Are People Getting the Help They Need for Side Effects?

Summer 2005

This article is part of The Body PRO's archive. Because it contains information that may no longer be accurate, this article should only be considered a historical document.

Over the past nine years, many people living with HIV and AIDS have been treated with highly active antiretroviral therapy (HAART) -- three or four drug combinations. Just as the effectiveness of HAART varies from person to person, so too does the profile of side effects and problems related to the medications. In this article, I will focus on the experiences reported by over 300 individuals currently receiving HAART. We interviewed these people for the "Choices in Care Study," a project that we are conducting with the New York State Department of Health AIDS Institute to look at patients' perceptions of care in the Medicaid program, including both those in Special Needs Plans (SNPs) and fee-for-service clients. SNPs are Medicaid health plans for people with HIV/AIDS in New York. They offer primary care by providers who are HIV specialists, case management, and other supportive services.

As part of this study, we asked people about the medications they are taking, their pattern of adherence over the past weeks and months, and their reasons for missing medications, including side effects. We also included questions to look at the impact of medication problems on individuals' emotional well-being, level of activity, and overall health. In a follow-up interview, we also asked a subset of people who mentioned difficulties with their medications whether or not they have sought assistance from their providers and, if so, whether this assistance has helped to resolve their problems. It will be useful to consider some of our main findings to get a sense of the problems people on HAART encounter and how they have tried to get help.


Overview of Sample

We conducted the interviews discussed here between April 2003 and December 2004, including 289 Medicaid fee-for-service clients and 92 Special Needs Plan clients. This sample was quite diverse, including 48% women, 59% African American, and 36% Latino. The average age of the participants was 46 years, with about 25% age 40 or younger and 25% age 51 or older. In terms of education, 35% of the sample had less than a high school education, 40% had a high school diploma or the equivalent, and 25% had at least some college. About 94% reported monthly incomes of $1000 or less, with about 13% of participants working for pay. Just over 10% of the sample was unstably housed. At this stage in our study, we can use our data to examine trends in the sample as a whole. As our sample grows over the next few years, we will be able to examine choices in care related to gender, ethnicity, age and other important characteristics.

On average, people received their HIV diagnosis 9.7 years ago, with 21% of the participants diagnosed in the past five years and 14% diagnosed more than fifteen years ago. Many study participants reported a history of multiple risk factors for HIV exposure, including 31% injection drug users, 19% men who had unprotected sex with other men, and 80% unprotected heterosexual sex. In terms of health status, 75% of participants reported knowing their current HIV viral load, and of these, 46% said that it was undetectable. Among 78% who were able to answer, 16% stated that their CD4 count was under 200. People in our sample started receiving treatment for HIV an average of 7.3 years ago. In terms of current medications, 41% said that they started their present regimen within the past year, while 25% said that they have had the same prescriptions for three or more years.

Who Is Taking Antiretrovirals?

The majority of study respondents (299 out of 381, or 78%) reported that they were currently taking antiretroviral treatment. The remaining participants stated that they had never taken antiretroviral medications (9%), were not currently taking medications (8%), or were on a prescribed (3%) or self-initiated (2%) drug holiday. Patients not receiving medication for any reason were more likely to have used crack cocaine or heroin in the past three months or to be unstably housed. Of those participants currently prescribed antiretroviral medications, the number of all types of pills (antiretrovirals, other prescription, and non-prescription) taken each day varied, with 36% taking 5 to 9 pills, 31% taking 10 to 14 pills, and 24% taking 15 or more pills per day. Most participants (66%) took pills twice per day, although 10% had to take pills four or more times per day.

Medication Adherence

Table 1

Reasons for Missing Medications

Reported by 299 Respondents (out of 381)
Currently Prescribed Antiretroviral Therapy
Simply forgot32%
Fell asleep/slept through dose time24%
Didn't feel like taking pills19%
Felt sick or ill19%
Wanted to avoid side effects18%
Felt depressed/overwhelmed17%
Felt like drug was toxic/harmful14%
Taking pills doesn't fit in my daily schedule13%
Did not want others to notice me taking
Too hard to take so many pills according
to a schedule
Ran out of pills11%
Felt good11%
I knew what was best for me9%
Was drunk or high6%
Didn't fit with meals/didn't have water6%
Didn't understand regimen3%
Note: Items reworded slightly for clarity
In terms of medication adherence, one out of five participants said that they had missed at least one dose in the past three days. In all, 40% of the sample reported missing medications in the past four weeks, while 15% said that they had not missed a dose in the past one to three months, and 14% stated that they had not missed a dose in over four months. Table 1 shows the reasons participants reported for missing doses. Side effects were cited by 18%, and concerns about medication toxicity were cited by 14% of this sub-sample. The most common reasons cited were forgetting (32%) and sleeping through doses (24%). However, if we consider only those patients who had missed doses in the past week, 39% cited side effects or toxicity concerns.

