Adherence support

Danielle Collins: Victorian AIDS Council, The Centre Clinic
Elizabeth Crock: Royal District Nursing Service HIV Program, Melbourne
Oscar Morata Ramirez: Royal District Nursing Service HIV Program, Melbourne

The importance of adherence to antiretroviral therapy

Adherence to a medication regime can be defined as ‘the extent to which patients take medication as prescribed by health care providers’.[1] Continuous adherence to combination antiretroviral therapy (ART) is paramount to its success in effectively treating human immunodeficiency virus (HIV), achieving virological suppression, preserving immune function, avoiding drug resistance and preventing opportunistic infections.[2] More broadly, it can confer a public health benefit by reducing what is referred to as community viral load (CVL). Community viral load can be defined as ‘an aggregation of individual viral loads of HIV-infected persons within a defined community.’[3] A decrease in community viral load will considerably reduce the likelihood of HIV transmission in that community.[4] [5] [6]

Missed doses, treatment breaks or interruptions, drug holidays, non-use or reluctance to commence antiretroviral therapy pose considerable challenges for clinicians.  The consequences of inadequate adherence to antiretroviral therapy can include development of drug resistance, limiting the person’s later choice of effective antiretroviral therapy regimes; development of opportunistic illnesses and increased risk of morbidity and mortality.[7] 

Many factors contribute to successful antiretroviral therapy adherence and these include careful assessment, good clinical care and adherence counselling.[8] [9]  The World Health Organization(WHO) advises assessing adherence with each patient interaction.[10]  Nurses are integral to this process given the dynamic role they play in patient care.

The START Study findings (May 2015) demonstrated that starting antiretroviral therapy earlier, when CD4 count is above 500 cells/μL, is preferable to delaying commencing treatment as previously and is reflected in national and international guidelines.[11] With strong evidence to support early treatment initiation and the rationale behind strict adherence, adherence support must remain a component of care from the outset for every person living with HIV.

Factors affecting adherence and nursing interventions used to promote adherence

Factors influencing antiretroviral adherence are multifactorial and complex.  They can be internal - pertaining to the person; and external - pertaining to those providing the care and to the medicines themselves.[12] External factors affecting an individual’s adherence can also be structural and systemic.

Nursing interventions depend on the setting and the patient population. There is no single guideline or recommendation that will prove beneficial for all patient groups therefore a variety of strategies may need to be trialled until one or more are successfully adopted by the patient.

Nursing strategies to encourage, improve and maintain adherence include discussing potential antiretroviral regimes with consideration to lifestyle, comorbidities, family history, evidence surrounding early treatment and continuing therapy once commenced.[13] [14] [15] Table 8 summarises internal or individual factors affecting adherence and nursing interventions.

Table 9 summarises external factors relating to the medication affecting adherence and nursing interventions and Table 10 summarises external factors relating to health-care providers and the broader system.

Table 8: Individual factors affecting adherence and nursing interventions [16]

Individual -related  factors influencing adherence

Comments and evidence

Nursing interventions

Younger age at HIV diagnosis

 

 

Shown to predict poorer antiretroviral adherence[17]

 

  • Empower the client by including her or him in all decision-making processes
  • Link with age-appropriate counselling and support services
  • Involve friends and family members where appropriate 

Ambivalence around commitment to life-long treatment

Regardless of age, starting a medication that requires life-long commitment can be daunting

Explore the person’s  reasons behind ambivalence

  • Provide pragmatic suggestions such as planning the best time of day to take medication or a practice run with a multivitamin before commencing antiretroviral therapy
  • Allow the person to select his or her own start date
  • Provide adherence aids such as dosette box or suggest a phone app as a reminder
  • Provide evidence-based literature and information about long-term effects of the regime

Alternative or poorly informed health beliefs

There are many myths surrounding both HIV and antiretroviral therapy.  These may contribute to an individual’s reluctance to start and adhere to therapy [18] [19] [20]

  • Explore health beliefs and provide education with non-biased evidence-based information specific to needs and level of understanding
  • Use a non-judgmental, non-coercive approach to foster engagement, taking into account the choices made by the person living with HIV and acknowledging the beliefs behind his or her decision
  • Linking the person to an HIV specialist who will listen and will nurture a respectful relationship
  • Providing non-didactic education and health promotion about HIV and related health issues. For example, encouraging vaccination, teaching people to recognise signs and symptoms of disease progression and assisting them to access medical care when needed
  • Support and encouragement in health maintenance. For example, encouraging the person to agree to take prophylaxis to prevent opportunistic infections, despite choosing not to take antiretroviral therapy
  • Health monitoring and crisis intervention including specialist referral if the client becomes unwell
  • Linking with mental health services, community-based support and other HIV-specific services such as housing and  counselling

 

Stigma related to taking antiretroviral therapy

HIV-related stigma can affect a person’s willingness to start and adhere to antiretroviral therapy [21]

  • Identify specific concerns around stigma
  • Counteract myths around taking antiretroviral therapy and living with HIV
  • Suggest counselling
  • Refer to peer support group and networks
  • Assist the person to develop strategies to minimise unwanted disclosure e.g. locked medication cabinet
  • Explore multiple levels of influence – intrapersonal, interpersonal, structural[22]

Occupational

Shift work or regular travel may make daily adherence to medication difficult.

  • Suggest  the client switches or simplifies regimes
  • Consider dosing requirements and pill burden
  • Devise a back-up plan with the client to manage a missed or  delayed dose
  • Assist client to manage side-effects if changing regimes is not possible

Lack of support network and poor engagement in health care

Social isolation and poor engagement in health care have been identified as a predictor of poor medication adherence

  • Ensure clinical support is adequate to meet the client’s needs
  • Consider a team care approach involving pharmacist, social worker, community nursing service and GP
  • Encourage client to attend peer support group
  • Consider case conferences at structured intervals

Financial barriers

Despite universal health care and subsidised antiretroviral therapy in Australia, evidence shows that 3% of Australians cease antiretroviral therapy each year [23]

  • For eligible Indigenous clients with chronic illness, antiretroviral therapy and all medicines are available free of charge through the Closing the Gap Pharmaceutical Benefits Scheme (PBS) Co-payment measure[24]
  • Ensure financial support is provided in other areas of life where possible such as a subsidised taxi card if eligible, access to free or subsidised food
  • Simplify antiretroviral therapy regime to reduce pharmacy dispensing fee
  • Refer for financial counselling

 

Mental illness

Depression and mental illness are predictors of poor adherence [25] [26] [27]

  • Engage the client’s mental health-care team.
  • Adopt a team care approach
  • Explore adherence aids
  • Develop a plan of care with the client, and a plan of action in the event of an exacerbation of his or her mental illness

Psychosocial factors

Family violence, unstable housing, food insecurity contribute to suboptimal adherence

Explore the client’s priorities which may be different to assumed priorities

  • Engage social work and other allied-health support.
  • Assess support to access and maintain stable housing
  • Provide dietary education and linkage to community agencies that provide subsidised or free food and meals

Alcohol and other drug use

The use of amphetamine-type stimulants (ATS: such as crystal meth and speed) has been identified as playing an important role in difficulties with adherence to antiretroviral therapy.

ATS use has been described as a barrier to adherence among gay and bisexual men. This may be both planned or unplanned non-adherence[28]

  • With client’s consent, engage with pharmacotherapy provider and pharmacist to provide additional support
  • Consider a planned treatment break with increased health monitoring in consultation with the client’s physician as this may reduce the risk of developing a medication resistance if unable to maintain adherence and all other avenues of support have been exhausted

Cognitive impairment and ageing

As Australia’s population ages, so too are people with HIV, many of whom are in their fifth or sixth decade of life and may have been living with HIV in the pre- antiretroviral therapy era[29]

  • Referral and assessment for HAND and other organic causes of cognitive impairment.
    • Suggest changing antiretroviral therapy regime to one with a higher degree of CNS penetrability.
  • Use of reminders i.e. use the smart phone calendar, set an alarm clock, leave notes in a visible place, involve carer or significant others to remind the person or to administer if required
  • Refer to a community-based nursing service to support and promote adherence, to coordinate medication management and administer medication regularly if required

Level of health literacy

Poor health literacy is a strong predictor of poor health and negative treatment outcomes, and as such needs to be explored with the client and accounted for during adherence counselling sessions.[30] [31] It is important to help the person understand the need to continue taking treatment when he or she feels well, and to understand health jargon terminology and meaning e.g. undetectable viral load does not mean the virus has gone[32]

  • Ensure education is appropriate to client’s level of comprehension
  • Engage pharmacist, other clinical or allied health-care providers involved in client’s care to provide a team care approach
  • Introduce supportive strategies such aseeping a diary of dosing and any questions for the next appointment with the physician or nurse

 

Ethnicity and cultural influences

People from different cultures hold varying beliefs around ill health and medication and may influence a person’s acceptance of his or her HIV diagnosis and willingness to accept treatment

  • Explore cultural beliefs around illness and medication and incorporate into adherence counselling sessions
  • Engage main community members or elders if appropriate
  • Ensure CALD resources are available
  • Use an interpreter service ensuring appropriate confidentiality provisions are in place beforehand

CALD: culturally and linguistically diverse; CNS: central nervous system;  HAND: HIV-associated neurocognitive disorder

Table 9: Medication-related factors affecting adherence and nursing interventions

Medication-related factors

Comments and evidence

Nursing interventions

Pill burden

As the HIV population ages, concomitant medication use accumulates and can lead to suboptimal antiretroviral therapy adherence

  • Introduce a dosette box or other dosage administration device
  • Engage the pharmacist and a team care approach
  • Arrange Home Medicine Review through client’s GP
  • Simplify antiretroviral therapy regime where possible

Adverse effects

Undesirable effects can have a negative effect on the capacity of the individual to cope with daily activities

Poorly managed symptoms can lead to poorer adherence and influence people’s decisions to seek and remain engaged in care[33]

  • Support through initial side-effects post- antiretroviral therapy commencement by providing anti-emetic, antidiarrhoeal and   temporary dietary restrictions as required
  • Ask the client to keep a diary of adverse effects, noting pattern, frequency, any relieving or exacerbating factors, and if any were present before commencing antiretroviral therapy
  • Consider changing regimes or the time of dosing i.e. before bed if sedating side-effects are being experienced

Drug-drug interactions

Actual or potential drug-drug interactions can introduce complexity affecting adherence

  • Liaise with all members of care team to stay abreast of medication changes
  • Educate client about drug-drug interactions with an emphasis on over-the-counter remedies such as antacids and herbal medicine
  • Suggest Liverpool website phone app

Food requirements

The food requirements associated with some antiretroviral therapy regimes may act as a barrier to optimal adherence

  • Client education about food, vitamin and supplement interactions with antiretroviral therapy
  • Review regime to change antiretroviral therapy or time of dosing
  • Dietitian referral
  • Ensure the client has access to food and basic amenities

Table 10: Provider, health system and socio-political factors affecting adherence and nursing interventions

Provider, health system and socio-political factors

Comments and evidence

Nursing interventions

Service access

 

Access to health services may provide a barrier for clients living in remote and rural regions 

Physical access to a service may also pose a barrier for an individual living with a disability

Specific settings such as prison, immigration detention or other institutional settings may thwart or support adherence [34]

  • Consider referral to a local provider or telehealth conferences
  • Consider using the local pharmacy for medication collection
  • Ensure the health services the client is accessing are aware of his or her specific needs
  • Outreach of HIV specialist teams to custodial settings

Cost

See Financial barriers

 

Provider attitude

Institutionalised stigma may prevent people with HIV  engaging in their care [35]

  • Educate and dispel myths about HIV among clinicians
  • Ethical consciousness-raising [36] [37]

Incorrect prescribing, dispensing or administration[38]

 

Prescriber errors can contribute to suboptimal adherence as can incorrect dispensing from pharmacy

Dosing errors and drug interactions [39]

 

Consequences can include:

o   Drug resistance

o   Treatment failure

o   Toxicities

o   Loss of trust

o   Increased costs

o   Legal implications[40]

  • Enhanced medication reconciliation upon admission or discharge from hospital or other transitions or settings (respite, aged care) [41]
  • Nursing consultation with HIV specialist pharmacists
  • HIV nurses supporting, educating and mentoring general nursing staff
  • Improved data collection, analysis of medication errors
  • Attention to factors contributing to errors: interruptions, communication, lack of adequate medication reconciliation processes and procedures[42]

Fragmented or uncoordinated care

 

