ORIGINAL
PAPER
Lessons Learned From a Survey of the Diagnosis and Treatment Journeys of Postmenopausal Women With Hypertension Lynne Doner Lotenberg, MA;1 Lisa C. Clough, MS Ed, CHES;2 Thomas A. Mackey, PhD, RN, FNP-BC;3 Amy E. Rudolph, PhD;4 Rita Samuel, MD;4 JoAnne M. Foody, MD5 Hager Sharp, Washington, DC;1 WomenHeart: The National Coalition for Women with Heart Disease, Washington, DC;2 University of Texas School of Nursing at Houston, Houston, TX;3 Novartis Pharmaceuticals Corporation, East Hanover, NJ;4 and Brigham and Women’s Hospital, Boston, MA5
In this qualitative, experiential study, 300 members of the database of WomenHeart: The National Coalition for Women With Heart Disease completed an online survey about hypertension diagnosis and treatment, patient education, and perceptions of this and related conditions. Based on the findings from the survey, characteristics of the prototypical journey were identified. To the extent to which the surveyed WomenHeart members represent typical experiences, this survey provides insights into common hurdles women encounter in their journey throughout the hypertension diagnosis and treatment process. Results of this study
suggest the need for a patient-centric approach to hypertension management and to implement programs with the intention of comprehensively assessing and meeting individual needs. Further studies would be of value to expand on patients’ journeys in the management of hypertension and identify the types of products, services, and programming that most effectively support treatment adherence and achievement of optimal blood pressure control. J Clin Hypertens (Greenwich). 2013;15:532–541. ª2013 Wiley Periodicals, Inc.
While hypertension is more common in men than in premenopausal women,1,2 after the onset of menopause, hypertension rates become higher in women than in age-matched men. It is estimated that >40% of postmenopausal women in the United States will develop hypertension and >75% of women older than 70 years are hypertensive.2–4 The high prevalence of postmenopausal hypertension is concerning given the associated increased risk of adverse cardiovascular, cerebrovascular, and renal outcomes.5 According to the American Heart Association Heart Disease and Stroke Statistics—2013 Update, high blood pressure (BP) is associated with shorter overall life expectancy, shorter life expectancy free of cardiovascular disease, more years lived with cardiovascular disease, and increased risks of ischemic stroke and intracranial hemorrhage, compared with normal BP.6 Hypertension causes more than 61,000 deaths annually, including more than 34,000 women.6 For women, in particular, age-adjusted mortality rates associated with BP-related disease have increased in recent years.7,8 More than 1 of every 3 adult women in the United States currently has some form of cardiovascular disease and, since 1984, more women than men have died of cardiovascular disease.3 Data from National Health and Nutrition Examination Surveys (NHANES) indicate that although hyper-
tension awareness, treatment, and control rates have increased significantly for both men and women in recent years,9 control rates are lower in women than in men,10 with less than half of postmenopausal women having adequate BP control.2,11 These findings have been observed despite the fact that women are more likely than men to have their BP checked and adhere to their BP medications, which suggests that women may not be treated as aggressively for hypertension compared with their male counterparts and/or the mechanisms contributing to postmenopausal hypertension may differ from those in men and premenopausal women.1 For example, postmenopausal women are more likely than premenopausal women to have BP that does not decline by >10% during nighttime hours. This type of hypertension is associated with more targetorgan damage in women than in men.12 Physiologic factors that may play a role in the high prevalence of hypertension in postmenopausal women include changes in estrogen/androgen ratios, increased endothelin and oxidative stress, activation of the reninangiotensin-aldosterone system (RAAS) and sympathetic nervous system, and increased excretion of vasoconstrictor eicosanoids.13,14 Other factors associated with the increased prevalence of high BP in postmenopausal women include increased rates of obesity, diabetes, dyslipidemia, metabolic syndrome, anxiety, and depression; increased consumption of dietary sodium; more sedentary lifestyles; and suboptimal levels of health literacy.15–19 According to the Hypertension 2008 online survey conducted on behalf of the Preventive Cardiovascular Nurses Association, which surveyed 1548 hypertensive patients 44 years and older, age plays an important role in attitudes and behaviors regarding health care education,
Address for correspondence: JoAnne M. Foody, MD, Director, Cardiovascular Wellness Program, Brigham & Women’s Hospital, 75 Francis Street, PB-136, Boston, MA 02115 E-mail:
[email protected] Manuscript received: January 11, 2013; revised: March 20, 2013; accepted: March 20, 2013 DOI: 10.1111/jch.12114
