Journal of Pediatric Health Care
Volume 25, Issue 1 , Pages 16-23, January 2011

Development of a Protocol for Transitioning Adolescents With HIV Infection to Adult Care

published online 01 February 2010.

Article Outline

Abstract 

As HIV infection in childhood and adolescence has evolved from a terminal to a chronic illness, new challenges are posed for both medical and psychosocial teams serving these clients. Although specialized programs for transition to adult care have been reported for persons with cystic fibrosis, diabetes mellitus, sickle cell disease, and other chronic illnesses, there are few published reports of integral programs designed to transition adolescents who were infected with HIV during the adolescent period to adult HIV services. This article describes a model of transition from a University-based, federally funded adolescent HIV program to adult HIV services, addresses barriers to transition, and provides strategies and recommendations for improving adherence to the transition process.

Key Words: Adolescents, clinical protocols, health transition, HIV

 

Adolescence is defined as the period between childhood and adulthood. Traditionally, the adolescent period included years 13 through 19. Changing views of this developmental period have extended the adolescent or youth period to age 24 years (Centers for Disease Control and Prevention [CDC], 2008a).

Adolescence is a period of physical, psychosocial, emotional, and cognitive growth. The diagnosis of a chronic illness such as HIV infection during this developmental stage may have an impact on adolescent growth and development. In addition to managing HIV infection, the chronically ill adolescent is expected to transition to adult care services at a prescribed point. This transition to adult services often is a difficult adjustment for adolescents with HIV infection because they must leave child/adolescent-oriented services to enter a world of adult care that may be intimidating and depersonalized. Because this transition to adult care can be difficult and often intimidating for the chronically ill adolescent, non-adherence to prescribed medical appointments and treatment regimens often occurs (Cervia, 2007).

Transition to adult care is expected in healthy adolescents as well as in those with chronic illnesses. A position paper of The Society for Adolescent Medicine (1993) defines transition as the purposeful, planned movement of adolescents and young adults with chronic medical conditions from a child-centered to an adult-oriented health care system. A wealth of information in the literature describes the transition process to adult health care, but the majority of the transition programs exist for persons with chronic conditions such as cystic fibrosis, spina bifida, epilepsy, and diabetes mellitus (Betz, 2004; Brumfield & Lansberry, 2004; Freed and Hudson, 2006, Lewis-Carey, 2001, Por et al., 2004).

Studies on transition to adult care for adolescents with HIV infection are less developed than are those for adolescents with other chronic illnesses. This phenomenon may be related to the fact that chance of survival into adolescence for children infected with HIV perinatally has increased because of developments in antiretroviral therapy (Gortmaker et al., 2001). Previously these children did not survive until adolescence; therefore, the need to help them transition to adult care was non-existent.

Literature on transitioning adolescents with HIV infection to adult care focuses exclusively on perinatally infected adolescents (Miles et al., 2004, Thorne et al., 2002, Vijayan et al., 2009; Wiener, Battles, Ryder, & Zobel, 2007) because more than 90% of children younger than 13 years of age were infected with HIV via the perinatal route (also referred to as vertical or mother-to-child transmission) (CDC, 2007). An identified gap in the literature is that no studies to date have examined the unique transitioning needs of adolescents who were infected with HIV during the adolescent period. The purpose of this article is to address this gap in the literature by describing the development and implementation of a transitioning protocol for adolescents who were infected with HIV during adolescence in a University-based, multidisciplinary, family-centered adolescent clinic.

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Adolescent HIV/AIDS 

Adolescents are at an increased risk for HIV infection. Since 1981, nearly 40,000 adolescents have been diagnosed with HIV/AIDS in the United States. Approximately 5000 adolescents are diagnosed with HIV/AIDS annually. This age group accounts for 13% of the 56,000 new diagnoses of HIV in the United States (CDC, 2009).

Adolescents with HIV infection can be divided into two major categories: those who acquire HIV perinatally or vertically from HIV-infected mothers, and those who acquire HIV infection via high-risk behaviors such as unprotected sex or injection drug use. Adolescents who acquire HIV via high-risk behaviors are called “behaviorally infected adolescents” (National Institute of Allergy and Infectious Diseases, 2006). With the advances in treatment of HIV infection, children who acquired HIV perinatally are surviving to adulthood and comprise the largest number of adolescents living with HIV infection in the United States (CDC, 2007). However, more adolescents are becoming infected via high-risk behaviors each year (CDC, 2009).

