mindset: management information & decision support...

MINDSET: Management Information &

Decision Support Epilepsy Tool

Dec 4th, 2011

Ross Shegog, Ph.D., Charles Begley, Ph.D.

University of Texas School of Public Health

Prevention Research Center

American Epilepsy Society | Annual Meeting

Disclosure

Name of Commercial

Interest

N/A

Type of Financial

Relationship

N/A


Learning Objectives

1. Describe basic steps in decision support system development

2. Describe useful behavioral theory and frameworks to guide epilepsy self-management decision-support.

3. Describe key components in clinic-based epilepsy decision support


This research was funded by a Special Interest Project (SIP09-12) Grant from the Centers for Disease Control and Prevention (Award number: 1U48DP000057-01).

Begley C, Shegog R, Iyagba B*, Chen V, Talluri K*, Dubinsky S, Newmark M, Ojukwu N, Friedman D. Socioeconomic status and self-management in epilepsy: Comparison of

diverse clinical populations in Houston, TX. Epilepsy & Behavior. 2010, 19 (3), 232-238. PMID: 20884301

DiIorio CK, Bamps YA, Edwards AL, Escoffrery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Ciechanowski P, Fraser RT, Johnson EK, Kobau R, Price,

PH. Managing Epilepsy Well Network. The prevention research centers‘ managing epilepsy well network. Epilepsy & Behavior. 2010, 19 (3), 218—224. PMID: 20869323

• Epilepsy self-management (MEW, CDC SIP08-06 - PI. Begley, Shegog) • Technology apps DSS in clinical practice

• Emergence of self-management – translation to practice – MEW network

Background

Emerging Epilepsy E-Management Tools

• EpiTracks • My Seizure Tracker • My Epilepsy Diary • Patients Like Me • WebEase • Project Uplift

Aims

1. Develop a ‗proof-of-concept‘ of a Management

Information & Decision Support Epilepsy Tool

(―MINDSET‖) to provide real-time self-management

decision-support to patients and health care

providers in specialty neurology clinics.

• Enhance patient awareness about self-management

• Immediate feedback on management issues

• HCP cues to management issues

• Patient-provider communication

• Self-management goal-setting

2. Evaluate the usability and feasibility of this strategy.

Knowledge acquisition and engineering Inductive knowledge acquisition 1. Patient-provider advisory group (PPAG) ongoing 2. Clinic task analysis 3. Empirical investigation of the association of self-management antecedents

(e.g. self-efficacy/social support with self-management behavior) – SIP09-06 (PI’s Begley, Shegog)

Deductive knowledge acquisition 4. Published quality care measures for epilepsy management 5. Theories and models from chronic disease management

• Social Cognitive Theory • Motivational Interviewing/Enhancement protocols • 5A’s Model

6. Matrix of change objectives (Intervention Mapping)

Development Steps

1. Patient-provider Advisory group (PPAG)

Ross Shegog, PhD1, Michael Newmark, MD2, Charles Begley, PhD1, Bibele Iyagar1, David Friedman, MD3 ,

Stephanie Dubinsky, MPH2, Nikki Ojukwu 3,

Not pictured: Angelique Harding1, Drs. Hope and Goldsmith

1The University of Texas School of Public Health, 2Kelsey-Seybold Clinic, 3Ben Taub General Hospital

Ben Taub Clinic Flow Chart Kelsey Seybold Clinic Flow Chart

2. Clinic Task Analysis

Self-efficacy and social support had the strongest correlation with self-management among the psychosocial factors for all patients and for patients at each site.

Self-Management Sub-Scales Correlation Coef.

(Sig P value)

BT

(Sig P value)

KS

(Sig P value)

Med Management .55 (.00) .58 (.00) .58 (.00)

Info Management .75 (.00) .70 (.00) .76 (.00)

Safety Management .61 (.00) .66 (.00) .59 (.00)

Seizure Management .66 (.00) .62 (.00) .70 (.00)

Lifestyle Management .68 (.00) .76 (.00) .63 (.00)

Psychosocial Factors

Knowledge .15 (.02) .24 (.04) .05

Self Efficacy .27 (.00) .43 (.00) .31 (.00)

Outcome Expectation .11 .29 (.01) .07

Control -.02 -.03 .02

Social Support .19 (.00) .30 (.01) .20 (.00)