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burden of illness, and treatment.18 When BP goals are not met, older people may be more likely to express apathy and discouragement and fail to adhere to treatment than those who are younger. This survey18 also found negative differences between educational strategies for older vs younger people, where better communication between health care providers and older patients may improve patient attitudes, knowledge, and adherence to lifestyle and pharmacologic treatment regimens. Based on the hypothesis that postmenopausal women may have unique aspects to their journey or barriers to care, the current study set out to map the journey taken by women going through the processes of obtaining a diagnosis of hypertension and managing high BP. By mapping this journey, it may be possible to better understand patient needs and identify areas where improvements in care can result in faster diagnosis or better disease management. Published studies mapping other medical journeys (eg, cancer, rheumatoid arthritis, and hearing loss) have provided valuable insight into patient perspectives and key areas for improving clinical management strategies.20–23 Data on such journeys through hypertension are limited24 and this is the first study to explore the processes of the US health care system, specifically examining the experience of highrisk postmenopausal women. Participants were members of the database of WomenHeart: The National Coalition for Women With Heart Disease, which is the only national organization supporting women living with or at risk for cardiovascular disease through advocacy, education, and patient support.
results were used to construct a prototypical average woman’s (“Jane’s”) journey based on the most common responses to the survey questions. This vignette does not present the case of a surveyed woman, but rather presents an amalgam of survey results to provide clinicians with examples of prototypical patient characteristics and experiences. To identify ways in which the journey differs for various women, results were evaluated for subgroups based on age (39–58 years, 59–65 years, and 66 years and older), risk (higher risk was defined as history of heart attack, stroke, congestive heart failure [CHF], or kidney disease; lower risk was defined as no history of these events), and time since diagnosis (within the past 5 years, 6–15 years ago, and 16 years ago). Reported subgroup differences were statistically significant (P30 years ago
52 48 3 5 14 26 17 14 10 10
a
Percentages may not total 100% as a result of rounding.
68 18 6 4 3 12 41 26 20 3 4 9 11 15 12 9 8 29 20 31 29 19 39 37 28 16 3 3 5 3 100 81 69 39 25 17 16 8 5
b
Respondents could select more than 1 response.
c
Defined as high blood pressure with myocardial infarction, conges-
tive heart failure, stroke, or kidney disease. d
Defined as high blood pressure without myocardial infarction,
congestive heart failure, stroke, or kidney disease; when level of risk was calculated using high blood pressure with only myocardial infarction, congestive heart failure, or stroke, 51% of women were at higher risk and 49% were at lower risk.
because of CHF, kidney disease, or a prior heart attack or stroke. Compared with the lower-risk group, higherrisk women were more likely to have diabetes and a longer history of hypertension. Diagnosis and Monitoring For most women, an initial diagnosis of hypertension was made by a health care provider at a checkup or sick visit. Only a small proportion (5%) of patients taking part in the survey were found to have hypertension using a home BP monitor, although this was more common among those diagnosed within the past 5 years than for those diagnosed 16 years ago. The diagnosing health care provider was most commonly in family/ general practice, followed by internal medicine, cardiology, obstetrics/gynecology, and other. About half of the women reported discussing exercise/physical activity, the causes of high BP, and reducing salt intake at the first visit with a health care provider. However, >1 in 10 women reported that they had never discussed exercise/physical activity, heart disease, or reducing salt intake, and >1 in 5 reported no discussion around dietary changes other than salt reduction, how often to check BP, consequences of high BP, causes of high BP, losing weight, or using a home BP monitor with their provider. Approximately half of the group had not discussed controlling blood sugar, the relationship between diabetes and high BP, or smoking cessation. In some instances, however, health care providers may not have felt the topics were relevant for all patients based on medical history. Respondents diagnosed with hypertension 16 years The Journal of Clinical Hypertension
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ago were less likely to have discussed heart disease, exercise/physical activity, weight loss measures, controlling blood sugar, using a BP monitor, or how frequently to check BP than women diagnosed more recently. Figure 2 summarizes responses regarding frequency of BP monitoring by health care providers and through self-monitoring. Most women (89%) reported having their BP checked by a health care provider at least once every 6 months, and 77% reported checking their own BP at least once every 2 to 3 months. When asked which locations in a typical community would be convenient and comfortable places to check BP, the most popular answer among the choices provided in the survey was the pharmacy (57%). Other common choices included grocery stores (28%), health clubs (27%), and, among the elderly (>65 years), senior/community centers (27%).
