Purpose of This Guidance
Reviewed and updated: Eugenia L. Siegler, MD; May 5, 2023
Writing group: Steven M. Fine, MD, PhD; Rona M. Vail, MD; Joseph P. McGowan, MD, FACP, FIDSA; Samuel T. Merrick, MD; Asa E. Radix, MD, MPH, PhD; Jessica Rodrigues; Christopher J. Hoffmann, MD, MPH; Charles J. Gonzalez, MD
Committee: Medical Care Criteria Committee
Date of original publication: July 31, 2020
Purpose: Because published evidence to support clinical recommendations is not currently available, this guidance on addressing the needs of older patients in HIV care was developed by the New York State Department of Health AIDS Institute (NYSDOH AI) to present good practices to help clinicians recognize and address the needs of older patients with HIV.
The goals of this guidance are to:
- Raise clinicians’ awareness of the needs and concerns of patients with HIV who are ≥50 years old.
- Inform clinicians about an aging-related approach to older patients with HIV.
- Highlight good practices to help clinicians provide optimal care for this population.
- Provide resources about aging with HIV for healthcare providers and their patients.
- Suggest steps to guide medical settings in implementing geriatric care into HIV clinical practice.
Demographics: At the end of 2020, according to the Centers for Disease Control and Prevention, more than 52% of people with HIV in the United States were ≥50 years old CDC 2023. As of the end of 2020 in New York State, 60% of people with HIV were ≥50 years old, and nearly 30% were ≥60 years old NYCDHMH 2021. That same year, almost 19% of new HIV diagnoses in New York State occurred in people ≥50 years old, and one-third of them had progressed to AIDS at the time of diagnosis NYCDHMH 2021. In light of these New York State demographics, the NYSDOH AI has developed this guidance to help care providers expand services for older people with HIV.
Ensuring appropriate care delivery: Although the effects of HIV on aging have been studied for years, HIV care has been acknowledged only recently as a domain of geriatrics Guaraldi and Rockwood 2017. Geriatric assessment provides a complete view of a patient’s function, cognition, and health, and improves prognostication and treatment decisions Singh, et al. 2017. As the population with HIV grows older, the application of the principles of geriatrics can enhance the quality of care.
Definition of terms:
- “Older”: Published studies differ in their definitions of older patients with HIV (e.g., ≥50 years old, ≥55 years old, ≥60 years old), and the needs of individuals within different age groups may differ markedly. This guidance defines older patients as those ≥50 years old, which is the same definition used by the U.S. Department of Health and Human Services Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV DHHS 2023. Nonetheless, clinical programs may wish to distinguish different strata within this population, as their needs may differ; a local needs assessment is key to determining how best to care for this population as its age distribution continues to change.
- “Long-term survivor”: The term long-term survivor has different meanings. Some have defined it as having been diagnosed with HIV before the era of effective antiretroviral therapy; others have defined it in terms of the length of time an individual has lived with HIV, e.g., for at least 1 or 2 decades. Long-term survivors can be any age. For example, older teens and adults who were perinatally infected are long-term survivors. It is useful to ask patients if they self-identify as long-term survivors and what that term means to them.
Effects of Aging
Long-term survivors appear to have physiologic changes consistent with advanced or accentuated aging Akusjarvi and Neogi 2023, even at the level of gene expression and modification Esteban-Cantos, et al. 2021; De Francesco, et al. 2019. When compared with age-matched controls who do not have HIV, older patients with HIV have more comorbidities Verheij, et al. 2023 and polypharmacy Kong, et al. 2019; Guaraldi, et al. 2018; poorer bone health Erlandson, et al. 2016; and higher rates of cognitive decline Goodkin, et al. 2017; Vance, et al. 2016, depression Do, et al. 2014, and aging-related syndromes, such as gait impairment and frailty Falutz 2020. Mental health can also be affected in many ways; in 1 study of individuals with HIV ≥50 years old in San Francisco, the majority of participants reported loneliness, poor social support, and/or depression, and nearly half reported anxiety John, et al. 2016. Older individuals may also experience negative effects due to the stigma of ageism, which may be compounded by other kinds of stigma, such as racial, gender, or HIV-related stigma Johnson Shen, et al. 2019. In addition, long-term survivors, who may have expected to die at a young age like so many of their peers, may feel survivor’s guilt Machado 2012.