Depression -.06 -.37 (.00) .01

Stigma .077 -.06 .09

Patient Satisfaction -.04 -.21 -.09

3. Empirical Investigation

# Epilepsy measures aproved by AAN and the PCPI 1 Patient-identified indicators for adults with epilepsy 2,3

1 Seizure type and current seizure frequency Provide patients with references to information about epilepsy through the

epilepsy foundation and/or epilepsy Websites

2 Documentation of etiology of epilepsy or epilepsy syndrome Provide information about the impact of epilepsy and its treatment or other

health conditions

3 EEG results reviewed, requested, or scan ordered Communicate with patients about potential medication side effects, including

cognitive, emotional, physical, and sexual side effects

4 MRI/CT scan reviewed, requested, or scan ordered Discuss potential long-term side effects of medications

5 Querying and counelling about antiepileptic drug side effects Explain epilepsy repeatedly as many patients have memory loss

6 Surgical therapy referral consideration for intractable epilepsy Discuss driving with patients including giving information about alternative

transportation to patients who cannot drive

7 Counseling about epilepsy specific safety issues Give referrals to social services to assist with employment, negotiating

through SSDI

8 Counseling for women of childbearing potential with epilepsy Discuss impact of epilepsy and treatment on women‘s health with respect to

menstral cycles, conception, pregnancy, and menopause.

9 Be honest with patients about the inexact science of epilepsy treatment and

that there may be multiple trials of medication combinations before they find

out what works best for individuals

10 Refer patients to local support groups or other resources to obtain

psychosocial support

Sources:

1. Fountain NB, Van Ness PC, Swain-Eng R, Tonn S, Bever CT. Quality improvement in neurology: AAN epilepsy quality measures. Report of the Quality

measurement and Reporting Subcommittee of the American Academy of Neurology. Neurology, 2011, 76(4), 94-99

2. Pugh MJV, Berlowitz DR, Montouris G, Bokhour B, Cramer JA, Bohm V, Bollinger M, Helmers S, Ettinger A, Meador KJ, Fountain N, Boggs J, Tatum

WO, Knoefel J, Harden C, Mattson RH, Kazis L. What constitutes high quality of care for adults with epilepsy? Neurology, 2007, 69 (20), 2020-2027.

3. Pugh MJ, Berlowitz DR, Rao JK, Shapiro G, Avetisyan R, Hanchate A, Jarrett K, Tabares J, Kazis LE. The quality of care for adults with epilepsy: An

initial glimpse using the QUIET measure. BMC Health Services research, 2001 11(1). http://www.biomedcentral.com/1472-6963/11/1.

Also consistent with:

4. Living Well With Epilepsy II. Report of the 2003 national Conference on Public Health. Priorities for a Public Health Agenda on Epilepsy. Self-

management recommendations.

5. The Center for Managing Epilepsy Well: Contributing to managing Epilepsy Well. Key informants perspectives, University of Michigan, 2010.

4. Quality care criteria

http://www.biomedcentral.com/1472-6963/11/1



PRECEDE model for epilepsy self-management illustrating the association between

predisposing, enabling, and reinforcing factors, self-management behavior, and health & quality

of life outcomes.

Predisposing Factors

Anxiety/depression

Stigma

Alcohol and/or illicit drug consumption

Number of dosages

Knowledge of epilepsy

Perceived impact of epilepsy on

employability

Risk aversion

Time perspective

Financial support

Number of persons living with respondent

Social support

Self-efficacy

Outcome expectations

Fear of seizures

Enabling Factors

Medical care affordability

SES

Reinforcing Factors

Drug side effects – number and severity

Waiting times

Responsiveness of care

Communication with family by health care

team.

Reinforcement from family and self.

Self-Management Behaviors

Treatment management

Keep regular well visit health care appointments

Maintain chronic AED medication as prescribed

Seizure management

Call health care professional in an acute situation

Communicate with family members, health care

providers

First aid activities - recognizing status epilepticus

Life management

Changing lifestyle to avoid seizures – ―normal‖ sleep

levels; reduce stress (emotional and physical); avoid

triggers of alcohol, drugs, OTC meds, caffeine; keep

hydrated, avoid heat; control allergies; avoid hypo-

glycaemia; avoid blinking lights.

Planned disclosure to others

Develop a social support network

Develop linkage to resources

Health Outcomes

and Quality of Life

Seizure frequency

Perceived impact of

epilepsy on everyday life

General health

ER visits

Hospitalization

Functional Status

Sources: Kelsey Seybold Epilepsy Education Program, 200510 Buelow JM, 200111 ; Shope JT, 198812; DiIorio et al.,

200413; