Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group

Abstract

Patient‐ and stakeholder‐oriented research is vital to improving the relevance of research. The authors aimed to identify the 10 most important research priorities of patients, caregivers, and healthcare providers (family physicians, nurses, nurse practitioners, pharmacists, and dietitians) for hypertension management. Using the James Lind Alliance approach, a national web‐based survey asked patients, caregivers, and care providers to submit their unanswered questions on hypertension management. Questions already answered from randomized controlled trial evidence were removed. A priority setting process of patient, caregiver, and healthcare providers then ranked the final top 10 research priorities in an in‐person meeting. There were 386 respondents who submitted 598 questions after exclusions. Of the respondents, 78% were patients or caregivers, 29% lived in rural areas, 78% were aged 50 to 80 years, and 75% were women. The 598 questions were distilled to 42 unique questions and from this list, the top 10 research questions prioritized included determining the combinations of healthy lifestyle modifications to reduce the need for antihypertensive medications, stress management interventions, evaluating treatment strategies based on out‐of‐office blood pressure compared with conventional (office) blood pressure, education tools and technologies to improve patient motivation and health behavior change, management strategies for ethnic groups, evaluating natural and alternative treatments, and the optimal role of different healthcare providers and caregivers in supporting patients with hypertension. These priorities can be used to guide clinicians, researchers, and funding bodies on areas that are a high priority for hypertension management research for patients, caregivers, and healthcare providers. This also highlights priority areas for improved knowledge translation and delivering patient‐centered care.

1. INTRODUCTION

Research in hypertension management during the past 4 decades has made tremendous strides in identifying therapeutic options to substantially reduce the risk of future hypertension‐related complications. Despite these, blood pressure (BP) remains poorly controlled in 35% to 50% of patients with hypertension.1 Historically, the scientific community and pharmaceutical industry have led research priorities and knowledge translation efforts in hypertension. Integrating patients as co‐builders in the development of research priorities may offer a new strategy to increase the direct relevance and applicability of research to ultimately close gaps in hypertension management.

Systematic reviews demonstrate that patient involvement in research improves the relevance of study results to patients and enhances recruitment and retention in clinical studies.2, 3 Incorporating patient and care provider perspectives can also identify areas of uncertainty not previously recognized by researchers.4, 5 Moreover, this process can identify high‐priority areas for knowledge translation and delivery of patient‐centered care.

Hypertension is a chronic condition that usually requires lifelong use of multiple antihypertensive medications, changes to dietary and physical activity patterns, diagnostic testing, frequent contact with a healthcare team, and for some, regular home BP monitoring. As such, patients, their caregivers, and the healthcare providers who provide day‐to‐day care for these patients have an in‐depth experience with hypertension and are ideal candidates for identifying gaps in hypertension research.6

As there are no previously established research agendas driven by patients, caregivers, and healthcare providers (family physicians, nurses, nurse practitioners, pharmacists, and dietitians) in hypertension, we sought to identify their priorities for hypertension management research.

2. METHODS

To identify patient, caregiver, and care provider priorities for hypertension management research, we used the James Lind Alliance (JLA) process for prioritizing research.7 The JLA process is recommended by the Cochrane Agenda and Priority Setting Methods Group as a transparent, inclusive, systematic, and evidenced‐based approach. The JLA is part of the National Institute for Health Research Evaluation and the National Institute for Health and Care Excellence (NICE) in the United Kingdom, and the Canadian Knowledge Translation and Generation Network used this methodology for establishing patient research priorities for many chronic diseases.6, 8 The JLA approach brings stakeholders together in working partnerships to identify and prioritize unanswered questions that are agreed upon as most important through five progressive stages briefly outlined here. Details of this process are published elsewhere.7 The JLA process includes: (1) establishing a steering group to oversee all aspects of the study; (2) forming priority setting partnerships; (3) collecting potential research questions; (4) processing, categorizing, and summarizing those research questions; and (5) selecting the top 10 research priorities through an interim process and a final priority setting workshop using respondent ranking and consensus discussion. This approach is similar to the Patient‐Centered Outcomes Research Institute (PCORI) where stakeholders of research and scientists are brought together throughout the priority process using both qualitative and quantitative methods.4 The JLA approach, however, incorporates respondent ranking and consensus discussion for determining priorities, whereas the PCORI group recommends use of techniques such as value of information analysis (eg, assigning a value based on the prevalence of the issue).

