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Table 3 Study characteristics

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

Study # Enrolled Study design (companion)Design detailsEligibility Recruitment detailAge: mean (SD) Female: number (%)Finding(s)Risk of bias
Descriptive quantitative studies
Atkinson-Clark [51]
299
Discrete-choice experiment
Repetitive choice between 2 hypothetical SM programs, varying on 6 characteristicsAdults 18 + self-report diagnosed with epilepsy
100 adults targeted in each of: France, Netherlands, Germany. Methods of recruitment NR.
Age: 45.5 (17.6), Female: 161 (53.8)• Out of pocket cost to participant is the most important feature for participation, (p < .01)
• Preferences vary by categorical groups, including by disease burden (high/low), country (France vs. Germany vs. Netherlands), and SES
• 20% of participants preferred to never participate in SM programs
Sample Strategy: low
Representative sample: unclear
Appropriate measures: low
Nonresponse bias: low
Appropriate analysis: low
Summary: unclear how well panels represented the population of interest
Begley [52]
Single group longitudinal study of two successive clinic visits; process measures included exit interviews; quantitative questionnaire used in at 2 time points
Begley [54]
Feasibility assessed by giving surveys to patients and providers after visits to obtain ease of use and usefulness of MINDSET, quality and concurrence of patient/provider communication/shared decision making, and capacity of tool to monitor epilepsy characteristics and self-management behaviors over timeDiagnosis of epilepsy, aged 18 or over, spoke English
Recruited from 3 epilepsy clinics; patients identified by collaborating providers
Age: 36.9 (10.9)
Female: 14 (66.7%)
• Majority of patients noted time to use MINDSET was “just right” and found MINDSET to be more understandable over time; majority of patients needed assistance to use MINDSET the first time, and the duration for patients to enter data into MINDSET was between 11 min to 1 h
• Process: Incident log noted 9 occurrences of technical/user problems in visit 1
• Exit interviews: Patients positive about MINDSET; improvements include clarity and wording, applicability of behavioral items, accounting for age differences; patients found action plan more helpful after visit 2 action plan printout was rated favorably by patients in both visits but more so in visit 2 after the patients had time to work with the plan
Sample Strategy: low
Representative sample: low
Appropriate measures: low
Nonresponse bias: unclear
Appropriate analysis: low
Summary: no major concerns
Begley [52]
Begley [54]
SurveyDiagnosis of epilepsy, aged 18 or older, no major neurological impairments
Physicians at participating clinics identified eligible participants
Age: 39.0 (13.05)
Female: 26 (60.5%)
• Main: Patients found that MINDSET was easy to use, informative and helpful; raised awareness about epilepsy self-management
• Health care providers found MINDSET facilitated identification of self-management challenges, goals, and developing an action plan; felt MINDSET fit into existing workflow
Sample Strategy: unclear
Representative sample: unclear
Appropriate measures: unclear
Nonresponse bias: unclear
Appropriate analysis: low
Summary: research methods were minimally described; it is unclear if all participants and providers chose to participate and development of measures was not adequately described.
Clark [50]
101
Cross-sectional survey
Survey with closed- and open-ended questionsCurrently employed in a position involving services or services related to epilepsy patients or clients; be recognized as making contributions to the understanding of epilepsy in his or her organization or community; be considered a national or international thought leader
Study advisors created an initial list of potential participants, and then used snowball sampling to obtain other participants
Age: NR
Female: 71%
• Compliance with medical regimen and learning about epilepsy were considered the most important behaviors by about a third of the respondents
• 45% of the respondents indicate that finding effective, accessible care was the most significant challenge in the self-management of epilepsy
• Barriers faced by clinicians: 37% stated time limitations; 25% stated limited focused training for holistic issues
• Challenges as to reasons for medication compliance, and challenges facing clinicians differed between social workers, researches, and clinicians
Sample Strategy: unclear
Representative sample: unclear
Appropriate measures: unclear
Nonresponse bias: high
Appropriate analysis: low
Summary: research methods minimally described; high non-response bias not adequately addressed.
Fraser [48]
165
Cross-sectional survey
(Johnson, [53])
Mailed cross-sectional survey with demographics, relevant epilepsy and behavioral questionnaires, and questions on 13 domains of intervention attributesAdults 18 and over, epilepsy > 1 year,
Recruited by treating neurologist from: epilepsy care centers (n = 250) and from a group with self-reported epilepsy from a community support foundation (n = 22)
Age: 46.05 (14.02)
Female: 92 (56.44%)
• Intervention format: Preference for individual face-to-face sessions (49.69%), followed by face-to-face group (33.33%) and tailored mailed materials (22.01%). Some (39%) preferred multiple-format. Site was unimportant.
