Catherine Cochran, Guest Writer
There is a large body of literature highlighting the importance of trust in doctor-patient relationships. A number of scholars have noted the association between patient trust in doctors and good doctor-patient relationships.[i] These studies indicate that good communication leads to a higher quality of care, as patients are more likely to seek medical attention and follow doctor recommendations.[ii] This study suggests that patient trust in doctors and effective communication with doctors are indicators of whether or not a person received the vaccine for Human papillomavirus (HPV). In addition to shedding light on the reasons behind low rates of HPV vaccination in the United States, this study examines difficulties people face in making decisions embedded in the cultural context of stigmatized diseases and addresses how trust and relationships with doctors mediate decisions that people make about their health.
HPV AND VACCINATION
Despite the health benefits of vaccines, many people do not vaccinate themselves or their children. Research indicates that many people choose not to get immunized because of a widespread phobia of vaccines in the U.S. This includes a fear of negative side effects that some associate with vaccines, though the field of medicine has largely discredited these claims.[iii] What is surprising about vaccination in the United States is that it is often educated people with health insurance who choose to opt their children out of getting vaccines.[iv] This is atypical when looking at health care trends, as people of high socioeconomic status are unlikely to reject means of preventative care.[v]
One vaccine with particularly low rates of use in the U.S., even among educated people with health insurance, is the vaccine for HPV. HPV is the most common sexually transmitted infection (STI). The Centers for Disease Control and Prevention (CDC) estimate that over half of sexually active men and women get HPV at some point in their lives.[vi] HPV is the primary cause of cervical cancer, which is one of the most commonly diagnosed cancers in women globally.[vii] HPV can also cause genital warts in both men and women in addition to rare cancers of the vulva, vagina, penis, anus, and throat.[viii] Like other STIs, HPV is highly stigmatized, as many associate it with risky sexual behavior.[ix] This presents significant obstacles to vaccination against HPV because many parents believe giving the vaccine to a child is similar to giving him or her permission to have risky sex at a young age, though recent studies have concluded that HPV vaccination in young girls does not impact sexual behavior.[x]
The HPV vaccine, in combination with regular screening, makes cervical cancer a largely preventable disease in wealthy nations.[xi] It is recommended by the CDC for boys and girls ages 11 and 12, but can be given to women until 26 and men until 21, ideally before the person becomes sexually active.[xii] The HPV vaccine comes in a series of three shots over a period of six months, and prevents against the strains of HPV most likely to cause genital warts and cervical cancer.[xiii] Despite the CDC’s recommendation, the rate of HPV vaccination among U.S. women is low compared to most other vaccines, at 32% of 13 to 17 year olds receiving all three shots.[xiv]
HPV vaccination is a major public health issue particularly for the college-aged population in the U.S. This demographic is at high risk for contracting HPV, as they are more likely than other age groups to have a high number of sexual partners and engage in risky behavior in general.[xv] This study not only examines several reasons for why a widespread public health intervention has been only minimally successful, but also improves broader understanding of how young women relate to doctors, how relationships between doctors and patients may influence choices people make about health care, and how people make decisions when confronted with particularly contentious issues like getting the vaccine for a stigmatized disease.
Data for this study were collected through in-depth interviews with 20 female first-year undergraduate students at a large, private university in an urban setting in the U.S. All students interviewed were between the ages of 18 and 19. Therefore, they were 12 or 13 in 2006 when the vaccine came out. It is HPV vaccination at this young age that is often the most controversial. Men were not interviewed because the HPV vaccine was only approved for men in 2009, and men have not yet been targeted in direct-to-consumer advertisements for the HPV vaccine to the same extent to which girls and women have. The sample was collected through outreach to a diverse group of first year students via email, university-affiliated social networking groups, academic courses, and student leaders with first-year student networks. The racial diversity of the sample is comparable to that of the university from which the sample was selected, at 45% White, 25% Asian, 10% Hispanic, 5% Black, and 15% did not provide an answer. About 65% of the sample completed the series of three HPV shots. This is significantly higher than the rate of HPV nationally.[xvi] Due to the sampling structure and small sample size, this study cannot make generalizations about the student body or college students as a larger population.
Each interview lasted approximately 45 minutes and was divided into four sections. The first asked questions to gather background information on the subject, her family, and the role of religion in her life. The second asked about the subject’s relationships with doctors, comfort in discussing health issues, including sex, and feelings toward medicine in general. The third section focused on the subject’s knowledge of HPV and the HPV vaccine, as well as her attitude toward the vaccine, and questions about sexual education, and how she or her parents made the decision either to get the vaccine or not to get the vaccine for HPV. The fourth section focused on the subject’s views on vaccines in general, including experiences related to vaccines growing up, and if she regularly got vaccinated against influenza.
This study produced four main findings. First, the data indicate that patient trust in doctors is built through a culmination of positive experiences and an acknowledgement of the patient’s adulthood and ability to make decisions. Most of the women in my sample reported that they, and often their parents, trusted the judgment of their primary care doctors. For instance, one subject stated: “We trust my doctor, so if she thinks it’s necessary we kind of go with it. If she says it’s something you should be aware of we generally take her advice.” Students expressed that they liked and trusted doctors more when they treated them as knowledgeable adults, and not like children. Subjects also emphasized the importance of a doctor listening to and considering their concerns and opinions, and respecting their ability to make their own decisions. When these criteria were met, students were more likely to trust their doctors and follow their advice.
Second, the primary indicator of HPV vaccination in the sample was patient trust in doctors. A majority of students reported trust in their doctors, as well as effective communication. Therefore, when doctors recommended that they get the HPV vaccine, subjects and their parents most often chose to get it. Trusted doctors were even able to convince hesitant parents that HPV vaccination was the right decision. Many students also reported getting the vaccine shortly before college, anticipating their risk of getting HPV would increase. For example, one subject described her decision to get the vaccine in the following way:
I just thought it’s important especially before going to college. You don’t really know what you’re going to be doing, you know. You just want to protect yourself. I didn’t really do any research, but a lot of my friends had it. Our health teacher always talked about how it’s important and was pretty much like “without a doubt you should get that.” My doctor was pretty adamant about it and it was just that I trusted all those people and it seemed like the right thing to do.
A stated fear of cancer in the interview was also an indicator that the subject got the vaccine.
Third, students reporting distrust in doctors or medicine most often did not get the HPV vaccine, even when recommended by a doctor. Most students made this decision for a combination of reasons, but the most significant factor was always a distrust or dislike of doctors or medicine in general. Other factors that contributed to students’ decisions not to get the HPV vaccine included a fear of side effects some associate with the HPV vaccine, discomfort in talking to doctors about sex, low perceived risk of getting HPV, and the stigma attached to the HPV vaccine, particularly in religious communities. Most students also rationalized their decisions not to get the vaccine with reasons such as a fear of needles, pain, or inconvenience. For instance, a subject described her decision not to get the HPV vaccine in the following way:
[The doctor] asked if I wanted a vaccine because, you know, [in] college everyone sleeps around, and I was like “I don’t think I’m going to be doing that, so nope…” He said it really obnoxiously. It was the first time I had ever come there. He said: “Well obviously everyone’s going to go hooking up and just do stupid things.” And I’m like “well okay, some people will,” but anyway he was just really rude about it… I didn’t need it, I didn’t want it, and also I don’t think I would have been there because I was leaving that week [for college] and the three installments wouldn’t have worked anyway, so I couldn’t.
