employed. These findings demonstrate variation in attitudes even among participants in long-standing cohort studies, indicating a need for ongoing participant engagement and education.

Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis.

BACKGROUND: Although social support has been linked to a variety of health outcomes in those with and without chronic illness, this construct has rarely been studied in adults with cystic fibrosis (CF), who may face a unique set of clinical and psychosocial barriers. The current study explored the relationships between social support, mental health, physical health, treatment activity, and disease-specific quality of life in a sample of adults with CF. METHODS: Participants in the study included 250 adults with CF who took part in a larger longitudinal study. Participants were administered a battery of measures including a social support evaluation (Interpersonal Support Evaluation List, ISEL), a health assessment (Memorial Symptom Assessment Scale, MSAS), a health-related quality of life measure (Cystic Fibrosis Questionnaire - Revised, CFQ-R), and treatment activity questionnaires (Tool for Adherence Behaviour Screening, TABS and other surveys). RESULTS: Linear regression analyses indicated that greater social support was associated with fewer self-reported mental and physical health symptoms, digestive symptoms, and eating disturbances over time. Social support also was associated with elevated emotional, social, and role functioning as well as vitality and improved body image. Those who reported more support perceived less treatment burden and better overall perceptions of their health. CONCLUSIONS: Social support has been shown to be associated with health outcomes in other chronic illnesses, and the same is true for adults with CF. This study fills gaps in the literature by examining outcomes of social support in this emerging adult population and providing a potential area for intervention.

Intervening at the Setting Level to Prevent Behavioral Incidents in Residential Child Care: Efficacy of the CARE Program Model.

The current study examined the impact of a setting-level intervention on the prevention of aggressive or dangerous behavioral incidents involving youth living in group care environments. Eleven group care agencies implemented Children and Residential Experiences (CARE), a principle-based program that helps agencies use a set of evidence-informed principles to guide programming and enrich the relational dynamics throughout the agency. All agencies served mostly youth referred from child welfare. The 3-year implementation of CARE involved intensive agency-wide training and on-site consultation to agency leaders and managers around supporting and facilitating day-to-day application of the principles in both childcare and staff management arenas. Agencies provided data over 48 months on the monthly frequency of behavioral incidents most related to program objectives. Using multiple baseline interrupted time series analysis to assess program effects, we tested whether trends during the program implementation period declined significantly compared to the 12 months before implementation. Results showed significant program effects on incidents involving youth aggression toward adult staff, property destruction, and running away. Effects on aggression toward peers and self-harm were also found but were less consistent. Staff ratings of positive organizational social context (OSC) predicted fewer incidents, but there was no clear relationship between OSC and observed program effects. Findings support the potential efficacy of the CARE model and illustrate that intervening "upstream" at the setting level may help to prevent coercive caregiving patterns and increase opportunities for healthy social interactions.

Measuring the quality of dying and death in the pediatric intensive care setting: the clinician PICU-QODD.

CONTEXT: In the pediatric intensive care setting, an accurate measure of the dying and death experience holds promise for illuminating how critical care nurses, physicians, and allied psychosocial staff can better manage end-of-life care for the benefit of children and their families, as well as the caregivers. OBJECTIVES: The aim was to assess the reliability and validity of a clinician measure of the quality of dying and death (Pediatric Intensive Care Unit-Quality of Dying and Death 20 [PICU-QODD-20]) in the pediatric intensive care setting. METHODS: In a retrospective cohort study, five types of clinicians (primary nurse, bedside nurse, attending physician, and the psychosocial clinician and critical care fellow most involved in the case) were asked to complete a survey for each of the 94 children who died over a 12 month period in the pediatric intensive care units of two children's hospitals in the northeast U.S. Analyses were conducted within type of clinician. RESULTS: In total, 300 surveys were completed by 159 clinicians. Standard item analyses and substantive review led to the selection of 20 items for inclusion in the PICU-QODD-20. Cronbach alpha for the PICU-QODD-20 ranged from 0.891 for bedside nurses to 0.959 for attending physicians. For each type of clinician, the PICU-QODD-20 was significantly correlated with the quality of end-of-life care and with meeting the family's needs. In addition, when patient/family or team barriers were encountered, the PICU-QODD-20 score tended to be significantly lower than for cases in which the barrier was not encountered. CONCLUSION: The PICU-QODD-20 shows promise as a valid and reliable measure of the quality of dying and death in pediatric intensive care.

Epidemiology of death in the PICU at five U.S. teaching hospitals*.