• Preference for 60-min weekly sessions on weeknight or Saturday afternoons; participants (57%) wanted 8 or fewer sessions, while some (24%) wanted 12 or more sessions
• Intervention Leadership: Preference for dyad of leaders—one epilepsy health professional and one PWE.
Sample Strategy: unclear
Representative sample: unclear
Appropriate measures: low
Nonresponse bias: unclear
Appropriate analysis: low
Summary: minimal description of sampling methods and non-response bias
Johnson [53]
Clinicians (n = 20); patients (n = 165)
Cross-sectional survey
(Fraser [48])
Patients: Survey had 4 domains (seizure information, general health information, self-management program information, personal background); Clinicians: Survey had 3 domains (epilepsy problem area domains, self-management program, personal background information); mailed self-report surveyPatients: > 18 with chronic epilepsy; Clinicians: medical/allied health providers who treat patients with epilepsy in inpatient/outpatient settings
Patients: Epilepsy care medical centers (n = 250) and Epilepsy Foundation community support programs (n = 22); Clinicians: convenience sample recruited during unit/advisory board meetings; patients: sampling strategy not identified
Age: Clinicians (44.8, SD 11.1); Patients (46, SD 14.0)
Female:
Clinicians (n = 10, 50%); Patients (n = 94, 56%)
• Providers indicated importance of personal goal-setting skills and problem-solving approaches, and lower rankings on coping strategies
• Program leadership: A different proportion of providers believed that physicians, nurses, and counselors should lead self-management interventions
Sample Strategy: low
Representative sample: unclear
Appropriate measures: low
Nonresponse bias: high
Appropriate analysis: low
Summary: minimal description of sampling strategy and representativeness; non-response was high with no interpretation presented
Leenen [47]
571
Cross-sectional survey
14-question self-completed or parent-proxy-completed, mailed questionnaire, 12 closed-ended, 2 open-ended questionsAdults with epilepsy or parents/caregivers serving as proxy for their child with epilepsy and/or for people with cognitive deficits associated with their epilepsy.
Consecutive series of patients who visited one epilepsy outpatient clinic
Age:
38.3(18.5)
Female:
284 (50.7%)
• Self-monitoring: participants engage in self-monitoring behaviors for seizure frequency (16% with e-health tool/digital diary) and/or medication adherence (14% with e-health tool/alarm on phone), change of medication (66%), side effects (43%), use of emergency medications (36%), stress factors (38%)
• Possession of hardware: 82% own a computer, 39% own a smartphone. Those 45+ were less likely to use computers or smartphones.
Sample Strategy: low
Representative sample: unclear
Appropriate measures: low
Nonresponse bias: unclear
Appropriate analysis: low
Summary: reasons for nonresponse were not included
Qualitative studies
Buelow [40]
25
Qualitative
Semi-structured interviewsDiagnosed with epilepsy for at least 5 years; at least 18 years old; no other major physical or psychological illnesses; was taking at least one antiepileptic medication; had experienced at least one seizure within the last 6 months
Purposive and convenience sample of patients identified by physicians, NPs, and the researcher, from a large metropolitan epilepsy center and local epilepsy foundation
Age:
38, range 20-73
Female: NR
• Management techniques (means patients use to manage situations): management of employment and social situations, seizure management, seizure consequences, medicationsClear Aim: low
Methods: low
Appropriate designs: low
Recruitment: low
Data collection: low
Research relationship: low
Ethical: unclear
Rigorous analysis: unclear
Clear findings: unclear
Valuable research: unclear
Summary: minimal description of analytic procedures; no mention of approval from an ethics committee; no description of how the relationship between researcher and participants may have affected the interview process and findings
Laybourne [41]
10
Qualitative (Ridsdale [55])
Individual semi-structured interviews (n = 7, 4 in-person, 2 telephone, 1 email) and semi-structured, in-person group interview (1 group, n = 3 participants)Adult PWE with formal diagnosis of epilepsy, prescribed antiepileptic medication, having > 1 seizure in previous 12 months
Self-selected study participants
Age: 37 (13.1)
Female: 6 (60%)
• Key motivating factor for participation was meeting other PWE, peer support
• Other factors: empowerment through knowledge acquisition: being able to bring materials to their partners/caregivers, communicate with medical professionals
Clear Aim: low
Methods: low
Appropriate designs: low
Recruitment: low
Data collection: low
Research relationship: low
Ethical: low
Rigorous analysis: low
Clear findings: low
Valuable research: low
Summary: no major concerns
Ridsdale [22]
20
Nested qualitative study (Ridsdale [55])
Participants were interviewed within 6 months after attending a course from the larger RCT; semi-structured interviews were based on a topic guide (topics generated with service users and piloted prior to use)Adults aged 16 or over, diagnosis of epilepsy, currently prescribed antiepileptic drugs, have had 2 or more seizures in the previous year, speak/read English
Purposively selected from the RCT participants to represent differences in gender, age, ethnicity, and frequency of seizures prior to the RCT
Age: NA
Female:
10 (50%)
• Perceived benefits of intervention: Met others with epilepsy; learning method enabled participants to ask questions, share stories, discuss negative feelings, and compare different attitudes/experiences about epilepsy; changing self-management behaviors based on information learned in group
• Limitations of intervention: Some participants noted they did not have the language skills or ability to understand what was discussed in the group, some noted memory challenges; some participants reported the course started too early or went too long.
