UKC: Psychological Impact Project

The following study conducted by The UK Coalition of people living with HIV and AIDS (UKC) is reproduced below as it strongly supports and defines the case that the anti-HIV medication being taken by many HIV positive people has an impact on their mental health which can be so severe as to lead to their suicide in extrreme cases, or depression in almost all cases. These data are vital information to inform tutors and college staff in their interactions on a day to day basis with thier students who are on these medications.

This project was conducted in 1999/2000 to question whether there were psychological side effects of anti viral therapy. This is the report that the researchers, Wayne Barton and Andrew Hanuman produced with financial and logistical support from UKC. (Wayne Barton is a former trustee of Positively Healthy).

INTRODUCTION

The study aimed to discover what, if any, psychological side effects were being experienced by patients who are HIV positive and are on anti-retroviral combination therapy. The side effects due to the pharmaceutical properties of the drugs. Responders were asked to assess for themselves to what extent if any the drugs were having an effect on their mental health. Drug companies have informed patients about the possibility of psychological side effects in the literature given out to patients in the form of patient product information, which are given to patients when picking up their medication at pharmacy.

Since the beginning of the HIV epidemic there has never been so much hope surrounding treatment options for the richer western patients infected with the virus. The cost of the new drug therapies has meant that the  funds used to deliver alternative (therapies) and psychological support are being slowly diverted away and often these services are no longer available. What we are now experiencing is a culture where, in  the western world, we have hope in only one option, drugs. The questions need asking. What happens if they fail?

What if they are causing too much distress for the patient? And What if they can, in some patients, cause such psychological harm that they depress a persons motivation to live? 

METHODOLOGY

The methods involved included both qualitative and quantitative research in the form of questionnaires and in-depth interviews.   Ten persons living with HIV were interviewed at length. Questionnaires were sent to different HIV organizations in the United Kingdom. All respondents had to be either currently taking treatments or have used drug therapy recently.  

The study found the following-

  7.8 %, of questionnaire's were completed.

This was a United Kingdom sample yet most responders were from the London area.  85% of respondents were male. 15% were female 

The study group were asked to state the drugs that they were taking (or had taken). 

 
Zidovudine AZT  64
Didanosine DDI 41% 
Zalcitabine DDC 36% 
Stavudine D4T  72%
Lamivudine 3TC 75%
Combivir AZT + 3TC 23% 
Adefovir 0% 
Nevirapine 65%
Delavirdine 1 % 
Loviride 0% 
Efavirenz Sustiva 21% 
Saquinavir Invarase 37% 
Ritonavir Norvir 31% 
Indinivir Crixivan 30%
Nelfinavir Viracept 27% 
Soft gel Saquinavir Fortavase 6%

61% of respondents had changed their drug combination. 39 % were still on their first combination.

Those who had changed treatment

7.2% had changed once  
 23.4 % twice 
 29.7 % three times 
 15 % four times
 4.3% five times
 6.4 % six times
 4.3 % more                             

The most stated reason was "treatment failure"

The study group were asked if they had noticed psychological or mood changes since starting therapy. 

 79% stated that they had noticed changes.
 18% stated that they had noticed no changes
  2 people did not answer.

"Just pulled out of combo , yes you guessed, it was simply destroying my life again. My doctor said that fifty per cent experience side effects on Sustiva, and out of those fifty per cent, only sixteen per cent settle down. The mind boggles as to what happens to the rest- probably dead or in the loony bin" Patient L 

``I was not going out, I didn't feel part of the world, I had major mood swings and very upset for no reason at all...I stopped taking the Abacavir because of the nightmares and lack of  sleep... I stopped taking the drugs, there was no side effects at all, it's ceased now, it took about three weeks to go away. I'm in control of my life again." Patient J. 
 

The study group were asked to state any psychological side effects that they have experienced or are experiencing.