OBJECTIVE: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States. DESIGN: Prospective case series. SETTING: Five U.S. teaching hospitals. SUBJECTS: We concurrently identified 192 consecutive patients who died prior to discharge from the PICU. Each site enrolled between 24 and 50 patients. Each PICU had similar organizational and staffing structures. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The overall mortality rate was 2.39% (range, 1.85-3.38%). One hundred thirty-three patients (70%) died following the withholding or withdrawal of life-sustaining treatments, 30 (16%) were diagnosed as brain dead, and 26 (14%) died following an unsuccessful resuscitation attempt. Fifty-seven percent of all deaths occurred within the first week of admission; these patients, who were more likely to have new onset illnesses or injuries, included the majority of those who died following unsuccessful cardiopulmonary resuscitation attempts or brain death diagnoses. Patients who died beyond 1-week length of stay in the PICU were more likely to have preexisting diagnoses, to be technology dependent prior to admission, and to have died following the withdrawal of life-sustaining treatment. Only 64% of the patients who died following the withholding or withdrawing of life support had a formal do-not-resuscitate order in place at the time of their death. CONCLUSIONS: The mode of death in the PICU is proportionally similar to that reported over the past two decades, while the mortality rate has nearly halved. Death is largely characterized by two fairly distinct profiles that are associated with whether death occurs within or beyond 1-week length of stay. Decisions not to resuscitate are often made in the absence of a formal do-not-resuscitate order. These data have implications for future quality improvement initiatives, especially around palliative care, end-of-life decision making, and organ donation.

Longitudinal trends in health-related quality of life in adults with cystic fibrosis.

BACKGROUND: Health-related quality-of-life (HRQOL) measures have been used as patient-reported outcomes in clinical trials in cystic fibrosis (CF), but there are limited data on HRQOL changes over time in adults with CF. METHODS: The Project on Adult Care in Cystic Fibrosis, a prospective, longitudinal panel study of 333 adults with CF at 10 CF centers in the United States, administered a disease-specific HRQOL measure, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), seven times over 21 months. The CFQ-R assesses both physical and psychosocial domains of health. Growth curve regression models were developed for each CFQ-R domain, adjusting for demographic and clinical characteristics. RESULTS: Between 205 and 303 adults completed surveys (response rate, 70%-93%). Mean age at baseline was 33 years (range, 19-64 years); mean FEV1 % predicted was 59.8% (SD, 22%). Over the 21 months of follow-up, lung function, frequency of pulmonary exacerbations, and nutritional indices were associated with physical CFQ-R domain scores. There were no significant population trends over time in the physical domain scores; however, there were population time trends in three psychosocial domains: treatment burden (+8.9 points/y), emotional functioning (+3.2 points/y), and social functioning (-2.4 points/y). Individual variation in both physical and psychosocial subscales was seen over 21 months. CONCLUSIONS: In a longitudinal multicenter population of adults with CF, clinical variables such as FEV1, exacerbation frequency, and weight were correlated with related CFQ-R subscales. For the population as a whole, the physical domains of CFQ-R, such as respiratory symptoms, were stable. In contrast, population changes in several psychosocial domains of CFQ-R suggest that differentiating between the physical and the psychosocial trajectories in health among adults with CF is critical in evaluating patient-reported outcomes.

"I was able to still be her mom"--parenting at end of life in the pediatric intensive care unit.

OBJECTIVES: The death of a child in the pediatric intensive care unit is perhaps one of the most devastating and challenging experiences a parent can ever endure. This article examines how parents of children dying in the pediatric intensive care unit understood their role and discusses implications for clinical care and policy. DESIGN: Retrospective, qualitative study. SETTING: Two pediatric intensive care units located in children's hospitals within academic medical centers in the northeastern United States. SUBJECTS: Parents of 18 children who died in the pediatric intensive care unit. INTERVENTIONS: Semistructured telephone interviews, digitally recorded and transcribed. MEASUREMENTS AND MAIN RESULTS: Many of the factors deemed important by the parents related to their capacity to be a "good parent" to their child throughout his or her stay in the pediatric intensive care unit. Specifically, parents sought meaningful ways to express and assert their parenthood across three domains: 1) providing love, comfort, and care; 2) creating security and privacy for the family; and 3) exercising responsibility for what happens to one's child. CONCLUSIONS: Parents' ability to fulfill the essential features of their role as parents of children dying in the pediatric intensive care unit shapes how they perceive the quality of the experience. Pediatric intensive care unit clinical care and policies can and should uphold and protect these features enabling parents to feel that, despite the outcome, they had done their best on behalf of their children.

