Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

Hospital-Based Nursing Research: Clinical and Economic Outcomes.

We surveyed 181 nursing research leaders from Magnet® hospitals, using mixed methods with the online Hospital-Based Nursing Research Clinical and Economic Outcomes survey, to describe the clinical and economic outcomes of nursing research conducted in hospital settings. We used descriptive statistics to analyze the quantitative findings and a qualitative descriptive approach to study the open-ended responses. Most respondents reported that findings from their hospital-based studies were implemented on their units (88.2%), improved health care processes (88.2%), and reduced hospital costs (79%). Over 50% reported positive impacts on core quality measures, including improving patient/family satisfaction (76.8%), nurse satisfaction (65%), length of stay (59.1%), and infection rates (56.5%). Four themes were identified: study evaluation, improvements in care delivery/clinical outcomes, economic impact, and intrinsic and extrinsic rewards. Much of the research reported by respondents focused on quality measures with findings that resulted in improved clinical and economic outcomes.

Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT.

BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (ß = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (ß = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (ß = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

Advance Care Planning-Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT.

CONTEXT: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. OBJECTIVE: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls. METHODS: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. FINDINGS: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (ß = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. CONCLUSION: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

BACKGROUND: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. METHODS AND FINDINGS: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. CONCLUSIONS: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. TRIAL REGISTRATION: ISRCTN registry ISRCTN63110516.

Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial.

Trial tested effect of advance care planning on family/surrogates' understanding of patients' end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)-(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)-(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients' treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (high→high transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, χ2 = 11·52, p = 0·01)], even as patients' preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients' treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3). Conversations matter.

Is Anemia in Low Income Pregnant Women Related to Their Infants' Having Anemia? A Cohort Study of Pregnant Women-Infant Pairs in the United States.

OBJECTIVE: Given evidence that anemia in the first year of life is associated with long-term cognitive, motor, and behavioral deficits, reducing infant anemia is important. The primary objective of this research is to examine whether anemia in low income pregnant women in the United States is associated with anemia in the women's infants. METHODS: This cohort study linked Centers for Disease Control and Prevention surveillance data on pregnant women with incomes below 185% of the federal poverty level from 2010 and 2011 with data on 6-11 month olds from 2011, resulting in a sample of 21,246 uniquely matched mother-infant pairs. We examined bivariate and multivariate relationship between anemia severity in pregnant women and in their infants. RESULTS: Seventeen percent of women had anemia (13.1% mild and 3.9% moderate to severe) and 20.1% infants had anemia (16.4% mild and 3.7% moderate to severe). For both women and infants, blacks had substantially higher anemia rates than whites. In bivariate analysis and multivariate analyses maternal anemia showed a dose-response relationship to infant anemia. In predicted probabilities from the multivariate models, 27.2% of infants born to pregnant women with moderate to severe anemia had anemia, compared to 23.3% for infants whose mothers had mild anemia, and 18.3% for infants whose mothers did not have anemia. CONCLUSION: This study provides strong evidence of a relationship between maternal and infant anemia in the United States among people with low incomes. Efforts to reduce anemia during pregnancy may be an important strategy for minimizing childhood anemia.

Advance Care Planning and HIV Symptoms in Adolescence.

OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns. Path analysis examined the mediating role of dyadic treatment congruence with respect to the intervention effect on symptom patterns. RESULTS: Patients were a mean age of 17.8 years old, 54% male, and 93% African American. Latent class analysis identified 2 latent HIV-symptom classes at 12 months: higher symptoms and suffering (27%) and lower symptoms and suffering (73%). FACE pACP had a positive effect on dyadic treatment congruence (ß = .65; 95% CI: 0.04 to 1.28), and higher treatment congruence had a negative effect on symptoms and suffering (ß = -1.14; 95% CI: -2.55 to -0.24). Therefore, FACE pACP decreased the likelihood of symptoms and suffering through better dyadic treatment congruence (ß = -.69; 95% CI: -2.14 to -0.006). Higher religiousness (ß = 2.19; 95% CI: 0.22 to 4.70) predicted symptoms and suffering. CONCLUSIONS: FACE pACP increased and maintained agreement about goals of care longitudinally, which lowered adolescents' physical symptoms and suffering, suggesting that early pACP is worthwhile.

Deciphering chest pain in women.

The causes of chest pain range from benign sources such as muscle strain to life-threatening diagnoses such as aortic dissection and myocardial infarction. The likelihood and presentations of disorders causing chest pain are different between women and men. This article highlights important features in determining a correct diagnosis.

Gender differences in nurse practitioner salaries.

BACKGROUND AND PURPOSE: While male nurses have been shown to earn considerably more than female nurses, there is less evidence on gender disparities in salary among nurse practitioners (NPs). This study examines whether the gender gap in NP salaries persists after controlling for differences in work setting and demographic factors. METHODS: We analyzed the relationship between gender and salary (2011 pretax earnings) among 6591 NPs working as NPs at least 35 h per week, using the 2012 National Sample Survey of Nurse Practitioners. We first conducted bivariate regression analyses examining the relationship between gender and earnings, and then developed a multivariate model that controlled for individual differences in demographic and work characteristics. CONCLUSIONS: Male NPs earned $12,859 more than female NPs, after adjusting for individual differences in demographics and work characteristics. The gender gap was $7405 for recent NP graduates, and grew over time. Male NPs earned significantly more than female NPs across all clinical specialty areas. IMPLICATIONS FOR PRACTICE: The gender disparities in NP salaries documented here regardless of professional seniority or clinical area should spark healthcare organizations to conduct pay equity assessments of their employees' salaries to identify and ameliorate pay inequality.

A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning.

The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.

Implementation and Impact of Patient Lay Navigator-Led Advance Care Planning Conversations.

CONTEXT: Advance care planning (ACP) improves alignment between patient preferences for life-sustaining treatment and care received at end of life (EOL). OBJECTIVES: To evaluate implementation of lay navigator-led ACP. METHODS: A convergent, parallel mixed-methods design was used to evaluate implementation of navigator-led ACP across 12 cancer centers. Data collection included 1) electronic navigation records, 2) navigator surveys (n = 45), 3) claims-based patient outcomes (n = 820), and 4) semistructured navigator interviews (n = 26). Outcomes of interest included 1) the number of ACP conversations completed, 2) navigator self-efficacy, 3) patient resource utilization, hospice use, and chemotherapy at EOL, and 4) navigator-perceived barriers and facilitators to ACP. RESULTS: From June 1, 2014 to December 31, 2015, 50 navigators completed Respecting Choices® First Steps ACP Facilitator training. Navigators approached 18% of patients (1319/8704); 481 completed; 472 in process; 366 declined. Navigators were more likely to approach African American patients than Caucasian patients (20% vs. 14%, P < 0.001). Significant increases in ACP self-efficacy were observed after training. The mean score for feeling prepared to conduct ACP conversations increased from 5.6/10 to 7.5/10 (P < 0.001). In comparison with patients declining ACP participation (n = 171), decedents in their final 30 days of life who engaged in ACP (n = 437) had fewer hospitalizations (46% vs. 56%, P = 0.02). Key facilitators of successful implementation included physician buy-in, patient readiness, and prior ACP experience; barriers included space limitations, identifying the "right" time to start conversations, and personal discomfort discussing EOL. CONCLUSION: A navigator-led ACP program was feasible and may be associated with lower rates of resource utilization near EOL.

Preeclampsia and the Risk of Future Vascular Disease and Mortality: A Review.