2.1. Steering group

We established a steering committee of 15 volunteer patients, caregivers, and care providers from across Canada. The numbers of patients and caregivers were equally balanced with healthcare providers. Healthcare providers included one person in pharmacy, nursing, nutrition, behavioral medicine, primary care, and a hypertension specialist. In addition to the steering group, a JLA facilitator and an information specialist with experience in conducting literature reviews assisted the steering group throughout the study and were not involved in the prioritization of research questions.

2.2. Forming priority setting partnerships

Partner organizations were engaged to help disseminate the survey for determining research questions and in interim prioritization of questions. For this study, partners included national and provincial organizations that were involved with at least one component of hypertension management: lead partner Hypertension Canada, the Ontario Stroke Network, Canadian Association of Cardiovascular Prevention and Rehabilitation, Canadian Council of Cardiovascular Nurses, Ontario Home Economics Association, and the Canadian Nutrition Society, among others.

2.3. Gathering research questions

To identify treatment uncertainties in hypertension management, we used a web‐based national survey available in French and English for patients, caregivers, and healthcare providers. The survey included an open‐ended question asking, “What questions about the management of hypertension or high blood pressure would you like to see answered by research?” Respondents were provided examples of research questions for a different disease condition but were asked to focus their unanswered questions on hypertension management. They were also presented areas that could be included in hypertension management: interaction and communication between patients and healthcare providers, education, monitoring and measuring BP, BP medication or adherence to medications, lifestyle changes for patients, quality of life, and alternative/complimentary therapy. The survey was launched on the Hypertension Canada website and promoted through various media during a 10‐week period (March–May 2016). Potential other respondents were invited through local contacts of the steering group, social media promotion, and email lists of partner organizations. In addition to questions collected in the national survey, questions were identified from major national hypertension guidelines by identifying recommendations with low levels of evidence or future research questions that were reported in the guidelines. Guidelines reviewed included the most recent Hypertension Canada guidelines,9 NICE hypertension guidelines,10 American Heart Association/American College of Cardiology guidelines on the treatment of hypertension in the elderly,11 and the European Society of Hypertension/European Society of Cardiology hypertension guidelines.12

2.4. Categorizing and summarizing research questions

There were 386 respondents who submitted 673 questions. These questions were categorized into the following groups based on the content of the questions submitted: adherence to hypertension treatments; BP monitoring; medication and side effects; symptom‐related questions; targets and thresholds for treatment; non‐Western or complimentary therapies; education tools; communication with healthcare providers; psychosocial factors; exercise, diet, and other lifestyle issues; and other miscellaneous questions. Out‐of‐scope questions (eg, What are the causes of hypertension?) and statements that did not include a research question (eg, I am currently on [drug x] and I find it is not working.) were excluded by an information specialist and verified by the steering group. The collating, categorizing, and summarizing of research questions was performed by the information specialist following the JLA example approaches, followed by a scientific member, and then verified again by a patient or caregiver and healthcare professional paired team. Summary questions encapsulated individual questions that seemed to be asking the same question. For example, two respondents proposed the following questions: “What are some recommended safe and effective alternative therapies (ie, herbal medicines, First Nations traditional medicines) for treatment of hypertension?” and “Are there alternative medications that have fewer side effects that can manage hypertension rather than traditional medicine?” These two questions were incorporated into the following summative question: “What natural and alternative treatments are safe and effective for hypertension management?” The JLA consultant helped with training the information specialist and the patient/caregiver and healthcare professional teams to summarize questions.

