Nursing considerations of major clinical issues

Elizabeth Crock: Royal District Nursing Service HIV Program, Melbourne
Jayne Howard: Victorian HIV Consultancy, The Alfred

Ageing with HIV (See also HIV and Ageing)

As the life expectancy of people with human immunodeficiency virus (HIV) rises, more people with HIV are now entering older age. The average age of people with HIV in Australia is over 45 and the number of people over 60 has been increasing at 12% per year since 1995.[1] The proportion of people over 55 years with HIV was 25.7% in 2010, and there is a predicted increase to over 44% by 2020.[2] [3]   Older people with HIV may be long-term survivors of HIV. However, there are also significant numbers of older people being diagnosed with HIV.  Between 2012 and 2014, 17% of new HIV diagnoses in Australia occurred in people 50 years and over.[4]  People diagnosed with HIV when they are over 50 years of age tend to have more advanced disease and experience greater HIV–related illness.[5] Older people who are newly diagnosed and have advanced HIV disease can have very different needs to those who are long-term survivors (see Nursing implications of late diagnosis - severe disease, treatment and prevention of opportunistic illnesses).

An important question with respect to HIV is the phenomenon of early, premature or accelerated ageing.  It has been observed that people with HIV experience some problems associated with ageing at earlier ages than people who do not have HIV, such as frailty and osteoporosis.  This has been attributed to the effects of the virus, lifestyle risk factors which are over-represented among people with HIV,[6] but also to some antiretroviral medications.[7]

Long-term survivors

People who have survived many years with HIV, some from the mid-1980s, are often referred to as long-term survivors.  Specific needs of long–term survivors with HIV include psychological and emotional concerns relating to grief and loss, particularly for gay men. Older gay men with HIV may struggle with issues such as the interruption of their life plans, maintaining good health and managing their HIV treatments.[8] Although the HIV population in Australia is becoming more diverse, it still affects gay men disproportionately, especially those who have had the infection long term. There is global and Australian literature documenting that lesbian, gay, transgender and intersex people (LGBTI) experience systematic discrimination within health-care systems and now that many are requiring aged -care services, they are having to confront discrimination and lack of knowledge about their needs, when they are at their most vulnerable.[9]

Having a hopeful attitude, being an active participant in health care and having excellent relationships with their health-care team have been associated with long-term survival with HIV.[10]  However, the following concerns can be significant for long-term HIV survivors.

Experiencing multiple losses and grief

In the 1980s, many gay men in Australia (and internationally) had their social networks decimated, and their lives shaped by the HIV epidemic.[11] Many long-term survivors have suffered the loss of lovers, partners, friends and their community. For some, in the early days of the HIV epidemic in particular, the grief of gay men losing their partners was not recognised by families and by wider society.  In many cases, they were told they would not survive for long; now they are ageing, having spent their youth expecting to die, and watching many of their friends and supporters die.  Eric Rofes in the late 1990s wrote how the ‘mass psychic numbing, fragmentation and suffering experienced by gay men is analogous to that suffered by survivors of genocide and wars’, suggesting that methods that have worked to aid these  survivors may be more adaptable  to people with HIV than traditional models of grieving.[12]   It is now increasingly recognised that some long-term survivors are experiencing symptoms usually associated with post-traumatic stress disorder (referred to by some as AIDS survivor syndrome).[13]

Mental health and resilience

Depression and anxiety

Perhaps not surprisingly, depression and anxiety are the most common mental health problems among people with HIV; sometimes depression is related to the cumulative losses of friends and relationships that they have experienced, lack of social support, loss of employment, career prospects or earning capacity and a sense of hope for the future. It is also evident that lesbian, gay, bisexual transgender and intersex men and women experience depression and anxiety at higher rates than the wider population and can be at a greater risk of suicide and self-harm. See:
http://www.beyondblue.org.au/resources/for–me/lesbian–gay–bi–trans–and–intersex–lgbti–people
http://resources.beyondblue.org.au/prism/file?token=BL/0648

