Table 3 Study characteristics
Study # Enrolled Study design (companion) | Design details | Eligibility Recruitment detail | Age: 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 characteristics | Adults 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 time | Diagnosis 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] | Survey | Diagnosis 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 questions | Currently 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 attributes | Adults 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 survey | Patients: > 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 questions | Adults 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 interviews | Diagnosed 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, medications | Clear 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 | |||||
Questionnaires, registration forms, and semi-structured group interviews | Patients: 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 | |