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Patient-Centered Educational Resources for Atrial Fibrillation
JACC: CLINICAL ELECTROPHYSIOLOGY
VOL. 5, NO. 10, 2019
CROWN COPYRIGHT ª 2019 PUBLISHED BY ELSEVIER ON BEHALF OF THE AMERICAN COLLEGE OF CARDIOLOGY FOUNDATION. ALL RIGHTS RESERVED.
TOPIC REVIEW
Patient-Centered Educational Resources for Atrial Fibrillation Celine Gallagher, PHD,a,b Debra Rowett, B PHARM,c,d Karin Nyfort-Hansen, B PHARM, GRAD DIP ED(HEALTH),a Shalini Simmons, RN,d Anthony G. Brooks, PHD,a John R. Moss, BEC, MSOCSCI, MBBS,e Melissa E. Middeldorp, PHD,a,b Jeroen M. Hendriks, PHD,a,b Tina Jones, PHD,f Rajiv Mahajan, MD, PHD,a,g Dennis H. Lau, MBBS, PHD,a,b Prashanthan Sanders, MBBS, PHDa,b
ABSTRACT Education has long been recognized as an important component of chronic condition management. Whereas education has been evaluated in atrial fibrillation (AF) populations as part of multifaceted interventions, it has never been tested as a single entity. The aim of this review is to describe the rationale for and role of education as part of comprehensive AF management. The development and use of educational material as part of the intervention of a randomized controlled trial, the HELP-AF (Home-Based Education and Learning Program in AF) study, will be described. This study was designed to determine the impact of a home-based structured educational program on outcomes in individuals with AF. An educational resource was developed to facilitate delivery of 4 key messages targeted at empowering individuals to self-manage their condition. The key messages focused on strategies for managing future AF episodes, the role of pharmacotherapy in the treatment of AF, the appropriate use of medicines to manage stroke risk and the role of cardiovascular risk factor management in AF. To support structured educational visiting, an educational booklet titled Living Well With Atrial Fibrillation (AF) was developed by a multidisciplinary team and was further refined following input from expert clinicians and patient interviews. Using a structured educational visiting approach, education was delivered by trained clinicians within the patient’s home. (J Am Coll Cardiol EP 2019;5:1101–14) Crown Copyright © 2019 Published by Elsevier on behalf of the American College of Cardiology Foundation. All rights reserved.
From the aCentre for Heart Rhythm Disorders, University of Adelaide, Adelaide, Australia; bDepartment of Cardiology, Royal Adelaide Hospital, Adelaide, Australia; cSchool of Pharmacy and Medical Sciences, University of South Australia, Adelaide, Australia; dDrug and Therapeutics Information Service, Southern Adelaide Local Health Network, Adelaide, Australia; eSchool of Public Health, The University of Adelaide, Adelaide, Australia; fCentral Adelaide Local Health Network, Adelaide, Australia; and the gDepartment of Cardiology, Lyell McEwin Health Service, Adelaide, Australia. This study was supported by a South Australian Cardiovascular Research Network Grant jointly funded by the National Heart Foundation and the Government of South Australia. The sponsor of the study is the University of Adelaide. Several of the authors are employees of the University of Adelaide. The sponsor has had no direct involvement in the design and conduct of the study, collection, management, analysis and interpretation of the data, preparation, review or approval of the manuscript; or the decision to submit the manuscript for publication. Dr. Gallagher is supported by fellowships from the University of Adelaide. Dr. Brooks has received honoraria from MicroPort; and accepted a continuing position at MicroPort CRM (formerly LivaNova Australia Pty Limited) subsequent to the design and commencement of the study. Dr. Middeldorp is supported by fellowships from the University of Adelaide. Dr. Hendriks has received lecture and/or consulting fees paid to his institution from Medtronic and Pfizer/BMS; and is supported by the Future Leader Fellowship from the National Heart Foundation. Dr. Mahajan has received lecture and/or consulting fees paid to his institution from Medtronic, Abbott, Pfizer, and Bayer; has served on the Advisory Board of Abbott; has received research funding paid to his institution from Medtronic, Abbott, and Bayer; and is supported by a fellowship from the National Health and Medical Research Council of Australia. Dr. Lau has received lecture and/or consulting fees paid to his institution from Abbott, Boehringer Ingelheim, Biotronik, Medtronic, and Pfizer; and is supported by the Robert J. Craig Lectureship from the University of Adelaide and a mid-career fellowship from the Hospital Research Foundation. Dr. Sanders has served on the Advisory Boards of Medtronic, Boston Scientific, Abbott Medical, Pacemate, and CathRx; has received research and/or lecture fees paid to his institution from
ISSN 2405-500X/$36.00
https://doi.org/10.1016/j.jacep.2019.08.007
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Patient Education and AF
ABBREVIATIONS AND ACRONYMS AF = atrial fibrillation
nificant morbidity and mortality (1).
Prevalence of the condition continues to
PC-SEV = patient-centered structured educational visiting
PEMAT = Patient Education Materials Assessment Tool
SEV = structured educational visiting
A
trial fibrillation (AF) is an emerging global epidemic associated with sig-
rise and hospitalizations, which are the main driver of cost, have demonstrated upward trends (2,3). Hospitalizations due to AF now outnumber those for both heart failure and myocardial infarction (4). Effective strategies are needed to mitigate these
trends. Alternative models of care delivery have demonstrated enhanced patient outcomes in AF, with education a component of these interventions (5–7). However, the role of personalized education, facilitated by the use of educational material, has not been evaluated.
EDUCATION AND HEALTH LITERACY Education to improve outcomes in chronic illness has long been advocated (8). A United Kingdom biobank study has demonstrated that each additional 3.6 years of education was associated with a 37% reduction in risk of coronary heart disease (9). Whereas approximately one-half of this risk was mediated through traditional risk factors, more than one-half of the protective effect of education remains unexplained (9). Such evidence supports the crucial role of welldesigned patient materials in facilitating delivery of
HIGHLIGHTS The prevalence of AF has grown exponentially in recent decades and is associated with high hospitalization burden and poor quality of life. Education has been advocated as a key component of chronic condition management, yet the role of education on outcomes in the AF population is poorly defined. Structured educational visiting, based on the principles of academic detailing, has been associated with improvements in physician prescribing practices with variable effects observed in influencing patient and caregiver outcomes. In the HELP-AF study, an educational resource was developed and used to support delivery of education by trained clinicians, using a patient-centered structured educational visiting approach, within the patient’s home. a level significantly above the fifth to sixth grade level which is generally recommended for patient-level material (12).
health education. Low health literacy has been associated with poor patient outcomes including hospi-
EDUCATION AS PART OF
talizations
STRUCTURED AF PROGRAMS
and
emergency
department
visits,
inability to comprehend medication and healthrelated information, inappropriate medication use,
Structured AF care programs, of which education has
poorer overall health, and higher mortality (10).
formed one component, have delivered varied results
Therefore, it is of paramount importance to have
(5–7). In a single-center randomized trial, protocol-
educational material that can cater to a broad range of
driven, software decision supported and nurse-
literacy levels. This is further confounded by the
delivered management resulted in a reduction in the
growing trend of using internet-based health infor-
composite endpoint of cardiovascular death and
mation of varying quality (11). A review of digital
hospitalizations (5). Another study recruited patients
health applications for AF highlighted significant
presenting to the emergency department and deliv-
variation in quality with validation of scientific con-
ered education by telephone, the opportunity to
tent occurring in <16% of cases (12). Furthermore,
attend 1 group based education session, followed by 1
average reading level of applications intended for
nurse-delivered and cardiologist-supported outpa-
non–health care professional use was 12.1 2.6 years,
tient
appointment,
resulted
in
a
Boston Scientific, Medtronic, Abbott Medical, and MicroPort; and has received a practitioner fellowship from the National Health and Medical Research Council and National Heart Foundation. All other authors have reported that they have no relationships relevant to the contents of this paper to disclose. The authors attest they are in compliance with human studies committees and animal welfare regulations of the authors’ institutions and Food and Drug Administration guidelines, including patient consent where appropriate. For more information, visit the JACC: Clinical Electrophysiology author instructions page. Manuscript received August 5, 2019; revised manuscript received August 19, 2019, accepted August 19, 2019.
reduction
in
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Patient Education and AF
T A B L E 1 Examples of Educational Resources Reviewed for the HELP-AF Study
Resource
Source or Sponsor
Date of Publication
Description and Contents
Development and Validation Details (If Available)
1. Atrial fibrillation
JAMA Patient Page (25)
2010
Single page passive information in A4 handout format, small font with ECG illustration. Content includes ECG changes, symptoms, and treatment options.
Developed by JAMA, authors, and sources listed.
