Summary Table of References

Summary Table of References

(Journal Articles, Reports, Guidelines, Websites)

Project Title: Examining Adherence Barriers in Pediatric and Adolescent HIV

Patients – Year Two

Lisa Marie Rubin, Pharm.D. Student

Linda Catanzaro, Pharm.D., Clinical Assistant Professor

State University of New York at Buffalo, Dept. of Pharmacy Practice

Meg Brin, Child Welfare Administrative Director

Michelle Barbarossa, Child Welfare Trainer

Chelly Coyle, Independent Living Trainer

RC01.01 Independent Living Network Training and Technical Assistance

Funding for this research project was provided by NYS Office of Children and Family Services, Contract year 2004: Project 1037122, Award: 31183; Contract year 2005: Project 1044698, Award 34851, through the Center for Development of Human Services, College Relations Group, Research Foundation of SUNY, Buffalo State College.

Reference / Key Points / Subject Category(s)
American Academy of Pediatrics, Committee on Early Childhood, Adoption, and Dependent Care. Health Care of Young Children in Foster Care. Pediatrics 2002 March; Vol. 109(3): pp. 536-40. / ▪ Most children enter foster care due to abuse/neglect, parental substance abuse, extreme mental illness, and/or HIV+ status, extreme poverty, homelessness.
▪ Children in foster care generally have greater health care needs than children not in foster care.
▪ Foster children often receive inadequate health care due to poor planning, lack of access, lack of funding, prolonged waiting for community-based services, lack of coordination between various health care providers (defragmentation of care)
▪ Foster children are usually not up-to-date on their immunizations.
▪ All children entering foster care should have an initial physical/mental assessment before placement and 1-month after placement, with ongoing follow-ups.
▪ Foster care parents often have inadequate training in HIV care and health care access.
▪ State Medicaid systems rarely cover all the health care services these children require. / Foster Care/Education
Health Care Needs
American Academy of Pediatrics, Committee on Pediatric AIDS. Disclosure of Illness Status to Children and Adolescents with HIV Infection. Pediatrics 1999 January; Vol. 103(1): pp.164-6. / ▪ Patients are living longer due to improvements in medication therapy, so disclosure is becoming more common.
▪ Many parents avoid disclosure to their children due to denial, sense of guilt, stigma, family discrimination, fear of child(s)’ emotional health, fear of inadvertent disclosure outside the home.
▪ Studies have shown parents who do disclose their child(s)’ status suffer less depression.
▪ Pediatric symptomatic patients should be informed of their illness, but not necessarily their diagnosis.
▪ Adolescents should know their HIV status and should be educated on treatment and sexual health. Medical staff has an ethical obligation to inform adolescents of their HIV status. / HIV+ Status Disclosure
American Academy of Pediatrics, Committee on Pediatric AIDS. Education of Children with Human Immunodeficiency Virus Infection. Pediatrics 2000 June; Vol. 105(6): pp.1358-60. / ▪ HIV+ school-aged children need to stay up-to-date with their immunizations.
▪ Children with HIV+ status may show cognitive developmental problems and require additional services in schools.
▪ Confidentiality about HIV status should be maintained in schools, with parental consent required for disclosure.
▪ School personnel must be educated about HIV standard precautions and confidentiality. / HIV+ Status Disclosure
Health Care Needs
Education
American Academy of Pediatrics, Committee on Pediatric AIDS. Identification and Care of HIV-Exposed and HIV-Infected Infants, Children, and Adolescents in Foster Care. Pediatrics 2000 July; Vol. 106 (1): pp.149-53. / ▪ Newborns discharged into foster care are 8 times more likely to have been born to HIV-infected women than are newborns that discharge with their biological parents.
▪ All foster care children should be screened for HIV+, whether symptomatic or not.
▪ HIV+ children may remain asymptomatic for years. Anemia, poor growth, and developmental delay are red flags to look for.
▪ Foster care parents often have inadequate training in HIV health care and access. / Foster Care/Education
Health Care Needs
American Academy of Pediatrics, Committee on Pediatric AIDS. Planning for Children Whose Parents Are Dying of HIV/AIDS. Pediatrics 1999 February; Vol. 103(2): pp.509-11. / ▪ Young children and adolescents who enter foster care due to death of HIV-infected parents(s) are generally from families who experience instability, poverty, discrimination, and lack of access to services.
▪ HIV-infected parent(s) often avoid planning for their children(s)’ future due to denial, sense of guilt, fear of their own death, fear of burdening others, fear of inadvertent disclosure, and fear of losing their children.
▪ Foster care agencies need to develop better flexible placement of children with HIV-infected parent(s) during acute episodes of illness (keep siblings together).
▪ It’s important for HIV+ parent(s) to actively participate in the planning process. / Foster Care