Much like HIV infection among adults, the majority of adolescents with behaviorally acquired HIV acquire the infection through sexual contact (88%), are male (62%), and are African American (55%). Only about 3% of men and 11% of women contract HIV via injection drug use (CDC, 2009).

As mentioned previously, the majority of adolescents acquire HIV via sexual contact. Among male adolescents, the transmission category of male-to-male sexual contact accounts for 87% of the cases in those aged 13 to 19 years and 83% of the cases in those aged 20 to 24 years. Among female adolescents, high-risk heterosexual contact accounts for 88% of the cases in those aged 13 to 19 years and 87% of the cases in those aged 20 to 24 years (CDC, 2009).

Adolescents who were behaviorally infected with HIV face unique challenges once they are diagnosed. These adolescents may take several months to accept the diagnosis and return for treatment (National Institute of Allergy and Infectious Diseases, 2006). This phenomenon often is related to the fact that these adolescents have difficulty accepting their diagnosis, may lack adequate support, and may engage in other high-risk behaviors such as alcohol and drug usage. The same behaviors, attitudes, and fractured social support systems that rendered these adolescents at high risk for HIV infection also contribute to poor adherence with medical appointments and treatment (Cervia, 2007).

HIV-infected adolescents engaging in high-risk behaviors such as experimentation with sex, drugs, and alcohol can have a myriad of psychological, socioeconomic, developmental, and medical needs (Kadivar, Garvie, Sinnock, Heston, & Flynn, 2006). As a chronic illness, HIV is unique because of HIV-related stigma, the relationship to poverty, the fact that multiple members of the same family may be living with or have died from HIV infection, and the disproportionate number of ethnic minorities who are affected by the disease (Cervia, 2007). Given these factors, it is clear that HIV infection is vastly different from other chronic illnesses. These adolescents, therefore, need special attention in terms of transitioning to adult care.

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HIV Risk Factors for Infection Among Adolescents 

Various factors that contribute to the increased risk of acquisition of HIV infection in the adolescent population have been identified. These risk factors include developmental influences, sexual risk factors, substance abuse, lack of knowledge, and poverty (CDC, 2008a).

Developmentally the adolescent period is a time for identity development. Adolescents strive for autonomy and separation from the family and attachment to a peer group. The autonomy and separation lead to exploration that may result in exposure to certain high-risk behaviors such as sexual activity and substance use (Rice & Dolgin, 2007).

High-risk or unprotected sexual behaviors are responsible for the majority of HIV infections (CDC, 2008b). Data from the Youth Risk Behavior Survey conducted by the CDC (2008b) has noted that about 8% of adolescents reported a sexual debut before the age of 13 years, and nearly 50% have been sexually active by the high school years. Of the adolescents who engaged in sexual activity, only 62% had used condoms during their last sexual encounter. In addition, roughly half of the students surveyed had used alcohol in the past 30 days and 38% had used marijuana (CDC, 2008b). This documented combination of high-risk sexual behavior and substance abuse may be responsible for fueling the HIV epidemic among adolescents and young adults in the United States, where increasing numbers of new infections are occurring among those younger than 25 years (National Institute of Allergy and Infectious Diseases, 2006).

Although both male and female adolescents are at risk for HIV related to high-risk sexual behaviors, female adolescents often engage in sexual relationships with older male partners who are more likely to be infected with HIV. Female adolescents may not be able to negotiate condom use with these older partners. Male adolescents who engage in same-sex sexual activity are at the highest risk for HIV infection, especially if engaging in unprotected anal intercourse, the sexual behavior that carries the highest risk for HIV infection. Both male and female adolescents are at an increased risk for HIV infection if a sexually transmitted infection is present that provides a portal of entry for HIV (Fleming & Wasserheit, 1999).