Symptoms Associated With Medications

We did not ask people directly whether or not they attributed different symptoms they were experiencing to their medications. However, we were able to look at differences in the symptoms cited by people who mentioned medication side effects and concerns about toxicities, compared with people who were not experiencing those problems. We found that people experiencing side effects were 50% more likely to mention numbness or tingling sensations in their limbs, 65% more likely to report nausea, 79% more likely to report fatigue and weakness, and 110% more likely to report fever or chills. Side effects and toxicity concerns were also associated with self-reported problems with memory or concentration (67% more likely) and depressed mood (83% more likely). These differences are still present even when we take into account CD4 count, viral load, overall number of lifetime AIDS-related diagnoses and comorbidities, and current opportunistic infections. Side effects also diminished quality of life in many areas, including significant problems in maintaining social relationships and in carrying out desired activities and roles. For example, 33% of people reporting side effects felt that their health interfered with activities like visiting friends or relatives all or most of the time, compared to 13% of those who did not mention medication-related concerns.

Seeking Help For Side Effects

Given these far-reaching consequences, we decided to examine what people were doing to address side effects and concerns about treatment toxicity. As part of our regular follow-up interview, we discussed help-seeking decisions and experiences with 61 individuals who mentioned that side effects from medications had interfered with their activities or made them feel worse during the past three months. For comparison purposes, we also talked about experiences in care with 41 individuals who did not report any side effects but had one or more other difficulties related to medications, including having a hard time adhering (37%), unanswered questions about medications or lab results (37%), forgetfulness (24%), and difficulty following through on medical advice (17%).

Table 2

Factors Influencing Help-Seeking
Among People Experiencing Side Effects or
Other Difficulties with Antiretroviral Treatment

Difficulty with medication due to:Side EffectsOther Reasons
Wanting to get things back on track
on my own
Need information44%39%
Should just learn to live with it36%37%
Unwanted changes in care33%27%
Was afraid nothing would help20%22%
Worried that getting help would make
things worse
Feeling judged -- stigma15%22%
Felt that the problem was not important
Note: Items reworded slightly for clarity

We first asked people whether or not they were seeking help for their concerns. We found that about half of the people in both groups were already receiving professional help. Although the numbers were small, people in the side effect group were twice as likely to be looking for professional help (15% versus 7%) or to be considering help in the future (23% versus 12%). In contrast, only 13% of people experiencing side effects said that they would not consider professional assistance, compared with 29% of people with other medication issues.

When we asked people about factors that they considered in deciding whether to seek help, we found similar concerns in the two groups (see Table 2). Although they expressed similar considerations, these factors seemed to carry different weight for people in the two groups. For people affected by side effects, the strongest factor influencing whether they had not or would not look for professional assistance was the fear that nothing would help. Alternatively, people with other treatment issues were mainly deterred by a lack of information.

Experiences In Care

We next considered factors that might have kept those people who were interested in getting help from actually seeking it (39 with side effects and 24 with other treatment issues). For this analysis, we included only those people who had actually started care or who were currently looking, to focus on what interfered with care. Barriers were encountered by relatively few people in both groups, but included difficulty getting appointments, transportation, accessibility, and hours. Significantly, no one reported any difficulties associated with costs of care (as would be expected in this Medicaid population), and no one was refused assistance by a provider.

We next turned our attention to those people who were receiving assistance for their medication-related concerns (30 with side effects and 21 with other treatment issues), to examine their experiences in care. Satisfaction with assistance for the specific problem at hand was quite high among both groups, with 83% of those experiencing side effects and 81% of those with other treatment issues indicating that they were "very satisfied," the highest rating on a four-point scale. In fact, no one in either group indicated that they were "very dissatisfied," the lowest rating on our four-point scale.

Despite these overall high satisfaction ratings, 33% of people with side effects and 19% of those with other treatment issues did experience one or more problems in getting their need addressed (see Table 3). Compared to the other group, people with side effects were particularly concerned about the lack of time to discuss problems. Although these concerns were relatively infrequent, when they arose they did impact satisfaction. On average, people seeking help for side effects expressed concerns about their care twice as often as people who sought help for other reasons.