Despite a higher prevalence of anxiety and depression among people with HIV, research also suggests that many of these people of all ages have developed resilience,[14] a protective factor for longer-term mental health.  While there is little nursing research on this topic, some studies have shown that nurses can promote resilience through modelling social skills and assisting the client in developing coping skills.[15]  Bletzer notes that resilient people with HIV tend to have a higher level of knowledge of their illness, demonstrate self-responsibility, and persistence.[16]  Others have noted better quality of life, less psychological distress, positive beliefs, and the ability to relinquish control over the uncertainty of life with HIV among those who demonstrate resilience.[17] [18] 

Multimorbidities

People with HIV have a greater risk of comorbidities including heart disease, cancers, osteoporosis and neurocognitive impairment, often manifested at younger ages.  It is thought that HIV contributes to more rapid ageing due to prolonged immunodeficiency, chronic inflammation and immune activation.  Side-effects of treatments are also believed to contribute to earlier ageing in those with HIV.  

Research indicates that older people with HIV have multiple co–occurring diseases (comorbidities or sometimes multimorbidities), experience anxiety about ageing, high rates of depression, reduced self–esteem (sometimes related to altered body shape and image), and feel the need to carefully manage disclosure of their HIV status (and sexuality) in the face of stigma and perceived stigma.[19] The nursing literature on ageing people with HIV also emphasises comorbidities, long–term medication toxicities and drug interactions, erectile dysfunction, diabetes, peripheral neuropathy, hepatitis C and renal disease as concerns requiring attention.[20] [21] 

One large international case-control study showed that, compared with HIV–negative controls, HIV–positive people have a higher rate of comorbidities at all ages; however, the most significant rate was among those over 60 years, where the rate of comorbidities in people with HIV was 63% compared with 12% for HIV–negative controls.[22] In addition, comorbidities may appear from 10 to 20 years earlier than they do among HIV-negative people.[23] [24] [25] Non–acquired immune deficiency syndrome (AIDS)-related conditions or comorbidities that disproportionately affect people with HIV include cardiovascular disease, diabetes, osteoporosis, liver and kidney disease, mental health issues, cognitive problems, drug and alcohol problems to name a few. Cardiovascular disease can be related to untreated HIV infection and certain antiretroviral therapies.[26]

Cancers

People with HIV are at a higher risk of some types of cancers. This is believed to be due to several factors, including immune deficiency, co-infection with other viruses such as human papilloma virus (HPV) or hepatitis viruses[27] and higher rates of smoking.[28]  Certain cancers - Kaposi sarcoma, non-Hodgkin lymphoma and invasive cervical cancer are classified as AIDS-defining illnesses.  HIV-associated cancers that are mostly infection–related occur at relatively high rates in people with HIV - anal cancer, vulvo-vaginal cancer, penile cancer and liver cancers.[29]

Some cancers can be prevented.  Nurses’ roles in preventing both HIV-related and other cancers focuses on health promotion and client education (advice and referrals for smoking cessation, safety in the sun to minimise the risk of skin cancers), promotion of appropriate screening for cancers, and antiretroviral adherence support to maintain optimal immune health.  The START study results indicate that the risk of at least some cancers is reduced if people start treatment early.[30]

While AIDS–defining cancers remain the most common cancers in people with HIV, both HIV–related and non–AIDS–defining cancers are increasing and are much more prevalent among people with HIV than within the general population.[31] Hospitalisation rates for people with HIV have been reported as 50–300% higher in a cohort of HIV patients in Australia than in comparable groups (by age and sex) in the general population, with age being significantly associated with hospitalisation.[32]  Mortality rates among people with HIV are still around 10–fold higher than in the general population.[33]

Thus, as people with HIV live longer, the prevalence of comorbidities increases significantly, and negatively affects health-related quality of life – people with HIV require enhanced community support.[34]

Palliative care skills and knowledge are still important in the care of people with HIV. Referral to palliative care services and collaborative care between HIV and palliative care services can ensure quality care at the end of life.