Substance abuse behaviors contribute to HIV transmission both directly and indirectly. Injection drug use provides a direct portal of entry for HIV (CDC, 2008a). Adolescents who engage in alcohol use and the use of other illegal substances indirectly increase the risk of HIV infection because the use of alcohol and other substances is known to decrease inhibitions and impair judgment, which could result in participation in high-risk sexual behaviors (CDC, 2008a).

Many adolescents lack accurate information regarding HIV transmission risk factors and HIV risk. Because of this lack of knowledge, some adolescents may not perceive themselves at risk for HIV. Because of the inability to perceive risk, many adolescents are not concerned about HIV infection and may engage in high-risk sexual behaviors that may result in acquisition of HIV (CDC, 2008a).

The combination of poverty and ethnic minority status results in an increased risk for HIV infection, because ethnic minority adolescents are more likely to live in poverty. In fact, one in four African Americans and one in five Hispanics live in poverty (U.S. Census Bureau, 2003). Poverty influences health risk because it is related to a lack of knowledge; in addition, decreased access to health care, a lack of knowledge, and restricted access to health care limits health promotion and disease prevention initiatives (CDC, 2008a).

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The Special Adolescent Clinic 

SAC …provides centralized services for a “one-stop shop” approach, where most medical and psychosocial services are rendered at one clinic site.

The Special Adolescent Clinic (SAC) is a part of a University-based system that traditionally serves low-income and underserved populations. SAC is a component of the Division of Adolescent Medicine in the Department of Pediatrics. In addition to the clients who receive services at the SAC, The Division of Adolescent Medicine also provides care to adolescents who are not infected with HIV. Adolescents who are not infected with HIV are not seen in the SAC.

Providing this clinic specifically for HIV-infected adolescents helps decrease one of the major barriers to care, that is, HIV-related stigma (Cervia, 2007). Research with people with HIV infection has noted that HIV-related stigma stems from multiple sources such as family, peers, the community, and even health care providers. HIV-related stigma contributes to feelings of worthlessness, self-esteem, isolation, depression, substance abuse, decreased quality of life, and decreased physical and mental health outcomes (Holzemer et al., 2009). To address this barrier to care, the SAC staff is committed to providing culturally sensitive, age and developmental level appropriate, non-judgmental care that accounts for the unique physical and psychosocial care needs of adolescents infected with HIV.

HIV-infected adolescents are referred to SAC from many sources such as the Florida Department of Health, Florida Department of Children and Families, medical clinics, in-patient hospital settings, assorted community-based organizations, and private physicians. Once a diagnosis of HIV infection is established, adolescents are referred to the SAC to ensure that comprehensive care of the adolescent with HIV infection is provided.

SAC has recognized the unique needs of this adolescent population and provides centralized services for a “one-stop shop” approach, where most medical and psychosocial services are rendered at one clinic site. With this approach to delivery of clinical services, Rosen (1995) has found that clients and families are spared repeated visits and quality of care is enhanced by communication among the involved health care professionals. This method of accessibility is beneficial when compared with traditional adult care settings where adjunctive services often are provided at independent locations.

At the inception of this transition protocol in December 2004, 102 clients were enrolled at SAC. Currently the SAC provides care for approximately 104 HIV-infected adolescents. A more detailed demographic profile of the clients can be found in the Table.

Table. Demographic profile of SAC clients (N =104, age range 13-25 years)
Variablen%
Age stratification (y)
13 to 1787.7
18 to 247976.0
251716.3
Race/ethnicity
Black8379.8
Hispanic1817.3
White21.9
Other11.0
Gender
Male4745.2
Female5552.9
Transgender21.9
Mode of transmission
High risk sexual9086.5
Perinatal109.6
Sexual abuse43.9
Injection drug use00.0
Socioeconomic status
Below federal poverty line8076.9
At or above federal poverty line2423.1
History of sexual abuse
Positive history of sexual abuse3533.7
Negative history of sexual abuse6966.3

Demographic data from SAC clients indicate that they require coordinated care from a multidisciplinary team. A culturally sensitive staff that demonstrates an accepting, non-judgmental attitude is vital to serving these youth. The SAC team is interdisciplinary and includes two physicians (one adolescent medicine pediatrician and one adult infectious disease physician), two pediatric nurse practitioners, two social workers, a psychologist, a research nurse, a dietician, and a peer educator. This team collaborates on treatment of the client's illness and presenting problems on varying levels. The ultimate coordinating goal is to build confidence and trust in the professional relationship by fully involving clients in their plan of care, providing quality health care, and assisting with clients' decision making throughout the duration of care.