Content experts then reviewed all summative questions and conducted standardized literature searches to verify true uncertainties and exclude questions sufficiently answered by high‐quality randomized controlled trial or systematic review evidence. Search terms for the literature review included: hypertension AND (randomized controlled trial [pt] or systematic review.mp. or random [tw]) followed by additional search terms relevant to the question. There were multiple questions that had some trial evidence and the steering committee then decided whether the evidence base was sufficient to exclude the question. For example, there were dietary feeding trials such as DASH (the Dietary Approaches to Stop Hypertension) trial that demonstrated significant reductions in BP in a high‐quality randomized controlled trial.13 However, the steering committee felt that questions asking about optimal diet should be retained as DASH in the real world and other diets needed to be evaluated for their effect on lowering BP (eg, optimal vegetarian diet, optimal South Asian diet).

2.5. Priority setting

Given that there were 55 summative questions, we held an interim prioritization process. First, we included only those questions that had a minimum of three respondent questions and/or those from typically underrepresented groups in research: persons living in rural areas, members of ethnic minority groups, or persons living in eastern provinces. To prioritize questions from major national guidelines, we only included those that were found in two or more guidelines or were found in the guideline and at least one question from the patient, caregiver, and healthcare provider survey. This resulted in a list of 42 summary questions that were posted in a second web‐based survey (Table S1). Steering group members, stakeholder partner groups, as well as patients, caregivers, and healthcare providers were invited to rank their top 10 questions on the online questionnaire. There were 63 respondents for the interim prioritization including 34 patients or caregivers and 29 healthcare providers. From this, the top 25 highest ranked questions were included for the final prioritization process. Steering group members also reviewed questions outside of the top 25 to retain any questions they felt were important to include in the final ranking workshop. A final priority‐setting 1‐day workshop of steering group members, partners, and additional patients and healthcare providers was held in June 2016 to identify the top 10 list from this final set of 25 questions. All participants were given the questions in advance of the workshop to review. There were 10 patients and caregivers, eight healthcare providers, and five stakeholder partners present who then prioritized questions through two small group and one final whole group discussion. Two JLA facilitators from the United Kingdom were present to ensure that all participants could express their views.

The University of British Columbia Research ethics board approved this study.

3. RESULTS

3.1. Baseline characteristics

There were 386 persons who responded to the survey. Of the 386 persons, 78% were patients or caregivers, 29% lived in rural areas, 78% were aged 50 to 80 years, and 75% were women. Patient questions were derived from all regions of the country (38% western provinces, 8% eastern provinces, 24% Quebec, and 30% Ontario).

3.2. Research questions

The 386 respondents submitted 673 individual research questions. After excluding out‐of‐scope (n=22), out‐of‐country (n=14), and no discernible questions (n=39), 598 questions remained. Most of the out‐of‐scope questions were focused on underlying causes of hypertension.

The Figure1 illustrates the types of questions submitted and the proportion submitted by patients or caregiver and healthcare providers. The most common questions submitted were on lifestyle modifications, followed by BP monitoring and medication‐related questions. The proportion of questions submitted by patients or caregivers and healthcare providers was generally similar across the type of questions except for education and communication where healthcare providers submitted a higher proportion of questions. There were also 65 “other” questions that did not fall into a single category (48% submitted by healthcare providers). Overall, there were 67 questions submitted that asked about reducing, stopping, or alternative strategies to antihypertensive therapy, of which 82% were submitted by patients or caregivers.

Figure 1.

Research questions submitted. BP indicates blood pressure

3.3. Prioritization

The 598 questions were distilled down to 67 unique, summative questions. Of the 67 questions, 25 were removed (12 questions had sufficient existing evidence and a further 13 questions were removed from the initial interim prioritization). Forty‐two questions were then ranked in the interim prioritization to the top 25 questions. Two questions reviewed by the steering committee were added in the list as they were felt to be high priority: “What are the optimal treatment strategies in aboriginal and other ethnic groups in the management of hypertension?” and “How does stress influence BP and what is the optimal treatment?” Two other questions were subsequently merged with others, allowing for a total of 25 questions for final prioritization.