HIV+ Status Disclosure
Future Planning
Psychosocial Support
Bachanas PJ, Kullgren KA, Schwartz KS, Lanier B, McDaniel JS, Smith J, et al. Predictors of Psychosocial Adjustment in School-Aged Children Infected With HIV. J Pediatr Psychol 2001; Vol. 26(6): pp. 343-52. / ▪ 25% (9/36) of HIV+ subjects (ages 6-16) in this study displayed significant emotional and behavioral problems, including ADHD, oppositional-defiant disorder, anxiety, depression, and problems in social functioning relative to their peers (HIV virus has direct effects on brain structures that regulate emotion, cognition, and behavior).
▪ Children (especially younger-aged) who used emotion-focused, palliative coping strategies showed worse adjustment.
▪ Caregivers in this study who did not disclose their children’s HIV status to them suffered more psychological problems, as did their children (knowing status relieves stress).
▪ Coping intervention is critical in HIV-infected families. / Coping/Adjustment
Mental Status/Depression
HIV+ Status Disclosure
Psychosocial Support
Belzer ME, Fuchs DN, Luftman GA, Tucker DJ. Antiretroviral Adherence Issues Among HIV-Positive Adolescents and Young Adults. J Adol Health 1999 November; Vol. 25(5): pp. 316-9. / ▪ Adolescents and young adults in the U.S. have one of the fastest growing HIV-infection rates.
▪ In this study, pill burden was most common cause of missed doses.
▪ Adherence was highest in patients who believed the medications would help them and who were not in stages of denial.
▪ Simplified-dosing regimen is critical. / Factors Influencing Adherence
Intervention
Cohen J, Reddington C, Jacobs D, Regina M, Picard D, Singleton K, et al. School Related Issues Among HIV-Infected Children. Pediatrics 1997 July; Vol. 100(1): pp. 8-12. / ▪ In this study of 92 HIV-infected subjects (aged 5-17) who attended public schools, 53% had not informed schools of their status.
▪ Only 29% of participants received medication in school.
▪ Medication administration at school is problematic when there’s no disclosure of HIV status; this contributes to poor adherence.
▪ 49% of participants missed 2 or more weeks of school over the year due to HIV-related illnesses. / HIV+ Status Disclosure
Education
Factors Influencing Adherence
Dolezal C, Mellins C, Brackis-Cott E, Abrams E. The Reliability of Reports of Medical Adherence from Children with HIV and Their Adult Caregivers. J Pediatr Psychol 2003; Vol. 28(5): pp. 355-61. / ▪ There are limited studies on children’s adherence to HAART.
▪ There is no clinical gold standard for measuring HIV medication adherence.
▪ This study looked at 3-13 yr old HIV-infected subjects. Older children’s reports of adherence (those who were more in charge of their medications) showed more discrepancy with their caregivers’ reports.
▪ Issue of social desirability (reluctance in a clinical setting to admit poor adherence).
▪ Best approach to gauge adherence is a joint interview with both the child and caregiver followed by separate interviews). / Factors Influencing Adherence
Adherence Assessment & Intervention
Esch LD. Issues in Human Immunodeficiency Virus (HIV) Pharmacotherapy Practice: The Emerging Role of Pharmacotherapy Specialists in Enhancing Antiretroviral Success. J Inform Pharmacother 2001 March; Vol. 4: pp. 306-16. / ▪ The HIV virus is a highly mutable virus; if left untreated, or if medication is not properly taken, more virulent and resistant strains can develop.
▪ Studies have identified illicit drug use, alcohol abuse, and depression as predictors of poor adherence.
▪ Adherence factors can be classified as patient-related (HIV adherence education), provider-related (lack of provider trust and open communication), and clinical-related (pill burden, dosing frequency, adverse drug effects).
▪ Studies have shown that patients who see HIV pharmacotherapy specialists (as utilized in PACT), show better clinical response. / Factors Influencing Adherence
Adherence Assessment & Intervention
Mental Status/Depression
Substance Use
Farley J, Hines S, Musk A, Ferrus S, Tepper V. Assessment of Adherence to Antiretroviral Therapy in HIV-Infected Children Using the Medication Event Monitoring System, Pharmacy Refill, Provider Assessment, Caregiver Self-Report, and Appointment Keeping. J AIDS 2003 June; Vol. 33(2): pp. 211-18. / ▪ This study assessed the adherence of 26 perinatally HIV-infected children on HAART through the title-listed methods for 6 months.
▪ Medication Event Monitoring (MEM) caps use a microprocessor to record day and time when medication bottle(s) is/are opened (not for liquid medications though).
▪ The combination of MEMS caps and pharmacy refill assessment showed the best virologic response in patients.
▪ Study showed discrepancy between caregiver-reports of adherence with all other measurement methods.
▪ Study showed that caregiver-reports and physician reports of adherence generally overestimate the true adherence rate. / Factors Influencing Adherence
Adherence Assessment & Intervention