Because of the age of the clients, as well as their particular demographics and family history, they often require additional assistance to adhere to their plan of care for HIV management. Upon enrollment, all SAC clients are oriented to the services offered, which include medical care, individual and group therapy, educational workshops, peer counseling, opportunities for research participation, and the transition protocol. Throughout their enrollment at SAC, clients are informed and counseled regarding the time limitations of services. Case presentations during clinic staff meetings provide insight as well as updates on the status of a client's readiness for transition as well as progress toward the goal of transition to adult services.

Because SAC is an adolescent HIV clinic, certain barriers exist for adolescents because of the nature of HIV infection. The SAC is structured to decrease barriers to care for adolescent clients. Research has demonstrated that HIV-infected adolescents experience a number of barriers to care, including financial and psychological barriers (Goulart and Mandover, 1991, Valdiserri et al., 1995). These barriers affect adherence with care appointments and ultimately adherence to antiretroviral therapy (Murphy et al., 2003). Adolescents with HIV infection experience financial barriers because many lack health insurance and may not have knowledge of how to navigate complex public assistance programs (Valdiserri et al., 1995). Psychological factors such as a lack of trust of adult health care providers and feelings of invincibility may impede adherence with medical appointments and prescribed treatment (Goulart & Mandover, 1991). To assist in addressing these barriers, the SAC adheres to the treatment recommendations of the Society for Adolescent Medicine (1994), which propose that services for adolescents with HIV infection need to be provided in clinical settings that promote comfort and trust in health care providers, include comprehensive medical and psychosocial care, and assist adolescents with adherence issues.

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Development of the Transition Protocol 

The development of this transition protocol, called “Movin' Out,” was facilitated by a host of factors. First, because HIV-infected adolescents who required inpatient services often were hospitalized on adult units, we had the desire to link adolescent services with adult services for care of HIV-infected adolescents and young adults. The adult providers would consult adolescent medicine providers to help co-manage the adolescent's care. Because these adolescents would transition to adult care in the near future, it was evident that a collaborative approach between adolescent and adult services was necessary.

The second factor was the need to address the attrition rates of adolescents when they were transferred to adult services. Previous attempts to transition these HIV-infected adolescents at 21 years of age were met with a high number of failures. Subsequently the adolescent and adult HIV providers agreed that these clients would be followed up by adolescent medicine until age 25 years. Previously a client's chronologic age was the sole determining variable for candidacy into the antiquated transition protocols.

The protocol was developed by a multidisciplinary group of health care providers at the SAC. SAC health care providers were told by adult HIV health care providers that newly transitioned adolescents were not adhering to medical appointments. At the same time, SAC health care providers were receiving anecdotal information from the adolescents who were transitioned to adult care regarding their experiences with the adult care model. To address these issues, SAC health care providers conducted a review of the literature for an evidence-based protocol to assist adolescents with the transition. Upon discovering that a protocol for this problem was non-existent, SAC health care providers, in collaboration with a physician from the adult HIV program, developed the transitioning protocol. The protocol is based on adolescent growth and development theory, anecdotal evidence from adolescents and adult providers, and the assumption that transition to adult care requires extensive effort and support for the transitioning adolescent. This support is necessary because adolescents are moved from a warm, nurturing, adolescent-focused setting to a challenging, often impersonal adult care site (Catallozzi & Futterman, 2005).

After being transitioned to adult services, many clients experienced anxiety upon detaching from the established connections made at SAC. These clients continued to seek further support from the SAC team months after leaving the clinic. Other clients were non-adherent with the adult clinic visits, because they were forced to navigate through the adult systems on their own. Lastly, others attended their clinic appointments sporadically or failed to keep appointments altogether.

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The Transitioning Protocol 

…early, creative, and continuous education with the client regarding the specific processes of accessing health care in general is needed.