Table 3

Concerns That Arose in Getting Help With
Antiretroviral Treatment from Providers

Difficulty with medication due to:Side EffectsOther Reasons
Taking care of this problem interfered
with my other responsibilities
I disagreed with what the provider
told me to do
Family or significant others disagreed
with the provider
There was not enough time to discuss
the problem fully
The provider did not understand my
The provider did not really get to the
real problem
The provider expected me to do too
much on my own
My problem was not taken seriously10%5%
Instructions were unclear or hard to
I did not have confidence in the care
I received
I had questions that were not answered3%0%
The help offered was not practical3%5%
I felt like I was being judged or blamed3%0%
I experienced disrespect or
Average Number of Concerns:1.23.57
Note: Items reworded slightly for clarity

Unresolved Problems With Medications

Overall, people experiencing side effects tended to have more difficulty resolving these problems than people who mentioned other treatment issues. Problems were fully or mostly resolved for 28% of people experiencing side effects, compared to 49% of people with other treatment issues. Resolution of problems concerning side effects were most related to help-seeking and to having necessary information. When we asked people what they did to address problems they encountered in care, several expressed a tenor of frustration:

  • It's always about taking the pills.
  • I feel I had to fight for what I wanted.
  • Never a clear plan -- a feeling of uncertainty.

A number of people felt that they had to go it alone:

  • I feel rushed. My provider does not take this problem seriously.
  • I'm doing nothing ... dealing with the situation.

Some people were trying to cope with medication problems independently:

  • I have spaced out medication so my body is not overwhelmed all at once by medication.
  • I try to remind myself to take meds.

Others were able to pursue help from their primary care providers (PCPs):

  • They reduced my dosage of medications and they are running more tests.
  • PCP has helped establish a method/routine to help me get back on track with my meds.
  • PCP has been advising me and suggested I go into recovery.
  • I've been given medications to help with back problems.

Still others sought help from outside sources:

  • I've talked to my gynecologist about it.
  • Talked to my significant other.
  • I've talked to the social worker about it.
  • I'm going to wait and see if the drug study at [local hospital] will help me, otherwise I will make a decision to get off meds.

Hoops, Hurdles and Help-Seeking

Our results suggest that many people taking antiretroviral therapy are still having difficulty with adherence. Those experiencing the greatest problems following their regimens are most likely to report side effects related to the medications. Reports of side effects were associated with higher levels of many different symptoms. It was clear that patients seeking help for side effects were interested in professional assistance. About fifty percent of patients were already receiving help. Of those not yet receiving help, over 70% were seeking or considering professional assistance. Most people were highly satisfied with the care that they were receiving. However, that did not mean that everything was settled. About 72% of people that we interviewed in depth about side effect problems said that their medication-related difficulties were not fully resolved. Many people delayed looking for assistance, in part because they handle things on their own and in part due to the fear that nothing would help. Over one third of patients felt at some point that they just had to learn to live with their side effects.

One surprising finding that helps to illuminate this point involves lipodystrophy. We expected to hear more about this concern when we asked about medication side effects. In fact it was rarely mentioned. When we dug a bit deeper into our data set, we found that about 8% of our full sample did mention concerns related to deposition of body fat in response to later interview questions about wellness and prevention. People specifically mentioned the desire to lose weight, control diabetes, or improve diet and exercise. We checked to see whether these weight-related concerns were more common among people who also experienced medication side effects. Instead, we found that only 2% of people with side effects also of the people who mentioned other medication problems and 10% of the remaining sample with no medication concerns. In other words, people seemed to focus on weight loss when they were otherwise feeling better. They did not equate weight loss with getting help with a medication problem. Alternatively, weight-related concerns seemed to be less important to people coping with discomfort, fatigue, and other side effects. This finding was specific to weight loss and did not hold true for other preventive health behaviors, like smoking cessation or cancer screening.

When people in our sample of Medicaid clients did seek help for side effects, they encountered few barriers to getting care. However, about one third of patients reported some concern that arose involving the care they were receiving, including advice that interfered with other roles, disagreements about care, providers' lack of time to address problems, and their problems not being taken seriously.

Taken together, study findings point to a need for further education of both consumers and providers. Many side effects do not show up on a lab test. The only way to detect them is from a patient's self report. It seems that some providers need to take time to draw out these concerns and pay more attention to the serious effect that they can have on a patient's well-being. Perhaps more important, consumers must feel comfortable in expressing their concerns. It is indeed troubling to hear some patients saying that they just need to learn to live with side effects or symptoms before they seek help. Other patients were focused on coping with current symptoms at the expense of more comprehensive assistance. For some respondents, seeking help for side effects raised the specter of unwanted treatment changes: patients felt that they had to tough out their discomforts in order to stick with a medication that was working. The only remedy for these concerns is open and informed problem solving, with patients and providers working at mutually acceptable strategies to promote longevity and maximize quality of life.

Bruce D. Rapkin, Ph.D. directs the Community Research and Health Disparities Program at Memorial Sloan-Kettering Cancer Center in New York City. His work focuses on developing and strengthening community-clinical research partnerships to promote access to care and quality of life for diverse populations.

[The information presented in this article was collected as part of an evaluation of patient choices and outcomes supported by the New York State Department of Health AIDS Institute.]

This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.


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