Hammami N, Nostlinger C, Hoeree T, Lefevre P, Jonckheer T, Kolsteren P. Integrating Adherence to Highly Active Antiretroviral Therapy Into Children’s Daily Lives: A Qualitative Study. Pediatrics 2004 November; Vol. 114(5): pp.591-7. / ▪ Three main factors influence adherence: knowledge, capacity (perceived self-efficacy), motivation (problem-solving and adaptive skills).
▪ Motivation to maintain >95% adherence (greater % required than other chronic illnesses) is influenced by: acceptance of disease (completion of progression through stages of coping), quality of relationships, and future planning.
▪ Patients who internalize therapy, take control of it, and incorporate it into habitual daily schedules rather than viewing it as an “obligation or burden” show best adherence.
▪ Coping intervention and knowing if a patient has an autonomous or dependent personality is key for working towards >95% adherence maintenance.
▪ Assess adherence; do not assume. Consider non-adherence point zero and evolve towards knowledge, capacity, and motivation. / Factors Influencing Adherence
Adherence Assessment & Intervention
Coping/Adaptation
Psychosocial Support
Future Planning
Howland LC, Gortmaker SL, Mofenson LM, Spino C, Gardner JD, Gorski H, et al. Effects of Negative Life Events on Immune Suppression in Children and Youth Infected With Human Immunodeficiency Virus Type 1. Pediatrics 2000 September; Vol. 106(3): pp. 540-6. / ▪ Children with HIV-infection are more likely to come from families that experience frequent negative life events (poverty, substance abuse, hospitalization and/or death of loved one(s), losing house and/or job).
▪ This was a 52-week study of 618 HIV-infected children and adolescents (aged 1-20).
▪ Almost 50% of patients experienced at least one negative event by week 52.
▪ Study showed statistically significant association between patient experiencing one or more negative life events and decreased immune function (25% of study patients, who were normal at baseline, showed a moderate-severe immune decline in CD4% following negative life event).
▪ Negative life events can affect adherence; supportive therapy is critical. / Factors Influencing Adherence
Mental Status/Depression
Coping/Adaptation
Substance Abuse
Psychosocial Support
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. / ▪ Study involved 75 HIV+ subjects aged 3-13 and their caregivers (only 19 caregivers were the biological parents).
▪ Factors most associated with poor adherence: poor child-caregiver communication, high caregiver stress-level/caregiver depression, negative stressful life events, low perceived QOL, lack of social disclosure, lack of knowledge of medication resistance potential.
▪ The older the child and the greater his/her stress-level, the more non-adherence measured (child may not have maturity level and future orientation yet for full responsibility; may have cognitive deficits).
▪ In contrast with other studies, adherence wasn’t associated with pill burden here.
▪ Demographics of patients do not reliably predict adherence!
▪ SLOW transition for child into having more medication therapy responsibility is critical. / Factors Influencing Adherence
Adherence Assessment & Intervention
Coping/Adaptation
Psychosocial Support
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. / ▪ This is the 3rd published study chronologically to assess adherence barriers in HIV-infected adolescents (not adults).
▪ Adolescents (aged 15-21) were recruited as a subgroup from the REACH study (majority black females).
▪ Study looked at 19 barriers to adherence: the most common were forgetfulness, medication not in possession, and change in daily routine.
▪ Two main areas that require intervention: medication-related side effects and incorporation of medication therapy into daily routine.
▪ Organizational skill improvement is critical. / Factors Influencing Adherence
Adherence Assessment & Intervention
Adaptation
Murphy DA, Wilson CM, Durako SJ, Muenz LR, Belzer M, et al. Antiretroviral Medication Adherence Among the REACH HIV-Infected Adolescent Cohort in the USA. AIDS Care 2001; Vol. 13(1): pp. 27-40. / ▪ REACH (Reaching for Excellence in Adolescent Care & Health)
▪ Adolescent HIV-infected patients (aged 13-18 at recruitment with non-perinatal transmission only) were recruited from 13 U.S. cities from 1996-1999. 161 of them were on HAART; of this 161, only 41% reported full adherence (>95%-100%).
▪ High levels of depression were associated with decreased adherence (the strongest and most consistent finding in this study was between depression and adherence).
▪ Psychological stability is critical.
▪ Increased complexity of medication regimen was associated with decreased adherence (regardless of age and/or education).
▪ Increased adherence strongly associated with clinically decreased viral loads.
▪ This study found no correlation between social support and adherence. / Factors Influencing Adherence
Adherence Assessment & Intervention
Mental Status/Depression
Psychosocial Support
Rogers AS, Miller S, Murphy D, Tanney M, Fortune T. The TREAT (Therapeutic Regimens Enhancing Adherence in Teens) Program: Theory and Preliminary Results. J Adol Health 2001 September; Vol. 29: pp. 30-8. / ▪ 65 REACH subjects (treatment-naïve) formed this subgroup pilot study