Fourth, students had high awareness of both HPV and the HPV vaccine, but limited knowledge of the specifics of either. Most subjects reported that they had heard of HPV and the vaccine and knew HPV is transmitted sexually. Yet, most did not know that HPV can cause genital warts, that men can get HPV, or that the vaccine only prevents against certain strains of HPV. There was also a great deal of confusion between HPV and HIV. This awareness of HPV, but lack of knowledge about what it is, how common it is, and what exactly the vaccine prevents against was clear in subject responses when they were asked to describe what they thought HPV was. One subject responded by saying: “I think now I might be confusing it with something else. I know they talked about it affecting women, but now I don’t really remember anything about it. I just remember talking about it existing.” This was fairly consistent whether or not the subject chose to get the HPV vaccine.
This study suggests that doctor-patient trust and communication greatly influence medical decision-making and have great potential to improve the use of preventative care, particularly for stigmatized diseases such as HPV. This study also indicates that there is a need for more effective sexual education, both in schools and from doctors, to increase knowledge of HPV. Looking forward, with the implementation of the Affordable Care Act, there will be an influx of people into a health care system already short on primary care doctors.[xvii] These doctors will have less time to spend with patients, which may make developing doctor-patient trust more difficult. As this study and others indicate, a lack of trusting doctor-patient relationships diminishes quality of care.[xviii] If we want to improve this, restrictions limiting the number of people who can become doctors must be loosened and more incentives for new doctors to pursue primary care must be created. Without these changes, establishing doctor-patient trust will be close to impossible and already difficult decisions that we must make about our health will be even more daunting.
[i] Mechanic, D. (1996). Changing medical organization and the erosion of trust. The Milbank Quarterly, 74(2), 171-189.; Mechanic, D., & McAlpine, D. D. (2010). Sociology of health care reform: Building on research and analysis to improve health care. Journal of Health and Social Behavior, 51(S), S147-S159.; Trachtenberg, F., Dugan, E., & Hall, M. A. (2005). How patients’ trust relates to their involvement in medical care. The Journal of Family Practice, 54(4), 344-352.
[ii] Mechanic, 1996; Mechanic & McAlpine, 2010; Trachtenberg, Dugan & Hall, 2005
[iii] Offit, P. A. (2011). Deadly choices: How the anti-vaccine movement threatens us all. New York: Basic Books.
[iv] Offit, 2011
[v] Link, B. G., & Phelan, J. C. (2006). Fundamental Sources of Health Inequalities. In Policy Challenges in Modern Health Care (71-82). Rutgers University Press.; Mechanic, D., & Tanner, J. (2007). Health Affairs. Health Affairs, 26(5), 1220-1230.
[vii] Dillard, J. P., Spear, M. E. (2011). Knowledge of Human papillomavirus and perceived barriers to vaccination in a sample of US female college students. Journal of American College Health, 59(3), 186-190.
[ix] Nack, A. (2008). Medical diagnosis and the reinforcement of deviant labels. In E. Rubington & M.S. Weinberg (Eds.), Deviance: The interactionist perspective (10th ed.) (pp. 226-237). Boston: Pearson Education, Inc.
[x] Bednarczyk, R. A., Davis, R., Ault, K., Orenstein, W., & Omer, S. B. (2012). Sexual activity-related outcomes after Human papillomavirus vaccination of 11- to 12-year-olds. Pediatrics. 130(5), 798-805.
[xiv] Centers for Disease Control and Prevention (2011b). National and state vaccination coverage among adolescents aged 13 through 17 years – United States, 2010. Morbidity and Mortality Weekly Report, 60(33), 1117-1123; American Journal of Nursing (n.a.). (2012). Girls with health insurance aren’t completing the three doses of the human papillomavirus (HPV) vaccine needed for full protection. American Journal of Nursing, 112(8), 17.
[xvi] Centers for Disease Control and Prevention (2011b). National and state vaccination coverage among adolescents aged 13 through 17 years – United States, 2010. Morbidity and Mortality Weekly Report, 60(33), 1117-1123
[xvii] Arvantes, J. (2013). Radical primary care changes are needed to meet coming demand for health care. Annals of Family Medicine, 11(2), 184-185.
[xviii] Mechanic, 1996; Mechanic & McAlpine, 2010; Trachtenberg, Dugan & Hall, 2005