2. A patient’s guide to living with atrial fibrillation
Cardiology Patient Page (26)
2008
Passive information in A4 handout format, 4 pages. Small font, no illustrations. Content includes AF diagnosis, symptoms, treatment options, lifestyle adjustment, coping, and emotional health.
Developed by the AHA, authors, and references shown.
3. Living with a new oral Office of the Chief Medical Officer anticoagulant Department of Health (NOAC) information Government of Western Australia for patients
4. Warfarin booklet
SA Health Government of South Australia
5. Atrial fibrillation: Do you know your colors?
St. Michael’s Hospital and Centre for Innovation in Complex Care, University Health Network, Toronto, Canada (27)
6. Decision aid for stroke prevention in AF
Audio booklet (28)
7. Computer tool to Yale University School of Medicine improve the quality and other academic research of decision making in centers (29) atrial fibrillation
2013
Passive information in A4 handout format, 10 pages. Developed by the Western Australian Large font, minimal illustrations. Content includes Medication Safety Group.* indications for treatment, dosing instructions, other medicines, bleeding symptoms, prevention of bleeding, other side effects, comparison with warfarin.
2009
Personalized A5 booklet format developed as a Developed by the Pharmacy counseling aid, 30 pages. Large font, minimal Department, RAH and approved by the RAH Drug Committee. illustrations. Includes record pages for INR results, doses, date of next blood test, warfarin indications, Endorsed by the RAH Consumer brands, INR tests, dosing instructions, diet, alcohol, Advisory Council. short-term illness, other medicines, bleeding symptoms, and precautions.
2013
Interactive self-assessment and educational tool using Multidisciplinary iterative process traffic light assessment, 4 pages. Quiz questions incorporating patient input and focusing on stroke prevention and symptom control, human-centered design. designed to support interaction with physician.
2000
Decision support 32 page booklet with 20-min Evidence-based benefit and risk audiotape. Pictorial presentations of stroke and content developed in 4 versions for bleeding risk, potential pros and cons of warfarin and different levels of stroke risk by a aspirin, and personal worksheet to help patients multidisciplinary team and pilot clarify their values and preferences before meeting tested by physicians and patients. with their physician. Validated in an RCT.
2011
Designed to be used on a laptop in primary care Tool was designed to conform to the settings prior to medical consultation. Administered International Patient Decision Aids by a facilitator following a script. Uses pictographs to Standards. Development occurred provide individualized outcome data for stroke and in an iterative process after patient bleeding risk. feedback. Validated for feasibility and acceptability.
Examples of educational resources reviewed in 2013 to assist in developing the educational booklet for the HELP-AF study, showing variability in content, delivery, interactive and personalized features, and development methods. Resources on rows 1, 2, and 3 are passive information handouts with no personalized content; row 4 contains personalized information and records to assist anticoagulation selfmanagement; row 5 is interactive and designed to support patient engagement with their physician; row 6 is a decision support aid with audiotape to assist shared decision making and the only listed resource validated in an RCT; and row 7 is a computer-delivered decision support tool supervised by a trained facilitator. *Information is available at www.watag.org.au/wamsg. AF ¼ atrial fibrillation; AHA ¼ American Heart Association; ECG ¼ electrocardiogram; HELP-AF ¼ Home-Based Education and Learning Program for Atrial Fibrillation; INR ¼ international normalized ratio; JAMA ¼ Journal of the American Medical Association; RAH ¼ Royal Adelaide Hospital; RCT ¼ randomized controlled trial; SA ¼ South Australia.
the composite endpoint of death, cardiovascular
sessions and support provided in an ad hoc manner.
hospitalization, and AF-related emergency visits (6).
In this randomized trial, the composite endpoint of
However, despite education forming a key compo-
all-cause death or unplanned hospitalizations was not
nent, little detail is presented on the development
different, although the co-primary outcome of event-
and delivery of the educational components.
free days favored the interventional arm (7).
The SAFETY (Standard Versus Atrial Fibrillation-
The RACE 3 study targeted upstream interventions
Specific Management Strategy) study (7) delivered
that included protocol-driven pharmacotherapy and
education with the support of a booklet, as part of a
cardiac rehabilitation and resulted in a greater
broader management strategy, to individuals who
freedom from AF at 12 months (13). Whereas signifi-
had recently been hospitalized for AF. Although the
cant detail is provided concerning the cardiac reha-
booklet was published, the development and evalu-
bilitation program and counseling provided by a heart
ation of this was not described (7). The booklet con-
failure/rhythm nurse, the educational component of
tains an explanation and definition of AF, symptoms,
these interventions is not clear (13). Similarly, studies
diagnosis, possible complications, treatment options,
specifically targeting modification of risk factors have
signs requiring urgent hospital presentation, and
demonstrated a reduction in AF symptoms (14),
lifestyle modification (7). The content of education
improved maintenance of sinus rhythm (15,16), and
sessions was not standardized, but rather adapted to
reversal of the AF process (17). Whereas these studies
each individual’s perceived need, with ongoing
have provided detail concerning the counseling
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provided, and have stated that written and verbal
of AF were developed (Central Illustration). These
advice was provided, specific detail concerning
were:
educational content is lacking. The impact of education alone in these interventions is difficult to ascertain for several reasons. First, the multifaceted interventions make it difficult
to
elucidate
the
contribution
of
each
element. Second, education was not delivered in a standardized manner. Finally, the delivery and nature of education provided in these studies has not been described in detail, or was undertaken in an ad hoc manner, making it difficult to replicate such in-
1. Take your AF medications as prescribed to reduce your symptoms and risk of stroke. 2. Stroke preventing medications can reduce your risk of stroke by up to 60% to 70%. 3. Reduce your risk of AF becoming more severe and risk of stroke by choosing a healthy lifestyle. 4. AF episodes are not usually medical emergencies. Follow your personal action plan during an AF episode with usual symptoms.
terventions and therefore limits the reproducibility
Message 1: Take your AF medications to reduce
and scalability of these educational components. The
y o u r s y m p t o m s a n d r i s k o f s t r o k e . Discussion
development of the intervention materials for the
focused on the role of medication adherence and
HELP-AF (Home-Based Education and Learning Pro-
persistence to manage AF symptoms and reduce
gram for AF) study is described below to facilitate
stroke risk. Each patient’s medication regimen was
translation into practice.
recorded prior to the home visit. At the first home visit, individuals were asked to show the educational visitor all their medications and each medicine was
DEVELOPMENT OF PATIENT-CENTRIC
discussed in relation to its role in managing AF or
EDUCATIONAL CONTENT FOR THE
associated
HELP-AF STUDY An educational resource was developed to support delivery of the intervention of the HELP-AF study. A literature review was performed exploring patient attitudes, knowledge, and beliefs about AF (Online Appendix). Additionally, a review of available patient resources for AF was undertaken (Table 1). With the support of a multidisciplinary team and patient input, key messages were developed to achieve the behavioral goals of the intervention. Concise educational materials were then developed to support the delivery of the key messages. The educational materials were tested during various stages of the development process on AF patients to ensure they were readable, understandable, and received feedback to facilitate modifications. The study version of the educational material was finalized only after approval from the multidisciplinary
development
comorbidities.
Over-the-counter
and
complementary medicines were also discussed with
team,
clinicians,
and
in-
dividuals with AF. IDENTIFIED GAPS IN PATIENT KNOWLEDGE. Several
information provided about possible known interactions with prescribed therapy. The role of rateand rhythm-controlling medications in managing symptoms was discussed. Individuals were encouraged to maintain an up-to-date list of their medicines and, if required, a medication list was provided to facilitate this. Message 2: Stroke preventing medications can reduce your risk of stroke by up to 60% to 7 0 % . The educational visitor and patient together calculated a CHADS2 (Congestive Heart Failure, Hypertension History, Age $75 Years, Diabetes Mellitus
History,
Stroke
or
Transient
Ischemic
Attack) score and information was conveyed about resultant stroke risk. To reinforce the role of anticoagulation, anticoagulants were referred to as “stroke preventers” in the booklet. Focus was on the role of appropriate anticoagulation in managing stroke risk. All patients with a CHADS2 score of 1 or more were advised to discuss the role of anticoagulation with their treating physicians. As the
gaps in knowledge were identified and addressed in
CHA 2DS2-VASc (Congestive Heart Failure, Hyper-
the development of the educational material. An
tension, Age $75 Years, Diabetes Mellitus, Prior
important theme related to patient uncertainty con-
Stroke or Transient Ischemic Attack or Thrombo-
cerning management of AF episodes. Key messages
embolism, Vascular Disease, Age 65 to 74 Years,
deemed most relevant to self-management of AF
Sex) score became more widely utilized, this score
were developed, with delivery of these messages
was also calculated to assist in determining and
supported by an illustrated educational booklet.
conveying stroke risk.
KEY MESSAGES FOR THE HELP-AF INTERVENTION. Four
importance of maintaining the international normal-
key messages deemed most relevant to management
ized ratio within the therapeutic range was discussed
If
individuals
were
prescribed
warfarin,
the
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C ENTR AL I LL U STRA T I O N Key Messages Delivered for the HELP-AF Intervention
Gallagher, C. et al. J Am Coll Cardiol EP. 2019;5(10):1101–14.
Delivery of the intervention for the HELP AF study was focused on delivery of 4 key messages designed to empower individuals to self monitor and manage their AF. The REST plan provided advice on how to manage future episodes of AF. AF ¼ atrial fibrillation; ED ¼ emergency department; HELP-AF ¼ Home-Based Education and Learning Program for Atrial Fibrillation; REST ¼ Rest, Estimate pulse, See action plan, Telephone.
and barriers to achieving this were reviewed. A re-
A baseline profile of each patient’s cardiovascular risk
view of diet and medication interactions was un-
factor profile was undertaken prior to the home visit.
dertaken. Patients were encouraged to maintain a
Based on this and dependent on patient need, a tar-
written record of their international normalized ratio
geted discussion with practical steps concerning
results and a record booklet was provided if neces-
weight-loss, dietary modification, alcohol reduction,
sary. Those prescribed direct acting oral anticoagu-
improving exercise capacity, smoking cessation,
lants were given information specific to their agent.
improving glycemic control and addressing dyslipi-
Patients were encouraged to ensure they had regular
demia was undertaken.
checks with treating physicians to address any
Message 4: AF episodes are not usually medical
bleeding risks and ensure the appropriateness of
emergencies. Follow your personal action plan
drug dosing.
d u r i n g a n A F e p i s o d e w i t h u s u a l s y m p t o m s . The
Message 3: You can reduce your risk of AF
final message was developed in response to a patient-
becoming more severe and risk of stroke by
identified gap in knowledge and focused on strategies
c h o o s i n g a h e a l t h y l i f e s t y l e . This emphasized the
for managing future AF episodes. The aim of this
role of cardiovascular risk factor management in AF.
message was to convey that episodes of AF with
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F I G U R E 1 Pulse Palpation
Instruction on pulse palpation. AF ¼ atrial fibrillation.
“usual symptoms” are not medical emergencies and
individualized
do not generally require hospital presentation. A
treating physicians.
written
advice
from
their
discussion of each patient’s usual AF symptoms
Telephone: this was a 24-h telephone line that
occurred in addition to teaching how to palpate the
patients could call for advice for managing
pulse to assist in recognition of episodes (Figure 1).
their AF episode if they were unsure despite
Each patient was given an action plan to develop with
following the first 3 steps of their plan. This
their treating physician to assist in managing their AF
telephone line was held by an on-call cardiac
episodes. This was provided on an A4 sheet of paper
electrophysiology team.
and wallet card (Figure 2). The plan used the acronym The intention of the REST plan was not for in-
REST whereby: R: the patient was encouraged to rest and recognize any potential triggers.
this
was
the
personalized
component of the plan where patients were encouraged treating
to
follow
physicians
advice
from
their
concerning
steps
they
should take when AF episodes recur. Specific
advice
was
advice provided by treating physicians could be employed to manage AF episodes with usual symp-
was an AF episode. plan:
symptomatology, but rather to highlight that an episode of AF with usual symptoms and appropriate
Estimate pulse: this was done to confirm that this See action
dividuals to avoid hospitalizations regardless of
not
provided
by
the
toms. Participants were advised to seek tailored advice from their treating clinicians, as this would include discussion of “usual symptoms” and scenarios that may require hospital presentation. Additionally, comorbid status and literacy levels could also be taken in to account, with advice tailored to each individual.
educational visitors for this component of
UTILITY OF EDUCATIONAL RESOURCE. The educa-
the plan, but advice already received was
tional material was formatted as a graphical aid in the
discussed.
form of an illustrated booklet titled Living Well With
Patients were
asked to
obtain
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F I G U R E 2 REST Plan for Managing AF Episodes
The REST plan for management of AF episodes. AF ¼ atrial fibrillation; GP ¼ general practitioner; HELP-AF ¼ Home-Based Education and Learning Program for Atrial Fibrillation; REST ¼ Rest, Estimate pulse, See action plan, Telephone.
Atrial Fibrillation (AF) (Online Appendix). The pur-
the active voice, use of direct and specific actionable
pose of this resource was to support messages deliv-
steps, reinforcement of key messages with questions,
ered
ensure
avoidance of jargon, larger font, simple layout, short
consistency of key messages between visitors. The
by
the
educational
visitor
and
sentences and paragraphs, plenty of white space on
booklet developed for the HELP-AF study differed
the page, double spacing, left justification, and nar-
from other patient educational resources in that fig-
row or multiple columns to limit line length. In
ures were designed as graphical aids to support
addition, words no longer than 3 syllables were used
interaction with the patient and reinforce key mes-
wherever possible. In accordance with these principles,
sages, underpinned by social marketing principles.
the educational booklet developed for the study was
The figures were chosen to reflect a broad range of
suitable for a broad range of literacy levels. In this regard
demographics to connect to a wide range of in-
the booklet developed for this study is thus unique in
dividuals. The booklet content centered around the
comparison to other patient resources specific to AF.
key messages, with other content used to enhance patients’ understanding of their condition and pro-
CONTENT OF THE EDUCATIONAL RESOURCE
vide background information. Principles outlined by the U.S. National Institute
BACKGROUND
INFORMATION. The
educational
on Aging for making print materials senior friendly
booklet contained extensive background information
were used (Online Appendix). This included use of
presented in simple language. This included a
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F I G U R E 3 Common AF Symptoms
Common AF symptoms represented in figure form. AF ¼ atrial fibrillation.
discussion of AF pathophysiology supported by a di-
pharmacotherapy including rate and rhythm medi-
agram
cations
and
electrocardiogram
tracing.
Common
and
oral
anticoagulation.
The
booklet
symptoms experienced with AF were presented in
included a table to allow estimation of stroke risk
written and figure form (Figure 3). Causes and types
using the CHADS 2 score, allowing discussion of
of AF were also discussed supported by a basic
appropriate use of anticoagulation according to
explanation of AF. Common triggers for paroxysmal
guidelines current at the time (Figure 5). The impor-
episodes were also identified.
tance of re-evaluation of this score over time was
AF COMPLICATIONS. Common complications arising
from AF were documented in written and pictorial form. Risks of increased stroke (Figure 4), heart failure, syncope, and falls was discussed with strategies to avoid or minimize risk of development of these complications.
emphasized. LIFESTYLE
MANAGEMENT. A
review of common
cardiovascular risk factors was undertaken in addition to strategies to address each factor. Practical steps were summarized in addition to contact details of external organizations that may be able to assist
TREATMENT FOR AF. An extensive review of treat-
patients in improving their cardiovascular risk factor
ment for AF was provided, with a focus on use of
profile.
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F I G U R E 4 Stroke Risk in AF
Pictorial representation of increased risk of stroke in atrial fibrillation (AF).
MEDICATIONS AND GLOSSARY. An extensive sum-
The booklet was designed to be used interactively
mary table of commonly used AF medications was
during structured educational visiting (SEV) and to
provided including generic and brand names, reasons
empower individuals to self-manage their condition
for use, mode of action, and common side effects. A
through several practical steps. A summary of these
glossary of terms relevant to AF with definitions in
steps was listed in both the educational booklet and,
simple language was also provided.
in brief on the AF action plan, to act as a prompt for
QUESTIONS FOR MY DOCTOR. A 2-page section was
dedicated to a list of questions that patients may
individuals (Figure 7).
THE HELP-AF INTERVENTION
wish to discuss with their treating physicians. During discussion with the patient, the educator
THE
highlighted questions that were most relevant for
HELP-AF study has been previously described (18). In
the individual. Space was provided for clinicians to
brief, this was a multicenter randomized controlled
provide
trial in which 627 individuals presenting to the
written
(Figure 6).
answers
to
these
questions
HELP-AF
STUDY. The
methodology for the
emergency departments of 6 hospitals in Adelaide,
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F I G U R E 5 Calculation and Monitoring of CHADS 2 Score
Table for participants to record their CHADS score. CHADS2 ¼ Congestive Heart Failure, Hypertension History, Age $75 Years, Diabetes Mellitus History, Stroke or Transient Ischemic Attack Symptoms Previously; other abbreviations as in Figures 1 and 2.
South Australia, primarily due to AF, were recruited.
RATIONALE FOR SEV
Patients were randomized 1:1 to the HELP-AF intervention or usual care. Follow-up occurred over a 24-
SEV is based on the principles of academic detailing
month period.
and social marketing. Academic detailing is also
The study was approved by the Human Research
referred to as “educational outreach” and “educa-
Ethics Committees of each participating institution.
tional visiting” with the term “academic detailing”
The study is registered at the Australian New Zealand
becoming widely adopted following an early study by
Clinical Trials Registry (ACTRN12611000607976).
Avorn and Soumerai (19). Academic detailing has
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F I G U R E 6 Prompt Questions for Patients to Discuss With Treating Practitioners
Abbreviations as in Figures 1, 2, and 5.
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F I G U R E 7 Actionable Steps for AF Self-Management
Actionable steps study participants could follow to manage their AF. Abbreviations as in Figures 1 and 2.
been influential in changing prescribing habits with
understanding of the patient’s values, needs, and
evidence that this approach may be translatable to
preferences to influence behaviors.
clinician-patient interactions (20). However, SEV has never been tested in an AF population.
Influencing patient behaviors using educational outreach visiting is a relatively novel concept that has
In addition to treatment as per usual care path-
been tested in a limited number of studies. In a
ways, the intervention group in the HELP-AF study
palliative care trial, the use of educational outreach
received 2 home visits using a SEV approach. Delivery
visiting delivered over 2 home visits by palliative care
of key messages is constructed around areas of
nurses at the point of functional decline, resulted in
behavior change to influence outcomes. An exchange
better performance status but did not have an impact
of information occurs throughout the visit with the
on pain levels or hospitalizations (19). In a trial of
educational
educational outreach visiting for carers of individuals
visitor
skilled
in
developing
an
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with advanced respiratory disease using long-term
QUALITY ASSURANCE. To ensure standardization of
oxygen therapy, 2 home visits delivered by nurses
the SEV, educational visitors completed a report for
6 weeks apart resulted in improved quality of life for
each visit, including the time spent discussing each
patients but was associated with higher mortality in
key message and areas of patient interest. Weekly
the intervention group compared with the control
meetings were held for the study team to assess any
group (21). Given the impact of educational outreach
issues related to delivery of the intervention. Four
visiting on improving clinician-centered outcomes,
meetings were held throughout the delivery of the
further studies evaluating the impact of this approach
interventional phase of the study to ensure fidelity by
in patient-based interventions are warranted.
each of the clinicians to the intervention. A random review of home visit reports undertaken by each
KEY COMPONENTS OF THE INTERVENTION. Two key
clinician was reviewed to ensure consistency in
elements underpinned delivery of the intervention: 1)
intervention delivery.
clinical characterization of the patient; and 2) patientcentered structured educational visiting (PC-SEV). CLINICAL
CHARACTERIZATION. This
was under-
taken via a medical record review of each patient and telephone
discussions
between
the
visiting
researcher clinician and patient prior to the first home visit. Extensive information was collected including:
QUALITY ASSESSMENT OF PATIENT EDUCATIONAL RESOURCES To address variability in patient educational information, several tools have been developed. The Patient Education Materials Assessment Tool (PEMAT) provides a structured approach to assessing the understandability and actionability of educational
Management and events leading up to the index
material (22). A recently published review of 35
presentation for AF and any scheduled follow-up
Internet-based patient resources for anticoagulants
care;
demonstrated that the majority of patient resources
AF history including when the condition was diagnosed,
usual
symptomatology,
prior
and
identified on popular search engines rated highly on understandability but performed poorly on actionability according to the PEMAT guidelines (23). Lack
planned interventions; Sociodemographic history including current living
of actionability is a recurring theme through other
conditions, social network, and education level;
patient resource reviews. A review of 25 decision
Comorbid conditions;
support aids for primary cardiovascular disease pre-
Current medications;
vention demonstrated high scores on the PEMAT for
Previously trialed medications;
understandability but performed poorly for action-
Cardiovascular risk factor profile;
ability (24). The lack of actionability inherent in many
Current beliefs and knowledge about AF and its
patient resources to date has been addressed in the current study through specific and explicit steps in-
management. This pre–home visit contact assisted in establishing early rapport between the educational visitor and patient
and
formed
a
basis
for
targeting
key
behaviors.
dividuals can take to self-manage their condition. In the new era of personalized medicine, the HELPAF intervention provides a novel approach for patient-centered education for AF. The intervention is unique in its approach to education by combining
PC-SEV. Two PC-SEV were the central component of
the intervention in the HELP-AF study. The first visit
clinical characterization and home-based SEV provided by clinicians, supported by a booklet with
occurred 1 to 2 weeks following enrolment with the
actionable steps patients can take to self-manage
second occurring 6 weeks later.
their condition. The HELP-AF study will provide
PERSONNEL. The
intervention was delivered by
unique insights into this novel approach to person-
either a pharmacist or nurse. Clinicians delivering the
alized education and empowerment of individuals
intervention attended a 3-day training session from
with AF.
the Drug and Therapeutics Information Service, Adelaide, Australia, on the principles of academic detail-
CONCLUSIONS
ing and the application of PC-SEV. A video-recorded mock home visit was performed at this training
Current models of care delivery are inadequate in
session to provide feedback to the educational visitor
meeting the needs of the AF population with
on areas for improvement. Additionally, clinicians
exponential increases in hospitalizations. Structured
were upskilled in the current management of AF.
care programs have demonstrated enhanced patient
1113
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Gallagher et al.
JACC: CLINICAL ELECTROPHYSIOLOGY VOL. 5, NO. 10, 2019 OCTOBER 2019:1101–14
Patient Education and AF
outcomes in AF populations, but the role of edu-
structured educational visiting, on clinically rele-
cation
a
vant outcomes in a contemporary cohort of patients
pivotal component of chronic condition manage-
with AF. This study will provide the most compre-
ment, the development and validation of educa-
hensive evidence to date concerning the efficacy of
tional resources for AF has not been well described.
home-based patient-centered structured education
Several studies have utilized educational resources
in AF.
is
unclear.
Whereas
education
forms
as a component of multifaceted interventions, but the replication of such interventions is limited
ADDRESS FOR CORRESPONDENCE: Dr. Prashanthan
due to a lack of detail concerning development
Sanders, Centre for Heart Rhythm Disorders, Depart-
and delivery of this education. The aim of the
ment of Cardiology, Royal Adelaide Hospital, Port
HELP-AF study is to evaluate the role of a novel
Road, Adelaide, South Australia 5000, Australia.
approach,
E-mail: [email protected].
using
clinical
characterization
and
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2. Freeman JV, Wang Y, Akar J, Desai N, Krumholz H. National trends in atrial fibrillation hospitalization, readmission, and mortality for Medicare beneficiaries, 1999–2013. Circulation 2017;135:1227–39. 3. Stewart
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Bailey AE, Capewell S, McMurray JJ. Trends in hospital activity, morbidity and case fatality related to atrial fibrillation in Scotland, 1986– 1996. Eur Heart J 2001;22:693–701. 4. Gallagher C, Hendriks JM, Giles L, et al. Increasing trends in hospitalisations due to atrial fibrillation in Australia from 1993 to 2013. Heart 2019;105:1358–63. 5. Hendriks JM, de Wit R, Crijns HJ, et al. Nurseled care vs. usual care for patients with atrial fibrillation: results of a randomized trial of integrated chronic care vs. routine clinical care in ambulatory patients with atrial fibrillation. Eur Heart J 2012;33:2692–9. 6. Carter L, Gardner M, Magee K, et al. An integrated management approach to atrial fibrillation. J Am Heart Assoc 2016;5. pii:e002950. 7. Stewart S, Ball J, Horowitz JD, et al. Standard Versus Atrial Fibrillation-Specific Management Strategy (SAFETY) to reduce recurrent admission and prolong survival: pragmatic, multicentre, randomised controlled trial. Lancet 2015;385: 775–84. 8. Wagner EH, Austin BT, Von Korff M. Organizing care for patients with chronic illness. Milbank Q 1996;74:511–44. 9. Carter AR, Gill D, Davies NM, et al. Understanding the consequences of education inequality on cardiovascular disease: Mendelian randomisation study. BMJ 2019;365:l1855. 10. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review.
