Palliation in Adolescent and Young Adult HIV Medicine—An Emerging Need

Dear Editor:

Adolescent-specific care is a major gap in the health care system in sub-Saharan Africa. ¹ Consequently, adolescents and young adults aged between 15 to 24 years are underserved by the health system and unable to access adequate palliative care.

Following the introduction of highly active antiretroviral therapy (HAART), an increasing number of children with previously fatal pediatric conditions, particularly HIV/AIDS, are now surviving into adolescence and young adulthood. Adolescence is a distinctive developmental period for young people characterized by biological, psychological, physiological, and cognitive changes. ² These changes in essence make adolescent and young adult HIV medicine both different and unique from pediatric and adult HIV medicine.

Palliation in HIV aims, among other things, at treatment and relief of pain, consequently improving the quality of life of HIV-positive patients. ³ Increased pediatric HIV survival would essentially mean an increased demand for adolescent and young adult palliative care. Advances in antiretroviral therapy (ART) on the contrary, have made clinicians focus solely on controlling viral replication and disease progression, hence overlooking the palliative care needs of the patient. HIV care as a result, has increasingly become biomedical.

The need for palliative care throughout the HIV disease course is well documented.^4–6 Studies on palliative care needs among adult HIV/AIDS patients have shown that every 5 to 8 in 10 patients would benefit from palliative care, given that 9 in 10 patients suffer from pain at least at one point during the course of disease.^7–10 Unfortunately, similar studies have not been conducted in adolescents and young adults living with HIV/AIDS.

The World Health Organization (WHO) acknowledges palliative care as “an essential component of a comprehensive package of care for people living with HIV/AIDS because of the variety of symptoms they can experience…[and] an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic,” and also acknowledges that a “lack of palliative care results in untreated symptoms that hamper an individual's ability to continue his or her activities of daily life…[which] places an unnecessary burden on hospital or clinic resources.” ¹¹

As much as treating specific conditions in HIV/AIDS is essential in treating the disease, a growing body of evidence shows that palliative medicine can be an effective adjunct or primary treatment in providing relief.^12–14 Effective pain and symptom control of HIV-associated opportunistic infections and cancers toxicities, ART- and alternative medication– associated side effects, and immune reconstitution inflammatory syndromes (IRIS) among HIV-positive adolescents and young adults can augment medication adherence and in the long run improve retention in care.

The HIV-associated opportunistic infections that are appropriate for palliative care among HIV-positive adolescents and young adults include WHO stage II disease—herpes zoster, oral hairy leukoplakia; WHO stage III disease—oral candidiasis, bacterial pneumonia; and WHO stage IV disease—disseminated candidiasis, oesophageal candidiasis, invasive cervical carcinoma, disseminated or extrapulmonary coccidioidomycosis, Cryptococcus neoformans meningitis, chronic intestinal cryptosporidiosis, disseminated cytomegalovirus (CMV) disease, CMV retinitis, HIV-related encephalopathy, chronic ulcerative herpes simplex, disseminated herpes simplex, disseminated or extrapulmonary histoplasmosis, chronic intestinal isosporiasis, Kaposi's sarcoma, Burkitt's lymphoma, lymphoma of the central nervous system, disseminated or extrapulmonary tuberculosis, disseminated or extrapulmonary mycobacterium avium complex, Pneumocystis jiroveci pneumonia, progressive multifocal leucoencephalopathy, recurrent salmonella septicemia, and toxoplasmosis. ¹⁵

Also appropriate for palliative care are IRIS events occurring in this population, including herpes zoster, oral candidiasis, pulmonary tuberculosis, Kaposi's sarcoma, Cryptococcal meningitis, leprosy, and disseminated tuberculosis.^16–18

Palliative care in young people is a vital necessity, as most of these adolescents and young adults are still developing physically and mentally. Most of them at this point in their lives are actively engaged in secondary and tertiary education. A number of them, if not in school, are engaged in agricultural activities, which are primarily subsistence and small business enterprises—more the reason why palliation should play a big role in improving quality of life and sustaining livelihoods.

With increasing emphasis on improving access to HAART in most developing countries where there is still limited HAART coverage, palliative care in HIV-positive adolescents and young adults provides a unique opportunity to manage distressing symptoms, therefore improving the quality of life. A South African study reported that 50% of adults diagnosed with AIDS were infected before the age of 25 years, ¹⁹ which reemphasizes the emerging need and role for palliative care in HIV adolescent and young adult medicine. Norval demonstrated high levels of depression, mood disorders, anxiety, and hopelessness among young people with AIDS because of limited care and support for this population. ¹⁹

The biggest barrier to provision of palliative care in HIV-infected young people in sub-Saharan Africa is the severe shortage of specialist clinics for this critical population, because, more often than not, the young people in most HIV clinics are considered as either pediatrics or adult. Secondly, the limited formal training in palliative care in HIV medicine in resource-limited settings further emphasizes the growing palliative care gap in HIV-adolescent and young adult medicine.

Effective palliative care for young people necessitates empowerment of the young person so that he or she can be able to make decisions about his or her health care. With the increasing international drive to provide universal access to HAART, especially in developing countries, the importance of providing effective palliative care for HIV-infected adolescents and young adults must not be forgotten.