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. Author manuscript; available in PMC: 2015 Sep 1.
Published in final edited form as: Seizure. 2014 Apr 28;23(8):592–597. doi: 10.1016/j.seizure.2014.04.010

Patient-Centered Outcomes in Older Adults with Epilepsy

Wendy R Miller 1
PMCID: PMC4440332  NIHMSID: NIHMS680500  PMID: 24838071

Abstract

Purpose

Older adults have the highest incidence of new-onset epilepsy, yet there is a lack of self-management interventions to ensure that this population achieves desirable outcomes. In order to develop patient-centered interventions for older adults with epilepsy, self-management outcomes of importance to these patients must first be explored. The purpose of this study was to describe what outcomes older adults diagnosed with epilepsy late in life hope to achieve in self-managing their condition.

Method

Qualitative description was used. 20 older adults took part in semi-structured interviews. Data were analyzed using conventional content analysis.

Results

Six themes emerged--Maintaining Normalcy, We Want to be Involved, Well-Equipped, Seizure Freedom, Fitting Epilepsy in with Other Conditions, Incongruence with Provider Goals.

Conclusion

These results add to the extant literature, and provide knowledge on which patient-centered epilepsy self-management interventions can be developed. In addition, these results can inform the development of a patient-centered outcome measure for older adults with epilepsy. Such a measure could be used in conjunction with existing measures related to disease status (seizure frequency, etc.) to ensure that outcomes pertinent to both patients and providers are targeted and measured.

1. Introduction

Globally, older adults have the highest incidence of new-onset epilepsy. In the United States (U.S.), 27% of annual epilepsy diagnoses involve those age 60 years and older.1 European-based studies have also revealed that older adults are most affected by new-onset epilepsy.2 The increasing life expectancy in developed countries ensures that the incidence of epilepsy in older adults will continue to escalate.1,3

Persons with epilepsy are charged with self-managing their condition, and thus contribute to attainment of epilepsy-associated outcomes;4-6 the care of those with epilepsy must include preparation for epilepsy self-management. Epilepsy self-management refers to an interactive phenomenon in which patients continually evaluate their perceived health status (which comprises how they feel emotionally and physically and how they are able to function on a daily basis) and implement a variety of behaviors to manage their medications/treatments, safety, seizures, physical and emotional comfort, functional status, and other factors depending on their current perceived health.5 Facilitating effective self-management is particularly important in older adults with epilepsy, including those who develop the condition late in life, given that their self-management is complicated by the existence of multiple comorbid conditions, polypharmacy, and age-related physiological and cognitive changes.7,8

Epilepsy self-management interventions aimed at improving outcomes for older adults with epilepsy, including those diagnosed in older adulthood, are not available.9 A review of the literature reveals no published studies pertaining to the development or testing of epilepsy self-management interventions for older adults. In addition, relatively little research apart from that relating to medical treatment of the condition has been done with this population. There is a particular dearth of research involving older adults who have developed epilepsy late in life—the population most affected by new-onset epilepsy.

The published literature reflects no inquiries into the self-management process or outcomes of older adults with epilepsy. There is a need to generate such knowledge given the Institute of Medicine’s10 recommendation that programs targeting patient-centered outcomes to improve quality of life (QoL) in persons with epilepsy should be developed. The American Geriatrics Society11 has also advocated for the use of patient-centered programs for older adults with multiple co-morbidities. Such programs cannot be developed for a population highly affected by epilepsy—older adults—without descriptive knowledge of their self-management experiences and desired outcomes. Additionally, such knowledge can be used to render existing interventions designed for younger adults with epilepsy, or even those designed for persons with other chronic diseases, useful to older adults with epilepsy.

Knowledge that exists regarding the epilepsy self-management of younger adults may not be wholly applicable to older adults given the uniqueness of this population in terms of epilepsy etiologies, clinical presentation, prognosis, and the common presence of multiple comorbidities, polypharmacy, and age-related cognitive and metabolic changes in older persons with epilepsy.8 Therefore, epilepsy self-management interventions that have been developed based on research involving mostly younger adults may not be as pertinent to or effective for older adults managing epilepsy; moreover, effective epilepsy self-management interventions, even for younger adults, are sparse.12 Recently, however, WebEase (Web Epilepsy Awareness, Support, and Education), a web-based epilepsy self-management intervention, has been shown to affect some patient outcomes, such as one measure of medication adherence, social support, sleep quality,13 and self-efficacy13,14 in adults with epilepsy. WebEASE was designed for adults, and was developed based on social cognitive theory, motivational interviewing, and the Transtheoretical Model of Behavior Change. The goal of WebEASE is to improve medication, stress, and sleep management.14

