Importance of intensive adherence support for patients with HIV-related neurological symptoms

Simon Collins, HIV i-Base

A study from the Mildmay Hospital, a respite and palliative care centre in London, showed how HAART-related benefits can be realised in HIV brain-impaired (HRBI) patients. These patients indeed require particularly close adherence support. Their medical condition produces reduced motivation, forgetfulness and a less organised lifestyle, preventing the adherence to HAART, which is vital if they are to see these symptoms improve.

The study reviewed notes from inpatients who had been discharged home or who were dying from July-December 1999. An Activities for Daily Living (ADL) score was determined for each patient at admission to the HRBI Unit and at discharge, based on ability to eat and drink independently, continence, self-caring with hygiene, independently mobile, comprehensible and socially appropriate behaviour.

Health and life circumstances are addressed from a multidisciplinary team including nursing, dietician, day staff, counselling, OT and physiotherapy, psychotherapy and social worker support before moving on to self administration of medication.

The steps for progressing to self medication at the after this programme were:

  1. establishing a daily routine with regular meals, activity and sleep,
  2. ensure medication is taken adequately when directly supervised,
  3. planning twice-daily regimens whenever possible suitable for use with dosette boxes,
  4. start dosette box encouraging patient to remember each dose while being checked and reminded,
  5. once individual dosesare remembered, moving to single day supply in ‘finger dosette’ boxes, still with support
  6. once taking daily medication, move to weekly dosette box
  7. patient discharged home to self-administer medication, with carer trained to fill dosette box

Each step needed to be achieved before moving to the next stage and this was necessarily an intensive protocol. However, this was a group of eight advanced patients (mean CD4 = 80.7, range 5-195 cells/mm3 and mean viral load >300,000, range <200 – >750,000 copies/ml), none of whom were adherent when first hospitalised.

Five patients complied fully with this programme. All had triple or quadruple therapy. They improved their ADL score to maximum of 7 points from an initial mean of 3.8 (range 3 – 5). All remained well and adhered to therapy after discharge. One patient who failed to comply with the programme had a fall in ADL score from 7 to 5, was discharged to a chaotic lifestyle and has since died.

The study concludes that ‘patients unable to take therapy because of HRBI may be rehabilitated to be independent, self-medicating and adherent to therapy’.


Patients remain under the care of their own HIV specialist when attending the Mildmay. Facilities include single rooms for all patients and there is a family care centre and nursery. Patients who would benefit from this intensive support can be referred from all health authorities.

For referral enquiries call 020 7613 6347 or email Dr Meadway can be contacted directly on 020 7613 6313.

Ref: Meadway, J and S. Peddie, S – Helping brain-impaired patients take HAART. 5th Intl Congress on Drug Therapy in HIV Infection, Glasgow. 22-26 October 2000. Poster 108.

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