These age-related concerns are not limited to long-term survivors. Although individuals who are ≥50 years old with newly diagnosed HIV are not likely to exhibit the same degree of age advancement as those who have lived a long time with HIV, they may have a delayed diagnosis, low CD4 cell counts, and AIDS at the time of diagnosis Tavoschi, et al. 2017. Late initiation of antiretroviral therapy increases the long-term risk of complications Molina, et al. 2018.
Sex differences in the effect of HIV on aging remain an area of controversy. Studies in several countries have found that women with HIV have life expectancies closer to their HIV-negative counterparts than do men with HIV, but this finding has not been supported by studies in North America Pellegrino, et al. 2023; Wandeler, et al. 2016; Samji, et al. 2013. A Canadian study showed shorter life expectancy among women with HIV than men with HIV Hogg, et al. 2017. Women with HIV in resource-rich countries appear to have a heightened risk of comorbidities Palella, et al. 2019, including cardiovascular disease Kovacs, et al. 2022; Stone, et al. 2017, cognitive loss Maki, et al. 2018, and more rapid declines in bone mineral density Erlandson, et al. 2018.
Approach to Aging in HIV Care
Approach to Aging in HIV Care
Discuss aging-related concerns: It is essential to discuss aging-related concerns with patients with HIV who are ≥50 years old. Some HIV healthcare providers and their patients have enduring relationships. Such longstanding ties promote high levels of trust, but they can also inhibit exploration of new concerns and promote too tight a focus on keeping viral load undetectable and treating common comorbidities. As a consequence, older individuals with HIV may not recognize concerns as aging-related or may feel it is unnecessary or inappropriate to discuss aging.
Care of older patients with HIV begins with recognizing that aging-related issues are a fundamental part of primary care. Geriatric concerns do not supplant other medical conditions; they reframe them in light of a multiplicity of problems and a finite lifespan. A geriatric approach, even for people in their 50s, can improve the quality of care. Older people with HIV may range from 50 to 80 years old and beyond and are a heterogeneous group. Providing care for older patients requires balance to avoid ageism and neglect of essential care while at the same prevent excessive, dangerous, or unnecessary treatments. Determining what is appropriate for patients begins with an assessment of their health and their priorities.
Asking questions such as, “Have you thought about aging?” or “What would you like to know about aging with HIV?” creates opportunities to learn about patient’s concerns about the future and to discuss survivorship, guilt, ageism, financial worries, and other issues Del Carmen, et al. 2019. This is an opportunity to discuss healthy aging through lifestyle modifications that include exercise, diet, and socialization.
Sexual health: Older age does not preclude discussions of topics that are essential to health. For example, sexuality should be considered an essential part of health at any age. There is no age limit at which clinicians should stop taking a sexual history or discussing HIV pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) for partners. Initiating discussions of sexual health, including topics such as erectile dysfunction and loss of libido in men, menopause and postmenopausal sex in women, and screening for sexually transmitted infections as needed, may also provide insights into relationships and the strength of a patient’s social network. For more information, see the Centers for Disease Control and Prevention Sexually Transmitted Infections Treatment Guidelines, 2021 > Screening Recommendations.
Cancer screening: Overall, patient health and priorities, rather than age, direct the frequency of cancer screening in individuals with HIV. The literature on adherence to cancer screening guidelines among individuals with HIV is mixed, with most Corrigan, et al. 2019 but not all Barnes, et al. 2018 studies failing to find that older individuals were screened less frequently. In patients with a good prognosis, clinicians should continue to follow screening guidelines (see the NYSDOH AI guideline Comprehensive Primary Care for Adults With HIV > Routine Screening and Primary Prevention). Screening can be re-evaluated when it conflicts with a patient’s priorities or when a patient’s prognosis is poor.