13. Rienstra M, Hobbelt AH, Alings M, et al., for the RACE 3 Investigators. Targeted therapy of underlying conditions improves sinus rhythm maintenance in patients with persistent atrial fibrillation: results of the RACE 3 trial. Eur Heart J 2018;39:2987–96. 14. Abed HS, Wittert GA, Leong DP, et al. Effect of weight reduction and cardiometabolic risk factor management on symptom burden and severity in patients with atrial fibrillation: a randomized clinical trial. JAMA 2013;310:2050–60. 15. Pathak RK, Middeldorp ME, Meredith M, et al. Long-Term Effect of Goal-Directed Weight Management in an Atrial Fibrillation Cohort: A Long-Term Follow-Up Study (LEGACY). J Am Coll Cardiol 2015;65:2159–69. 16. Pathak RK, Middeldorp ME, Lau DH, et al. Aggressive risk factor reduction study for atrial fibrillation and implications for the outcome of ablation: the ARREST-AF cohort study. J Am Coll Cardiol 2014;64:2222–31. 17. Middeldorp ME, Pathak RK, Meredith M, et al. PREVEntion and regReSsive Effect of weight-loss and risk factor modification on Atrial Fibrillation: the REVERSE-AF study. Europace 2018;20: 1929–35. 18. Hendriks JM, Brooks AG, Rowett D, et al. Home-Based Education and Learning Program for Atrial Fibrillation: rationale and design of the HELP-AF Study. Can J Cardiol 2019;35:846–54. 19. Abernethy AP, Currow DC, Shelby-James T, et al. Delivery strategies to optimize resource utilization and performance status for patients
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11. Hesse BW, Nelson DE, Kreps GL, et al. Trust and sources of health information: the impact of the Internet and its implications for health care
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21. Sladek R, Woodman R, Effing T, et al. Health
22. Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns 2014;96:395–403. 23. Yiu A, Ng KK, Lee VW, Bajorek BV. Evaluating the understandability and actionability of Webbased education materials for patients taking non-vitamin K oral anticoagulants. Ther Innov Regul Sci 2019. 2168479019849878. 24. Bonner C, Patel P, Fajardo MA, Zhuang R, Trevena L. Online decision aids for primary cardiovascular disease prevention: systematic search, evaluation of quality and suitability for low health literacy patients. BMJ Open 2019;9:e025173. 25. Torpy JM, Lynm C, Glass RM. JAMA patient page: atrial fibrillation. JAMA 2010;303:380. 26. Shea JB, Sears SF. Cardiology patient pages: a patient’s guide to living with atrial fibrillation. Circulation 2008;117:e340–3. 27. Maccallum L, McGaw H, Meshkat N, et al. Use of an interdisciplinary, participatory design approach to develop a usable patient selfassessment tool in atrial fibrillation. Patient Prefer Adherence 2013;7:1139–46. 28. Man-Son-Hing M, Laupacis A, O’Connor AM, et al. Development of a decision aid for atrial fibrillation who are considering antithrombotic therapy. J Gen Intern Med 2000;15:723–30. 29. Fraenkel L, Street RL Jr., Fried TR. Development of a tool to improve the quality of decision making in atrial fibrillation. BMC Med Inform Decis Mak 2011;11:59. KEY WORDS atrial fibrillation, education, hospitalization, quality of life, resources
A PPE NDI X For supplemental material, please see the online version of this paper.
VOL. 5, NO. 10, 2019
CROWN COPYRIGHT ª 2019 PUBLISHED BY ELSEVIER ON BEHALF OF THE AMERICAN COLLEGE OF CARDIOLOGY FOUNDATION. ALL RIGHTS RESERVED.
TOPIC REVIEW
Patient-Centered Educational Resources for Atrial Fibrillation Celine Gallagher, PHD,a,b Debra Rowett, B PHARM,c,d Karin Nyfort-Hansen, B PHARM, GRAD DIP ED(HEALTH),a Shalini Simmons, RN,d Anthony G. Brooks, PHD,a John R. Moss, BEC, MSOCSCI, MBBS,e Melissa E. Middeldorp, PHD,a,b Jeroen M. Hendriks, PHD,a,b Tina Jones, PHD,f Rajiv Mahajan, MD, PHD,a,g Dennis H. Lau, MBBS, PHD,a,b Prashanthan Sanders, MBBS, PHDa,b
ABSTRACT Education has long been recognized as an important component of chronic condition management. Whereas education has been evaluated in atrial fibrillation (AF) populations as part of multifaceted interventions, it has never been tested as a single entity. The aim of this review is to describe the rationale for and role of education as part of comprehensive AF management. The development and use of educational material as part of the intervention of a randomized controlled trial, the HELP-AF (Home-Based Education and Learning Program in AF) study, will be described. This study was designed to determine the impact of a home-based structured educational program on outcomes in individuals with AF. An educational resource was developed to facilitate delivery of 4 key messages targeted at empowering individuals to self-manage their condition. The key messages focused on strategies for managing future AF episodes, the role of pharmacotherapy in the treatment of AF, the appropriate use of medicines to manage stroke risk and the role of cardiovascular risk factor management in AF. To support structured educational visiting, an educational booklet titled Living Well With Atrial Fibrillation (AF) was developed by a multidisciplinary team and was further refined following input from expert clinicians and patient interviews. Using a structured educational visiting approach, education was delivered by trained clinicians within the patient’s home. (J Am Coll Cardiol EP 2019;5:1101–14) Crown Copyright © 2019 Published by Elsevier on behalf of the American College of Cardiology Foundation. All rights reserved.
From the aCentre for Heart Rhythm Disorders, University of Adelaide, Adelaide, Australia; bDepartment of Cardiology, Royal Adelaide Hospital, Adelaide, Australia; cSchool of Pharmacy and Medical Sciences, University of South Australia, Adelaide, Australia; dDrug and Therapeutics Information Service, Southern Adelaide Local Health Network, Adelaide, Australia; eSchool of Public Health, The University of Adelaide, Adelaide, Australia; fCentral Adelaide Local Health Network, Adelaide, Australia; and the gDepartment of Cardiology, Lyell McEwin Health Service, Adelaide, Australia. This study was supported by a South Australian Cardiovascular Research Network Grant jointly funded by the National Heart Foundation and the Government of South Australia. The sponsor of the study is the University of Adelaide. Several of the authors are employees of the University of Adelaide. The sponsor has had no direct involvement in the design and conduct of the study, collection, management, analysis and interpretation of the data, preparation, review or approval of the manuscript; or the decision to submit the manuscript for publication. Dr. Gallagher is supported by fellowships from the University of Adelaide. Dr. Brooks has received honoraria from MicroPort; and accepted a continuing position at MicroPort CRM (formerly LivaNova Australia Pty Limited) subsequent to the design and commencement of the study. Dr. Middeldorp is supported by fellowships from the University of Adelaide. Dr. Hendriks has received lecture and/or consulting fees paid to his institution from Medtronic and Pfizer/BMS; and is supported by the Future Leader Fellowship from the National Heart Foundation. Dr. Mahajan has received lecture and/or consulting fees paid to his institution from Medtronic, Abbott, Pfizer, and Bayer; has served on the Advisory Board of Abbott; has received research funding paid to his institution from Medtronic, Abbott, and Bayer; and is supported by a fellowship from the National Health and Medical Research Council of Australia. Dr. Lau has received lecture and/or consulting fees paid to his institution from Abbott, Boehringer Ingelheim, Biotronik, Medtronic, and Pfizer; and is supported by the Robert J. Craig Lectureship from the University of Adelaide and a mid-career fellowship from the Hospital Research Foundation. Dr. Sanders has served on the Advisory Boards of Medtronic, Boston Scientific, Abbott Medical, Pacemate, and CathRx; has received research and/or lecture fees paid to his institution from
ISSN 2405-500X/$36.00
https://doi.org/10.1016/j.jacep.2019.08.007
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Patient Education and AF
ABBREVIATIONS AND ACRONYMS AF = atrial fibrillation
nificant morbidity and mortality (1).
Prevalence of the condition continues to
PC-SEV = patient-centered structured educational visiting
PEMAT = Patient Education Materials Assessment Tool
SEV = structured educational visiting
A
trial fibrillation (AF) is an emerging global epidemic associated with sig-
rise and hospitalizations, which are the main driver of cost, have demonstrated upward trends (2,3). Hospitalizations due to AF now outnumber those for both heart failure and myocardial infarction (4). Effective strategies are needed to mitigate these
trends. Alternative models of care delivery have demonstrated enhanced patient outcomes in AF, with education a component of these interventions (5–7). However, the role of personalized education, facilitated by the use of educational material, has not been evaluated.