Respite and long-term care

People with HIV may be concerned about accessing services such as respite and long-term aged care, due to fear of stigmatisation and discrimination when their HIV status is disclosed, and to a perceived lack of knowledge and experience of carers and care workers in caring for this group.[35]

Nurses working in the HIV sector can provide assistance in advocating for people with HIV and in navigating services, in residential, respite or community care.

Community-based and district nurses, carer support agencies in various states and territories and general practitioners can advise on options for people with HIV in their local areas, as well as services that can help carers.   The Commonwealth Home Support Program helps facilitate respite in a person or their family member’s home, in community centres or aged-care facilities.

http://www.myagedcare.gov.au/#!/aged-care-services/commonwealth-home-support-programme

Home care packages are now consumer directed, that is, people and carers can choose how their home care package of services is provided:  see My Aged Care website for further information. Assessment for respite and for home care packages are obtained via My Aged Care:
http://www.myagedcare.gov.au/

To download a guide for carers of older people with HIV see:
http://www.livingpositivevictoria.org.au/Default.aspx?PageID=10543535&A=SearchResult&SearchID=68002762&ObjectID=10543535&ObjectType=1

1.
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2.
Roberts, JM. Services for People Ageing with HIV in Victoria: a Mapping Study. Alfred Hospital, Infectious Diseases. Monash University, 2013. 
3.
McDonald KE. Ageing with HIV in Victoria: Findings from a Qualitative Study. HIV Australia 2013; 11(2):13-16, July. 
4.
Murray JM, McDonald, AM, Law MG. Rapidly ageing HIV epidemic among men who have sex with men in Australia. Sexual Health 2009; 6(1):83-86. 
5.
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6.
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7.
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8.
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9.
Barrett C, Harrison J, Kent J. Permission to Speak: Determining strategies towards the development of gay, lesbian, transgender and intersex friendly aged care services in Victoria. Melbourne: A Project of Matrix Guild Inc in conjunction with Vintage Men Inc.  2008. 
10.
Shernoff M. Long term survivors of HIV/AIDS. 1996; The Body: The Complete HIV/AIDS Resource. 
11.
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12.
Rofes E. Reviving the tribe: regenerating gay men’s sexuality and culture in the ongoing epidemic. Keynote address presented at the Health in Difference,  First National Lesbian, gay, transgender and bisexual health conference,  Sydney, 3rd–5th October, 1996:27–32. 
13.
Anderson T. What is AIDS Survivor Syndrome? 2015; LetsKickASS.org/aids-survivor-syndrome/ 
14.
Betancourt TS,  Meyers-Ohki SE, A. Charrow A, Hansen N. Mental Health and Resilience in HIV/AIDS-Affected Children: A Review of the Literature and Recommendations for Future Research J Child Psychol Psychiatry 2013; 54(4):423–444, April. 
15.
De Santis JP, Florom-Smith A,  Vermeesch A, Barroso S,  DeLeon DA. Motivation, Management, and Mastery: A Theory of Resilience in the Context of HIV Infection. J Am Psychiatr Nurses Assoc 2013 Jan-Feb; 19(1):36–46. 
16.
Farber EW, Schwartz JAJ, Schaper PE, Moonen DJ, McDaniel JS. Resilience factors associated with adaptation to HIV disease. Psychosomatics 2000;41:140–146. [PubMed
17.
Farber EW, Schwartz JAJ, Schaper PE, Moonen DJ, McDaniel JS. Resilience factors associated with adaptation to HIV disease. Psychosomatics 2000;41:140–146. [PubMed