Treatment The majority of women (93%) reported taking medication to treat their hypertension. Most (55%) were taking 2 antihypertensive medications, while 38% reported taking a single medication (note: although the survey asked about number of medications, it is not known how women who take single-pill combination medications counted them). Women diagnosed within the past 5 years were more likely to take no medication compared with the group who had hypertension for 16 years (15% vs 4%). Treatment adherence was suboptimal, with 24% of women reporting that they do not continuously take their BP medication. Reasons for nonadherence included forgetfulness (27%), medication expense (10%), actual adverse effects (7%), and concerns about side effects (7%). As shown in Figure 3, the most common answers women gave when asked to identify
FIGURE 2. Frequency of blood pressure (BP) monitoring by (A) health care providers (HCPs) and (B) through self-monitoring; all respondents (N=300). 536
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FIGURE 3. The one aspect of current high blood pressure (BP) medication women would most like to improve (n=278).
FIGURE 4. Resources or services identified by women as possibly helping to better control blood pressure (BP) (N=300).
one aspect of BP medication deserving of improvement were “nothing; everything is fine,” “take fewer medications,” “reduce cost,” and “eliminate side effects.” Long-Term Disease Management From the survey, several obstacles were identified as affecting the ability to make the lifestyle changes necessary to reduce hypertension. The most common factors cited were events in life, family/work commitments, amount of available time, and money. Women in the youngest age group (39–58 years) were more likely to identify these 4 factors compared with older women. When presented with a list of possible resources or services available to help achieve better BP control, items of particular interest included dietary planning Official Journal of the American Society of Hypertension, Inc.
and physical activity ideas (Figure 4). More than one third of respondents expressed interest in receiving a list of useful Web sites, information about local health and wellness programs, or tracking sheets or online resources to record BP readings and monitor progress in achieving goals. However, these results should be interpreted within the context that responders to an email survey may be more interested in online resources than survey nonresponders and the general population of postmenopausal women with hypertension. The women responding to this survey reported that they most often learned about high BP and other health topics from health care providers (82%), the internet (70%), and magazines, newspapers, or newsletters (61%). Women were unlikely to use newer technologies The Journal of Clinical Hypertension
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as sources of information on high BP; only 7% of respondents reported using social media (eg, Facebook), and 0% reported using smartphone applications or text messaging. When asked about the perceived threat to health associated with different medical conditions, the majority of women reported high BP to be of greater concern than any other condition (Figure 5). However, a substantial proportion of the women surveyed viewed the following commonly comorbid diseases as little or no threat to health: stroke, CHF, diabetes, and kidney disease (Figure 5). Subgroup analyses found older women (66 years and older) perceived CHF, diabetes, osteoporosis, kidney disease, and the need to lose weight to be less of an issue compared with younger groups. In the overall survey population, some of the reasons given for high levels of concern about high BP included learning more about the consequences of the disease, finding it harder to lower BP than expected, and experiencing a health consequence associated with high BP (eg, heart attack, transient ischemic attack, stroke, or kidney problems). When asked for their opinions about the relationship between BP control and other diseases, almost all participants agreed that there was a link between high BP and heart disease and that it was important to keep BP values as close to goal as possible. However, many women did not know what these goals were. When asked to cite the values during the survey, only about 60% of respondents gave a feasible number for systolic or diastolic BP. About 1 in 10 respondents did not know their systolic or diastolic goals, and the remainder gave unlikely responses. There was a high level of agreement on questioning as to whether there is a relationship between high BP and diabetes, and 67% of women were aware of their blood sugar goals. However, 53% of respondents had either a