EDUCATION AND HEALTH LITERACY Education to improve outcomes in chronic illness has long been advocated (8). A United Kingdom biobank study has demonstrated that each additional 3.6 years of education was associated with a 37% reduction in risk of coronary heart disease (9). Whereas approximately one-half of this risk was mediated through traditional risk factors, more than one-half of the protective effect of education remains unexplained (9). Such evidence supports the crucial role of welldesigned patient materials in facilitating delivery of
HIGHLIGHTS The prevalence of AF has grown exponentially in recent decades and is associated with high hospitalization burden and poor quality of life. Education has been advocated as a key component of chronic condition management, yet the role of education on outcomes in the AF population is poorly defined. Structured educational visiting, based on the principles of academic detailing, has been associated with improvements in physician prescribing practices with variable effects observed in influencing patient and caregiver outcomes. In the HELP-AF study, an educational resource was developed and used to support delivery of education by trained clinicians, using a patient-centered structured educational visiting approach, within the patient’s home. a level significantly above the fifth to sixth grade level which is generally recommended for patient-level material (12).
health education. Low health literacy has been associated with poor patient outcomes including hospi-
EDUCATION AS PART OF
talizations
STRUCTURED AF PROGRAMS
and
emergency
department
visits,
inability to comprehend medication and healthrelated information, inappropriate medication use,
Structured AF care programs, of which education has
poorer overall health, and higher mortality (10).
formed one component, have delivered varied results
Therefore, it is of paramount importance to have
(5–7). In a single-center randomized trial, protocol-
educational material that can cater to a broad range of
driven, software decision supported and nurse-
literacy levels. This is further confounded by the
delivered management resulted in a reduction in the
growing trend of using internet-based health infor-
composite endpoint of cardiovascular death and
mation of varying quality (11). A review of digital
hospitalizations (5). Another study recruited patients
health applications for AF highlighted significant
presenting to the emergency department and deliv-
variation in quality with validation of scientific con-
ered education by telephone, the opportunity to
tent occurring in <16% of cases (12). Furthermore,
attend 1 group based education session, followed by 1
average reading level of applications intended for
nurse-delivered and cardiologist-supported outpa-
non–health care professional use was 12.1 2.6 years,
tient
appointment,
resulted
in
a
Boston Scientific, Medtronic, Abbott Medical, and MicroPort; and has received a practitioner fellowship from the National Health and Medical Research Council and National Heart Foundation. All other authors have reported that they have no relationships relevant to the contents of this paper to disclose. The authors attest they are in compliance with human studies committees and animal welfare regulations of the authors’ institutions and Food and Drug Administration guidelines, including patient consent where appropriate. For more information, visit the JACC: Clinical Electrophysiology author instructions page. Manuscript received August 5, 2019; revised manuscript received August 19, 2019, accepted August 19, 2019.
reduction
in
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1103
Patient Education and AF
T A B L E 1 Examples of Educational Resources Reviewed for the HELP-AF Study
Resource
Source or Sponsor
Date of Publication
Description and Contents
Development and Validation Details (If Available)
1. Atrial fibrillation
JAMA Patient Page (25)
2010
Single page passive information in A4 handout format, small font with ECG illustration. Content includes ECG changes, symptoms, and treatment options.
Developed by JAMA, authors, and sources listed.
2. A patient’s guide to living with atrial fibrillation
Cardiology Patient Page (26)
2008
Passive information in A4 handout format, 4 pages. Small font, no illustrations. Content includes AF diagnosis, symptoms, treatment options, lifestyle adjustment, coping, and emotional health.
Developed by the AHA, authors, and references shown.
3. Living with a new oral Office of the Chief Medical Officer anticoagulant Department of Health (NOAC) information Government of Western Australia for patients
4. Warfarin booklet
SA Health Government of South Australia
5. Atrial fibrillation: Do you know your colors?
St. Michael’s Hospital and Centre for Innovation in Complex Care, University Health Network, Toronto, Canada (27)
6. Decision aid for stroke prevention in AF
Audio booklet (28)
7. Computer tool to Yale University School of Medicine improve the quality and other academic research of decision making in centers (29) atrial fibrillation
2013
Passive information in A4 handout format, 10 pages. Developed by the Western Australian Large font, minimal illustrations. Content includes Medication Safety Group.* indications for treatment, dosing instructions, other medicines, bleeding symptoms, prevention of bleeding, other side effects, comparison with warfarin.
2009
Personalized A5 booklet format developed as a Developed by the Pharmacy counseling aid, 30 pages. Large font, minimal Department, RAH and approved by the RAH Drug Committee. illustrations. Includes record pages for INR results, doses, date of next blood test, warfarin indications, Endorsed by the RAH Consumer brands, INR tests, dosing instructions, diet, alcohol, Advisory Council. short-term illness, other medicines, bleeding symptoms, and precautions.
2013
Interactive self-assessment and educational tool using Multidisciplinary iterative process traffic light assessment, 4 pages. Quiz questions incorporating patient input and focusing on stroke prevention and symptom control, human-centered design. designed to support interaction with physician.
2000
Decision support 32 page booklet with 20-min Evidence-based benefit and risk audiotape. Pictorial presentations of stroke and content developed in 4 versions for bleeding risk, potential pros and cons of warfarin and different levels of stroke risk by a aspirin, and personal worksheet to help patients multidisciplinary team and pilot clarify their values and preferences before meeting tested by physicians and patients. with their physician. Validated in an RCT.
2011
Designed to be used on a laptop in primary care Tool was designed to conform to the settings prior to medical consultation. Administered International Patient Decision Aids by a facilitator following a script. Uses pictographs to Standards. Development occurred provide individualized outcome data for stroke and in an iterative process after patient bleeding risk. feedback. Validated for feasibility and acceptability.
Examples of educational resources reviewed in 2013 to assist in developing the educational booklet for the HELP-AF study, showing variability in content, delivery, interactive and personalized features, and development methods. Resources on rows 1, 2, and 3 are passive information handouts with no personalized content; row 4 contains personalized information and records to assist anticoagulation selfmanagement; row 5 is interactive and designed to support patient engagement with their physician; row 6 is a decision support aid with audiotape to assist shared decision making and the only listed resource validated in an RCT; and row 7 is a computer-delivered decision support tool supervised by a trained facilitator. *Information is available at www.watag.org.au/wamsg. AF ¼ atrial fibrillation; AHA ¼ American Heart Association; ECG ¼ electrocardiogram; HELP-AF ¼ Home-Based Education and Learning Program for Atrial Fibrillation; INR ¼ international normalized ratio; JAMA ¼ Journal of the American Medical Association; RAH ¼ Royal Adelaide Hospital; RCT ¼ randomized controlled trial; SA ¼ South Australia.
the composite endpoint of death, cardiovascular
sessions and support provided in an ad hoc manner.
hospitalization, and AF-related emergency visits (6).
In this randomized trial, the composite endpoint of
However, despite education forming a key compo-
all-cause death or unplanned hospitalizations was not
nent, little detail is presented on the development
different, although the co-primary outcome of event-
and delivery of the educational components.
free days favored the interventional arm (7).
The SAFETY (Standard Versus Atrial Fibrillation-
The RACE 3 study targeted upstream interventions
Specific Management Strategy) study (7) delivered
that included protocol-driven pharmacotherapy and
education with the support of a booklet, as part of a
cardiac rehabilitation and resulted in a greater
broader management strategy, to individuals who
freedom from AF at 12 months (13). Whereas signifi-
had recently been hospitalized for AF. Although the
cant detail is provided concerning the cardiac reha-
booklet was published, the development and evalu-
bilitation program and counseling provided by a heart
ation of this was not described (7). The booklet con-
failure/rhythm nurse, the educational component of
tains an explanation and definition of AF, symptoms,
these interventions is not clear (13). Similarly, studies
diagnosis, possible complications, treatment options,
specifically targeting modification of risk factors have
signs requiring urgent hospital presentation, and
demonstrated a reduction in AF symptoms (14),
lifestyle modification (7). The content of education
improved maintenance of sinus rhythm (15,16), and
sessions was not standardized, but rather adapted to
reversal of the AF process (17). Whereas these studies
each individual’s perceived need, with ongoing
have provided detail concerning the counseling
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Patient Education and AF
provided, and have stated that written and verbal
of AF were developed (Central Illustration). These
advice was provided, specific detail concerning
were:
educational content is lacking. The impact of education alone in these interventions is difficult to ascertain for several reasons. First, the multifaceted interventions make it difficult
to
elucidate
the
contribution
of
each
element. Second, education was not delivered in a standardized manner. Finally, the delivery and nature of education provided in these studies has not been described in detail, or was undertaken in an ad hoc manner, making it difficult to replicate such in-
1. Take your AF medications as prescribed to reduce your symptoms and risk of stroke. 2. Stroke preventing medications can reduce your risk of stroke by up to 60% to 70%. 3. Reduce your risk of AF becoming more severe and risk of stroke by choosing a healthy lifestyle. 4. AF episodes are not usually medical emergencies. Follow your personal action plan during an AF episode with usual symptoms.
terventions and therefore limits the reproducibility
Message 1: Take your AF medications to reduce
and scalability of these educational components. The
y o u r s y m p t o m s a n d r i s k o f s t r o k e . Discussion
development of the intervention materials for the
focused on the role of medication adherence and
HELP-AF (Home-Based Education and Learning Pro-
persistence to manage AF symptoms and reduce
gram for AF) study is described below to facilitate
stroke risk. Each patient’s medication regimen was
translation into practice.
recorded prior to the home visit. At the first home visit, individuals were asked to show the educational visitor all their medications and each medicine was
DEVELOPMENT OF PATIENT-CENTRIC
discussed in relation to its role in managing AF or
EDUCATIONAL CONTENT FOR THE
associated
HELP-AF STUDY An educational resource was developed to support delivery of the intervention of the HELP-AF study. A literature review was performed exploring patient attitudes, knowledge, and beliefs about AF (Online Appendix). Additionally, a review of available patient resources for AF was undertaken (Table 1). With the support of a multidisciplinary team and patient input, key messages were developed to achieve the behavioral goals of the intervention. Concise educational materials were then developed to support the delivery of the key messages. The educational materials were tested during various stages of the development process on AF patients to ensure they were readable, understandable, and received feedback to facilitate modifications. The study version of the educational material was finalized only after approval from the multidisciplinary
development
comorbidities.