The transitioning protocol has five phases (Figure). The phases described within this model are fluid in that clients are allowed to revert to a prior phase or become stagnant within a particular phase. Also, throughout every phase of the model, the client receives counseling from the multidisciplinary team, and his or her progress in continuing the protocol is monitored by the team. Although the concept of transition is introduced to the client during initial orientation to the SAC clinic, the formal transition process is initiated at age 23 years based on the patient's chronological age, psychological hardiness, and level of maturity. The chronological age of 23 years serves as a baseline age to begin this process and is based on the findings of Por and colleagues (2004), who reported that health care professionals caring for and helping to transition adolescents with chronic conditions supported this criteria of readiness based on maturity and not on chronological age exclusively.

Note: The model displayed depicts the phases of the process for a client transitioning from SAC to an adult clinic. Arrows portray direction of movement from one phase to the next. As evidenced by the reciprocal arrows between phases 3 and 4 and the disconnected arrow between phases 5 and 4, one can see how clients revert from one phase to another. The arrows emanating from phase 1 show that this is an ongoing process that involves the full support of the medical and psychosocial teams throughout the entire process.

In Phase One of the protocol, the SAC team begins by identifying clients who are appropriate for transition. This step is performed on a weekly basis at the multidisciplinary meetings. By the time the client reaches age 23 years, the team begins discussing with the client at each visit the need to transition from adolescent medicine to the adult services. This topic is often met with resistance and refusal from the client. However, each clinic encounter is a viable opportunity for the health care team to provide the client with education, support, and realistic expectations for future health care.

When the client is 24 years of age, Phase Two of the protocol is introduced. The client meets with the adult infectious diseases (ID) physician for the first time. This planned introduction occurs at the SAC. Common reactions expressed by clients include, “I will meet the doctor, but I'm not leaving adolescent medicine!” This statement provides evidence of the varying degrees of acceptance among clients regarding transition. Many clients have even attempted to falsify their age in attempts to sabotage efforts by the team to continue with the transition. The clinical social work team provides an ongoing assessment of the client's readiness and works together with the Department of Psychiatry and other targeted services to ease the transition process. A peer educator is available throughout all phases of the transition to provide continuing support to the client.

Phase Three of the protocol begins with the client's next 3-month routine medical appointment, falling near the client's 24th birthday. This appointment takes place at the SAC but is conducted by the adult ID physician. The following routine visits also take place at the adolescent clinic with the same adult physician. These visits provide the opportunity to establish rapport and also help alleviate the anxiety the client may have in leaving familiar and trusted providers to transfer to an unfamiliar clinic and new providers. At the conclusion of the final visit with the adult ID physician, the client schedules the subsequent medical appointment to occur in the adult HIV clinic, with the assistance of the SAC social workers. Clients know they will see the same physician at the adult clinic that they have been seeing in the adolescent clinic at their last few visits, which provides reassurance. The total number of visits with the adult provider during this phase may vary from client to client, depending on adherence with medical appointments.

Prior to the scheduled appointment at the adult clinic, the SAC team places a reminder call to the client. At this point the SAC clinician has completed a referral form, provided it to the adult physician, and placed a copy in the adolescent's medical record. On the day of the appointment, the SAC social worker or the peer educator accompanies the client to the adult HIV clinic. The goal of having an SAC staff member accompany the client facilitates the navigation of a new and often intimidating adult system. All future medical appointments are scheduled through the adult clinic.

After the client has attended at least two appointments at the adult clinic, a member of the SAC team contacts the client by telephone to complete a survey evaluating the transition process. An in-depth interview is conducted to solicit anxieties, apprehensions, and fears that the client may have experienced. Specifically, questions targeting their feelings about the transition experience, their preferences, and suggestions for improvement are explored. All feedback is reviewed by the adolescent and adult teams and considered for improving this transition process. After this transition is completed, the SAC social workers continue to provide ongoing adherence counseling and support for 1 full year. After follow-up is complete, the client's case is officially closed at the SAC clinic and Phase Four is completed.

