Maureen E. Lyon

Who Will Speak for Me? Improving End-of-Life Decision-Making for Adolescents With HIV and Their Families

OBJECTIVES. The purpose of this research was to test the effectiveness of a model of family/adolescent-centered advance care planning for adolescents living with HIV and their families for increasing congruence and quality of communication while decreasing decisional conflict. PATIENTS AND METHODS. Ours was a 2-group, randomized, controlled trial in 2 hospital-based outpatient clinics in Washington and Memphis from 2006 to 2008. Participants (N = 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV/AIDS and surrogates/families aged ≥21 years. Three 60- to 90-minute sessions were conducted 1 week apart via a semistructured family interview with a trained/certified interviewer. Each session encompassed, respectively: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Controls received (1) developmental history, (2) safety tips, and (3) future plans. Family congruence was measured by the Statement of Treatment Preferences and adolescent decisional conflict by the Decisional Conflict Scale, immediately after session 2. Communication was measured by the Quality of Participant-Interviewer Communication Scale after each session. RESULTS. Adolescent demographics were as follows: mean age was 16 years; 40% were boys; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Significantly increased congruence for testing the difference of the 2 κ values for the 2 conditions was observed for intervention versus control dyads. Intervention adolescents reported feeling significantly better informed about end-of-life decisions. Intervention adolescents and all of the surrogates were more likely to feel that their attitudes and wishes were known by the interviewer over time. Intervention families, significantly more so than controls, rated the overall quality of discussion as very good to excellent. CONCLUSIONS. Family-centered advance care planning by trained facilitators increased congruence in adolescent/surrogate preferences for end-of-life care, decreased decisional conflict, and enhanced communication quality. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.

A profile of children with complex chronic conditions at end of life among Medicaid beneficiaries: implications for health care reform.

BACKGROUND As the United States braces for full implementation of health care reform, the eyes of the nation are on Medicaid. The large number of newly eligible Medicaid beneficiaries may challenge health care resources and ultimately impact quality of care. This is a special concern among current Medicaid beneficiaries such as children with complex chronic conditions (CCCs) who have significant health care needs, especially at end of life (EOL). Yet, a comprehensive profile of these children is lacking. OBJECTIVE To understand the demographic and health characteristics, health care utilization, and expenditures among Medicaid children with CCCs at EOL. METHODS Our study used a retrospective cohort design with data from the 2007 and 2008 California Medicaid data files. Descriptive statistics were used to profile children in the last year of life. RESULTS We found a diverse group of children who suffered with serious, multiple chronic conditions, and who accessed comprehensive, multidisciplinary care. Most children had neuromuscular conditions (54%), cardiovascular conditions (46%), and cancer (30%). A majority (56%) had multiple CCCs. Children with CCCs received comprehensive care including hospital inpatient (67%), primary (82%), ancillary (87%), and other acute care services (83%); however, few children utilized hospice and home health care services (26%). Significant age differences existed among the children. CONCLUSIONS The current California Medicaid system appears to provide comprehensive care for children at EOL. The underutilization of hospice and home health services, however, represents an opportunity to improve the quality of EOL care while potentially reducing or remaining budget neutral.

Adolescent end of life preferences and congruence with their parents' preferences: Results of a survey of adolescents with cancer

Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers.

Psychosocial aspects of chronic illness in adolescence.

Success in the survival of children with significant medical conditions has resulted in a dramatic increase in the prevalence of adolescents with chronic illness. Unfortunatelly, the traditional biomedical approach does not prepare practitioners for the complexities of managing chronic illness, because numerous psychosocial factors are involved. This article will address the need for integrating psychosocial issues into the assessment and treatment of the chronically ill adolescent. Assessment of the teen should incorporate an understanding of the developmental stages of adolescence, a review of how these developmental tasks are being accomplished, a discernment of individual characteristics, and knowledge of the family and community to which they belong. Management should take into account the phases of illness (acute, chronic or terminal) and encourage empowerment of the adolescent and family in decision making. A team approach that is community—based, comprehensive, and culturally appropriate is ideal.

Detecting HIV Associated Neurocognitive Disorders in Adolescents: What Is the Best Screening Tool?

PURPOSE To examine the ability of the HIV-Dementia Scale (HDS) and Mini Mental State Exam (MMSE) to detect encephalopathy in adolescents living with human immunodeficiency virus (HIV) and/or acquired immunodeficiency syndrome (AIDS). METHOD The study was based on chart review (N = 71) from 1999 to 2006, extracting data from psychological testing, disease classification, and demographic variables. HDS and MMSE scores were independent. Diagnosis of encephalopathy used American Academy of Neurology Criteria. Receiver Operating Characteristic Curves were plotted. RESULTS Six patients had encephalopathy. The HDS identified five of these cases (83% sensitivity, 76% specificity). The MMSE identified three cases (50% sensitivity, 92% specificity). CONCLUSION Based on the study results, the HDS appears to be clinically useful.