INTRODUCTION: Preeclampsia increases a woman's long-term risk of vascular disease and/or death including chronic hypertension, myocardial infarction, heart failure, stroke, and venous thromboembolism. The literature suggests that maternity care providers may be unaware of this association. METHODS: A database search was conducted examining the long-term effects of hypertensive disorders of pregnancy using MEDLINE, Scopus, CINAHL, ISI Web of Knowledge, and the Cochrane Database of Systematic Reviews. Inclusion criteria were: 1) English language, 2) peer-reviewed journals, 3) January 2000 to July 2015, 4) systematic reviews with or without meta-analyses, and 5) studies that addressed the relationship between hypertensive disorders of pregnancy and vascular disease such as hypertension, cardiovascular disease (CVD), and cerebrovascular diseases. RESULTS: Three systematic reviews with meta-analysis qualified for this review. They represented 48 unique studies from 20 countries and included a total of 3,598,601 women. Preeclampsia was associated with a 3-fold increased risk for developing chronic hypertension. Compared with normotensive women, those with preeclampsia experienced double the risk, or more, for CVD or CVD-related mortality. Preeclampsia was also associated with approximately double the risk for fatal or nonfatal stroke. DISCUSSION: Preeclampsia is associated with an increased risk for future chronic hypertension, CVD, cerebrovascular disease, and death. While evidence shows that women with cardiac risk factors may have a higher chance of developing preeclampsia, many women with preeclampsia have no CVD risk factors. Measures to prevent preeclampsia such as calcium supplementation for women with low calcium intake and low-dose aspirin for women with a history of more than one incident of preeclampsia or a preterm birth associated with preeclampsia are supported by evidence. Reduction of modifiable risks associated with CVD before, during, and after pregnancy is recommended. All care providers and women should be educated regarding these risks and the importance of pregnancy history to future health.

How important are autonomy and work setting to nurse practitioners' job satisfaction?

PURPOSE: Nurse practitioners (NPs) have reported aspects of their jobs that they are more and less satisfied with. However, few studies have examined the factors that predict overall job satisfaction. This study uses a large national sample to examine the extent to which autonomy and work setting predict job satisfaction. DATA SOURCES: The 2012 National Sample Survey of Nurse Practitioners (n = 8311) was used to examine bivariate and multivariate relationships between work setting and three autonomy variables (independent billing practices, having one's NP skills fully utilized, and relationship with physician), and job satisfaction. CONCLUSIONS: NPs working in primary care reported the highest levels of autonomy across all three autonomy measures, while those working in hospital surgical settings reported the lowest levels. Autonomy, specifically feeling one's NP skills were fully utilized, was the factor most predictive of satisfaction. In multivariate analyses, those who strongly agreed their skills were being fully utilized had satisfaction scores almost one point higher than those who strongly disagreed. Work setting was only marginally related to job satisfaction. IMPLICATIONS FOR PRACTICE: In order to attract and retain NPs in the future, healthcare organizations should ensure that NPs' skills are being fully utilized.

FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers.

Although the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) has become a chronic illness, disease-specific advance care planning has not yet been evaluated for the palliative care needs of adults with HIV/AIDS. This prospective, longitudinal, randomized, two-arm controlled clinical trial aims to test the efficacy of FAmily CEntered advance care planning among adults living with AIDS and/or HIV with co-morbidities on congruence in treatment preferences, healthcare utilization, and quality of life. The FAmily CEntered intervention arm is two face-to-face sessions with a trained, certified facilitator: Session 1) Disease-Specific Advance Care Planning Respecting Choices Interview; Session 2) Completion of advance directive. The Healthy Living Control arm is: Session 1) Developmental/Relationship History; Session 2) Nutrition. Follow-up data will be collected at 3, 6, 12, and 18 months post-intervention. A total of 288 patient/surrogate dyads will be enrolled from five hospital-based, out-patient clinics in Washington, District of Columbia. Participants will be HIV positive and ≥ 21 years of age; surrogates will be ≥ 18 years of age. Exclusion criteria are homicidality, suicidality, psychosis, and impaired cognitive functioning. We hypothesize that this intervention will enhance patient-centered communication with a surrogate decision-maker about end of life treatment preferences over time, enhance patient quality of life and decrease health care utilization. We further hypothesize that this intervention will decrease health disparities for Blacks in completion of advance directives. If proposed aims are achieved, the benefits of palliative care, particularly increased treatment preferences about end-of-life care and enhanced quality of life, will be extended to people living with AIDS.

Does Prior RN Clinical Experience Predict Academic Success in Graduate Nurse Practitioner Programs?