While WebEASE is a promising intervention for adults with epilepsy, it does not address the specific need for an outcome-improving intervention for older adults with epilepsy, and particularly those who are beginning to manage the condition at or after age 60. First, WebEase is not tailored to the needs of older adults with epilepsy, including those diagnosed late in life. Specific contextual tailoring of self-management interventions has been shown to be important.15 Second, WebEase has been tested with older adults on a limited basis. In both trials in which the intervention was tested, the mean age of participants was much younger than age 60—37.5 years in one study (N=35)13 and 40.87 years in one study (N=148).14 While the authors reported that older adults were included in the samples via reporting an age range of participants—20-63 years13 and 18-77 years14—the number of older adults who took part in these studies, and how many of those older adults had been diagnosed with epilepsy in older adulthood, is unknown. Third, the outcomes targeted by WebEase are somewhat limited and may not capture some outcomes important to older adults.

In order to develop data-based epilepsy self-management interventions for older adults with epilepsy, and to tailor existing interventions (such as WebEase) to this population, descriptive research is needed. The Patient Centered Outcomes Research Institute16 has espoused the notion that behavioral interventions must impact outcomes that matter to patients—patient-centered outcomes. Thus, it is of particular importance that the outcomes important and relevant to older adults self-managing epilepsy are revealed. The purpose of this study was to describe what outcomes older adults diagnosed with epilepsy late in life hope to achieve in self-managing their condition. This purpose was pursued using a qualitative descriptive method.

2. Methods

2.1 Procedures and data collection

Approval of the study was granted from the appropriate Institutional Review Board. Participants were recruited from a regional neurology practice serving urban and rural areas in the Midwestern region of the U.S. The following inclusion criteria were used: 1) age 60 or older, 2) diagnosis of epilepsy at or after age 60, 3) diagnosis of epilepsy six months or more prior to recruitment, 4) community-dwelling, 5) prescription of at least one anti-epileptic drug (AED), and 6) able to speak and read English. Patients meeting the main inclusion criteria of being 60 or older and having been diagnosed with epilepsy at or after that time were identified by neurologists. Recruitment letters informing patients of the study were signed by neurologists and mailed to potential participants. The letters also informed potential participants that a researcher would be contacting them about the study.

Detailed recruitment activities have been reported elsewhere.17 Fifteen participants were recruited. In addition, five participants whom had been recruited for a pilot version of the study several months earlier were also included in this study, bringing the total number of participants to 20.

Data collection took place via self-report using a face-to-face, audio-recorded interview with each participant. Interviews were conducted from February through August of 2011. Interviews of 19 participants were conducted in participants„ homes, while one participant„s interview was conducted in a meeting room in a library. Prior to interviews, demographic data were collected. Interviews were initiated using the following question, which was aimed at eliciting self-management outcomes pertinent and important to participants: “What do you hope to achieve in self-managing your epilepsy?”. Probes, such as “What outcomes are most important to you?” and conversational interviewing were used in all interviews based on responses. Interviews ranged from 40 minutes to two hours. Data collection continued until informational redundancy was met, which occurred after the 20th interview.

2.2 Data analysis

Descriptive statistics were employed to analyze demographic data. Interviews were transcribed and analyzed via conventional content analysis.18 Analysis of transcripts occurred concurrently with data collection. Using Sandelowski’s19 guidelines as a starting point for analysis, the author and an additional researcher individually generated codes related to self-management outcomes important and relevant to participants. Each researcher yielded a coding scheme, and both schemes were compared. Any discrepancies were discussed, and changes were made to the scheme until agreement was reached. The scheme was tested against all data. Finally, codes were divided into clusters,19 and themes were developed using a data matrix.20

3. Results

3.1 Sample

Twelve (60%) participants were female, and 8 (40%) were male. Nineteen (95%) participants were Caucasian, and 1 (15%) was African American. The age range was 60-80 years, with a mean of 70 years. Table 1 details demographic characteristics of the sample.

Table 1.

Demographic Characteristics. N=20 Variable

Variable Mean Range
Age (in years) 70 60-80
Years Since Diagnosis 4.1 0.5-10
Education (in years) 13.5 7-20
Co-Morbidities in Addition to Epilepsy 2.5 1-4
Mini Mental Status Exam Scores 27.73 (SD 1.67) 24-30
 
Race

  • Caucasian (n=19)

  • African American (n=1)

Gender

  • Male (n=8)

  • Female (n=12)

Income (annual)

  • <$20,000 (n=4)

  • $21,000-$40,000 (n=3)

  • $41,000-$60,000 (n=6)

  • $61,000-$100,000 (n=5)

  • >$100,000 (n=2)

Employment

  • Working full-time (n=2)

  • Working part-time (n=3)

  • Retired (n=14)

  • Disability (n=1)

Relationship Status

  • Married (n=14)

  • Single (includes divorced/widowed) (n=4)

  • Living with significant other (n=2)

Seizure Frequency

  • Daily (n=1)

  • Weekly (n=2)

  • Monthly (n=4)

  • Bi-Monthly (n=8)

  • Bi-Annually (n=4)

  • Fewer than one per year (n=1)

Co-Morbidities

  • Hypertension (n=16)

  • Arthritis (n=14)

  • Diabetes (n=9)

  • Chronic Obstructive Pulmonary Disease (n=6)

  • Post-stroke (n=5)

  • Post-myocardial infarction (n=4)

  • Cancer (n=4)

  • Heart arrhythmia (n=4)

  • Renal disease (n=3)

  • Depression (n=3)

  • Peripheral vascular disease (n=2)

  • Parkinson's disease (n=1)

  • Asthma (n=1)

  • Multiple Sclerosis (n=1)
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3.2 Themes

Six main themes, one including sub-themes, emerged as representative of outcomes of epilepsy self-management particularly important to participants. An additional theme related to participants’ perceptions of their epilepsy care providers’ goals of epilepsy management also emerged. All themes are presented in Table 2.

Table 2.

Emerging Themes. N=20

Theme Description Number of Participants
Reporting
Maintaining Normalcy

  • Maintaining roles

  • Health

  • Life Satisfaction

 Participants’ ability to carry on
with their normal lives.		 n=20
We Want to be Involved Participants’ desire to be
actively involved in treatment
decisions regarding their
epilepsy.		 n=15
Well-Equipped Participants’ desire to be
empowered to explain their
condition to others, and to
manage it effectively.		 n=8
Seizure Freedom Participants’ desire to have as
few seizures as possible, with
complete seizure freedom
being the goal.		 n=5
Fitting Epilepsy in with Other
Conditions		 Participants’ ability to integrate
management of epilepsy with
that of other chronic conditions.		 n=15
Incongruence with Provider
Goals		 A perceived difference
between self-management
goals of participants, and those
of their providers.		 n=17
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3.2.1. Theme 1: Maintaining Normalcy

The most predominant theme emerging was that of Maintaining Normalcy. All 20 participants indicated that they wanted their epilepsy self-management to allow them to carry on with their normal lives. Normalcy was different for every participant, but the goal was the same for each—live a normal life in spite of having epilepsy.

  • 1. “The most important thing to me is that it doesn’t interfere with my life. Let’s figure something out…so that I can build stuff in my shed…take my grandson fishing. I want to be a normal retired guy.”

Further analysis led to partitioning of data into sub-themes of Maintaining Normalcy. It was noted that, when discussing the desire to continue normal lives in the context of having epilepsy, participants’ comments were related to maintaining normalcy in three distinct areas: maintaining roles (family, social, work/volunteer), health (symptoms and physical functioning), and life satisfaction.

Maintaining roles

All participants indicated that a major goal in self-managing epilepsy was to maintain their familial, social, and work/volunteer roles. For many (n=12), maintaining a normal grandparenting role was of importance.

  • 2. “I want to babysit my grandbaby unsupervised…to make sure [epilepsy] doesn’t stop me from being nana to my grandkids.”

Others spoke of a desire to maintain normalcy as a spouse (n=10). Some expressed trying to manage epilepsy in a way that would allow them to preserve roles as husbands or wives, while others spoke of desiring to continue caring for an ailing spouse.

  • 3. “I’ve always been the one who keeps up the house. I don’t want my wife having to take that over because of seizures. I guess it’s about pride.”

  • 4. “[My husband] is not well. I want to keep him at home. That’s what we said on our wedding day. So I have to get [the epilepsy] figured out to keep promises.”

Many participants (n=8) disclosed that a key goal in self-managing epilepsy is to retain roles as parents, particularly in reference to assisting adult children with care of grandchildren, or via financial support.

  • 5. “I keep my grandsons every weekend. A lot of what I do with my epilepsy is focused on making sure those weekends happen.”

  • 6. “I have worked to leave an inheritance…to pay for my grandchildren’s colleges…I feel like [having epilepsy] threatens that, so I need to make sure all our money isn’t lost dealing with this.”

Nine participants spoke of a desire to maintain normal relationships with friends, particularly regarding the ability to continue participating in activities involving those friends.

  • 7. “My social life…is ruined. I desperately want to know how to mix being the friend I used to be with keeping the condition under control.”

Physical and emotional functioning

Nineteen participants explained that goals of their epilepsy self-management activities include maintaining physical functioning and managing physical and emotional symptoms. Twelve participants explained that they strive to regain or maintain the physical functioning they had before being diagnosed with epilepsy.

  • 8. “My main goal is to be able to do the things I need to…make my own breakfast, haul the trash…those things are hard to come by now.”

  • 9. “The fatigue is really hard for me…I am trying to sort out how to manage it so I can physically do what I need to do every day of my life…like walk down my half mile driveway to the mailbox.”

Many participants (n=17) shared that they hoped to manage or diminish the existence of a variety of physical, cognitive, and emotional symptoms—those related to epilepsy, specific seizure events, and AED use.

  • 10. “Since [epilepsy] I am so exhausted. I try to time medication to make sure I can stay awake… want to not be so tired.”

  • 11. “I have a hard time with memory and concentration. I really want to get back to being able to sit down and read a novel and not lose everything all the time.”

  • 12. “For me, the depression…and anxiety that have come with this have been the most debilitating.”

Life satisfaction

Eighteen participants indicated that they wanted to manage their epilepsy in a way that would allow them to be generally happy, or satisfied, with their lives. Some strived to regain this satisfaction, while others aimed to find satisfaction in their new epilepsy-related circumstances.

  • 13. “We just want everything to flow like it used to…life is still interrupted by my condition. It’s difficult to get into a groove of happiness.”

  • 14. “This is my new normal…and I am attempting to change expectations…so I can be happy again.”

3.2.2. Theme 2: We Want to Be Involved

A large portion of the participants (n = 15) indicated they wanted to become more involved in the treatment of their epilepsy. Participants expressed a desire to build relationships with care providers that would allow them to provide input regarding treatments. At the time of their interviews, these participants felt they lacked control over their treatment.

  • 15. “I want more to do with it…. I want to be able to have some kind of say in what’s going on, or at least have it explained to me. I don’t know what questions to ask them…but I can tell them what’s bothering me and then we can talk about how to fix that.”

  • 16. “It’s kinda like this is happening to me. The…doctors are deciding all the things and I need to feel part of what we are doing.”

3.3.3. Theme 3: Well-Equipped

Nearly half the sample (n = 8) shared that they hoped that, through managing their epilepsy, they would become well-equipped to handle the disorder more effectively and more independently. Five of these participants spoke specifically of wanting to feel equipped to handle epilepsy-related situations.

  • 17. “I want to know what to do [about my epilepsy] without having to ask someone or think about it.”

  • 18. “It’s such a weird disease that I don’t always know…and I want there to be no second guesses. I just want to be able to know what we should do.”

Others expressed a desire to know, through their management, more about epilepsy so that they could explain it to their family and friends.

  • 19. “I want to know it inside and out…. people think it’s a mental illness. So I should be an expert on it.”

  • 20. “It’s funny…I feel like I know a lot more about other diseases that my friends have…cancer, all those things. I don’t really know how to explain what I have.”

3.3.4. Theme 4: Seizure Freedom

Five participants explicitly mentioned wanting to be seizure-free. When participants mentioned seizure freedom, it was in the context of maintaining normalcy.

  • 21. “I don’t want any more seizures…so I can get back to working part-time and back to doing what I want.”

  • 22. “Even though seizures aren’t the bad part…I don’t see or remember them, if I didn’t have them life would be easier.”

3.3.5. Theme 5: Fitting Epilepsy in with Other Conditions

None of the participants were managing epilepsy in isolation—all had at least one co-morbidity. Fifteen shared that they hoped to achieve a “fitting in” of epilepsy with their other conditions.

  • 23. “I have arthritis, heart failure, diabetes. Now this is another. I really want… to figure out how to manage all my problems so I’m not putting out fires. I need a system that runs smooth.”

3.3.6. Theme 6: Incongruence with Provider Goals

Most participants (n=17) reported that their and their care providers’ (neurologist, epileptologist, or advanced practice nurse) epilepsy management goals are incongruent.

  • 24. “It is obvious to us that [my physician’s] main focus is amount of seizures. I get that…but…even though he is a caring doctor I don’t think we see eye to eye on what the goals are.”

  • 25. “The seizures are the least bad part…that is all my doctor talks about. That and the meds, are you taking them? There’s a lot more to it and I think I’m more concerned with my normal life, and she is more concerned with my seizure diary.”

All 17 of these participants also reported that they felt their providers were not aware of their personal goals in self-managing epilepsy, and 14 shared that they do not feel comfortable initiating a discussion about their personal self-management goals with providers.

  • 26. “No, no, I don’t think [my physician] knows what I want…in terms of accomplishing things we have talked about. I think it is not on his radar because he’s a very good doctor…and he’s focused on the medicines.”

  • 27. “Is he aware of what I want to accomplish? I would say no…the visits move very fast.”

  • 28. “Oh, [my physician] is completely unaware…and that’s my fault in some ways. I’m 72 years old. I grew up never questioning a doctor.”

4. Discussion

In accord with the Institute of Medicine’s10 recommendation that interventions for persons with epilepsy target patient-centered outcomes, and the call of the American Geriatrics Society11 for the inclusion of patient preferences in the development of interventions aimed at older adults with multiple co-morbidities, the results of this study have elucidated outcomes that older adults with epilepsy seek to accomplish in self-managing their disease; they also suggest that there may be a rift between outcomes of importance to older adults and those focused on by epilepsy care providers, and that older adults may not feel comfortable addressing incongruities with providers. These findings have important implications for the development of new (or tailoring of existing) patient-centered epilepsy self-management interventions, as well as implications for practice and further research.

The most predominant outcome of interest to participants was maintaining normalcy in spite of having epilepsy. In particular, they reported striving toward normalcy in the areas of maintaining roles, physical and emotional functioning, and life satisfaction. Conceptually, these areas coincide with what Lazarus and Folkman21 termed adaptational outcomes, which they partitioned as social functioning (ability to carry out role-specific responsibilities and engage socially), somatic health (ability to function physically and emotionally), and morale (overall happiness). These findings are somewhat in alignment with the epilepsy self-management framework put forth by Unger and Buelow,5 in which it was purported that adults newly-diagnosed with epilepsy engage in constant personal evaluations of emotional and physical comfort (“how I’m feeling”) and functional ability (“how I’m doing”) in order to drive self-management actions and behaviors. That is, epilepsy self-management is an ongoing process of which physical comfort and functional ability are outcomes, but also driving forces.5 In contrast to findings rendered by the Unger and Buelow5 study, current results provide a context and details regarding ways in which older adults desire to improve outcomes in each area of normalcy. The avid desire to babysit grandchildren, for example, is a goal likely unique to this population. Interventions for older adults with epilepsy, as well as clinic and bedside education and counseling practices with this population, can be informed by such in-depth knowledge of older adults’ goals.

In this sample, participants were less concerned with seizure frequency (some noting that seizures are the “easy part”), and more focused on their ability to go about their lives as normally as possible. With good reason, epilepsy researchers have often focused on disease status—namely seizure frequency and severity—as an outcome of both medical and behavioral interventions. Buelow and Johnson22 found that seizure frequency often is seen as the “end product of epilepsy self-management” (p. 333). Nine years later, Unger and Buelow5 found that, even in interdisciplinary research studies, number of seizures and severity of the disorder were considered main outcomes of epilepsy self-management. However, targeting the outcomes of seizure frequency and severity in isolation is incomplete, and may not capture outcomes of prime importance to persons living with epilepsy.

Over time, and especially in the last decade,5 epilepsy researchers and practitioners have begun to recognize other outcomes, such as QoL, as pertinent for persons self-managing epilepsy. In fact, several epilepsy-specific measures have been developed in order to provide a means to assess the QoL of persons with epilepsy.23-25 Quality of life is a phenomenon “fundamental to the human health experience,” and refers to an individual's overall sense of well-being.26 In a recent survey, epilepsy researchers and clinicians noted that preservation and improvement of QoL, though secondary to seizure frequency, is a main management outcome for individuals with epilepsy.27 As well, the Centers for Disease Control and Prevention created the Managing Epilepsy Well Network28 to ensure that epilepsy self-management research aimed at enhancing QoL is conducted. Such a focus on QoL as an outcome for persons with epilepsy has been echoed by the IOM.10 Findings from this study are thus consistent with the notion that “epilepsy is so much more than seizures” (p. 12).10 While QoL has been recognized as an outcome for persons with epilepsy, the specific aspects and nuances of QoL that are of prime importance to older adults with epilepsy have not been revealed until now. With knowledge generated by the current study, those developing or tailoring formal epilepsy self-management interventions, in addition to those caring for older adults with epilepsy in the clinic environment, can ensure that interventions and educational counseling are aimed at patient-centered outcomes.

Despite the sample’s focus on normalcy as a prime outcome of epilepsy self-management, five participants did speak specifically of wanting seizure freedom; this freedom was sought so that normalcy could be achieved. Seizure freedom has been associated with improved QoL in persons with epilepsy.29 Though complete seizure freedom is not always attainable, minimization of seizures has been considered as an important precursor to the preservation or improvement of QoL in persons with epilepsy.30 Therefore, interventions to improve patient-centered outcomes in older adults with epilepsy should not neglect minimization of seizure events.

Participants expressed a desire to be more involved in their epilepsy treatment, and also more well-equipped to handle management of the condition. No published research has indicated that persons with epilepsy, and particularly older adults, have a desire to be more involved in treatment of their epilepsy. However, the desire to be better informed about epilepsy has been noted in younger adults.31 Formal self-management or bedside/outpatient educational interventions for older adults with epilepsy may need to target enhancement of communication skills used with health care providers to facilitate a more active and informed role in disease management.

Participants in this study, all of whom had at least one co-morbidity in addition to epilepsy, expressed a desire to better integrate self-management of epilepsy with that of other diseases. While no published studies replicating this finding in older adults with epilepsy could be found, a study involving older adults with diabetes revealed that participants found managing co-morbidities in addition to diabetes particularly difficult. When intervening with or counseling older adults with epilepsy, it may be important to discuss and teach strategies to streamline the self-management of various chronic conditions.

A salient finding in the current study was participants’ perceived incongruence regarding outcomes important to them and those important to health care providers. Further, participants felt providers were unaware of outcomes they hoped to achieve. Prior research has supported the existence of such a rift by surveying both patients and providers about treatment goals. For instance, a disconnect in goals between providers and persons with diabetes was documented.32 In a study involving adults with epilepsy and health care providers, researchers found that patients were more concerned with life issues (particularly effects of memory problems), while providers were more concerned with clinical issues.33 Patient-centered care is difficult to achieve in an environment in which patient and provider goals for treatment are not aligned, and even more so when patients’ goals are not communicated to providers.

4.1. Implications

Current findings have implications for both practice and future research. First, clinicians caring for older adults with epilepsy should be aware of patient-centered outcomes when designing and implementing a treatment plan. Specifically, in addition to the typical outcomes of seizure frequency and severity, providers may want to assess patients’ progress toward outcomes identified by participants in this study. Providers may also want to take steps to ensure that patients are more involved in treatment decisions. Given participants’ perceptions that their providers are unaware of their personal goals in self-managing epilepsy, it is important that providers explicitly discuss goals with older adults with epilepsy. Providers may also want to consider discussing with patients how management of epilepsy will fit in with management of patients’ other chronic diseases, given that participants in this sample voiced concern regarding management of multiple chronic conditions.

Findings generated from this study can inform future research endeavors. First, a similar study involving a more racially- and geographically-diverse sample may be needed to ensure that current findings are in alignment with the experiences of minority older adults with epilepsy. Results of the current and any follow-up studies can then directly inform the development of much-needed patient-centered interventions for older adults self-managing epilepsy. Researchers designing such interventions can ensure that interventions target outcomes that are of primary interest to the population. Further, findings from this and any follow up study can be used to inform the development of a patient-centered outcome measure.

4.2. Limitations

Limitations of this study restrict the generalizability of findings. Nineteen participants were Caucasian, while only one minority participant was recruited. Findings therefore may not represent experiences of minority older adults. Also, participants were recruited from a single Midwestern state. Though varied levels of education and socioeconomic status were represented, findings would be made more robust by a more geographically diverse sample. Finally, the majority of participants were female (60%; n=12), and thus experiences of older men with epilepsy may be underrepresented.

5. Conclusion

In this study, older adults with epilepsy identified self-management outcomes of importance to them. These results add to the extant literature, and provide knowledge on which patient-centered epilepsy self-management interventions can be developed. In addition, these results can inform the development of a patient-centered outcome measure for older adults with epilepsy. Such a measure could be used in conjunction with existing measures related to disease status (seizure frequency, etc.) to ensure that outcomes pertinent to both patients and providers are targeted and measured.

Highlights.

  • Older adults have the highest incidence of new-onset epilepsy.

  • There is a need for patient-centered interventions for this population.

  • Patient-centered outcomes of older adults with epilepsy are described.

  • Implications for research and practice are discussed.

Acknowledgments

This work was supported by 1F31NR012114-01-02 and KL2TR000163, both from the National Institutes of Health

Footnotes

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References

  • 1.Hesdorfer DC, Logroscino G, Benn E, Katri N, Cascino G, Hauser W. Estimating risk for developing epilepsy: a population-based study in Rochester, Minnesota. Neurology. 2011;76:23–27. doi: 10.1212/WNL.0b013e318204a36a. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2.Cross JH. Epilepsy in the WHO European region: Fostering epilepsy care in Europe. Epilepsia. 2011;52:187–188. doi: 10.1111/j.1528-1167.2010.02903.x. [DOI] [PubMed] [Google Scholar]
  • 3.Centers for Disease Control and Prevention Healthy Aging. Available at http://www.cdc.gov/aging/data/. Accessed October 1, 2013.
  • 4.DiIorio C, Escoffery C, Yeager KA, McCarty F, Henry TR, Koganti A, Reisinger E, Robinson E, Kobau R, Price P. WebEASE: Development of a web-based epilepsy self-management intervention. Preventing Chronic Disease. 2009;6:A28. [PMC free article] [PubMed] [Google Scholar]
  • 5.Unger W, Buelow J. Hybrid concept analysis of adults newly diagnosed with epilepsy. Epilepsy & Behavior. 2009;14:89–95. doi: 10.1016/j.yebeh.2008.09.002. [DOI] [PubMed] [Google Scholar]
  • 6.Buelow J. Epilepsy management issues and techniques. Journal of Neuroscience Nursing. 2001;33:260–269. doi: 10.1097/01376517-200110000-00006. [DOI] [PubMed] [Google Scholar]
  • 7.Brody MJ, Kwan P. Epilepsy in elderly people. British Medical Journal. 2005;331:1317–1322. doi: 10.1136/bmj.331.7528.1317. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 8.Rowan AJ, Ramsay RE. Epilepsy in the Elderly. Butterworth-Heinemann; New York: 1997. [Google Scholar]
  • 9.Leppik IE, Walczak TS, Birnbaum AK. Challenges of epilepsy in elderly people. Lancet. 2012;380:1128–1130. doi: 10.1016/S0140-6736(12)61517-7. [DOI] [PubMed] [Google Scholar]
  • 10.Institutes of Medicine . Epilepsy Across the Spectrum: Promoting Health and Understanding. Author; 2012. [Google Scholar]
  • 11.American Geriatrics Society Expert Panel on the Care of Older Adults with Multimorbidity Patient-centered care for older adult with multiple chronic conditions: a stepwise approach from the American Geriatrics Society. Journal of the American Geriatrics Society. 2012;60:1957–1968. doi: 10.1111/j.1532-5415.2012.04187.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 12.Bradley PM, Lindsay B. Care delivery and self-management strategies for adults with epilepsy. Cochrane Database of Systematic Reviews. 2008;1:CD00624. doi: 10.1002/14651858.CD006244.pub2. [DOI] [PubMed] [Google Scholar]
  • 13.CiIorio C, Escoffery C, McCarty F, Yeager KA, Henry TR, Koganti A, Reisinger E, Wexler B. Evaluation of WebEase: an epilepsy self-management web site. Health Education Research. 2009;24:185–197. doi: 10.1093/her/cyn012. [DOI] [PubMed] [Google Scholar]
  • 14.DiIorio C, Bamps Y, Escoffery C, Reisinger-Walker E. Results of a randomized controlled trial: Evaluating WebEase, an online epilepsy self-management program. Epilepsy & Behavior. 2011;22:469–474. doi: 10.1016/j.yebeh.2011.07.030. [DOI] [PubMed] [Google Scholar]
  • 15.Lorig K. Self-management education: More than a nice extra. Medical Care. 2003;41:699–701. doi: 10.1097/01.MLR.0000072811.54551.38. [DOI] [PubMed] [Google Scholar]
  • 16.Patient-Centered Outcomes Research Institute. Patient-Centered Outcomes Research Institute Available at http://www.pcori.org/about-us/landing/. Accessed January 2, 2014.
  • 17.Miller W, Bakas T, Habermann B, Buelow J. Research involving participants with chronic diseases: Overcoming recruitment obstacles. Clinical Nurse Specialist. 2013;27:307–313. doi: 10.1097/NUR.0b013e3182a8725a. [DOI] [PubMed] [Google Scholar]
  • 18.Sandelowski M. Whatever happened to qualitative description? Research in Nursing and Health. 2000;23:234–240. doi: 10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g. [DOI] [PubMed] [Google Scholar]
  • 19.Sandelowski M. Qualitative analysis: What it is and how to begin. Research in Nursing and Health. 1995;18:371–375. doi: 10.1002/nur.4770180411. [DOI] [PubMed] [Google Scholar]
  • 20.Miles M, Huberman A. Qualitative Data Analysis: A Source Book of New Methods. Sage; Beverly Hills: 1994. [Google Scholar]
  • 21.Lazarus R, Folkman S. Stress, Appraisal, and Coping. Springer Publishing Company; New York: 1984. [Google Scholar]
  • 22.Buelow JM, Johnson J. Self-management of epilepsy: a review of the concept and its outcomes. Disease Management and Health Outcomes. 2000;8:327–336. [Google Scholar]
  • 23.Jacoby A, Baker G, Smith D, Dewey M, Chadwick D. Measuring the impact of epilepsy: the development of a novel scale. Epilepsy Research. 1993;16(1):83–88. doi: 10.1016/0920-1211(93)90042-6. [DOI] [PubMed] [Google Scholar]
  • 24.Ferrans C, Cohen F. Quality of life: persons with epilepsy and the general population. Epilepsia. 1996;34(6):25. [Google Scholar]
  • 25.Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B. Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia. 1998;39(1):81–88. doi: 10.1111/j.1528-1157.1998.tb01278.x. [DOI] [PubMed] [Google Scholar]
  • 26.Fulton JS, Miller WR, Otte JL. A systematic review of analyses of the concept of quality of life in nursing: exploring how form of analysis affects understanding. Advances in Nursing Science. 2012;35:E1–E12. doi: 10.1097/ANS.0b013e318253728c. [DOI] [PubMed] [Google Scholar]
  • 27.Center for Managing Chronic Disease . Key Informants’ Perspectives on Managing Epilepsy. Author; Ann Arbor: 2010. [Google Scholar]
  • 28.Managing Epilepsy Well Network MEW Network at a Glance. Available at http://www.sph.emory.edu/ManagingEpilepsyWell. Accessed December 3, 2013.
  • 29.Birbeck GL, Hays RD, Cui X, Vickrey BG. Seizure reduction and quality of life improvements in people with epilepsy. Epilepsia. 2002;43:535–538. doi: 10.1046/j.1528-1157.2002.32201.x. [DOI] [PubMed] [Google Scholar]
  • 30.Hessen E, Lossius MI, Gjerstad L. Health concerns predicts poor quality of life in well-controlled epilepsy. Seizure. 2009;18:487–491. doi: 10.1016/j.seizure.2009.04.008. [DOI] [PubMed] [Google Scholar]
  • 31.Choi H, Pargeon K, Bausell R, Wong JB, Mendiratta A, Bakken S. Temporal lobe epilepsy surgery: What do patients want to know? Epilepsy and Behavior. 2011;22:479–482. doi: 10.1016/j.yebeh.2011.07.038. [DOI] [PubMed] [Google Scholar]
  • 32.Heisler M, Sandeep V, Anderson R, Ubel PA, Bernstein SJ, Hofer TP. When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make? Journal of General Internal Medicine. 2003;18:893–902. doi: 10.1046/j.1525-1497.2003.21132.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 33.McAuley JW, Elliott JO, Patankar S, Hart S, Long L, Moore JL, Shneker BF. Comparing patients' and practitioners' views on epilepsy concerns: a call to address memory concerns. Epilepsy and Behavior. 2010;19:580–583. doi: 10.1016/j.yebeh.2010.09.001. [DOI] [PubMed] [Google Scholar]

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