Emotional and behavioral problems and mental health service utilization of youth living with HIV acquired perinatally or later in life

Abstract This study sought to examine predictors of psychological symptoms and psychiatric service receipt among youth with HIV. Data were from the baseline assessment of Adolescent Impact, a study of 13–21-year-old youth with HIV in three US cities. Between August 2003 and February 2005, participants completed the age-appropriate youth or adult self-report symptom checklists (Achenbach system of empirically based assessment) and reported their psychiatric treatment history. Psychiatric diagnoses were abstracted from medical records. The 164 participating youth living with HIV were Black (81%), female (52%), Heterosexually identified (62%), and perinatally HIV-infected (60%). Thirty-one percentage reported levels of internalizing (i.e., self-focused/emotional), externalizing (i.e., outwardly focused/behavioral), or overall symptoms consistent with clinical psychopathology. In multivariate analyses, questioning ones sexual identity was associated with greater internalizing problems, whereas identifying as Bisexual was associated with greater externalizing problems (p<0.05). Symptoms were not associated with HIV transmission group. Participants with ≥1 composite score within the clinical range were more likely to have received ≥1 psychiatric service (Odds ratio (OR): 2.51; 95% confidence interval (CI): 1.22, 5.13) and a psychiatric diagnosis in the past year (OR: 2.16; 95% CI: 1.09, 4.27). However, 27% with clinically elevated scores had never received psychiatric care. Results suggest that among youth with HIV, those who identify as Bisexual or Questioning are at greatest risk for emotional and behavioral problems. Despite available mental health services, some youth with HIV are not receiving needed mental health care. Enhanced evaluation, referral and mental health service linkage is needed for these high-risk youth.

Is it safe? Talking to teens with HIV/AIDS about death and dying: a 3-month evaluation of Family Centered Advance Care (FACE) planning – anxiety, depression, quality of life

Purpose To determine the safety of engaging HIV-positive (HIV+) adolescents in a Family Centered Advance Care (FACE) planning intervention. Patients and methods We conducted a 2-armed, randomized controlled clinical trial in 2 hospital-based outpatient clinics from 2006–2008 with HIV+ adolescents and their surrogates (n = 76). Three 60–90 minutes sessions were conducted weekly. FACE intervention groups received: Lyon FCACP Survey©, the Respecting Choices® interview, and completion of The Five Wishes©. The Healthy Living Control (HLC) received: Developmental History, Healthy Tips, Future Planning (vocational, school or vocational rehabilitation). Three-month post-intervention outcomes were: completion of advance directive (Five Wishes©); psychological adjustment (Beck Depression, Anxiety Inventories); quality of life (PedsQL™); and HIV symptoms (General Health Self-Assessment). Results Adolescents had a mean age, 16 years; 40% male; 92% African-American; 68% with perinatally acquired HIV, 29% had AIDS diagnosis. FACE participants completed advance directives more than controls, using time matched comparison (P < 0.001). Neither anxiety, nor depression, increased at clinically or statistically significant levels post-intervention. FACE adolescents maintained quality of life. FACE families perceived their adolescents as worsening in their school (P = 0.018) and emotional (P = 0.029) quality of life at 3 months, compared with controls. Conclusions Participating in advance care planning did not unduly distress HIV+ adolescents.

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

ABSTRACT 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.

Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): Design and methods

As life expectancy increases for adolescents ever diagnosed with AIDS due to treatment advances, the optimum timing of advance care planning is unclear. Left unprepared for end-of-life (EOL) decisions, families may encounter miscommunication and disagreements, resulting in families being charged with neglect, court battles and even legislative intervention. Advanced care planning (ACP) is a valuable tool rarely used with adolescents. The Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle study is a two-arm, randomized controlled trial assessing the effectiveness of a disease specific FAmily CEntered (FACE) advanced care planning intervention model among adolescents diagnosed with AIDS, aimed at relieving psychological, spiritual, and physical suffering, while maximizing quality of life through facilitated conversations about ACP. Participants will include 130 eligible dyads (adolescent and family decision-maker) from four urban cities in the United States, randomized to either the FACE intervention or a Healthy Living Control. Three 60-minute sessions will be conducted at weekly intervals. The dyads will be assessed at baseline as well as 3-, 6-, 12-, and 18-month post-intervention. The primary outcome measures will be in congruence with EOL treatment preferences, decisional conflict, and quality of communication. The mediating and moderating effects of threat appraisal, HAART adherence, and spiritual struggle on the relationships among FACE and quality of life and hospitalization/dialysis use will also be assessed. This study will be the first longitudinal study of an AIDS-specific model of ACP with adolescents. If successful, this intervention could quickly translate into clinical practice.

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.