 Depression 67% 
 Irritability 46% 
 Mania 10%
 Anxiety 58%
 Hallucinations  12%
 Vivid dreams 35% 
 Suicidal thoughts/actions 30%
 Other 6% 
 

"A potent combination of DDI , Abacavir and Efavirenz, He explained that side effects would only last for a week or two weeks. He emphasized that on Efavirenz, I would experience "Vivid dreams"and a feeling of being stoned the next day, but it would pass over four days or so. Within 24 hours of taking the first doses I was in a state of panic and disorientation. It was Saturday and it was difficult to get through to a helpline so I called the hospital pharmacist and he comforted me by suggesting that I treat the day as if I was  recovering from a good night out since the medication included a particular recreational drug that he was not prepared to mention... However I became a complete cabbage, I was  unable to cross the road, coordinate my fingers to use the computer, could count change and at time could not even remember where I lived. I would suddenly burst into tears, start shaking with paranoid fears and began feeling suicidal... It also caused me to argue constantly with my partner and almost wrecked my relationship...I feel that their must be others whose lives are being wrecked if they do not change these drugs or address these issues" Patient L 

The study group were asked whether they felt they received full support and information in managing difficulties.

Respondents answering YES: 53.2%   Respondents answering NO: 35.6% 
 

The study group were asked whether they were ever warned that certain anti-HIV drugs may cause mental distress and psychological side effects. 

Our study showed

 47% were not warned  

 42% were warned

 11% did not respond

When asked if a warning was given of psychological side effects

Patient  ``I wasn't told about depression, in-fact I wasn't told very much information about them. I went in, I saw my consultant, told him what I was doing, I was like a sheep to the slaughter I just followed and took his word. All he explained to me was the regime I should be following"

The study group were asked whether friends, partners, family or carers had commented on any changes in psychological state since starting therapy.

Respondents answering YES: 40%
Respondents answering NO:40%

When the study group were asked whether they had suffered any psychological difficulties that have interfered with day to day compliance of medication

NOT AT ALL:39.39% 
SOMEWHAT: 45.45%
QUITE A LOT: 15.15%

When the study group were asked whether they found their use of the following anti-depressants, tranquilizers, or hypnotics had either been started or increased since starting drug therapy,  answered:    80% of responders were taking Central nervous system medication.

 Prozac: 16.8%
 Mirtazapine: 1.2%
 Cipramil:0%
 Lustral: 6.4%
 Dothiepin: 5.1%
 Amitriptyline: 10.3% 
 Temazepam: 29% 
 Zopiclone: 11% 

Women's issues

Women are often excluded from drug trials due to childcare commitments or the possibility of pregnancy, therefor little clinical data is available on the effects these drugs can have on a  woman's psychological state.

A woman may have more pressures to deal with, for example being the caregiver to a sick spouse or looking after children infected or not... Some women suffer from mood swings, irritability and depression due to the menstrual cycle. Of course using drugs that can compound these feelings should be given with caution and the side effects clearly explained. Follow up appointments should be offered to see if any distress is caused.

 Patient A "no doctors asked do you get bad pre menstrual tension, which I don't but I am usually aware the week or so before, that I do get a bit more sadistic and I do have a  tendency to get a bit more emotional. It was actually how I felt yesterday which was why I was so surprised because its just post menstrual, it could be another three weeks before I  feel anything like this. Suddenly something sets me off and I burst into tears, so I hope it's the drugs because if it isn't, it's a bit more worrying. But nobody has ever actually asked me about my psychological state or mood swings"

SUICIDE 

Our results showed that  29% of patients had experienced suicidal thoughts or actions. Quality of life and depression were factors leading to this. Transient suicidal thoughts may  occur throughout the course of HIV disease, our study showed high rates of depression 67% which is of course closely related to suicidal thoughts and actions. Other factors leading to suicidal thoughts include social isolation, substance abuse, loneliness, being perceived as being medicalised, fear of ill health and relationship difficulties.

The following is an extract from a person's suicide letter. The suicide was successful. "I want to say good-bye to you and just try to understand that this is my condition, this is why I really want to end my life, I just don't want to go on living...Is it just the depression, or is it my whole life and the fact that I am no longer satisfied with it, to go on living, to become old and to go on suffering this illness and to go through the rejections and the stuff connected with HIV and AIDS. I just don't want to do it...I just hope I will be able to do it, I hope I will not  fail this time around...I know I've been very optimistic at times and I thought, well, I can carry on, I have projects, I have potential, they tell me I have potential. I have been a very  intelligent guy - so I thought. But looking back, I do have many regrets throughout my life and I just don't understand why I've been like this and I just don't feel like, you know, pick up the pieces and carry on. The future is, you know, looks bleak for me, its a mental state."