Associations between illness perceptions and health-related quality of life in adults with cystic fibrosis.

OBJECTIVE: The objective of this work was to examine the relationship between illness perception, health status, and health-related quality of life (HRQOL) in a cohort of adults with cystic fibrosis (CF). METHODS: In the Project on Adult Care in Cystic Fibrosis, we administered five subscales (Illness Consequences, Illness Coherence, Illness Timeline--Cyclical, Personal Control, and Treatment Control) of the Illness Perception Questionnaire--Revised (IPQ-R). Multivariable linear regression analyses explored the associations between illness perception, health status, symptom burden, and physical and psychosocial HRQOL, as measured by various domains of the Cystic Fibrosis Questionnaire--Revised (CFQ-R). RESULTS: Among the 199 respondents (63% female; mean age, 36.8 ± 10.2 years), IPQ-R scores did not differ on age, gender, or lung function. In multivariable regression models, neither clinical characteristics nor physical or psychological symptom burden scores were associated with CFQ-R physical domains. In contrast, higher scores on Illness Consequences were associated with lower psychosocial CFQ-R scores. Higher scores on the Illness Coherence and Personal Control scales were associated with higher psychosocial CFQ-R scores. CONCLUSION: Adults with CF report a high understanding of their disease, feel that CF has significant consequences, and endorse both personal and treatment control over their outcomes. Illness perceptions did not vary with increased age or worsening disease severity, suggesting that illness perceptions may develop during adolescence. Illness perceptions were associated with psychosocial, but not physical, aspects of HRQOL. Efforts to modify illness perceptions as part of routine clinical care and counseling may lead to improved quality of life for adults with CF.

Impact of a contemplative end-of-life training program: being with dying.

OBJECTIVE: Health care professionals report a lack of skills in the psychosocial and spiritual aspects of caring for dying people and high levels of moral distress, grief, and burnout. To address these concerns, the "Being with Dying: Professional Training Program in Contemplative End-of-Life Care" (BWD) was created. The premise of BWD, which is based on the development of mindfulness and receptive attention through contemplative practice, is that cultivating stability of mind and emotions enables clinicians to respond to others and themselves with compassion. This article describes the impact of BWD on the participants. METHODS: Ninety-five BWD participants completed an anonymous online survey; 40 completed a confidential open-ended telephone interview. RESULTS: Four main themes-the power of presence, cultivating balanced compassion, recognizing grief, and the importance of self-care-emerged in the interviews and were supported in the survey data. The interviewees considered BWD's contemplative and reflective practices meaningful, useful, and valuable and reported that BWD provided skills, attitudes, behaviors, and tools to change how they worked with the dying and bereaved. SIGNIFICANCE OF RESULTS: The quality of presence has the potential to transform the care of dying people and the caregivers themselves. Cultivating this quality within themselves and others allows clinicians to explore alternatives to exclusively intellectual, procedural, and task-oriented approaches when caring for dying people. BWD provides a rare opportunity to engage in practices and methods that cultivate the stability of mind and emotions that may facilitate compassionate care of dying patients, families, and caregivers.

Difficult conversations: improving communication skills and relational abilities in health care.

BACKGROUND: Communication skills and relational abilities are essential core competencies that are associated with improved health outcomes, better patient adherence, fewer malpractice claims, and enhanced satisfaction with care. Yet, corresponding educational opportunities are sorely underrepresented and undervalued. OBJECTIVE: To evaluate the impact of an interdisciplinary experiential learning paradigm to improve communication skills and relational abilities of pediatric critical care practitioners. DESIGN: Prepost design, including baseline, immediate follow-up, and 5-month self-report questionnaires. SETTING: Tertiary care pediatric hospital, Children's Hospital Boston. PARTICIPANTS: One hundred six interdisciplinary clinicians with a range of experience levels and clinical specialties. MEASUREMENTS: Participants rated their sense of preparation, communication and relational skills, confidence, and anxiety. Open-ended questions asked participants about lessons learned, aspects of the training they found most helpful, and suggestions to improve the training. MAIN RESULTS: When questions were posed in a yes/no format, participants were nearly unanimous (93% to 98%) that the training had improved their sense of preparation, communication skills, and confidence immediately after and 5 months posttraining. Ninety percent of participants reported improvements in establishing relationships immediately after the training and 84% reported improvements 5 months posttraining. Eighty-two percent reported reduced anxiety immediately after training and 74% experienced reduced anxiety 5 months posttraining. On Likert items, 70% estimated their preparation had improved; 40% to 70% reported improvements in communication skills, confidence and anxiety, and 15% in relationship skills. Four qualitative themes emerged: identifying one's existing competence; integrating new communication skills and relational abilities; appreciating interdisciplinary collaboration; and valuing the learning itself. CONCLUSIONS: A 1-day experiential learning paradigm focused on communication skills and relational abilities was highly valued, clinically useful, and logistically feasible. Participants reported better preparation, improved communication and relational skills, greater confidence, and reduced anxiety. Participants deepened their understanding of family perspectives, recognized valuable existing competencies, and strengthened their commitment to interdisciplinary teamwork.

High treatment burden in adults with cystic fibrosis: challenges to disease self-management.

BACKGROUND: More aggressive management of cystic fibrosis (CF), along with the use of new therapies, has led to increasing survival. Thus, the recommended daily treatment regimens for most CF adults are complex and time consuming. METHODS: In the Project on Adult Care in CF (PAC-CF), an ongoing longitudinal study of CF adults, we assessed self-reported daily treatment activities and perceived treatment burden as measured by the CF Questionnaire-Revised (CFQ-R), a disease-specific quality of life measure. RESULTS: Among the 204 respondents, the median number of daily therapies reported was 7 (IQR 5-9) and the mean reported time spent on treatment activities was 108 minutes per day (SD 58 min). Respondents reported a median of 3 inhaled and 3 oral therapies on the day prior to the survey. Only 49% reported performing airway clearance (ACT) on that day. There were no differences in the number of medications or the time to complete therapies based on gender, age or FEV1. The mean CFQ-R treatment burden domain score was 52.3 (SD 22.1), with no significant differences in the treatment burden based on age or FEV1. In a multivariable model controlling for age, gender, and FEV1, using 2 or more nebulized medications and performing ACT for >or=30 min were significantly associated with increased treatment burden. CONCLUSION: The level of daily treatment activity is high for CF adults regardless of age or disease severity. Increasing number of nebulized therapies and increased ACT time, but not gender, age, or pulmonary function, are associated with higher perceived treatment burden. Efforts to assess the effects of high treatment burden on outcomes such as quality of life are warranted.

Advance care planning in adults with cystic fibrosis.

BACKGROUND: Because many patients with cystic fibrosis (CF) continue to survive into adulthood, discussion of end-of-life care decisions between clinicians and patients becomes a crucial part of CF adult care. Advance care planning (ACP) promotes alignment of patient care at the end of life with an individual's goals, however minimal research exists on ACP in CF. METHODS: We surveyed adults enrolled in the Project on Adult Care in Cystic Fibrosis (PAC-CF). We assessed experiences with ACP processes and communication and sought to identify factors associated with completion of an advance directive. RESULTS: The mean age of respondents (n = 234) was 34 years and the mean forced expiratory volume in 1 second (FEV(1)) was 64% predicted. Seventy-four percent reported that they had spoken to someone, generally a family member, about the care they would want if they became too ill to make decisions for themselves. However, only 30% reported completing an advance directive. Although 79% reported feeling comfortable talking to their clinician about ACP, only 28% said that their CF clinicians have asked about ACP. Having specific wishes about treatment decisions (odds ratio [OR] 7.8, 95% confidence interval [CI] 1.9-32.1) and reporting that a clinician had discussed ACP (OR 4.4, 95% CI 1.5-12.6) were significantly associated with reporting the completion of an advance directive. DISCUSSION: Though the majority of adults with CF report thinking about and communicating with family about advance care wishes, only a minority report completing an advance directive. Few adults with CF report being asked about ACP by their clinicians. Formulating specific wishes and discussing ACP with a clinician are strongly associated with completing an advance directive. Efforts to improve clinician communication with CF adults around ACP are needed to ensure that discussion of advance directives becomes an integral component of adult CF care.

Self-reported physical and psychological symptom burden in adults with cystic fibrosis.

