Deborah E. Sellers

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.

New and Lingering Controversies in Pediatric End-of-Life Care

Objectives. Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study’s objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. Methods. Three children’s hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. Results. A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, “At times, I have acted against my conscience in providing treatment to children in my care.” For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, ∼20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, “Sometimes I feel we are saving children who should not be saved,” as agreed with the statement, “Sometimes I feel we give up on children too soon.” However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, “Sometimes I feel the treatments I offer children are overly burdensome.” Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92–98%, depending on specialty) and nurses (range: 83–85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. Conclusions. There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians’ regard for the dead-donor rule.

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, Childrens 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 ones 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.

Does the promotion and distribution of condoms increase teen sexual activity? Evidence from an HIV prevention program for Latino youth.

OBJECTIVES Opponents of condom availability programs argue that the promotion and distribution of condoms increases adolescent sexual activity. This assertion was tested empirically with data from the evaluation of a human immunodeficiency virus (HIV) prevention program for Latino adolescents. METHODS The onset of sexual activity, changes in the frequency of sex, and changes in the proportion of respondents with multiple partners were compared for intervention and comparison groups. Multivariate regression analysis was used to assess the effect of the intervention on these outcomes after adjustment for baseline differences between the intervention and comparison groups. RESULTS Male respondents in the intervention city were less likely than those in the comparison city to initiate first sexual activity (odds ratio [OR] = 0.08). Female respondents in the intervention city were less likely to have multiple partners (OR = 0.06). The program promoting and distributing condoms had no effect on the onset of sexual activity for females, the chances of multiple partners for males, or the frequency of sex for either males or females. CONCLUSIONS An HIV prevention program that included the promotion and distribution of condoms did not increase sexual activity among the adolescents in this study.

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.

Using Process Data To Explain Outcomes An Illustration From the Child and Adolescent Trial for Cardiovascular Health (CATCH)

The purpose of this article is to illustrate the use of process evaluation for understanding study outcomes. Data from the Child and Adolescent Trial for Cardiovascular Health (CATCH), a large school-based field trial, are used. Teacher characteristics, measures of classroom curriculum implementation, and competing influences are linked to changes in dietary knowledge, intentions, and self-efficacy of students in the intervention schools. Multiple regression analyses indicate that teacher charactenstics did not predict program implementation. Teacher characteristics and program fidelity, or the number of modifications made to the classroom curriculum during implementation, had direct and independent effects on student outcomes.

Factors That Influence Personal Perceptions of the Risk of an Acute Myocardial Infarction

Abstract Personal risk perceptions of acute myocardial infarction (AMI) affect peoples preventive health behaviors as well as their beliefs during a heart attack episode. The authors investigated factors that are associated with personal risk perceptions of having an AMI. A random-digit-dial survey was conducted among 1294 respondents, aged 18 years or older, in 20 communities across the nation as part of the Rapid Early Action for Coronary Treatment (REACT) trial. Results of two mixed-model linear regression analyses suggested that worse perceived general health, more risk factors, and greater knowledge were associated with greater perception of AMI risk. The results also showed that women who answered, incorrectly, that heart disease is not the most common cause of death for women in the United States reported significantly lower risk perceptions than women who answered this question correctly. The findings in this study suggest that interventions need to target specific misconceptions regarding AMI risk.

Understanding the variability in the effectiveness of community heart health programs: a meta-analysis.

Over the past 25 years, community interventions to reduce cardiovascular disease (CVD) have been conducted around the world with very mixed results. This study uses meta-analysis to assess whether the variation in the observed effectiveness of community heart health programs (CHHP) is related to characteristics of the intervention program, the population under study, or the evaluation methods. A CHHP is defined as any primary prevention program that attempted to reduce the population burden of CVD by shifting the distribution of risk factors in a general population. To be included in the meta-analysis, a study must have utilized a reference group in the evaluation, employed a repeated independent cross-sectional measurement design, and reported sufficient outcome information for at least one of four major risk factors: smoking, total cholesterol, blood pressure, and body weight. Results of these studies are summarized with the effect size measure (Yi1-Yi2)-(Yr1-Yr2)Sr1 where Y = outcome measure, S = standard deviation of the outcome measure, 1 = baseline, 2 = follow-up. i = intervention, and r = reference community. This measure, which reports the net change in the intervention group in terms of the variability in the reference population before the start of the intervention, permits comparison across different outcome measures and facilitates the aggregation of effects across studies. Generalized least squares regression, which permits the incorporation of multiple, dependent effect sizes from a single study, was used to assess the impact of characteristics of the intervention (prevention strategy, type of mass communication, community organization, and environmental change), the population (setting, gender, year of follow-up measurement), and the evaluation design and implementation (the number of communities, matching of communities, the follow-up time, the response rate, and covariate adjustment in the analysis) on the effect sizes. The results of this analysis suggest that the characteristics of the evaluation method account for much of the heterogeneity in the outcome of CHHPs, though some intervention characteristics also play a role.

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.

An interdisciplinary, family-focused approach to relational learning in neonatal intensive care.

Objective:The aim of this study is to show the efficacy of the Program to Enhance Relational and Communication Skills–Neonatal Intensive Care Unit (PERCS-NICU).Study Design:In this study, 74 practitioners attended workshops and completed baseline, post-training and follow-up questionnaires.Result:On yes/no questions, 93 to 100% reported improved preparation, communication skills and confidence post-training and follow-up. A total of 94 and 83% improved their ability to establish relationships, and 76 and 83% reported reduced anxiety post-training and follow-up, respectively. On Likert items, 59 and 64% improved preparation, 45 and 60% improved communication skills and confidence, 25 and 53% decreased anxiety and 16 and 32% improved relationships post-training and follow-up, respectively. Qualitative themes included integrating new communication and relational abilities, honoring the family perspective, appreciating interdisciplinary collaboration, personal/human connection and valuing the learning. In total, 93% applied skills learned, three-quarters transformed practice and 100% recommended PERCS-NICU.Conclusion:After PERCS-NICU, clinicians improved preparation, communication and relational abilities, confidence and reduced anxiety when holding difficult neonatal conversations.