3.4. Prioritized research questions

At the final day prioritization meeting, there was discussion about whether to include a question on medication adherence in the final top 10, but after deliberation it was decided that this question did not warrant supplanting another question in the top 10 list. The Table1 displays the final top 10 research questions as prioritized by the group with their rankings noted from the interim prioritization process. Of the top 10 questions, four questions were centered on lifestyle or alternative therapies, two were on evaluating tailored strategies for subpopulations of patients with hypertension, and two were on evaluating BP thresholds and targets. The top prioritized questions by healthcare providers were on BP targets using ambulatory measures and effective educational tools to improve hypertension management. The top prioritized questions by patients included lifestyle and alternative therapies.

Table 1.

Top 10 research priorities with ranking

Unanswered research question	Interim patient or caregiver rank	Interim healthcare provider rank	Final ranking
What healthy lifestyle habits or combination of habits can reduce or eliminate the need for antihypertensive agents?	2	6	1
Does treating stress influence blood pressure and what is the optimal therapy?	LRa	LRa	2
What is the best treatment strategy for different types of hypertension including those with a family history of hypertension and for men vs women?	19	34	3
Do treatment strategies based on control of out‐of‐office blood pressure (home blood pressure monitoring or 24‐hour ambulatory blood pressure monitoring) provide an advantage over strategies based on conventional office blood pressure control?	3	1	4
What are optimal educational tools, strategies, and technologies to improve patient motivation and health behavior change for hypertension?	11	2	5
What are the optimal thresholds for starting and stopping antihypertensive agents?	15	31	6
What is the optimal prescription of exercise emphasizing alternatives to walking/running for older individuals with and without arthritis or other health problems?	8	5	7
What hypertension management strategies are most effective for patients of Aboriginal descent or other ethnic groups?	37	37	8
What natural and alternative treatments are safe and effective for reducing blood pressure and do not adversely interact with antihypertensive agents?	1	4	9
What is the optimal role of different healthcare providers and caregivers in providing support to patients with hypertension?	34	12	10

^aLR refers to low rank—question added on by steering committee after interim prioritization as felt to be high priority despite not achieving high enough ranking for inclusion to interim prioritization.

4. DISCUSSION

Patient‐centered care has become a focus for healthcare providers, program planners, and research‐funding bodies.14, 15 This study determined the top 10 research questions for the management of hypertension jointly prioritized by patients, caregivers, and healthcare providers. The top 10 list includes priorities ranging from lifestyle modification and BP measurement to naturopathic therapies and shared care models. This study also highlights areas in hypertension management that are important to patients to improve patient‐centered care.

One of the main findings of this study was the emphasis of lifestyle modification, BP monitoring, and further tailoring of therapy to important subgroups. Similar to other JLA processes and from other surveys, patients prioritize lifestyle interventions over medications.16 Despite existing randomized trial evidence on lifestyle modification, patients and care providers prioritized this area, as there remained unanswered questions such as the optimal form of lifestyle modification and combination of lifestyle modifications on hypertension outcomes. Respondents were interested in determining what combinations of lifestyle interventions (eg, weight loss and physical activity compared with the DASH diet and salt reduction) would provide the greatest BP lowering. Although originally a question from a guideline, a high‐priority question was use of 24‐hour ambulatory BP monitoring readings as a target for BP control. This question was raised in multiple hypertension guidelines as data indicate the greater correlations with future cardiovascular events with 24‐hour ambulatory BP monitoring compared with standard office BP readings.9, 10 This topic was a highly rated question from both healthcare providers and patients as it was thought to have great potential to substantially impact clinical care and management. There was also prioritization for further individualizing medication therapy for subgroups including women, ethnic groups, and persons with presumably genetic causes of hypertension. Preference for treatments tailored to at‐risk subgroups is in parallel with current interest from the scientific community on personalized medicine. This individualization was also evident in lifestyle modification including optimal exercise prescriptions for patients with varying degrees of immobility.