neutral opinion or were not interested in learning more about diabetes and how to control this disease. Vignette of a Prototypical Journey Consider Jane, a prototypical postmenopausal woman with hypertension. Jane is 62 years old, white, married, and has an annual household income between $50,000 and $75,000. Jane attended college but did not earn a 4year degree. Jane has health insurance through her employer. She is a nonsmoker and exercises (at least takes a walk) on 4 days a week. In addition to high BP, Jane has high cholesterol and needs to lose weight. She had a heart attack 2 years ago. Jane first learned she had high BP about 10 years ago when she saw her primary care doctor for a checkup. At her initial visit, Jane and her provider discussed medication, exercise, and reducing salt consumption. Jane doesn’t recall for certain, but they may have discussed losing weight and the risks or causes of high BP. Jane left her provider’s office with a prescription and returned for a follow-up visit within 3 months. Jane prefers to get her BP checked by her provider, usually every 2 to 3 months but sometimes every 4 to 6 months. However, occasionally Jane finds it easy and comfortable to have her BP checked at the local pharmacy. When Jane explored with her healthcare provider the possibility of home BP monitoring, she decided the above options were sufficient to meet her needs. Jane takes 1 or 2 prescription BP medications; she does not know whether she takes a combination medication. She usually takes her medication as directed but sometimes forgets. Jane is fairly satisfied with her medications, although there are times when she wishes she could take fewer medications and experience fewer side effects. Jane considers high BP to be a notable threat to her health and is concerned about heart attacks, high
FIGURE 5. Perceived threats of different medical conditions to overall health (N=300).a 538
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cholesterol, stroke, and CHF. She is less concerned about losing weight, diabetes, or kidney disease, and considers osteoporosis to be only a small threat. In an attempt to control her high BP, Jane has tried to change eating and exercise habits as well as reduce stress in her life. Regardless of her intent, life sometimes makes these changes difficult, as do family and work commitments; however, Jane noted that these barriers have lessened as she has aged. Over time, Jane has become more concerned about high BP because she has learned more about its health consequences from her health care provider and from magazines and the internet. She also acknowledges that it was harder to bring down her BP than she thought it would be. Because she is a member of WomenHeart, she knows that there is a relationship between high BP and heart disease. She is less familiar with diabetes and is uncertain whether there is a relationship between diabetes and high BP. Jane is somewhat interested in learning more about high BP and how to control it. Topics of interest to Jane include information on good food choices and the benefits of exercise. Jane prefers to receive health information from her health care provider, the internet, magazines, newspapers, or newsletters. However, Jane is unlikely to benefit from educational materials available through social media or smartphone applications.
DISCUSSION This survey of 300 postmenopausal women with hypertension provides unique insight into the journeys women take on the path through diagnosis, treatment, and longterm disease management. Examination of these journeys revealed several important findings including the fact that most women were diagnosed with hypertension during a routine checkup or sick visit, and that many were at high risk and on multiple medications. Despite this, treatment adherence was suboptimal with approximately 1 of 4 women reporting poor adherence. Further, few women had discussed dietary interventions, management strategies, or the relevance of high BP to health with their health care provider. Important differences were identified in the journeys of women who were older and who had been recently diagnosed. For example, this survey identified educational gaps in conveying the importance of weight loss and the consequences of high BP to older women (66 years and older) and those diagnosed more than 15 years ago. In the current study, more than half of women (57%) indicated that local pharmacies would be convenient and comfortable places to check BP, and more than 1 in 4 women indicated that grocery stores, health clubs, or senior/community centers would be convenient places. These results imply that opportunities may exist to establish regular BP monitoring at accessible community locations outside of the health care provider’s office. This point is supported by a cross-sectional mail survey of 530 hypertensive patients in North Carolina, where 63% reported checking BP at locations other than a doctor’s office or at home.25 Most of these respondents Official Journal of the American Society of Hypertension, Inc.
