Examining Adherence Barriers in Pediatric and Adolescent HIV Patients – Year Two Lisa Rubin, Pharm D Student Candidate Linda Catanzaro, Pharm D Clinical Assistant Professor HIV Pharmaceutical Care Specialist University at Buffalo School of Pharmacy & Pharmaceutical Sciences © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Objectives l l l l Provide a brief overview of current HIV/AIDS statistical trends and how HIV viral activity is followed clinically. Discuss the importance of HAART (highly active antiretroviral therapy), adherence to HAART, and potential barriers to adherence in pediatric/adolescent populations. Discuss the need for improved HIV education and parenting for foster parents and caregivers and the need for improved access to comprehensive health care for foster youth. Discuss methods used to access adherence and strategies used to improve overall adherence. Discuss the importance of custody planning in families living with HIV. Describe the pediatric/adolescent patient population seen at the PACT Clinic at Women’s and Children’s Hospital of Greater Buffalo. Provide case study examples derived from PACT adherence consults to illustrate situations faced when working with pediatric/adolescent HIVinfected individuals and their families. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Global Estimates l At the end of 2004, it’s estimated that 2. 2 million children globally under the age of 18 were living with the HIV virus. l 640, 000 of these cases were diagnosed during 2004 alone. l As many as 90% of these children acquired the viral infection from their mothers during pregnancy (perinatal transmission) or through breastfeeding. http: //www. avert. org/children. htm © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV U. S. Estimates l l l When all 50 states are considered, CDC estimates that approximately 40, 000 persons become infected with HIV each year. At least 50% of these cases are in individuals aged 13 -24. Approximately 1 teenager in the U. S. is infected with HIV every hour. http: //www. cdc. gov/hiv/stats/hasrlink. htm © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Race/ethnicity of persons (including children) who received a diagnosis of HIV/AIDS in the U. S. , 2003 Based on data from 33 U. S. areas with longitudinal, namebased HIV reporting. http: //www. cdc. gov/hiv/PUBS/Facts/ At-A-Glance. htm Native American ~1% Asian/Pacific Islander ~1% Hispanic 16% Caucasian 32% African American 50% © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
AIDS Rates for Children <13 Years of Age by Race/Ethnicity - Reported in 2003 - 50 States and D. C. l The rate of AIDS among black children in 2003 was 1. 1 (per 100, 000)—a rate 11 times higher than among white children (0. 1) and more than 3 times higher than that of Hispanic children (0. 3). l These rates reflect the disproportionate racial/ethnic distribution of HIV and AIDS. http: //www. cdc. gov/hiv/graphics/images/l 262 -12. htm © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Pediatric Estimates in U. S. , 2003 l Approximately 4, 062 cases of HIV-infection were estimated in the U. S. pediatric population at the end of 2003. l 91% of these cases occurred due to perinatal transmission, despite advances in preventative transmission measures in pregnant women. http: //www. cdc. gov/hiv/stats/hasrlink. htm © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Progression From HIV to AIDS l The average duration from the time of initial HIV infection to the development of AIDS is about 10 years. l Thus, most young adults or adults living today with AIDS were likely infected as children or adolescents. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient Quality of Life l The management of HIV-infected young children and adolescents in the population is critical for delaying the progression to AIDS and for providing these individuals the opportunity for the best quality of life possible. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Effects of HIV on the Body l HIV attacks and weakens the immune system, making the body susceptible to opportunistic infections. l Without adequate viral suppression, progression to AIDS occurs more quickly as quality of life decreases. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Surrogate Markers for HIV/AIDS l Surrogate markers are measurements obtained from an individuals blood-work. l Clinicians measure levels of CD 4+ T-cells and HIV-RNA viral copies in the blood to track the disease progression. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Surrogate Markers for HIV/AIDS l CD 4+ T-cells l. Cells in the immune system for fighting off infection. l. Higher absolute CD 4+ counts and overall % translates into better immune status of the patient. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Surrogate Markers for HIV/AIDS l HIV-RNA Viral Load l Measures the amount of virus in the body per m. L of blood. l Goal of treatment is an “undetectable” viral load of <50 copies/m. L. l Thus, very low viral loads are indicative of medication efficacy for patients. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Review: l Goals of Surrogate Marker Measures in HIV/AIDS Tracking: l High CD 4+ T-cell counts l Undetectable HIV-RNA Viral Loads (<50 copies/m. L) l These Goals Help to Suppress Disease Progression to AIDS. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Treatment Principles l l The HIV virus actively replicates starting from the time of initial infection. HIV replication leads to immune damage and AIDS progression. HIV viral mutations can occur randomly and frequently if the virus is allowed to replicate. Medications can be taken by patients to suppress viral replication. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Treatment Principles l HAART l Highly l l Active Antiretroviral Therapy The HIV treatment of choice for suppressing viral load. Not a cure Age-specific guidelines for treatment exist (pediatric and adolescent/adult guidelines) The first regimen implemented has the best chance of adequately suppressing the virus. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Goals of HAART l l l Suppress viral replication (undetectable viral load <50 copies/m. L) Preserve patient immune status (high CD 4+) Delay disease progression to AIDS Prevent mortality/morbidity Improve patient quality of life (QOL) © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence to HAART l Adherence is a complex behavioral process that’s strongly influenced by both internal and external factors. It’s composed of how a patient and/or caregiver judges medication need versus a variety of other competing needs, wants, and concerns. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence to HAART l WHY IS ADHERENCE SO CRITICAL? l l l ≥ 95% adherence is needed for adequate viral suppression (a much greater demand than with other chronic diseases such as asthma or diabetes). For every 10% decrease in adherence, there is a 16% increase in HIV-related mortality. Just 2 missed days of HAART can lead to increased viral load and development of mutations. Viral mutations can lead to HAART resistance. Once resistance to antiretrovirals develops, it narrows the future treatment options for the patient. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence to HAART l Many factors play a role in adherence. l Studies have shown that adherence cannot be reliably predicted based upon demographic factors (age, gender, race, religion, occupation, socioeconomic status) © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Pediatric/Adolescent Adherence l Adherence in these populations is of special concern because the status of the caregiver as well as the child can affect adherence. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Consequences of Poor Adherence l l l Incomplete virologic response (not achieving an undetectable viral load <50 copies/m. L). Risky immunologic response and increased opportunistic infection susceptibility (low CD 4+ T-cell counts). Development of viral resistance to HAART. Decreased medication choices for the future. Increased risk of progression to AIDS. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Barriers l Adherence barriers can be grouped into these 3 general categories: Patient Specific Barriers Patient. Provider Barriers © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation Treatment Barriers
Patient-Specific Barriers to HAART l l l l Lack of knowledge of HAART resistance and disease progression. Lack of belief in the efficacy of HAART or trust in health care Prior adherence failure Lack of self-efficacy/capacity. Lack of family/social support. Lack of financial support/limited access to health care. Other issues prioritized above HAART adherence. Inability to set long-term goals. l l l l l Lack of motivation/forgetfulness. Alcoholism or substance abuse. Depression, anxiety, stress, or other mental illnesses. Unstable living conditions or negative life events. Erratic sleeping/eating patterns. Lack of organizational and coping skills. Lack of HIV status disclosure. Low perceived QOL. Feelings of invincibility. Denial of HIV status. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Pediatric/Adolescent Barriers to HAART l Children with HIV-infection are more likely to come from families that experience frequent negative life events, such as poverty, psychosocial complications [mental illness/substance abuse], hospitalization and/or death of loved ones. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Pediatric/Adolescent Barriers to HAART l Study Finding - Factors most associated with poor adherence: l l l poor child caregiver communication (especially of importance with adolescents, where medication responsibility is often shared) high caregiver stress level/caregiver depression negative stressful life events low perceived QOL lack of knowledge of medication resistance potential lack of social disclosure Mellins CA, Brackis-Cott E, Dolezal C, Abrams E. The Role of Psychosocial and Family Factors in Adherence to Antiretroviral Treatment in Human Immunodeficiency Virus-Infected Children. Pediatr Infect Dis J 2004 November; Vol. 23(11): pp. 1035 -41. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Knowledge, Capacity, Motivation l Considered 3 pivotal patient-related adherence factors. l Knowledge – understanding of HIV disease pathology and the potential consequences of non-adherence. l Capacity – belief in one’s ability to successfully follow a strict, life-long medication regimen. l Motivation – readiness to incorporate HAART into daily life and adapt as necessary to maintain full adherence. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
“Readiness to Change” l Readiness to commit to adherence with a chronic medication regimen can be measured by progression through 5 “stages of change: ” pre-contemplation l preparation l action l maintenance l © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Pediatric/Adolescent Adherence l Adherence in these populations is of special concern because the status of the caregiver as well as the child can affect adherence. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Depression and Adherence l Symptoms of Depression: Feeling sadness and hopelessness nearly everyday. l Loss of interest in once pleasurable activities/hobbies. l Loss of appetite/weight or gain in appetite/weight. l Disrupted sleeping patterns. l Agitation and irritability. l Inability to concentrate or lack of motivation. l Fatigue. l Excessive guilt or persistent thoughts about death. l Possible increased use of alcohol and/or illicit drugs. l © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Depression and Adherence l l Research supports a strong and consistent association between presence of depression in either the patient or caregiver and decreased medication adherence. Mental instability affects memory, concentration, and motivation, which are all vital components of adherence. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Depression and Adherence l Depression should not be viewed as a consequence of HIV, but rather as an independent disease that requires separate treatment. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Depression and Adherence l l l Premature discontinuation of antidepressant therapy and counseling services is a major issue. It may take 2 – 4 weeks for a patient to see benefit from antidepressant therapy and/or relief from side effects. Successful treatment of depression is key for subsequent management of HIV-infection. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Alcohol/Substance Abuse & Adherence l Substance dependence/addiction tends to present with multiple co-barriers to adherence: l l l l Mental instability Lack of motivation Lack of coping & prioritizing skills Lack of family support Financial instability Low perceived QOL Feelings of isolation © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Alcohol/Substance Abuse & Adherence l There exists concern for harmful drug-drug interactions between recreational drugs and HAART. l Whether the addiction is present in the patient or the caregiver, behavioral change intervention is critical. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Status Disclosure & Adherence l Many caregivers are reluctant to disclose the HIV status of children and adolescents directly to them for several reasons: l l l l Fear of death Feelings of guilt (especially if perinatal transmission) Feelings of denial Fear of inadvertent public disclosure Fear of discrimination/stigma Fear of the child’s emotional reaction Fear of losing custody of the child © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Status Disclosure & Adherence l Studies, however, have shown that when disclosure occurs in families living with HIV, both the caregiver and the child feel less stressed and/or depressed, and adherence can thus be improved. l Disclosure should be guided by the age, developmental and emotional stages, and health status of a child and should be accompanied by counseling to help the child develop a positive attitude towards life. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
HIV Status Disclosure & Adherence l l All adolescents should know their HIV+ status in order to follow preventative measures against transmission, especially for sexually active individuals. It is regarded an ethical obligation of health care personnel to disclose to adolescents their HIV + status. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient-Provider Barriers to HAART l l Poor healthcare providerpatient relationship, trust, and communication. Disparity between beliefs of the provider and the patient. Lack of positive reinforcement from the provider. Lack of patient/caregiver empowerment in health-care regimen decision-making. l l l Language/cultural barriers. Lack of consistent access to health care (especially of concern with foster care youth). Lack of collaboration between multiple health care services (defragmented health care). © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient-Provider Barriers to HAART l Overcoming Communication Barriers: l l l Ensure that all providers are empathetic and understanding. Correct patient’s misconceptions about HIV and treatment. Be aware of the cultural background of the household. Negotiate goals of treatment (include patient and/or caregiver in the decision-making process). Reinforce each positive treatment experience. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient-Provider Barriers – Foster Care l Foster children often receive inadequate health care for several reasons: l l l Poor planning. Lack of funding (state Medicaid systems rarely cover all the health care services these children require). Prolonged waiting for community-based services. Inadequate training of foster care parents in HIV homecare and health care access. Lack of coordination between various health care providers. Studies show that adolescents who age-out of foster care generally poorly prepared for independent living and lack knowledge of the social services available to them. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient-Provider Barriers – Foster Care l l Foster youth often see several different health care providers over the course of various placements. Maintaining up-to-date medical records or transferring medical records from location to location presents a major challenge. Coordination of health care teams and social services through improved communication is in the best interest of the child. Child welfare workers must be proactive in making sure all health care services collaborate efficiently. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient-Provider Barriers – Foster Care l Improved HIV parenting and training for foster care parents and respite caregivers in HIV disease pathology, universal precautions, and health care access is important in closing the gap to better health care for foster youth. (See directory of HIV/AIDS services) © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Patient-Provider Barriers – Foster Care l Education of adolescent foster care individuals on the resources available to them will also close the gap to health care access once these individuals transition into independent living. l l l l Healthcare Resources Permanency Planning Resources Mental Health/Psychosocial Support Resources School-Based Services Community-Based Services Faith-Based Services Recreational Programs (See directory of HIV/AIDS services) © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Treatment-Related Barriers to HAART l l l l Pill burden/ dosing regimen complexity. Away from home/change in daily routine. Difficulty incorporating medication into daily routine. Medication side effects/toxicity concerns. Formulation (pill vs. powder vs. liquid) restrictions. Storage concerns. Medication taste. l l l l Medication viewed as burden or constant reminder of disease. Taking dose at the wrong time. Drug holidays. Not following applicable food restrictions (ex. take on empty stomach for optimal absorption). Incorrect dose taken. Excess dose taken to “make up” for missed doses. Filling prescriptions late or not at all. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Pediatric/Adolescent Barriers to HAART l Study Finding – Three most common reasons reported for non-adherence: l l l Forgetfulness. Away from home/change in daily routine. Medication not in possession when needed. Murphy DA, Sarr M, Durako SJ, Moscicki AB, Wilson CM, Muenz LR. Barriers to HAART Adherence Among Human Immunodeficiency Virus-Infected Adolescents. Arch Pediatr Adolesc Med 2003 March; Vol. 157: pp. 249 -55. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Review: Adherence Barriers Patient-Related Patient-Provider Related © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation Treatment-Related
Adherence Assessment Methods l l l Currently, there are no readily available tests to measure HIV drug levels in the body. No gold-standard method of adherence assessment to HAART is currently in effect. There currently exists a lack of clinical standardization in adherence assessment of HAART. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods l When measuring a patient’s adherence to HAART, it’s important to “assess” adherence and not “assume” adherence. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods l l l l Caregiver-reports, patient-reports, provider reports. Pharmacy refill tracking. Appointment keeping with pharmacotherapy specialists. MEMS caps (medication event monitoring system caps that record the day and time for every time a medication bottle is opened). Medication knowledge surveys/questionnaires. Surrogate markers (viral load & CD 4+ counts have been shown to be good predictive measures of adherence). Home visits for on-the-spot pill counts. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods l l Of all measures available, provider reports are the most poorly correlated with actual adherence rates. MEMS caps provide an accurate measure of adherence, yet are expensive and can be ineffective if patients utilize pillboxes. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods l No single approach is better than another. l A combination of assessment methods is the best approach. l It is up to the patient and/or caregiver and the provider to determine the method that best fits the patient’s lifestyle. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods l Issue of Social Desirability in Assessing Adherence to HAART: l Social desirability is where the patient and/or caregiver feels the need to report good adherence when the true level of adherence is inadequate. l Social desirability can jeopardize the usefulness of assessment tools and the health of the patient. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods – Modified Morisky Scale Question Motivation Knowledge 1) Do you ever forget to take your medication(s)? Yes/No 2) Are you careless at times about taking your medication(s)? Yes/No 3) Do you sometimes stop taking your medication(s) if you feel better? Yes/No 4) Do you sometimes stop taking your medication(s) if they make you feel worse? Yes/No 5) Do you know the long-term benefits of full adherence to your medication(s)? Yes/No 6) Do you sometimes forget to refill your medication(s) on-time at the pharmacy? Yes/No © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods – Modified Morisky Scale l This medication adherence questionnaire helps identify any inadequacies in patient/caregiver knowledge of HIV disease and motivation to follow full adherence. l Recall knowledge, capacity, and motivation are 3 pivotal adherence factors that can predict adherence success. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Assessment Methods – Sample Medication Knowledge Survey Name of Medication Why is it taken How much is taken for each dose When is each dose taken Where is the medication stored © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation When is the next refill date Any side effects
Adherence Assessment Methods l Questions to Ask at Every Patient/Caregiver Encounter to Assess Adherence: 1) When was the last time you took your medicine? 2) How many doses have you missed in the last 2 days, 7 days, and 30 days? 3) What were the reasons for any missed doses? © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Tools: l l l l Signed adherence contract Buddy system Motivational interviewing, continued patient education, adherence follow-ups Provide incentives ($$, food vouchers, movie passes, transportation reimbursement for appointment keeping, etc) Directly Observed Therapy Home visits/pharmacy checks Pillboxes/MEMS caps Simplified drug regimen (compliment patient’s lifestyle, eating and sleeping patterns) l l l l Psychosocial services Peer advocates Multidisciplinary health care team Engage family and friends Verify “state of readiness” in drug-naïve patients Disclosure Reminder cues: - Calendars and charts - Wallet cards and diaries - Alarms, beepers - Pagers, cell phones, PDAs - Phone calls, emails © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Tools: l l http: //www. easyreminders. com http: //www. ideamoms. com l l Both provide laminated medication reminder charts http: //www. medimom. com l Completely confidential service that utilizes a cell phone, PDA, pager, or email to remind patients/caregivers when and how to take medication © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Strategies: l l Educate patient on HIV disease and consequences of non -adherence. Educate patient on medication regimen: l l l l l Why medication is needed Special food restrictions for best absorption What to do if a dose is missed Common and serious side effects What to do for medication refills Storage considerations Have patient and/or caregiver “repeat back” instructions Provide written materials and contact information. Schedule follow-up appointment. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Strategies: l Adolescents often think in concrete terms. l Provide instructions using real-life examples to help them personalize the information and always follow-up with written information. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Strategies: l There exists a general 4 -step collaborative medication model that is implemented in practice for the development of good adherence practices: 1) Education 2) Preparation 3) Monitoring 4) Support © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Strategies: 1) Education - Identify any potential barriers to adherence 2) Preparation - Following informed consent and signing of an “adherence contract, ” create and maintain an empathetic patientprovider or caregiver-provider alliance to establish open communication and trust. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Adherence Intervention Strategies: 3) Monitoring - Assess level of adherence. 4) Support - Identify strategies or multipletargeted interventions to improve adherence, and provide support through ongoing followup consults and referrals to available resources. (See directory of HIV/AIDS services) © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Review of Adherence Intervention Strategies: l l l l l Start when the patient is ready. Develop a trusting patient/caregiver – provider relationship. Treat depression and substance addictions (preferably before initiating HAART). Choose a simplified mediation regimen that fits the patient’s lifestyle and not vice-versa. Educate the patient on the medication regimen and consequences of non-adherence. Develop continuing patient-education programs. Increase support through family, friends, and health care services. Address barriers to adherence. Use pillboxes and other medication reminders. Give positive reinforcement and maintain follow-up appointments. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Custody Planning for Families Living With HIV l Many HIV+ caregivers delay or avoid custody planning for reasons similar to avoidance of disclosure: l l l l Fear of death Feelings of guilt Feelings of denial Fear of inadvertent public disclosure Fear of discrimination/stigma Fear of the child’s emotional reaction Fear of losing custody of the child in the present © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Custody Planning for Families Living With HIV l The first longitudinal study (5 -years) that observed custody plans of families living with HIV had these results: l l l Only 14. 5% of 296 HIV-infected parents in the study maintained a custody plan over the 5 -year period. 33% did not plan at all over the 5 -year period. 45% of the parents died with no custody plan at the end of the 5 -year period. Depressed or mentally unstable parents were less likely to make custody plans. Parental HIV status disclosure, any substance use, education level, and ethnicity were unrelated to custody planning. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Custody Planning for Families Living With HIV l l l Custody plans typically involved extended-family members for 65% of families (versus foster care). Custody planning was less likely in families with only adolescent-aged children and more likely in families with children of mixed-ages. Many families had unrealistic expectations for adolescents to care for younger siblings. Adolescents need more support in the transition into independent living and education on health-care services available to them. Custody planning is a critical area of child welfare intervention. Rotheram-Borus MJ, Lester P, Wang PW, Shen Q. Custody Plans Among Parents Living with Human Immunodeficiency Virus Infection. Arch Pediatr Adolesc Med 2004 April; Vol. 158: pp. 327 -32. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Custody Planning for Families Living With HIV – Kinship Care vs. Non-Kinship Care l Pros of Kinship Care: l l Sense of familial obligation to provide sound care. Continuation of cultural and/or spiritual beliefs, which allows for familiar structure for the child. Maintenance of a sense of family ties. Cons of Kinship Care: l l l Sometimes problems present in the immediate family can also be present in the extended family (alcoholism, addiction, financial instability, etc. ). Though a sense of familial obligation may exist, the resources and capability to provide sound care may not. Extended family may live out-of-state, pulling child away from familiar surroundings, friends, etc. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Custody Planning for Families Living With HIV – Kinship Care vs. Non-Kinship Care l Child welfare and social workers can intervene in the custody planning process by helping families identify possible sources of kinship care and determine whether kinship care will provide the most sound care for the child. l l l Does the kinship source have a stable home-life, financial situation, and sound parenting skills? Does the kinship source have any psychosocial issues? Does the kinship source genuinely want to provide care? © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Parents and Children Together (PACT) The PACT Pediatric/Adolescent HIV-Infected Patient Population at the Women’s and Children’s Hospital of Greater Buffalo © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l l Total Number of Patients Followed in Year 2 of this project: 28 The age groupings of the PACT population were as follows: Ages 5 and under: 2 Ages 6 -12: 9 Ages 13 -15: 8 Ages > 15 (aging-out): 9 © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l 25 out of 28 patients acquired the HIV virus through perinatal transmission. l 3 out of 28 patients acquired the HIV virus through heterosexual relations. l 0 out of 28 patients acquired the HIV virus through homosexual relations or IVDU (intravenous drug use). © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l l Adherence interviews were held separately for pediatric and adolescent patients every other week or as needed. Monthly case conferences were held by the multidisciplinary PACT health care team (pharmacists, doctors, nurses, psychologists, counselors, social workers) to discuss specific patients’ progress. Adherence interventions utilized during year 1 of this study continued to be implemented, including adherence follow-up questionnaires, patient-reporting and/or caregiver-reporting of missed doses in the past 2 days, 7 days, and 30 days along with explanations, pillboxes, nurse home-visits and phone-call reminders, pharmacy refill checks, and psychosocial support. HIV Pharmcotherapy specialists and nurses were available by pager. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo Living Situations 17/28 with ≥ 1 Biological Parent 11/28 with ≥ 1 Kinship Relative 5/28 with Foster Parent(s) 3/28 Independent Living 2/3 has child (one HIV+ other HIV-) 1/17 has child (HIV-) © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo Documented Depression Present in Patient Present in Caregiver Present in Both Not Present or Unknown 14 out of 28 13 out of 28 4 out of 28 © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l In addition to depression, 15 out of 28 patients manifest some other psychological deficit, including ADHD, oppositional defiance disorder, mental retardation, and/or a general learning disability. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo Documented Alcohol and/or Substance Use Present in Patient Present in Caregiver Present in Both Not Present Or Unknown 6 out of 28 14 out of 28 5 out of 28 4 out of 28 © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l l l In terms of family history, 19 out of 28 patients have a biological parent(s) with a history of depression/substance use (regardless of whether these adults are the current caregivers or not). This number may be an underestimate because data was not available for all patients on this subject. This reinforces the general fact that HIV-infected youth tend to have unstable backgrounds. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo HAART Administration Caregiver Patient Both Not on HAART 10 out of 28 5 out of 28 11 out of 28 2 out of 28 © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l Adherence was defined as follows: l good adherence = missing 0 -2 doses/month l fair adherence = missing 3 -5 doses/month l poor adherence = missing >5 doses/month © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo Patient/Caregiver Reported Adherence Good Adherence Fair Adherence Poor Adherence 18 out of 26 6 out of 26 2 out of 26 © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l l All 6 patients in the fair adherence category manifest documented cases of depression in addition to other psychosocial barriers to adherence. Lack of disclosure, patient and caregiver depression, and lack of motivation were the main concerns for the patients in the poor adherence category. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l The three main reasons given for missed doses in the fair/poor adherence groups were: l Falling asleep l Forgetting l Running out of medication before picking up refills at the pharmacy © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l Reasons Reported for Missed Doses In All Groups: l l l Did not have medication on hand at the time of the dose Too busy at the time of the dose Disrupted daily routine Didn’t want to take medication in front of others Didn’t want to be reminded of HIV status © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l The interventions implemented in these cases were: l l l l Pillboxes Nurse phone-call reminders/home visits Pharmacy refill checks Recommendations for steadier sleeping patterns Psychosocial support Steps towards disclosure Motivational interviewing/ ongoing adherence assessment appointments © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l More time is needed before an accurate assessment can be made as to the effectiveness of these interventions implemented by the PACT team. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
The PACT Pediatric/Adolescent HIV-Infected Patient Population at Women’s and Children’s Hospital of Greater Buffalo l l Due to the small size of the PACT patient population, it is difficult to extrapolate data to the general population. Case studies derived from patient data in this population will be used to illustrate what issues to anticipate and what adherence strategies to implement in a clinical setting. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #1 - History l Patient: 15 year old African American male l Patient became HIV-infected through perinatal transmission. Patient’s mother had a history of cocaine use and alcoholism; she died of AIDS in 2003. Father isn’t involved in care (out-of-state). Patient has been placed in foster care with sister (HIV-) in the past. Patient’s maternal grandmother, who admits to alcoholism, has legally adopted patient (and sister) and shares medication administration responsibilities with the patient. Patient is clinically depressed and has a history of conduct disorder, anger mismanagement, and behavioral issues at school. He tests in the low average range for all academic skills. Patient has shown good adherence through undetectable viral loads. There’s concern that the patient has started to experiment with drugs. l l l © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #1 - Assessment l l l l Patient has untreated depression. Patient is in the “aging-out” transition into the Adolescent Clinic. Patient is successfully sharing medication responsibility with his caregiver yet needs preparation for future independent living. Patient needs anger management and behavioral counseling to deal with his grief over his mother’s death. Patient would benefit from peer-supported group discussions. Patient ‘s drug-use needs to be determined. Patient’s knowledge of HIV transmission, safe sex measures, and social services access needs to be determined. Despite sustained undetectable viral loads, patient’s drug regimen knowledge needs to be continually assessed. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #1 - Assessment l Problems Identified: – – – – Untreated Depression/Behavioral Coping Anger Mismanagement Learning Disability Possible Substance Use Education Risk Reduction Health Maintenance/Health Care Access © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #1 - Intervention l l PACT set up individual weekly counseling sessions, anger management counseling, as well as group counseling with HIV-infected male peers. His substance use was determined to be negative but will be continually monitored. Patient was educated on HIV transmission risks. In addition to after-school programs he participates in through the Boys’ and Girls’ Clubs, he was informed of activities available through the YMCA and his local church. Since patient exhibits good adherence with HAART, his readiness to begin antidepressant therapy was verified, and an antidepressant medication regimen was implemented. Patient was counseled on how to take the medication and what side effects to look for. A follow-up was scheduled for 1 -month to assess the antidepressant regimen. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #1 – Follow-Up Tasks l l Check-up on patient’s recent pharmacy refills. Schedule annual dental and eye exams. Verify the patient’s progress in high school in a regular classroom setting. Assess his progress in counseling and if current antidepressant is successfully managing his depression. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #2 - History l Patient: 20 year old African American female l Patient became HIV-infected through perinatal transmission. Patient underwent a C-section in 2004. She is the primary caregiver of her child (born HIV-) and has full responsibility for her own medication regimen. Patient currently lives on her own and is in-and-out of employment. She exhibits slight mental retardation and has unrealistic career goals (ex. talks about becoming a lawyer). She has an unstable, “hot and cold” relationship with the father of the child. Patient has major depression and a history of anxiety and opiate abuse. Patient reports good HAART adherence and that she “loves her meds. ” Her viral load is currently at 107 copies/m. L (not at undetectable goal of <50). Patient has a history of nutritional deficiency. There’s concern for patient’s ability to handle independent living and motherhood without compromising HIV management and her health. l l l l © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #2 - Assessment l l l l Patient has major depression. Patient is currently free of substance use but falls into a risk group. Patient is in an emotionally abusive relationship. Patient needs training in judgment and problem solving skills. Patient’s level of disease coping needs to be evaluated. Patient’s viral load is near goal but not at goal of undetectable. Her drug regimen knowledge needs to be continually assessed. Patient’s parenting skills need to be assessed. Patient’s knowledge of HIV transmission, safe sex measures, and social service access needs to be determined. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #2 - Assessment l Problems Identified: – – – – – Depression Parenting Skills/Coping Skills/Problem Solving Skills Unstable Relationship Parenting Support Learning Disability/Financial Stability Goal-Setting Education Risk Reduction/Risk Behaviors Health Maintenance/Health Care Access © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #2 - Intervention l l l PACT set up individual weekly counseling sessions, peer counseling, and regular home visits. Patient has been encouraged to begin setting short-term and long-term goals for herself, such as sustaining a job, improving adherence to HAART and antidepressant medications, increasing her motivation, continuing to abstain from alcohol and substance use, removing herself from an emotionally abusive relationship, and providing better care and nutrition for her child and herself overall by utilizing individuals in her established support circle and utilizing social services (AIDS Community Services, American Red Cross, AIDS Alliance of Western NY, Child & Family Services, ECMC, Life Transitions Center, Horizon Health Services, and the Benedict House). Patient has been encouraged to take parenting day by day. Patient was educated on HIV transmission risks. The birth control patch does not protect against STDs/HIV transmission. Patient has seen a nutritionist through PACT services to educate her on a healthy diet for herself and her child. Patient was educated on stress-relieving tactics, such as deep breathing, warm baths, stretching, soothing music, repetition of a soothing phrase, a diary. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #2 – Follow-up Tasks l l l l l Check-up on patient’s recent pharmacy refills. Schedule annual dental and eye exams. Check-up on her child’s development. Check-up on patient’s job status and nutritional status. What goals has she set for herself since the last consult? Assess patient’s progress in counseling. Assess patient’s adherence to HAART/antidepressant therapy. Verify patient’s abstinence from alcohol/substance use. Schedule follow-up appointment. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #3 - History l Patient: 14 year old African American male l Patient became HIV-infected through perinatal transmission. Patient currently lives with father, a recovering alcoholic (HIV-) with a history of substance use and depression. Patient’s mother (HIV+), an active substance abuser, moved out in August of 2003. Patient diagnosed with major depression in October of 2003. He has been on antidepressant therapy in the past, with positive results, but discontinued therapy due to fear of disclosure of his need for antidepressant therapy and fear of sexual side effects. Therapy was restarted as of February of 2005. Patient suffers a slight learning disability and has a history of aggressive and disruptive behavior. He has been suspended from school several times and was recently arrested on charges of riding in a stolen vehicle and being in company of others in possession of cocaine. l l © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #3 - History l l l l There’s concern over father’s threat to give up custody if the patient refuses to take ownership of his life and avoid negative outside influences. Father wants patient to stop using his disease as a crutch for his behavior. He feels the patient needs “tough love. ” Patient disclosed his HIV+ status to school officials in the beginning of 2005 and has felt a sense of discrimination since this disclosure. Patient is not on HAART therapy. He is currently in the stage of preparation. Patient denies substance use, but the father believes the patient actively smokes marijuana. Patient has a poor sibling relationship with his sister. His sister recently moved out, though, which has allowed the patient to interact better with his father at home. Patient is interested in activities through the Boys’ and Girls’ Clubs but has a transportation barrier. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #3 - Assessment l l l Adherence to reinstated antidepressant medication needs to be solidified before starting patient on HAART. Patient has low CD 4+ counts and a high viral load. Although his surrogate markers remain fairly stable, his immune system is at risk if he doesn’t begin HAART soon. However, it is more risky to begin HAART if the patient is not truly ready to accept responsibility and follow complete adherence. Patient needs to progress from a stage of preparation to one of action in order to begin HAART to avoid potential hospitalizations and opportunistic infections. Patient’s knowledge of HIV disease, transmission, and drug resistance potential along with safe sex measures and social service access needs to be determined. Patient needs training in behavioral and coping skills. Patient’s drug abstinence needs to be verified. His home-life also needs to be assessed. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #3 - Assessment l Problems Identified: – – – – – Depression Possible Substance Use Behavioral Modification Adherence Learning Disability Goal-setting Education Initiation of HAART Risk Reduction/Risk Behaviors Health Maintenance/Health Care Access © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #3 - Intervention l l Since February 2005, PACT set up individual weekly counseling sessions through it’s own services as well as AIDS Community Services and has also begun bimonthly peer counseling. Patient has shown positive feedback from peer-to-peer support. An ACS educator made several home visits to reinforce the patient’s knowledge of HIV disease, the consequences of lack of drug therapy, the goal of undetectable viral load levels once drug therapy begins, and the consequences of non-adherence. Patient reported feeling “stupid” because there was so much he was unaware of. Antidepressant therapy has been reinstated, and the patient’s mood and demeanor have greatly improved. Patient reports increased energy and decreased agitation. Patient has been given a pillbox and educated on the importance of depression management before starting HAART. A PACT nurse has made regular home visits and phone-call reminders. Currently looking into transportation services through the Boys’ and Girls’ Clubs and/or the YMCA for future after-school programs. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
CASE STUDY #3 – Follow-Up Tasks l l l Check-up on patient’s recent pharmacy refills for his antidepressant medication. Assess patient’s progress in counseling/motivational interviewing. Verify patient’s and father’s abstinence from substance use. Verify patients plans for high school and whether resource classes will be provided. Schedule follow-up appointment to assess motivation and capacity level to begin HAART. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Useful Link: l A very comprehensive listing of area resources, publications, and internet links: http: //aidsnetwork. net/ © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Conclusion l Adherence is a collaborative process between a patient and/or caregiver and a multidisciplinary health care team. The patient and/or caregiver should be provided with continuing support, adherence education, motivation, and confidentiality in order to be empowered participants in the health care and disease management process. © 2004 -2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
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