There were some differences between patients and caregivers compared with healthcare providers in the questions submitted. Patients submitted more questions on psychosocial issues in hypertension management, in particular, psychosocial stress, depression, and anxiety, than care providers. Optimal therapies for stress reduction in lowering BP was considered very important by patients and were rated as high priority for research at the final workshop by both patients and healthcare providers. In contrast, healthcare providers tended to submit a larger proportion of questions on education, communication, and BP monitoring. In particular, education on home BP monitoring and behavior change to help patients better adhere to lifestyle modification were of high priority to care providers (ranked second by care providers and 11th by patients and caregivers in the interim prioritization). This may in part stem from the recent criteria in hypertension guidelines to use out‐of‐office BP readings for the diagnosis and monitoring of BP.9, 10 Healthcare providers also wanted evidence on better communication strategies. For example, “How can we better express the risks and benefits of antihypertensives to patients to allow informed decision making?” Questions on BP monitoring also included identifying targets of 24‐hour ambulatory BP monitoring and management for patients with substantial BP variability on home monitors.

An ancillary theme in the questions submitted and the priority‐setting process was the importance of reducing dose and number of antihypertensive medications and alternative strategies to medication therapy. Clinical trials in hypertension focus almost exclusively on BP change and cardiovascular end points. Although identifying the outcomes that mattered most to patients was not specifically included in the survey, there were a substantial number of questions submitted by patients that included eliminating, reducing, or alternative strategies to antihypertensive medication as an important goal. In contrast, few questions explicitly included cardiovascular benefits as an outcome. This is consistent with patients’ general preference for lifestyle modification over drug therapy and may reflect underlying reasons for medication nonadherence.

This work highlights areas that are relevant for clinicians and public health programmers to improve patient education and deliver patient‐centered care. The patient's focus on lifestyle modification, despite existing evidence, suggests a significant knowledge deficit and the challenge for research to penetrate the public perception. Greater knowledge translation efforts are needed to improve patient awareness in these deficit areas and, in particular, on what lifestyle interventions reduce BP and the potential benefits on BP. Hypertension management that focuses on health behavior change may also improve patient engagement. As patients preferred individualized therapy, discussing with patients the rationale for selecting specific antihypertensive choices given patient characteristics may also further engage patients. Other strategies that reduce medication burden such as single‐pill combinations, using once‐daily dosage regimens, and novel nondrug interventions that reduce medication burden such as renal denervation may enhance patient engagement in hypertension treatment and better align with patient preferences.

5. STUDY STRENGTHS AND LIMITATIONS

The strengths of this study are the use of a well‐established systematic and transparent process to jointly identify priorities of patients and care providers across Canada. There are also several limitations to note in this study. First, respondent questions may not necessarily represent all patients with hypertension. However, this study did include participants from all major regions of Canada, those living in rural areas and French‐speaking Canadians, who are typically underrepresented in surveys. Second, prioritization of research questions is an inherently subjective process and other groups conducting this process may find different priorities. The significant number of respondents and the strong prioritization of lifestyle interventions, consistent with other JLA research priority‐setting studies in other disease topics,16 suggests that main priorities would likely be similar to other patients and providers. Third, the survey was web‐based and persons without internet access would have been excluded. However, internet usage in Canada was reported as 83% in 2012.17

6. CONCLUSIONS

These research priorities can be used to guide researchers and funding bodies on hypertension management research considered most relevant to patients, caregivers, and healthcare providers. These priorities suggest that more research and knowledge translation is needed for lifestyle modification, optimizing health behavior change, BP monitoring, and further individualizing therapy. Focusing on these areas may also help deliver patient‐centered care.

CONFLICTS OF INTEREST

There are no conflicts of interest to declare with this work.

Supporting information

 

Khan NA, Bacon SL, Khan SA, et al. Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group. J Clin Hypertens. 2017;19:1063–1069. 10.1111/jch.13091