THE PYSCHOLOGICAL IMPACT OF CMV EYE DISEASE

Now that people with HIV disease are living longer they frequently have diseases which are not cured by medical intervention but can only be controlled. However, medical treatment itself may create difficulties for the patient.

Visual loss resulting from CMV retinitis is well documented in HIV disease. The impact which this disease has on people is less well reported.

Today, I will present some data describing how CMV eye disease affects people together with the emotional impact it can have. If a drug is to be effective it is vital that firstly the preparation is good; secondly that the patients take it as prescribed and thirdly that they do not cause themselves more damage by administering it with poor regard for infection control. Compliance in CMV eye disease will be discussed with respect to IV and oral preparations.

The launch of any new drug preparation is an exciting time for patients. The more treatment choices there are, the less anxiety there is in patients over what would happen if there were problems with their current therapy. The acceptability of the oral preparation is discussed and possible effects on quality of life of patients.

1. The effect of CMV eye disease on life

• Poor body image
• implications for the future
• sight
• Driving
• Reading
• Blindspots
• Work
• Social Life/Sex

2. Psychological distress and CMV eye disease

• Distress not associated with extent of visual loss
• over 25% showed clinical depression
• More than 35% were clinically anxious
• Low mood was associated with more drug side effects

3. The importance of accurate information

• Where information about medication is obtained
• Effect of a lack of information
• Who can provide the information

4. Compliance

• Fairly good compliance with recommended procedures for administration of IV medication
• Is fairly good, good enough?
• Compliance better in those with good emotional support

5. Acceptability of an oral anti-CMV preparation

• A majority of patients looked forward to the availability of an oral preparation for treatment of CMV eye disease
• The acceptance of extra tablets
• The required efficacy of the oral preparation

6. The implications for good compliance with the oral preparation

• Clear, simple, accurate information about the preparation should be provided
• Psychological support with the decision making processes i.e. whether to take oral or IV medication, should be available
• Support with coming to terms with the meaning of a CMV diagnosis i.e. grief over the loss of past good health and anxiety concerning what the future holds, should be made available.
• Help with developing the coping skills necessary for living with CMV eye disease.

For many, emotional support is provided by their partners and close friends, frequently with the back-up of the carers who help with the administration of IV medication.

As compliance has been found to be related to good emotional support for those on IV medication, we must anticipate that this may be necessary for those on oral medication and make sure it is available.