Over-the-counter
and
complementary medicines were also discussed with
team,
clinicians,
and
in-
dividuals with AF. IDENTIFIED GAPS IN PATIENT KNOWLEDGE. Several
information provided about possible known interactions with prescribed therapy. The role of rateand rhythm-controlling medications in managing symptoms was discussed. Individuals were encouraged to maintain an up-to-date list of their medicines and, if required, a medication list was provided to facilitate this. Message 2: Stroke preventing medications can reduce your risk of stroke by up to 60% to 7 0 % . The educational visitor and patient together calculated a CHADS2 (Congestive Heart Failure, Hypertension History, Age $75 Years, Diabetes Mellitus
History,
Stroke
or
Transient
Ischemic
Attack) score and information was conveyed about resultant stroke risk. To reinforce the role of anticoagulation, anticoagulants were referred to as “stroke preventers” in the booklet. Focus was on the role of appropriate anticoagulation in managing stroke risk. All patients with a CHADS2 score of 1 or more were advised to discuss the role of anticoagulation with their treating physicians. As the
gaps in knowledge were identified and addressed in
CHA 2DS2-VASc (Congestive Heart Failure, Hyper-
the development of the educational material. An
tension, Age $75 Years, Diabetes Mellitus, Prior
important theme related to patient uncertainty con-
Stroke or Transient Ischemic Attack or Thrombo-
cerning management of AF episodes. Key messages
embolism, Vascular Disease, Age 65 to 74 Years,
deemed most relevant to self-management of AF
Sex) score became more widely utilized, this score
were developed, with delivery of these messages
was also calculated to assist in determining and
supported by an illustrated educational booklet.
conveying stroke risk.
KEY MESSAGES FOR THE HELP-AF INTERVENTION. Four
importance of maintaining the international normal-
key messages deemed most relevant to management
ized ratio within the therapeutic range was discussed
If
individuals
were
prescribed
warfarin,
the
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C ENTR AL I LL U STRA T I O N Key Messages Delivered for the HELP-AF Intervention
Gallagher, C. et al. J Am Coll Cardiol EP. 2019;5(10):1101–14.
Delivery of the intervention for the HELP AF study was focused on delivery of 4 key messages designed to empower individuals to self monitor and manage their AF. The REST plan provided advice on how to manage future episodes of AF. AF ¼ atrial fibrillation; ED ¼ emergency department; HELP-AF ¼ Home-Based Education and Learning Program for Atrial Fibrillation; REST ¼ Rest, Estimate pulse, See action plan, Telephone.
and barriers to achieving this were reviewed. A re-
A baseline profile of each patient’s cardiovascular risk
view of diet and medication interactions was un-
factor profile was undertaken prior to the home visit.
dertaken. Patients were encouraged to maintain a
Based on this and dependent on patient need, a tar-
written record of their international normalized ratio
geted discussion with practical steps concerning
results and a record booklet was provided if neces-
weight-loss, dietary modification, alcohol reduction,
sary. Those prescribed direct acting oral anticoagu-
improving exercise capacity, smoking cessation,
lants were given information specific to their agent.
improving glycemic control and addressing dyslipi-
Patients were encouraged to ensure they had regular
demia was undertaken.
checks with treating physicians to address any
Message 4: AF episodes are not usually medical
bleeding risks and ensure the appropriateness of
emergencies. Follow your personal action plan
drug dosing.
d u r i n g a n A F e p i s o d e w i t h u s u a l s y m p t o m s . The
Message 3: You can reduce your risk of AF
final message was developed in response to a patient-
becoming more severe and risk of stroke by
identified gap in knowledge and focused on strategies
c h o o s i n g a h e a l t h y l i f e s t y l e . This emphasized the
for managing future AF episodes. The aim of this
role of cardiovascular risk factor management in AF.
message was to convey that episodes of AF with
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F I G U R E 1 Pulse Palpation
Instruction on pulse palpation. AF ¼ atrial fibrillation.
“usual symptoms” are not medical emergencies and
individualized
do not generally require hospital presentation. A
treating physicians.
written
advice
from
their
discussion of each patient’s usual AF symptoms
Telephone: this was a 24-h telephone line that
occurred in addition to teaching how to palpate the
patients could call for advice for managing
pulse to assist in recognition of episodes (Figure 1).
their AF episode if they were unsure despite
Each patient was given an action plan to develop with
following the first 3 steps of their plan. This
their treating physician to assist in managing their AF
telephone line was held by an on-call cardiac
episodes. This was provided on an A4 sheet of paper
electrophysiology team.
and wallet card (Figure 2). The plan used the acronym The intention of the REST plan was not for in-
REST whereby: R: the patient was encouraged to rest and recognize any potential triggers.
this
was
the
personalized
component of the plan where patients were encouraged treating
to
follow
physicians
advice
from
their
concerning
steps
they
should take when AF episodes recur. Specific
advice
was
advice provided by treating physicians could be employed to manage AF episodes with usual symp-
was an AF episode. plan:
symptomatology, but rather to highlight that an episode of AF with usual symptoms and appropriate
Estimate pulse: this was done to confirm that this See action
dividuals to avoid hospitalizations regardless of
not
provided
by
the
toms. Participants were advised to seek tailored advice from their treating clinicians, as this would include discussion of “usual symptoms” and scenarios that may require hospital presentation. Additionally, comorbid status and literacy levels could also be taken in to account, with advice tailored to each individual.
educational visitors for this component of
UTILITY OF EDUCATIONAL RESOURCE. The educa-
the plan, but advice already received was
tional material was formatted as a graphical aid in the
discussed.
form of an illustrated booklet titled Living Well With
Patients were
asked to
obtain
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Patient Education and AF
F I G U R E 2 REST Plan for Managing AF Episodes
The REST plan for management of AF episodes. AF ¼ atrial fibrillation; GP ¼ general practitioner; HELP-AF ¼ Home-Based Education and Learning Program for Atrial Fibrillation; REST ¼ Rest, Estimate pulse, See action plan, Telephone.
Atrial Fibrillation (AF) (Online Appendix). The pur-
the active voice, use of direct and specific actionable
pose of this resource was to support messages deliv-
steps, reinforcement of key messages with questions,
ered
ensure
avoidance of jargon, larger font, simple layout, short
consistency of key messages between visitors. The
by
the
educational
visitor
and
sentences and paragraphs, plenty of white space on
booklet developed for the HELP-AF study differed
the page, double spacing, left justification, and nar-
from other patient educational resources in that fig-
row or multiple columns to limit line length. In
ures were designed as graphical aids to support
addition, words no longer than 3 syllables were used
interaction with the patient and reinforce key mes-
wherever possible. In accordance with these principles,
sages, underpinned by social marketing principles.
the educational booklet developed for the study was
The figures were chosen to reflect a broad range of
suitable for a broad range of literacy levels. In this regard
demographics to connect to a wide range of in-
the booklet developed for this study is thus unique in
dividuals. The booklet content centered around the
comparison to other patient resources specific to AF.
key messages, with other content used to enhance patients’ understanding of their condition and pro-
CONTENT OF THE EDUCATIONAL RESOURCE
vide background information. Principles outlined by the U.S. National Institute
BACKGROUND
INFORMATION. The
educational
on Aging for making print materials senior friendly
booklet contained extensive background information
were used (Online Appendix). This included use of
presented in simple language. This included a
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Patient Education and AF
F I G U R E 3 Common AF Symptoms
Common AF symptoms represented in figure form. AF ¼ atrial fibrillation.
discussion of AF pathophysiology supported by a di-
pharmacotherapy including rate and rhythm medi-
agram
cations
and
electrocardiogram
tracing.
Common
and
oral
anticoagulation.