18.
De Santis JP, Florom-Smith A,  Vermeesch A, Barroso S,  DeLeon DA. Motivation, Management, and Mastery: A Theory of Resilience in the Context of HIV Infection. J Am Psychiatr Nurses Assoc 2013 Jan-Feb; 19(1) pp. 36–46. 
19.
Saugeres L, Elliott J, McDonald K.  Report of Positive Ageing: A Qualitative Study. Melbourne: Monash University, 2012. 
20.
Vance D, Mugavero M, Willig J, Raper J, Saag M. Aging with HIV: A Cross-sectional study of Comorbidity Prevalence and Clinical Characteristics across Decades of Life. Journal of the Association of Nurses in AIDS Care 2011; 22(1):17-25. 
21.
Vance D. Aging with HIV: Clinical Considerations for an Emerging Population. American Journal of Nursing 2010; 110(3):42-47. 
22.
Guaraldi G, Orlando G, Zona S et al. Premature Age-related Co-morbidities Among HIV-infected Persons Compared with the General Population. Clinical Infectious Diseases 2011; 53(110):1120-1126. 
23.
Libman H. Will you still treat me when I’m 64? Care of the older adult with HIV infection. Topics in Antiviral Medicine, 2015; 23(2):97-103, May/June. 
24.
Pathai S, Bajillan H, Landay AL, High KP. Is HIV a Model of Accelerated or Accentuated Aging?  J Gerontol A Biol ASci Med Sci, 2014; 69(7):833-842. 
25.
Capeau J. Premature aging and premature age-related comorbidities in HIV-infected patients: facts and hypotheses.  Clin Infect Diseases, 2011, online edition, doi: 10.1093/cid/cir628. 
26.
Nolan D, Willcox J. Long-term health: Preserving Cardiovascular Health. In HIV Life Plan Clinical Guide: A clinician’s guide to assessing and managing HIV-associated comorbidities. Melbourne: Adrenalin Health Care, 2012. 
27.
Grulich A. van Leeuwen MT, Falster, MO, Vajdic CM. Incidence of cancers in people with HIV/AIDS compared with immunosuppressed transplant recipients: a meta-analysis. Lancet 2007; 370(9581):59-67, July 7. 
28.
Broom J, S. D. Moving from viral suppression to comprehensive patient-centered care: the high prevalence of comorbid conditions and health risk factors in HIV-1-infected patients in Australia. J Int Assoc Phys AIDS Care 2012; 11:09-114. 
29.
Grulich A. Long-term health: detecting malignancies. In D. E. Baker, HIV Life Plan Clinical Guide: A clinician's guide to assessing and managing HIV-associated comorbidities (pp. 57-60). Fitzroy: Adrenalin Healthcare Pty Ltd, 2012. 
30.
National Institutes of Health. Starting Antiretroviral Treatment Early Improves Outcomes for HIV-Infected Individuals.  NIH-Funded Trial Results Likely Will Impact Global Treatment Guidelines, 2015, NIH. http://www.niaid.nih.gov/news/newsreleases/2015/Pages/START.aspx# 
31.
Petoumenos K, van Leuwen, M, Vajdic, C et al. Cancer, immunodeficiency and antiretroviral treatment: results from the Australian HIV Observational Database (AHOD). HIV Medicine 2013; 14(2):77-84. 
32.
Petoumenos K, van Leuwen, M, Vajdic, C et al. Cancer, immunodeficiency and antiretroviral treatment: results from the Australian HIV Observational Database (AHOD). HIV Medicine 2013; 14(2):77-84. 
33.
Petoumenos K, van Leuwen, M, Vajdic, C et al. Cancer, immunodeficiency and antiretroviral treatment: results from the Australian HIV Observational Database (AHOD). HIV Medicine 2013; 14(2):77-84. 
34.
Rodriguez-Penney A, Iudicell J, Riggs P et al. Co-morbidities in persons infected with HIV: increased burden with older age and negative effects on health-related quality of life. AIDS Patient Care and STDs 2013; 27(1): 5-16. 
35.
Crock E. In Positive caring: a handbook for people caring for older people living with HIV and a guide for people living with HIV. Melbourne: Living Positive Victoria/RDNS Ltd, 2015.