Poor continuity of care may contribute to poor adherence

  • Referral to community nursing services with expertise in HIV can be an important early intervention for those identified as at risk of poor adherence
  • Involvement of community sector (e.g. HIV organisations, local services) to provide supports such as transport
  • Professional and industrial nursing advocacy for appropriate staffing levels, skill mix

Other psychosocial and socio-political factors

Examples:

  • Family dysfunction
  • Criminalisation of drug use
  • Homelessness
  • Poverty
  • Cost shifting
  • Refer for social work and counselling
  • Support in accessing legal, housing  and financial services
  • Structural advocacy

 

Conclusion and future directions

The ability of people with HIV to adhere to treatment can be a complex matter, influenced by a wide range of individual, system-related, psychosocial and socio-political factors.

Nursing strategies to encourage, improve and maintain adherence include discussing potential antiretroviral therapy regimes with consideration to side-effects, simplification, lifestyle, comorbidities and family history; evidence surrounding early treatment and continuing therapy once commenced.[43] [44] [45] Addressing social stigma related to revealing HIV status during adherence counselling sessions can be effective in helping to improve adherence.

Given the impetus towards treatment as prevention (TasP), and the success of international studies demonstrating daily antiretroviral therapy used as pre-exposure prophylaxis (PrEP), the role of the nurse in supporting adherence to antiretroviral therapy extends not just to ongoing support to those living with HIV but to a greater role in biomedical HIV prevention as well.[46] (See Section 14 Biomedical HIV prevention for more information).

At the systemic and socio-political level, nurses can contribute through research, policy development and structural advocacy to the development of systems that support health promotion, and access to and equity within health care, so that all people with HIV will have equitable chances of optimising their adherence to antiretroviral therapy and thereby maximising their health.

For other useful resources, see:
http://www.ashm.org.au/Pages/LMS/Gay-Friendly-GP-Online-Learning-Module.aspx

Adherence - Case example

Bert is a 43-year-old gay man who was diagnosed with HIV seven years ago.  He had a firm belief that HIV medications were toxic and preferred to use complementary therapies, vitamin supplements and meditation. He became unwell following a psychotic episode and was hospitalised and diagnosed with cerebral toxoplasmosis.  He started antiretroviral therapy in hospital, and was discharged home with a referral to an HIV community-nursing service. 

Bert accepted visits reluctantly and suspiciously, expecting that the HIV community-nursing team would lecture him and seek to impose their views on him.  The nurses filled a dosette for him each week and helped him organise his prescriptions to ensure a continuous supply of antiretrovirals and other medicines.  He was incapable of doing this task himself initially due to memory and planning difficulties but soon improved and gained independence with managing his medicines.  At each visit he discussed his wish to stop antiretroviral therapy and return to his complementary therapies.  The HIV community nurses slowly gained his trust, allowed him the time to express his concerns and discuss his preferences, and helped him develop strategies to incorporate his desired lifestyle changes and wishes into his health regimen.  They liaised with his GP over side-effects he experienced on antiretroviral therapy, and helped him tailor his medication times to suit his dietary preferences, lifestyle and tolerances.  They persuaded him to remain on antiretroviral therapy without imposing home visits upon him.

Over time, Bert has stopped antiretroviral therapy on a few occasions, when he felt that side-effects affected his functioning.  He recently requested a change in antiretroviral therapy due to joint pain, and this change has helped.  Bert still has reservations about antiretroviral therapy but is adherent to it and remains well.  He continues to live a healthy lifestyle, eats well, exercises and meditates.  He maintains a strong relationship with his GP and the community nurses discharged him from their service.  He occasionally calls with questions or concerns.

Additional resources:

http://stipu.nsw.gov.au/wp-content/uploads/FINAL_PREPARING-FOR-TREATMENT_V11-1.pdf/

http://stipu.nsw.gov.au/wp-content/uploads/FINAL_SUPPORTING-ADHERANCE_V9.pdf/

Australian Commission on Safety and Quality in Health Care. Assuring medication accuracy at transitions of care: medication reconciliation. 2011.
www.safetyandquality.gov.au/internet/safety/publishing.nsf/Content/Priority

Program-06_MedRecon [cited 2012 Jan 6]
http://www.ashm.org.au/Pages/LMS/Gay-Friendly-GP-Online-Learning-Module.aspx

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