Anecdotal preliminary analysis of the experiences of the adolescents indicate that early, creative, and continuous education with the client regarding the specific processes of accessing health care in general is needed. Clients also might benefit from organized site visits to community agencies offering HIV services to help them learn to navigate the medical and psychosocial systems of established HIV care. One such example is illustrated by a particular SAC client who was having difficulty transitioning. The team assisted the client with an introductory visit to interview the new provider and view the adult clinic the client had chosen in the community. This additional step helped alleviate the uneasiness the client experienced regarding transitioning, thus contributing to a successful transition. Most adolescents experience anxiety during the transition process, and first attempts at transition often produce failures in the form of non-adherence with medical appointments and antiretroviral therapy.

SAC clinic experience suggests that a transition team comprised of physicians, nurse practitioners, nurses, social workers, psychologists, and peer educators who dedicate a specific time to focus on clients' exact transition needs is imperative to ensure a successful transition to adult care. In order to facilitate future transitioning successes, a transitioning protocol that is relevant to the clinic setting and the client population such as the one described in this article is necessary.

Despite the development and implementation of the protocol, certain barriers to transition continue to exist for this patient population. Adult care providers often lack knowledge of how to help the newly transitioned adolescents access public assistance programs to help them fund their health care. In addition, many public assistance programs such as the AIDS Drug Assistance Program have experienced funding cuts that have affected their ability to assist these adolescents. Certain psychosocial issues such as transportation, employment issues, family support, and food and housing issues surface to confront these adolescents. Adult programs often lack the financial resources to help patients with these psychosocial issues. Health care providers working with this subpopulation of adolescents need to be aware that these barriers may affect adherence to medical appointments as well as to adherence to antiretroviral therapy.

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Testing the Transition Protocol 

Implementation of this transition protocol began in 2004. At present, 17 patients are in the process of transitioning to adult HIV care. SAC team members currently are conducting a pilot study of the medical records of more than 40 clients who have completed the transition protocol. This pilot data will be used to test the transitioning model and to help identify facilitators and barriers to the transition process. As mentioned previously, because literature on the transition experience for adolescents who are infected with HIV during adolescence is lacking and a protocol to address this issue has not been developed, the results of this pilot study will fill an important gap in the knowledge base of this particular population of HIV-infected adolescents. Results of the evaluation of the transition protocol are forthcoming.

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Summary 

Bridging the gap between adolescent medicine and adult care is critical for maintaining continuity of care and increasing adherence with medical appointments and treatment.

As HIV-infected adolescents and young adults live longer and healthier lives, the need to transition into adult care is imminent and imperative. Bridging the gap between adolescent medicine and adult care is critical for maintaining continuity of care and increasing adherence with medical appointments and treatment. Transitioning from a familiar youth setting can be an overwhelming, fearful, and anxiety-provoking experience for these adolescents. To facilitate a successful transition from adolescent to adult care, a specific transitioning protocol is essential to help these adolescents transition to the next phase of their lives.

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Donna Maturo, Advanced Registered Nurse Practitioner, University of Miami Miller School of Medicine, Department of Pediatrics, Division of Adolescent Medicine, Miami, FL.

Alexis Powell, Assistant Professor of Clinical Medicine, University of Miami Miller School of Medicine, Miami, FL.

Hanna Major-Wilson, Advanced Registered Nurse Practitioner, University of Miami Miller School of Medicine, Department of Pediatrics, Division of Adolescent Medicine, Miami, FL.

Kenia Sanchez, Manager Research Support, University of Miami Miller School of Medicine, Department of Pediatrics, Division of Adolescent Medicine, Miami, FL.

Joseph P. De Santis, Assistant Professor, University of Miami School of Nursing & Health Studies, Coral Gables, FL.

Lawrence B. Friedman, Professor of Clinical Pediatrics and Director of the Division of Adlescent Medicine, University of Miami Miller School of Medicine, Department of Pediatrics, Division of Adolescent Medicine, Miami, FL.

 The Special Adolescent Clinic is a component of the Miami Family Care Program at the University of Miami and is supported in part by funds from Ryan White CARE Act Part D (formerly Title IV), Grant #H12-HA00028 (Gwendolyn B. Scott, MD, PI).

 Conflicts of interest: None to report.

PII: S0891-5245(09)00379-4

doi:10.1016/j.pedhc.2009.12.005

Journal of Pediatric Health Care
Volume 25, Issue 1 , Pages 16-23, January 2011