BACKGROUND: There is limited evidence on whether prior RN clinical experience is predictive of academic success in graduate nurse practitioner (NP) programs. The purpose of this study was to explore whether the frequently held assumption that more prior clinical experience is associated with better academic success in The George Washington University online NP programs. METHOD: Applications (n = 106) for clinical NP students entering from 2008-2010 were examined along with data on academic performance. RESULTS: No relationship was found between years of prior RN clinical experience and three educational outcome variables (cumulative grade point average [GPA], clinical course GPA, and having failed any courses or been put on probation). However, students with the most prior RN clinical experience were less likely to graduate in 4 years, compared with those with the least experience. CONCLUSION: These findings serve as a building block of empirical evidence for admissions committees as they consider entry requirements for NP programs.

Telephonic advance care planning facilitated by health plan case managers.

OBJECTIVE: The insurance plan case managers (CMs) of Priority Health, part of a regional healthcare system located in Michigan, work telephonically with frail patients who have multiple comorbidities. However, these CMs have lacked facilitation skills for advance care planning (ACP) discussions in this vulnerable population. In 2012, the findings of a six-month pilot study of telephonic ACP (TACP) with some of the plan's Medicare population were implemented with Medicare members under case management. METHOD: Case mangers were trained and certified by Respecting Choices® to introduce and facilitate ACP discussions telephonically utilizing both First Steps and Last Steps protocols. The CMs identified appropriate patients using hospitalization and emergency room utilization data, severity of illness, and diagnostic criteria. The primary goal was to complete both the ACP discussion and the documentation for each protocol on identified patients. They also attempted to schedule facilitated conversations with the patients' healthcare advocates present. RESULTS: During a 12-month period, 576 health plan members were offered First Steps discussions, with 198 interested in engaging in further ACP. Some 152 members were identified for Last Steps TACP using established criteria; discussions occurred with 56 members. TACP implementation resulted in 55 new or updated First Steps documents and 4 Last Steps documents. A total of 50 discussions included the designated healthcare advocate. SIGNIFICANCE OF RESULTS: Following TACP implementation with the Medicare CM team and evaluation of the results, processes and methods were instituted to increase engagement and completion of discussions and documents. These included enhancements to the electronic assessment and ongoing support of the CM team to increase the engagement of patients and advocates. Dissemination of the project to the entire Medicare CM team demonstrated opportunities and lessons learned for facilitated TACP discussions. The TACP model has the potential to be successfully utilized by other health insurance companies.

A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality.

PURPOSE: To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC). METHODS: Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion. RESULTS: Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (ß = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (ß = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above. CONCLUSIONS: Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.

Family-centered advance care planning for teens with cancer.

IMPORTANCE: Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE: To examine the efficacy of family-centered ACP. DESIGN AND SETTING: Two-group randomized controlled trial in a pediatric oncology program. PARTICIPANTS: Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012. INTERVENTION: Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. MAIN OUTCOME MEASURES: Statement of treatment preferences and Decisional Conflict Scale score. RESULTS: The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 ("treatment would extend my life by not more than 2 to 3 months"), intervention dyads demonstrated higher congruence (κ = 0.660; P < .001) vs control dyads (κ = -0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation. CONCLUSIONS: Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.

Effect of a disease-specific advance care planning intervention on end-of-life care.

OBJECTIVES: To compare patient preferences for end-of-life care with care received at the end of life. DESIGN: A randomized controlled trial was conducted with individuals with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care. SETTING: Two centers in Wisconsin with associated clinics and dialysis units. PARTICIPANTS: Of the 313 individuals and their surrogates who completed entry data, 110 died. INTERVENTION: During PC-ACP, the trained facilitator assessed individual and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of treatment preferences, and assisted the surrogates in understanding the patient's preferences and the surrogate's role. MEASUREMENTS: Preferences were documented and compared with care received at the end of life according to surrogate interviews or medical charts. RESULTS: Patients (74%) frequently continued to make their own decisions about care to the end. The experimental group had fewer (1/62) cases in which patients' wishes about cardiopulmonary resuscitation were not met than in the control group (6/48) but not significantly so. Significantly more experimental patients withdrew from dialysis than controls. CONCLUSION: Patients and their surrogates were generally willing to discuss preferences with a trained facilitator. Most patients received the care they desired at end of life or altered their preferences to be in accord with the care they could receive. A larger sample with surrogate decision-makers is needed to detect significant differences.