Aging-related syndromes and comorbidities: Some health concerns take on greater relevance as individuals with HIV age. Geriatric or aging-related syndromes, such as frailty, have received special attention. Frailty, which can be measured as a physical construct or as an “accumulation of deficits,” is a measure of vulnerability Kehler, et al. 2022. Frailty has been associated with increases in falls Erlandson, et al. 2019 and mortality Piggott, et al. 2020; Kelly, et al. 2019, and multiple comorbidities Masters, et al. 2021; Kelly, et al. 2019 have been linked to its development. However, it is possible to reverse frailty. Early identification may enable increased resources for those at highest risk and may also draw attention to associated comorbidities. Cardiovascular risk is increased in people with HIV, as is osteoporosis. Guidelines for bone mineral density testing, in particular, are often not followed Birabaharan, et al. 2021, despite the higher rates of osteoporosis and fractures in people with HIV compared with age-matched controls Starup-Linde, et al. 2020.
Insurance and long-term care needs: Addressing aging-related concerns directly can help older patients with HIV discuss financial worries and prepare for the future when more personal assistance may be needed. Discussing insurance coverage with patients with HIV when they are in their 60s provides an opportunity to help them prepare for the transition from commercial insurance or SNPs to Medicare-based plans. Planning is essential because commercial insurance plans or SNPs often offer more comprehensive care coordination, medication coverage, and health-maintenance services than Medicare-based plans. People with HIV may need long-term care at an earlier age than those without HIV Justice and Akgun 2019. Open discussion about support systems can help patients begin to plan for their long-term care needs.
The 5Ms-an effective communication tool: The geriatric approach can be described as attention to the 5Ms: mind, mobility, multimorbidity, medications, and matters most Tinetti, et al. 2017. The 5Ms are a useful way to communicate geriatric principles or choose an area for screening. However, some aging-related syndromes (e.g., dizziness, incontinence) or activities of daily living may not easily fit into one of these categories. Nor do the 5Ms offer a structure for a comprehensive geriatric assessment. The following discussion addresses how the 5Ms can be used to understand and explain geriatric priorities and broaden the focus beyond specific comorbidities. The 5Ms are best viewed as an explanatory framework; it is important that screening and assessment be performed with formally recognized instruments (see Table 1: Assessment Domains for Older People With HIV and Selected Tools and Resources).
1. Mind: This category includes all domains of behavioral health, including cognition, mood, and other disorders. General assessment questions about instrumental activities of daily living (e.g., using transportation, managing medications, and handling finances) can provide information about practical concerns and offer clues about cognitive or emotional barriers to self-care. Healthcare providers can also use specific tools (i.e., Table 1) to screen patients for disorders such as depression or cognitive impairment, which may be caused by factors both related to and independent of HIV Winston and Spudich 2020. Even as the prevalence of HIV-associated neurocognitive disorder has decreased among individuals with HIV, having multiple comorbidities can increase the risk of cognitive impairment Heaton, et al. 2023. Identifying factors that can be addressed to prevent or slow cognitive deterioration is a fundamental part of assessment in this category.
2. Mobility: Healthcare providers can begin to address mobility with a general assessment of activities of daily living to determine whether patients have difficulty dressing or bathing. Discussion of a patient’s fall risk can begin with a question such as, “Have you fallen in the past year?” or healthcare providers can use a comprehensive fall-risk screening tool.
3. Multimorbidity and multicomplexity: Care for older patients with HIV usually involves the management of multiple comorbidities, each of which may require treatment with multiple medications. Nonpharmacologic management (e.g., smoking cessation, dietary modification, exercise) can also improve symptoms associated with multiple comorbidities Fitch 2019.
A geriatric perspective recognizes that, in patients with multimorbidity, strict adherence to multiple disease-based treatment guidelines may not be possible or may jeopardize a patient’s health. Simultaneous management of multiple chronic conditions necessitates establishing treatment priorities Yarnall, et al. 2017, which requires understanding a patient’s priorities Tinetti, et al. 2019.
4. Medications: While older individuals with HIV are taking antiretroviral medications to suppress the virus, they may also be taking other medications to treat comorbidities, which can make medication management especially challenging. Polypharmacy is common, and women appear to be at higher risk than men, likely because of a higher prevalence of comorbidities Livio, et al. 2021. Medication evaluation should include a review of all medications, potential drug-drug interactions Livio and Marzolini 2019, and short- and long-term toxic effects. It may be beneficial to simplify antiretroviral and other medication regimens to ensure that harms from drug-drug interactions and other adverse effects of treatment are avoided Del Carmen, et al. 2019. Caution is required when adjusting or simplifying antiretroviral regimens if changes involve either initiating or discontinuing a medication with pharmacologic inhibitive or induction actions; these changes may affect levels of coadministered medications.
Consultation with a pharmacist can reduce drug-drug interactions and polypharmacy and help clinicians navigate the complexities of medication management in older patients Ahmed, et al. 2023. The University of Liverpool HIV Drug Interactions Checker is a useful tool for checking drug-drug interactions; also see NYSDOH AI ART Drug-Drug Interactions.
5. Matters most: This is the broadest category and includes medical and social priorities, sexual health, and advance directives. This category may also include discussion of palliative care and frank discussion of long-term care needs and end-of-life plans. Advance directives should be addressed and, if an advance directive is in place, revisited. It is preferable for the patient to designate a specific agent or agents who can speak for them when they are incapacitated. Patients who cannot or will not identify a trusted individual to be their agent can complete the NYSDOH Medical Orders for Life-Sustaining Treatment (MOLST) to describe their wishes regarding medical treatment. The MOLST can now also be documented electronically in the eMOLST registry.
Geriatric Screening and Assessment
General Screening Tools
Screening identifies individuals who are at risk for medical problems. Although care providers may order screening tests for specific diseases such as cancer, they may not be as familiar with screening tools designed to identify functional impairment or geriatric syndromes. In all cases, the same principles apply: brief, sensitive geriatric screening instruments such as those included in Box 1, below, can be used to identify patients who may need more intensive evaluation.
For those programs that are just starting to identify the needs of their older patients, a general screening questionnaire is an excellent place to start. General screening questionnaires are usually appropriate for all older patients and long-term survivors and often are performed annually around a patient’s birthday. Such screenings can be completed before a clinic visit; some questionnaires are completed by the patient and others are administered by a staff member. The modified World Health Organization integrated care for older people (ICOPE) screening tool has been tested for people with HIV in a New York State-wide pilot and can be administered by staff in person or over the phone; sites can also use other surveys based on workflows.
Why perform general geriatric screening? Not every patient requires a formal geriatric assessment. Tools for general geriatric screening are simple and cover a wide variety of domains; if the results indicate that more extensive assessment is warranted, then a more formal and comprehensive evaluation can be performed. Use of general screening tools can improve case-finding and, when coupled with referral, can enable targeted interventions but has not yet been shown to reduce hospitalizations or improve function Rubenstein, et al. 2007.
|Box 1: General Geriatric Screening Tools for Older Adults With HIV||
Comprehensive Geriatric Assessment
When a patient has a positive result on a general geriatric screening test, the clinician may consider a more comprehensive assessment using validated tools. Formal assessment is more effective than clinical judgment at uncovering problems Elam, et al. 1991; Pinholt, et al. 1987.
The Comprehensive Geriatric Assessment: The gold standard for geriatric evaluation is the Comprehensive Geriatric Assessment (CGA), which assesses multiple domains of health and function Singh, et al. 2017. Because it is comprehensive, the CGA is lengthy, and its use may not be feasible in many clinical settings. In the general geriatric outpatient setting, the CGA has not been shown to reduce mortality or nursing home placement, although it may reduce hospital admissions Briggs, et al. 2022. The CGA is a complicated process, requiring both expert assessors and clear care plans to manage areas of deficit, and its mixed success in the community likely stems at least in part from the complexity of creating a system that effectively responds to the assessment and includes patient buy-in.