Clear Aim: low
Methods: low
Appropriate designs: low
Recruitment: low
Data collection: low
Research relationship: low
Ethical: low
Rigorous analysis: low
Clear findings: low
Valuable research: low
Summary: no major concerns
Snape [42]
9 health care professionals, 13 PWE, 10 carers
Qualitative
Document review, semi-structured individual interviews (face-to-face or telephone; w/health professionals), focus groups (w/PWE using EDs and carers)Health professionals; PWE/Carers: aged ≥ 16, lived in NW England, provide consent; additionally PWE needed to: have established diagnosis of epilepsy (≥ 1 year), prescribed antiepileptic med, visited an ED in the past 2 years
Purposive sampling from intervention groups (PWE/carers), health professionals with specialties/interest in epilepsy; Most professionals were nominated by their discipline’s professional body; PWE and carers identified via user-groups
Age: NA
Female: PWE: 6 (46%) Carers: 6 (60%). Health Professionals: NR
• For success in health system, program should be standardized with protocols for health care professionals
• Participants valued group format that included carers,
• PWE and carers valued written materials (handouts, web access, etc.) to mitigate memory deficits for PWE
Clear Aim: low
Methods: low
Appropriate designs: low
Recruitment: low
Data collection: low
Research relationship: low
Ethical: low
Rigorous analysis: low
Clear findings: low
Valuable research: low
Summary: no major concerns
Walker [43]
Pilot: 35; Control: 148
Qualitative - analysis of text from two open-ended questions on social support
Data was derived from the pilot and efficacy WebEase studies. Data collection: within each WebEase module there are text boxes for the person with epilepsy to type in who the support person is and how that person can help them with medication, stress, or sleep behaviors.Diagnosis of epilepsy; aged 18 or over; English speaking; taking antiepileptic medication for at least 3 months; access to a computer with internet
Pilot study participants recruited from two hospital-based clinics; efficacy study (CT) participants recruited via the Internet from epilepsy websites and Listserv
Age:
Pilot: 37.5 (12.6); CT: 40.87 (13.32)
Female:
Pilot: 21 (61.8%); CT: 109 (73.6%)
• 12% of participants indicated no support provider
• Spouses and partners, children, friends, siblings, and others were listed as providers
• Medication module: Support providers helped with reminders for monitoring medication
• Sleep module: support providers helped with strategies to improve sleep, and helped patient reduce stress
• Stress module: Support providers provided emotional, appraisal, and instrumental support to the person with epilepsy which helped to reduce stress
Clear Aim: low
Methods: low
Appropriate designs: low
Recruitment: low
Data collection: low
Research relationship: unclear
Ethical: low
Rigorous analysis: low
Clear findings: low
Valuable research: low
Summary: the relationship between the researchers and participants is not well-described
Mixed-methods studies
Leenen [49] (Leenen [56]) Questionnaires, registration forms, and semi-structured group interviewsPatients: over 18, living at home, diagnosed with epilepsy and used antiepileptic drugs,
Relative: invited by patient
Recruited from an Academic Center for Epileptology, by press releases in national epilepsy magazines and via social media (Facebook)
Patients
Age: 40.5 (13.5)
Female: 24 (46.2%)
Relatives
Age: n/a
Female: 21 (56.8%)
• Patients and relatives reported the: program was good; the optimal group size was 10–12 participants; about half the participants stated they expected the program to be more educational; liked the social support from relatives and peer support
• Facilitators reported: the optimal group size was 10–12 participants; involvement in intervention was not embedded in regular work duties; wanted motivational interviewing sooner; felt workbook should be simplified and their protocol minimized
• Barriers for patients and relatives: technical problems; transportation to intervention location
• Barriers for facilitators: could not follow-up with patients to support them, instructions to relatives were unclear
Rationale: low
Integrated effectively: unclear
Integration interpretation: unclear
Qual quant inconsistencies: low
Adhere quality: low
Summary: minimal description of data integration