By: Paul B. Goulet, Chair, Providence/Boston CFAR-CERC, Patient Engagement Consultant
The good news is that people with HIV are living much longer than they used to; it’s estimated that by 2020, 70 percent of people living with HIV in the United States will be age 50 and older, compared to 10 percent during the first 20 years of the epidemic (www.cdc.gov/olderamericans)
The bad news? With this longevity come challenges that our healthcare system isn’t prepared to address. One the top challenge that the healthcare system needs to address is transitional care for people living with HIV/AIDS.
Transitional care has been defined as a set of actions designed to ensure the coordination and continuity of health care as patients living with HIV transfer between different locations or different levels of care in the same location or enter into geriatric care including nursing home, and or assisted living care.
When we address transitional care, a primary concern is the relatively brief time interval that begins with preparing a patient to leave one setting and concludes when the patient is received in the next setting poses many challenges that distinguish it from other types of care.
Many transitions, especially for people living with HIV are unplanned, and can result from un-anticipated medical problems which can occur in “real time” during nights and on weekends, or at a specific medical appointment.
These challenging transitions usually involve clinicians who may not have an ongoing relationship with the patient, know little about HIV care and happen so quickly that formal and informal support mechanisms do not respond in a timely manner.
Many HIV patients and their caregivers are unprepared for their role in the next care setting, whether it be geriatric, cardiac, renal or other care issues and many times both patients and caregivers do not understand the essential and necessary steps in the management of their conditions and cannot contact appropriate health care providers for guidance because they are unsure of what they do not know nor do they know the questions they should be asking.
Because of these issues it is important that communication remains continuous between ID providers and other providers when dealing with multiple and complicated medical issues.
Aging with HIV presents special challenges for preventing other diseases. Both age and HIV increase the risk for cardiovascular disease, lung disease (specifically chronic obstructive pulmonary disease), bone loss, and certain cancers. People aged 50 and older also need to be careful about interactions between medications used to treat HIV and those used to treat common age-related conditions such as hypertension, diabetes, elevated cholesterol, and obesity.
For example, there are multiple points during a transition at which care processes can break down. These include the preparation of the patient and caregiver, the communication of important and vital elements of the care plan, the reconciliation of the medication regimen that was prescribed before the initial transition with the current regimen, (in my experience has been a major concern for patients I have worked with) the transportation of the patient, the completion of follow-up care with a practitioner, diagnostic imaging or laboratory testing, and the availability of advance care directives across multiple and complex settings .
Effective care transitions depend on collaboration across health care spectrum; however, medical providers and medical institutions often function in isolation, and there is no way to assign responsibility when problems arise.
Healthcare professionals need to develop cross-disciplinary expertise. HIV specialists need to be able to take care of the geriatric issues, gerontologists should be able to tackle HIV issues, and primary care providers should be able to do both. In most places, we’re not quite there yet.
For many patients their experience of transition can be an ongoing traumatic experience. For many aging patients, transitioning into nursing homes or elder care is like coming out of the closet again. Explaining sexual identity and HIV status can be difficult, especially when staff are untrained, uneducated around HIV and aging, and the specific needs of the gay community. Stigma is common among adults with HIV and negatively affects people’s quality of life, self-image, and behaviors. People aged 50 and older may avoid getting the care they need or disclosing their HIV status because they may already face isolation due to illness or loss of family, friends, or community support. This leads to poor health outcomes and decreased retention in their health care.
In order for the transition process to be successful and to provide exceptional care without exception, health care providers must always consider the interplay of biological, cognitive, mental and social factors in the aging process for people living with HIV.
Insurance barriers also play an important role in the quality and quantity of care for the transitioning patient. Insurance also plays a role in the retention of care for people aging and living with HIV/AIDS.
There are many questions that still exist regarding how HIV medications interact with medications to treat other conditions as the population of people living with HIV continues to age.
Research can play an important role around the effects of HIV and aging, but researchers have not stepped up to the plate. Many aging with HIV have been excluded from research studies because of multiple co-morbidities which need to be studied especially in relation to HIV medications and interactions of other medications to treat the patient’s evolving medical conditions.
We are in the early stages, so we need to take time to examine what we know about aging and HIV and identify and address those gaps in knowledge. The question is, are healthcare providers ready for the graying of the HIV epidemic, and what are healthcare providers doing to facilitate a seamless transition process for people aging and living with HIV.
Some considerations that may be helpful:
- Reduce HIV myths, discrimination and stigma among seniors and their providers
- Promote collaborations among HIV/AIDS service providers, senior services providers, and healthcare providers
- Identify key stakeholders at organizations serving older adults
- Offer more training modules on aging, HIV and mental health, HIV, aging and comorbidities, HIV, aging and stigma, HIV, aging and agism
- Improve HIV knowledge and change attitudes and beliefs among those who are serving older adults