Symptom burden is a key component of health-related quality of life in patients with cystic fibrosis (CF). To examine symptom prevalence and characteristics of adults with CF, we administered the Memorial Symptom Assessment Scale (MSAS), a previously validated measure of symptom burden, to CF patients enrolled in the Project on Adult Care in CF. The mean age of the 303 respondents (response rate 91%) was 32.8 years (range, 19-64); 58% were female, and their mean baseline pulmonary function (FEV(1) % predicted) was 69% (SD 28%). The median number of symptoms reported was 10, and there was no difference in the number of symptoms reported based on age, gender, or FEV(1). The most prevalent symptoms were cough (94%), shortness of breath (77%), and lack of energy (77%). Lack of energy and irritability caused the highest level of distress. MSAS symptom subscales were only moderately correlated with symptom status domains from existing CF health-related quality of life measures. Factor analysis led to the development of three distinct MSAS CF-symptom subscales, each with high internal validity. These findings show that adults with CF have a high symptom burden, particularly with respiratory and psychological symptoms, and that the new MSAS CF-specific subscales are a reliable measure of symptom distress in the CF population.

Self-reported involvement of family members in the care of adults with CF.

BACKGROUND: Few empirical studies have examined the role of family caregivers in the lives of adults with CF. METHODS: As part of the Project on Adult Care in CF (PAC-CF), an on-going prospective, longitudinal panel study of adults with CF, 119 family members and friends of adults with CF completed a mail survey in which they reported the frequency of help they provide for their family member with CF during routine care, hospitalization, and home IV treatment. RESULTS: The 119 caregivers were mainly spouses or unmarried partners (56%) and parents (29%). Fifteen percent of caregivers were children, friends, siblings or roommates. Family caregivers for adults with CF report assisting mainly with communication and social support during routine treatment, although one third provide some clinical care on a regular basis. Family caregivers report an increase in assistance during periods of acute illness, such as during a hospitalization and home IV treatment, especially with clinical care tasks. CONCLUSIONS: The depth of commitment required of families of children with CF has been well documented for decades. Our results suggest that the responsibilities of family members diminish only moderately as those with CF reach adulthood.

Adults with cystic fibrosis report important and unmet needs for disease information.

BACKGROUND: The informational needs of the growing population of adults with cystic fibrosis (CF) have not been previously assessed. METHODS: Adults with CF enrolled in the Project on Adult Care in CF (PAC-CF) completed a survey including 22 items in which information topics were rated on the importance of receiving more information and the satisfaction with sources of information. Unmet needs were defined as those topics rated with both high importance and low satisfaction with information sources. RESULTS: The median age of the 233 respondents was 34 years, median FEV(1) was 68% predicted, and 59% were female. The information topics with the highest mean importance ratings were on CF treatments and managing infection. The percentage of respondents rating an individual information need as unmet ranged from 2-32%. Information on "ways to deal with decreased energy, "new CF therapies," and "ways to deal with the unpredictability of the future" were reported as unmet by almost one-third of respondents. For all but four of the information topics assessed, clinical and socio-demographic factors were not significantly associated with increased likelihood of reporting unmet informational needs. CONCLUSIONS: Adults with CF rated information on treatment topics as most important. In contrast, patients were more likely to report information needs on disease self-management and future planning as unmet. Clinical and socio-demographic patient characteristics were not systematically associated with unmet informational needs. Clinicians caring for adult CF patients should not solely rely socio-demographic factors or markers of disease severity as signals for providing comprehensive information on disease self-management and future planning.

Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering.

OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for dying children. SETTING: A children's hospital in an urban academic medical center. PARTICIPANTS: Pediatric health care professionals of all disciplines caring for children with life-threatening conditions. INTERVENTIONS: We initiated a quality improvement program of professional education and support consisting of four interdisciplinary activities facilitated by the pediatric palliative care team. The Compassionate Care Network (CCN) provides an open forum for interdisciplinary networking and education. Palliative Care Rounds (PCR) provides education through monthly case-based discussions on selected units. Patient Care Conferences (PCC) facilitate communication and care planning for selected patients with palliative care needs on any unit in the children's center. Bereavement Debriefing Sessions (BDS) offer health professionals the opportunity to manage their responses to grief after a patient's death. EVALUATION MEASURES: From February 2002 to September 2003, we prospectively tracked the frequency of sessions conducted, the number and discipline of attendees, the age and diagnosis of patients discussed, and themes raised at each session. Participants evaluated each session. RESULTS: One hundred one sessions were conducted (PCR = 31, PCC = 23, CCN = 9, BDS = 38) for 950 participants (PCR = 312, PCC = 188, CCN = 193, BDS = 257). All units and disciplines participated in one or more sessions. Evaluations report that sessions are informative and will influence future professional practice. CONCLUSIONS: A program of interdisciplinary interventions can successfully educate and support health care professionals in providing palliative and end-of-life care for children. This program model can be applied in diverse pediatric health care settings.