The
booklet
symptoms experienced with AF were presented in
included a table to allow estimation of stroke risk
written and figure form (Figure 3). Causes and types
using the CHADS 2 score, allowing discussion of
of AF were also discussed supported by a basic
appropriate use of anticoagulation according to
explanation of AF. Common triggers for paroxysmal
guidelines current at the time (Figure 5). The impor-
episodes were also identified.
tance of re-evaluation of this score over time was
AF COMPLICATIONS. Common complications arising
from AF were documented in written and pictorial form. Risks of increased stroke (Figure 4), heart failure, syncope, and falls was discussed with strategies to avoid or minimize risk of development of these complications.
emphasized. LIFESTYLE
MANAGEMENT. A
review of common
cardiovascular risk factors was undertaken in addition to strategies to address each factor. Practical steps were summarized in addition to contact details of external organizations that may be able to assist
TREATMENT FOR AF. An extensive review of treat-
patients in improving their cardiovascular risk factor
ment for AF was provided, with a focus on use of
profile.
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Patient Education and AF
F I G U R E 4 Stroke Risk in AF
Pictorial representation of increased risk of stroke in atrial fibrillation (AF).
MEDICATIONS AND GLOSSARY. An extensive sum-
The booklet was designed to be used interactively
mary table of commonly used AF medications was
during structured educational visiting (SEV) and to
provided including generic and brand names, reasons
empower individuals to self-manage their condition
for use, mode of action, and common side effects. A
through several practical steps. A summary of these
glossary of terms relevant to AF with definitions in
steps was listed in both the educational booklet and,
simple language was also provided.
in brief on the AF action plan, to act as a prompt for
QUESTIONS FOR MY DOCTOR. A 2-page section was
dedicated to a list of questions that patients may
individuals (Figure 7).
THE HELP-AF INTERVENTION
wish to discuss with their treating physicians. During discussion with the patient, the educator
THE
highlighted questions that were most relevant for
HELP-AF study has been previously described (18). In
the individual. Space was provided for clinicians to
brief, this was a multicenter randomized controlled
provide
trial in which 627 individuals presenting to the
written
(Figure 6).
answers
to
these
questions
HELP-AF
STUDY. The
methodology for the
emergency departments of 6 hospitals in Adelaide,
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Patient Education and AF
F I G U R E 5 Calculation and Monitoring of CHADS 2 Score
Table for participants to record their CHADS score. CHADS2 ¼ Congestive Heart Failure, Hypertension History, Age $75 Years, Diabetes Mellitus History, Stroke or Transient Ischemic Attack Symptoms Previously; other abbreviations as in Figures 1 and 2.
South Australia, primarily due to AF, were recruited.
RATIONALE FOR SEV
Patients were randomized 1:1 to the HELP-AF intervention or usual care. Follow-up occurred over a 24-
SEV is based on the principles of academic detailing
month period.
and social marketing. Academic detailing is also
The study was approved by the Human Research
referred to as “educational outreach” and “educa-
Ethics Committees of each participating institution.
tional visiting” with the term “academic detailing”
The study is registered at the Australian New Zealand
becoming widely adopted following an early study by
Clinical Trials Registry (ACTRN12611000607976).
Avorn and Soumerai (19). Academic detailing has
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F I G U R E 6 Prompt Questions for Patients to Discuss With Treating Practitioners
Abbreviations as in Figures 1, 2, and 5.
Gallagher et al. Patient Education and AF
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F I G U R E 7 Actionable Steps for AF Self-Management
Actionable steps study participants could follow to manage their AF. Abbreviations as in Figures 1 and 2.
been influential in changing prescribing habits with
understanding of the patient’s values, needs, and
evidence that this approach may be translatable to
preferences to influence behaviors.
clinician-patient interactions (20). However, SEV has never been tested in an AF population.
Influencing patient behaviors using educational outreach visiting is a relatively novel concept that has
In addition to treatment as per usual care path-
been tested in a limited number of studies. In a
ways, the intervention group in the HELP-AF study
palliative care trial, the use of educational outreach
received 2 home visits using a SEV approach. Delivery
visiting delivered over 2 home visits by palliative care
of key messages is constructed around areas of
nurses at the point of functional decline, resulted in
behavior change to influence outcomes. An exchange
better performance status but did not have an impact
of information occurs throughout the visit with the
on pain levels or hospitalizations (19). In a trial of
educational
educational outreach visiting for carers of individuals
visitor
skilled
in
developing
an
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Patient Education and AF
with advanced respiratory disease using long-term
QUALITY ASSURANCE. To ensure standardization of
oxygen therapy, 2 home visits delivered by nurses
the SEV, educational visitors completed a report for
6 weeks apart resulted in improved quality of life for
each visit, including the time spent discussing each
patients but was associated with higher mortality in
key message and areas of patient interest. Weekly
the intervention group compared with the control
meetings were held for the study team to assess any
group (21). Given the impact of educational outreach
issues related to delivery of the intervention. Four
visiting on improving clinician-centered outcomes,
meetings were held throughout the delivery of the
further studies evaluating the impact of this approach
interventional phase of the study to ensure fidelity by
in patient-based interventions are warranted.
each of the clinicians to the intervention. A random review of home visit reports undertaken by each
KEY COMPONENTS OF THE INTERVENTION. Two key
clinician was reviewed to ensure consistency in
elements underpinned delivery of the intervention: 1)
intervention delivery.
clinical characterization of the patient; and 2) patientcentered structured educational visiting (PC-SEV). CLINICAL
CHARACTERIZATION. This
was under-
taken via a medical record review of each patient and telephone
discussions
between
the
visiting
researcher clinician and patient prior to the first home visit. Extensive information was collected including:
QUALITY ASSESSMENT OF PATIENT EDUCATIONAL RESOURCES To address variability in patient educational information, several tools have been developed. The Patient Education Materials Assessment Tool (PEMAT) provides a structured approach to assessing the understandability and actionability of educational
Management and events leading up to the index
material (22). A recently published review of 35
presentation for AF and any scheduled follow-up
Internet-based patient resources for anticoagulants
care;
demonstrated that the majority of patient resources
AF history including when the condition was diagnosed,
usual
symptomatology,
prior
and
identified on popular search engines rated highly on understandability but performed poorly on actionability according to the PEMAT guidelines (23). Lack
planned interventions; Sociodemographic history including current living
of actionability is a recurring theme through other
conditions, social network, and education level;
patient resource reviews. A review of 25 decision
Comorbid conditions;
support aids for primary cardiovascular disease pre-
Current medications;
vention demonstrated high scores on the PEMAT for
Previously trialed medications;
understandability but performed poorly for action-
Cardiovascular risk factor profile;
ability (24). The lack of actionability inherent in many
Current beliefs and knowledge about AF and its
patient resources to date has been addressed in the current study through specific and explicit steps in-
management. This pre–home visit contact assisted in establishing early rapport between the educational visitor and patient
and
formed
a
basis
for
targeting
key
behaviors.
dividuals can take to self-manage their condition. In the new era of personalized medicine, the HELPAF intervention provides a novel approach for patient-centered education for AF. The intervention is unique in its approach to education by combining
PC-SEV. Two PC-SEV were the central component of
the intervention in the HELP-AF study. The first visit
clinical characterization and home-based SEV provided by clinicians, supported by a booklet with
occurred 1 to 2 weeks following enrolment with the
actionable steps patients can take to self-manage
second occurring 6 weeks later.
their condition. The HELP-AF study will provide
PERSONNEL. The
intervention was delivered by
unique insights into this novel approach to person-
either a pharmacist or nurse. Clinicians delivering the
alized education and empowerment of individuals
intervention attended a 3-day training session from
with AF.
the Drug and Therapeutics Information Service, Adelaide, Australia, on the principles of academic detail-
CONCLUSIONS
ing and the application of PC-SEV. A video-recorded mock home visit was performed at this training
Current models of care delivery are inadequate in
session to provide feedback to the educational visitor
meeting the needs of the AF population with
on areas for improvement. Additionally, clinicians
exponential increases in hospitalizations. Structured
were upskilled in the current management of AF.
care programs have demonstrated enhanced patient
1113
1114
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Patient Education and AF
outcomes in AF populations, but the role of edu-
structured educational visiting, on clinically rele-
cation
a
vant outcomes in a contemporary cohort of patients
pivotal component of chronic condition manage-
with AF. This study will provide the most compre-
ment, the development and validation of educa-
hensive evidence to date concerning the efficacy of
tional resources for AF has not been well described.
home-based patient-centered structured education
Several studies have utilized educational resources
in AF.
is
unclear.
Whereas
education
forms
as a component of multifaceted interventions, but the replication of such interventions is limited
ADDRESS FOR CORRESPONDENCE: Dr. Prashanthan
due to a lack of detail concerning development
Sanders, Centre for Heart Rhythm Disorders, Depart-
and delivery of this education. The aim of the
ment of Cardiology, Royal Adelaide Hospital, Port
HELP-AF study is to evaluate the role of a novel
Road, Adelaide, South Australia 5000, Australia.
approach,
E-mail: [email protected].
using
clinical
characterization
and
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A PPE NDI X For supplemental material, please see the online version of this paper.