Not What the Doctor Ordered: Challenges Individuals Face in Adhering to Medical Advice Treatment
Congressional Briefing
Executive Summary
On Friday, April 16, COSSA held its second congressional briefing of the year. The title of the briefing, which featured four social scientists, was "Not What the Doctor Ordered: Challenges Individuals Face in Adhering to Medical Advice/Treatment." The four presenters discussed various factors that lead to non-adherence and some of the social and political implications resulting from patients not adhering to medical advice. The briefing was moderated by Norman Anderson, Director of the National Institutes of Health's (NIH) Office of Behavioral and Social Science Research (OBSSR).
After a brief welcome by COSSA Associate Director for Government Affairs Angela Sharpe, Anderson noted the importance of the briefing's focus and said that "adherence is a problem that is of very high interest among all of the Institutes of NIH." The NIH, he said, realizes that the issue of adherence is not simply an issue of an individual's behavior, but a problem that is embedded in a very complicated psychosocial and cultural context. Thus, he said, that adherence involves not only patient behavior, but provider behavior, the medical system in which the provider operates, family factors, and psychosocial or cultural factors.
Bernice Pescosolido, Chancellors' Professor of Psychology at Indiana University, and Karen Luftey, one of Pescosolido's advanced doctoral students and a pre-doctoral fellow of NIH's National Institute of Mental Health (NIMH), were the briefings first presenters. The two gave a brief overview of the history of compliance and adherence research and provided several answers to the question: Why don't patients follow medical treatment recommendations?
The conclusions of a literature review conducted by Luftey showed that overall treatment adherence for all maladies is "relatively low." For diabetes patients in particular, said Luftey, an early study found that "only 7 percent of patients comply" with medical regimens. Compliance in cases of mental illness is closer to 10 percent on average, ranging to a maximum of about 30 percent, noted Luftey. In general, Luftey concluded that implicit in the literature is the notion that compliance is simply an issue of patient behavior. Additionally, the research has largely assumed that non-compliance is a problem associated with patients of lower socioeconomic status and minority groups. This, according to Pescosolido, however, is not the case. In fact, she noted that "almost everyone is non-compliant."
The two suggested, like OBSSR's Anderson, that compliance is an issue that is much more complicated. Pescosolido, therefore, suggested that we need to reconceptualize it. She said that we must consider the entire medical system, not simply the patient. According to the two, compliance is based on at least four different factors: 1) patients, 2) providers, 3) the context in which medical treatment is provided (private vs. public treatment and single provider vs. multiple provider), and 4) the patient's social network. The conclusions, said Luftey, were supported by a study she performed on patients in two different diabetes clinics. Information sharing between medical provider and patient, she concluded, is a key factor in compliance.
Pescosolido further noted that we must consider the medical system and whether the patient has a single provider or multiple providers, whether the providers share information with patients, and what type of medical treatment system the patient is enrolled. A study performed by a researcher in Puerto Rico, said Pescosolido, showed that patients have a much higher compliance rate (39.2 percent) if they have a single medical provider. In comparison, the same study showed that patients with multiple providers have a "very low" compliance rate (26.3 percent).
Pescosolido concluded the first presentation by offering a few policy recommendations. First, she declared that there should be increased funding for compliance research that extends beyond the patient and considers the entire medical system. Second, she stated that it is "important to take a second look at the aspirations and realities of managed care." Managed care's focus on lowering costs of medical care may in the "long-run increase non-compliance and result in poorer health" of patients. Finally, she stated that "we really need to think about how we can put together a team of individuals who can maintain a real trust and bond with the people they are caring for" to increase compliance and patients' health.
Social and Cultural Factors
Noel Chrisman, Professor of Community Health and Nursing at the University of Washington, was the third speaker. He echoed Pescosolido's and Luftey's premise that adherence is much more than an individual level concern. While he discussed three levels of compliance — individual level, health system level, and population/community level — he concentrated on the social and cultural factors that affect adherence. He drew specifically from some research he had conducted and some of his experiences working with and conducting research on the Yakima Native American Indian tribe reservation.