Consulting experts in geriatric care: Some academic centers have tested models of collaboration with geriatricians Davis, et al. 2022, including referral to geriatric consultants outside the practice, multidisciplinary geriatric care within the practice, and dual training of clinicians in geriatrics and HIV medicine. More models are being studied.
Choosing domains for focused assessment: Given the limitations in both the HIV care and geriatrics workforces Armstrong 2021; American Geriatrics Society 2017, access to geriatricians may not be feasible. Community-based programs wishing to assess specific domains in the absence of available expert clinicians may choose from among many options.
Recommendations from community advisory boards and patient surveys can advise sites about patient priorities, and results from general screenings can prompt more broad assessments to identify high-prevalence problems. It may be difficult to implement needed aging-related assessments when access to expertise or funding is limited, but every attempt should be made to assess aging-related issues to the degree possible. Table 1, below, lists domains of geriatric assessment and selected resources for older patients with HIV.
|Abbreviations: ACSM, American College of Sports Medicine; AGS, American Geriatrics Society; ART, antiretroviral therapy; ARV, antiretroviral medication; CDC, Centers for Disease Control and Prevention; CGA, Comprehensive Geriatric Assessment; GOALS, Give Offer Ask Listen Suggest; HIVMA, HIV Medicine Association; HRQOL, Health-Related Quality of Life; IDSA, Infectious Diseases Society of America; MoCA, Montreal Cognitive Assessment; NIH, National Institutes of Health; NYSDOH AI, New York State Department of Health AIDS Institute; SAMHSA, Substance Abuse and Mental Health Services Administration; UCSF, University of California San Francisco; VACS, Veterans Aging Cohort Study.|
|Table 1: Assessment Domains for Older People With HIV and Selected Tools and Resources|
|Area for Assessment||Tools and Resources|
|Functional Deficits and Geriatric Syndromes|
|Basic activities of daily living (general)||Katz Index of Independence in Activities of Daily Living: bathing, dressing, toileting, grooming, transferring, locomotion|
|Instrumental activities of daily living||The Lawton Instrumental Activities of Daily Living (IADL) Scale: telephone, transportation, housekeeping, medication management, financial management, meal preparation|
|Frailty||CGA Toolkit Plus: Frailty|
|Social isolation, loneliness||Multiple screening tools and interventions are available through:|
|Other areas (e.g., depression, anxiety, stigma)|
|Comorbidities and Medications|
|Managing multiple chronic conditions||Decision making for older adults with multiple chronic conditions: executive summary for the American Geriatrics Society Guiding Principles on the Care of Older Adults with Multimorbidity Boyd, et al. 2019|
|Primary care of specific comorbidities||NYSDOH AI guideline Comprehensive Primary Care for Adults With HIV|
|ART choices and drug-drug interactions|
|Medication choices and polypharmacy|
|Bone health||Management algorithms:
|Nutrition (food insecurity, obesity, undernutrition)|
|Quality of Life|
|Caregiving (requiring and providing)||Next Step in Care Toolkits, Guides, and More for Health Care Providers|
|Overall health, pain management|
|Palliative care, prognosis, and end-of-life plans|
|Sexual health and menopause|
Integrating the Needs of Older Patients Into Medical Care
This guidance is designed to foster a shift in the practitioner’s perspective when caring for older patients with HIV. However, the clinician cannot provide optimal care in the absence of support. Clinical practices can also begin to address HIV-related aging issues by taking the steps outlined in Box 2, below.
|Box 2: Six Steps to Integrating Needs of Older Patients Into HIV Medical Care|
|1. Assess the clinic’s ability to meet the needs of older patients with HIV:|
|2. Engage older patients with HIV in program planning:|
|3. Consider options and develop protocols for identifying patients in need of aging-related care and services. For example, patients may be identified based on:|
|4. Develop an assessment strategy:|
|5. Develop protocols for referral:|
|6. Link to the Aging Network for services:|
|ONLINE RESOURCES FOR AGING AND GERIATRIC CARE|
Services and Entitlements:
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