In the early days of the AIDS epidemic, doctors focused on making sense of patients’ lab test results along with signs and symptoms so that they could prevent and treat the inevitable life-threatening complications that were the hallmark of AIDS.
The availability of highly active antiretroviral therapy (HAART) in 1996 transformed AIDS from an eventual death sentence into a chronic health condition that can be controlled by taking medicines every day. HAART’s power is so profound that researchers expect that HIV-positive people who start treatment today will likely have near-normal life spans, particularly in high-income countries with their social-welfare systems.
Now, as we enter the fourth decade of the AIDS pandemic, most doctor-patient visits still revolve around laboratory testing and signs and symptoms. However, in high-income countries most visits deal with the intersection of one or more of the following themes:
- long-term complications of HIV infection, many of which may be related to ongoing inflammation
- aging-related issues
- co-infections and co-existing complications
- the physical, biological and psychological burden of having a chronic health condition
- medication-related side effects
The value of symptoms
Symptoms are critical when it comes to understanding how a person experiences illness. Symptoms, particularly if they are bothersome, can affect patients’ adherence to treatment, may impair health-related quality of life and could be a signal of drug toxicity or some other problem.
Given that patients will be on anti-HIV therapy for many years, close attention to their symptoms is an essential part of monitoring for possible drug side effects. If symptoms become bothersome, it is possible that some patients may become frustrated and less adherent as they seek relief.
Researchers across Canada conducted a study called the Behaviour and Attitudes study, or Beahiv. The main purpose of Beahiv was to compare agreement between patients and their doctors about the presence or absence of symptoms as reported by patients to their doctors at their most recent clinic visit. The survey was administered by the Ipos-Reid survey company and used a previously validated data-collection form.
The survey was done with each patient and his/her physician after a visit to one of 17 survey sites across Canada.
Patients were asked about 22 common symptoms that they might have had in the past month. They were also asked to rank the severity of symptoms. Doctors were asked about any symptoms their patients reported and to also rank the severity of symptoms.
About the doctors
The study team recruited 42 doctors—23 infectious disease specialists, 17 family physicians and two from other specialties.
On average, doctors had about 15 years of experience treating HIV-positive people and most had practices with more than 100 HIV-positive patients.
About the patients
The average profile of the 1,000 patients who participated in Beahiv was as follows:
- 12% females, 88% males
- age – 46 years
- CD4+ count – 504 cells
- 85% of patients were taking HAART
- 69% of patients had a viral load less than 50 copies/ml
- about 60% of people were taking HAART for more than five years
- 51% of people were taking their current regimen for at least three years
The ethno-racial composition of most participants was as follows:
- White – 73%
- Black – 8%
- Aboriginal – 7%
- Asian – 5%
- Hispanic – 4%
The birthplace of participants was as follows:
- North America – 78%
- Europe – 5%
- Africa – 5%
- Asia – 4%
- Caribbean – 4%
- Latin America – 4%
- Patients reported between 30% and 76% of the individual symptoms that they were asked about.
- Between 8% and 35% of patients disclosed that their symptoms were bothersome.
- Doctors recognized bothersome symptoms in 0.2% to 11% of cases.
The greatest discordance, or disagreement, between doctors’ and patients’ reporting of symptoms was in the following areas: memory, sexual problems, intestinal bloating, pain or gas.
The area of least discordance between doctors and patients concerned gynecologic problems.
Why the differences?
Beahiv’s findings are robust because there were more than 1,000 doctor-patient pairs. Unfortunately, the study team did not explore potential factors that could account for the differences in reporting patient symptoms.
The results of Beahiv and similar studies underscore an important issue for doctors and their patients:
- Enhanced communication between doctors and patients is needed.
A recent American report on doctor-patient communication reached similar conclusions to Beahiv, suggesting that issues with doctor-patient communication transcend national boundaries. The American researchers involved in that study suggest that a standardized questionnaire or tool that doctors can use when interviewing patients about symptoms might help. Results from a pilot study in that country suggest that doctors became “very aware” of patient symptoms when the tool was used.
In the future
Beahiv may pave the way for further research to investigate communication between doctors and HIV-positive patients. In the long-term, such research could lead to improved care for patients and better utilization of and reduced costs to the health care system. Also, because understanding patients’ symptoms is a critical part of care, the Beahiv study may point the way for similar research to understand doctor-patient communication in other health conditions, including cancer, cardiovascular disease, diabetes, liver complications and osteoporosis.
—Sean R. Hosein
- Rachlis A, Gill J, Harris M, et al. Behaviour and attitudes in HIV (Beahiv): a national survey study to examine the level of agreement between physicians and patients in symptom reporting. In: Program and abstracts of the 19th Annual Canadian Conference on HIV/AIDS Research, 13-16 May 2010, Saskatoon, Saskatchewan, Canada. Abstract Oo86.
- Edelman EJ, Gordon K, Justice AC. Patient and provider-reported symptoms in the post-cART era. AIDS and Behavior. 2010; in press.