Chrisman identified several individual level factors that affect medical adherence. First, he said that patients often do not comply because the "treatment does not make sense," or the treatment is contrary to the person's belief system. For example, he noted that the Yakima Indian women would not undergo pap smears because they would lose "part of their bodies" and their ancestors would not accept an incomplete body. Second, people fail to comply because the treatment is "no longer needed," or the person feels better and therefore stops adhering to the medication or treatment. Third, a person often fails to comply with medical advice and treatment because "it could not be done." For example, the person did not have the proper insurance to cover treatment or medication.
At the health system level, Chrisman identified several barriers to patients' full adherence. One reason, he said, was time. He noted that medical professionals do not have the time to listen, to teach patients about their ailments, or to perform "culturally appropriate care." This, he said, is nowadays blamed on managed care, as noted by Luftey and Pescosolido. But, Chrisman said that he does not believe that managed care is to blame. Twenty-five years ago, when managed care was not around, doctors also complained that they did not have enough time to spend adequate amounts of time with patients, said Chrisman. Another barrier to adherence, said Chrisman, is language. "In spite of the fact the Civil Rights Act requires that we not discriminate against people on a large number of grounds, including language," he noted that most hospitals do not have interpreters. Clinicians, he said, are also not taught in medical school how to deal with interpreters.
He noted that the population/community level is extremely important to consider because in many instances the community is closely involved in an individual's decision-making process. Therefore, Chrisman said that clinicians must recognize how to work with members of the community and community assets (allopathic doctors and spiritual healers) to find an effective approach to ensure adherence. The community needs to become involved in the health seeking process, he said.
Chrisman offered several recommendations, including cultural training for clinicians. Additionally, he said that there needs to be "organizational cultural competence." Specifically, he noted that hospitals and hospital staff need to "understand how to provide for trained interpreters . . . along with a whole series of things."
Adherence and AIDS
Margaret Chesney, Professor at the University of California, San Francisco, spoke about adherence and HIV/AIDS, where the "challenge of adherence takes on critical dimensions. I mean critical." She said the challenge to make HIV/AIDS patients to adhere to their medical regimens is "greater than anything I've faced in all my adherence work."
She noted at the outset, that even adherence rates of 80 percent for individuals with HIV/AIDS will lead to a failure in the treatment regimen and the development of antibiotic resistant strains of HIV/AIDS. The HIV/AIDS virus, she said, waits for a crack in adherence. When this break occurs, the virus attacks and "creates a form of the virus that outsmarts the drug."
To make the point of the difficulty of complying with the drug regimen for HIV/AIDS, Chesney showed a picture of a patient's actual regimen. The daily regimen, according to the picture, included 11 drugs that needed to be taken at specific times throughout the day. She said, however, that taking the drugs was not the most difficult part of patients' adhering to the regimen, contrary to the opinion of medical professionals. She said that surveys of medical patients suggest that the biggest factor in non- adherence is meal instructions. Several of the HIV/AIDS medications, she said, must be taken in accordance with very specific meal instructions. Another factor which lowers the adherence rate is the stigma attached to HIV/AIDS. Persons living with HIV/AIDS may not properly adhere to their regimens since it would mean taking drugs in public settings. Privacy, she said, is therefore a big issue. She also noted that some people say they "just forget" to take their drugs.
The medical regimen must be tailored to a person's life to increase adherence; taking medications can be turned into a ritual, like turning your alarm off in the morning. She provided an example of a woman living with HIV who takes her medications based on her daughter's life. For instance, the women takes her first medication in the morning when she brushes her teeth. The woman takes her afternoon dosage when she picks her daughter up at school, and her evening dosage when she is making her daughter's lunch for the next school day.
Chesney concluded by noting that it is important for patients to establish a relationship with a counselor — preferably a social or behavioral scientist — who can help the person tailor a regimen. Also, the counselor can help the person address or overcome any cultural or social factors that may affect adherence. She said that adherence needs to be addressed through a team — a team, led by the patient — composed of many individuals, including social or behavioral scientists, pharmacists, the persons' social network, and a nutritionist.