Discussion.

This study showed that many patients had changed their drug treatments 61% and although many reasons were given the most common reason given was 'treatment  failure'. As the study is looking at the psychological effects of treatment it is important to note that many responders stated psychological difficulties as their reason for change. With many patients having limited treatment options it is therefor important that these psychological difficulties reported be addressed and whatever interventions necessary offered in order to allow the patient the maximum benefits from their current combination so that future treatment options can be utilized.

Many responders 79% stated that they had noticed psychological changes since starting drug therapy but roughly only half of those were warned that certain drugs could cause these.  Many patients said that they researched their treatments and were aware but there are many patients who for many reasons do not research. This of course gives the health provider a responsibility to give as much information as possible. Although this high number of people reporting psychological difficulties while taking treatment only 41 % of people were warned and 47% of people were not warned. A figure of 53% felt that they had received full support and information in managing difficulties but a high percentage 36% said they had not. These figures clearly show a short fall in medical care in relation to information and support needs of the group.

In a recent study the authors concluded that depression increases the risk of death among HIV infected gay and Bisexual men. The authors concluded that "the association between  depression and mortality in this study is independent of physiological and clinical measures of HIV disease progression, such as CD4 counts". Mayne says "these results suggest that depression affects mortality in ways other than direct physiological channels". Other possible explanations for the relationship between depression and HIV disease progression are behaviors associated with depression, such as increased substance abuse and smoking" ².  It is also true that many will assume that people living with HIV and  AIDS are more prone to mental health difficulties than other populations. Our study shows high rates of negative reported psychological effects; this contradicts other studies that show  that people living with HIV are no more prone to difficulties than other groups.

Of those who answered that their psychological difficulties had interfered with their day to day compliance to medication 39.9 stated not at all. 45.45 % stated that it interfered  somewhat and 15.15% said quite a lot. This gives a result of those who answered a rate of 60% of people stating that they are or have experienced difficulties. This high number is  alarming due to the facts that adherence to medications is paramount in order to gain maximum treatment benefit, reduce resistance emergence and to save future treatment options.

Altered mental status includes anxiety depression, problems with concentration and memory, cognitive function all of which can have a negative effect on compliance to medication. Behavioral changes including altered sleep activity and eating habits could also effect compliance due to time restrictions and diet restrictions common to Anti - HIV  treatments. Insomnia was reported by many in the study which can compound symptoms of fatigue, create erratic sleeping patterns and has a relationship to depression and mania. 

The use of anti depressants and sleeping pills started or increased since therapy was 80% of people who responded, this high number needs further investigation as to why this number  does not correlate with other populations, The data analyzed was unable to discover what polypharmaceutical prescribing takes place. The high number of people starting Temazepam  needs questioning. Is there a relationship to insomnia and anxiety due to other medications, which have been documented?  It is well documented that the use of antidepressants is more effective if used in conjunction with psychotherapy or counseling yet 55% of respondents do not attend any form of psychological therapy.

Conclusion

This initial research shows that many patients perceive their mental health difficulties to be due to their anti-retroviral therapy, as a direct result of the pharmaceutical properties of the drugs. There is an obvious need for further research to be carried out in this area. It is clear that many patients make a clear link between the drugs and their mental health, yet many were not warned of such difficulties. Prescribers may argue that patients are given information included when picking up drugs yet much time and indeed special clinics and support is available to people relating to physical side effects such as lypodystrophy therefore, in the hope of better health care, there is a need to offer the same support to those experiencing psychological effects. Previous mental health history should be taken into account when prescribing drugs that can in some cases cause mental change. Better dialogue between prescribing doctors and psychiatric services should be encouraged and education on the possible side effects of the mentioned drugs, to psychologists,  psychiatrists and counselors involved in the care of the HIV positive patient.