(66%) reported using a BP monitor stationed in a standalone pharmacy or one located within a larger retail store. This study also found that patients with comorbidities such as diabetes, heart disease, or stroke were not more likely to monitor BP at community locations than patients without such comorbidities. Further, older people (older than 65 years) were significantly less likely to use BP monitors than those between the ages of 45 and 65.25 Identifying gaps such as these are important because pharmacy and other community-based programs can have a positive impact on the early detection of hypertension and can also monitor other easily measured cardiovascular risk factors (eg, body mass index and waist circumference).26,27 Changes in the early detection of hypertension could significantly improve outcomes for postmenopausal women because an estimated 39% of this population will have had prehypertension (ie, systolic/diastolic BP of 120–139/ 80–89 mm Hg),16,28 and these early stages are independently associated with increased risks for myocardial infarction, stroke, hospitalization for heart failure, and cardiovascular death.16 Early detection can also be improved by encouraging women to have regular physical examinations. In the current survey, 40% of hypertension diagnoses occurred during a routine physical examination. Despite the fact that national and international guidelines recommend the use of home BP monitoring for the diagnosis and management of hypertension,28–32 results of the current survey found that only 21% of patients received a monitor or information on how to obtain one and 28% never discussed this option with a health care provider. Thus, increased emphasis on discussions of the benefits of home BP monitoring between patients and health care providers could positively impact the hypertension journey. Regular home BP monitoring is a practical, readily available, cost-effective method that is increasingly used for diagnosing uncontrolled hypertension.28–30 This approach is a better predictor of cardiovascular mortality and target-organ damage compared with measurement in an office because it eliminates the white-coat hypertension effect and allows patients to regularly assess the ongoing efficacy of antihypertensive medications. These features can improve both treatment adherence/persistence and overall BP control.33 Home monitoring is also of benefit because readings can be tracked over time and sent directly to health care providers via telephone or wireless services.33 These options may be particularly beneficial for the elderly, who are more likely to have challenges getting to a doctor’s office and are more prone to white-coat hypertension.31 Home BP monitoring has also been shown to significantly predict cardiovascular events, all-cause mortality, progression of chronic kidney disease, and functional decline in elderly patients.34 Results of the current survey found that treatment strategies in hypertension often may not be aggressive enough and the seriousness of the consequences of uncontrolled high BP may be underestimated. Many The Journal of Clinical Hypertension
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women (45%) reported not receiving any treatment or only a single prescription for antihypertensive medication (despite the well-established finding that monotherapy does not effectively control BP in the majority [>70%] of patients with hypertension, particularly when this condition exists with comorbidities35). In addition, many people have adherence challenges driven, in part, by preferences for fewer medications, reduced side effects, and lower costs. It is important for all patients with hypertension to implement lifestyle changes, even if medication is not required. Guidelines recommend increasing physical activity and making dietary changes (eg, reduced intake of salt, saturated fat, and total fat; and increased intake of fruits and vegetables) to lower BP and reduce cardiovascular risk.28,35 However, many factors make it difficult to make lifestyle changes, and there is room for improvement in the discussions taking place throughout the patient journey. Approximately one quarter of women recalled no mention of important lifestyle changes or the causes and consequences of high BP from a health care provider, and only 28% reported receiving reading material on the effects of hypertension. Most of the individuals surveyed expressed interest in information on meal planning/recipes and exercise ideas. Discussions of these topics are examples of opportunities for health care providers to engage both patients and caregivers in conversations about healthy household cooking and physical fitness and the benefits of these approaches for the whole family. Comorbidities are very common in postmenopausal women with hypertension: data from the Women’s Health Initiative indicate that >60% of this demographic also have diabetes, history of myocardial infarction, heart failure, and/or history of stroke.15 Consistent with these findings, >80% of the respondents in the current study had at least one comorbidity. Issues such as cardiovascular disease, kidney disease, and diabetes present significant treatment challenges because patients with these conditions frequently experience increased resistance to antihypertensive therapy due to several physiological factors, including increased sodium retention and RAAS activation. Because individuals with comorbidities are at higher risk for cardiovascular complications, more aggressive BP goals are recommended (130–135/80 mm Hg) than for the general population (
