Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

Lewinski, Allison A.; Shapiro, Abigail; Gierisch, Jennifer M.; Goldstein, Kenneth M.; Blalock, Dan V.; Luedke, Matthew; Gordon, Adelaide M.; Bosworth, Hayden B.; Drake, Connor; Lewis, Jeffrey D.; Sinha, Saurabh; Husain, Aatif M.; Tran, Tung Thanh; Noord, Megan Van; Williams, John W

doi:10.1186/s13643-020-01322-9

Cited by 14 publications

(24 citation statements)

References 52 publications

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“… 63 Although high benefits of these interventions were demonstrated, 64–66 their implementation is still insufficient and requires considering many factors at the person, program, and systems levels. 67 …”

Section: Discussionmentioning

confidence: 99%

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

Tumienė¹,

Riera²,

Grikinienė³

et al. 2022

JMDH

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More than 650 inherited metabolic diseases may present with epilepsy or seizures. These diseases are often multisystem, life-long and induce complex needs of patients and families. Multidisciplinary care involves all stages of disease management: diagnostics, specific or symptomatic, acute and chronic treatments, and integrated care that takes into account not only medical, but also manifold psychosocial, educational, vocational and other needs of patients and their caregivers. Care coordination is indispensable to ensure smooth transitions of care across life and disease stages, including management of emergencies, transition from pediatric to adult services and palliative care. Care pathways are highly diverse and have to find the right balance between highly specialized and locally provided services. While multidisciplinary teams consist of many professionals, a named supervising physician in a highly specialized healthcare setting and a care coordinator are highly important. As the greatest burden of care always falls onto the shoulders of patients and/or families, patient empowerment should be a part of every care pathway and include provision of required information, involvement into common decision-making, patient’s and family’s education, support for self-management, liaison with peer support groups and emotional/ psychological support. Due to the rarity and complexity of these diseases, sufficient expertise may not be available in a national healthcare system and cross-border services (virtual or physical) in the recently developed European Reference Networks should be ensured through the proper organization of referral systems in each EU and EEA country. Finally, digital technologies are particularly important in the provision of services for patients with rare diseases and can significantly increase the availability of highly specialized services and expertise.

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Section: Discussionmentioning

confidence: 99%

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

Tumienė¹,

Riera²,

Grikinienė³

et al. 2022

JMDH

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“…The ASAP can be particularly helpful in guiding home management of seizures [13], which may in turn prevent sudden unexpected death in epilepsy (SUDEP) and reduce visits to the emergency department (ED). In a randomized controlled trial of one SAP, although healthcare utilization was not affected, caregivers for patients with epilepsy receiving an SAP were more comfortable with seizure care and missed fewer appointments [14] Development of an ASAP should involve cooperation among the patient, caregiver, and HCPs to create a customized plan tailored to the patient [15]. The physician (e.g., epileptologist, general practitioner, neurologist, and pediatrician), advanced practice provider, or other office practitioners along with the patient and caregiver should develop the ASAP based on the patient's history, seizure type, and seizure profile.…”

Section: Why Acute Saps (Asaps) Are Needed For Persons With Epilepsymentioning

confidence: 99%

Recommendations for development of acute seizure action plans (ASAPs) from an expert panel

Penovich¹,

Glauser²,

Becker³

et al. 2021

Epilepsy & Behavior

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Purpose of review: Disease-related treatment action plans for acute exacerbations providing information that may be helpful for self-management for patients and caregivers are commonly used for chronic conditions such as asthma and diabetes. However, among patients with epilepsy, a review of the literature suggested that the majority did not have an action plan in place for acute seizure treatment. Recent findings: Currently, there is a lack of unified guidance on seizure action plans (SAPs) in the literature. In the authors' opinion, available formats have limitations for practical use and may not be easily customizable to individual patients, and they are not often designed to provide simple-to-follow steps for rapid immediate steps to determine and initiate appropriate treatment of seizure emergencies. Our group reviewed current examples of SAPs and provided guidance on the development of acute seizure action plans (ASAPs) designed to facilitate rapid, appropriate acute care in the community and to be as useful as possible for a wide range of care partners, including those with limited experience. Summary: This paper provides agreed upon expert opinion recommendations and considerations for goals, development process, types of content, and format for an ASAP.

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“…Challenges also may arise if the content of the action plan does not account for the patient's and/or caregiver's perceptions of how epilepsy should be managed. 29 For example, patients and caregivers may not understand and accept the need to treat seizures acutely. 30 Also, barriers may be encountered when there is disagreement about what content is necessary in the ASAP; whether the content included is too general to be of use or is not tailored to the patient; and when the patient's cognitive issues, preferences for format, and access to health care are not addressed.…”

Section: Potential Patient and Caregiver Barriersmentioning

confidence: 99%

“…30 Also, barriers may be encountered when there is disagreement about what content is necessary in the ASAP; whether the content included is too general to be of use or is not tailored to the patient; and when the patient's cognitive issues, preferences for format, and access to health care are not addressed. 29 In a survey of 291 adults with epilepsy and their caregivers, 87% of respondents said that they were directly involved in writing their plan; however, fewer respondents (66%) said that the plan included their views on how support will be provided. 36 Other barriers may include logistical issues, such as lack of clarity for follow-up schedule with the HCP and unclear instructions for caregivers on their role in the management of epilepsy.…”

Section: Potential Patient and Caregiver Barriersmentioning

confidence: 99%

Introduction to use of an acute seizure action plan for seizure clusters and guidance for implementation

Patel

Becker

2022

Epilepsia

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It is important for patients with epilepsy and their caregivers, including care partners, to understand the patient's seizure clusters and what to do when they occur. In many instances, seizure clusters are unique to each patient. The knowledge gained from understanding a patient's seizure cluster or seizure pattern provides a foundation for taking prompt action to prevent worsening to prolonged seizures, status epilepticus, and potentially death. Seizure action plans (SAPs), which are similar to the disease‐related treatment action plans for other conditions, can be developed by a health care provider (HCP) in conjunction with the patient with epilepsy and/or caregivers, and SAPs are specifically customized for the individual patient and his or her seizure management. However, the current literature lacks unified guidance on how to design SAPs that will help prepare patients and caregivers for rapidly determining and initiating appropriate treatment of acute seizure emergencies in the community and at home. Here, we examine the current usage and value of SAPs for pediatric and adult patients with epilepsy, and we introduce the concept of the acute SAP (ASAP) for use specifically during seizure emergencies, such as seizure clusters. This type of standardized, simplified, and customized plan can rapidly and concisely provide patients and caregivers with a practical protocol to treat a seizure cluster consistently, appropriately, and in a timely manner. Details on potential content and formats of ASAPs are provided. Following this is a discussion of barriers to ASAP use that may affect HCPs or patients and caregivers, including lack of standardization, relevance, and personalization and pitfalls associated with technology. This leads into a discussion of guidance for developing, implementing, and updating ASAPs that suggests ways to address the barriers and ensure that the ASAP is best suited to the patient's needs.

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Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

Cited by 14 publications

References 52 publications

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

Multidisciplinary Care of Patients with Inherited Metabolic Diseases and Epilepsy: Current Perspectives

Recommendations for development of acute seizure action plans (ASAPs) from an expert panel

Introduction to use of an acute seizure action plan for seizure clusters and guidance for implementation

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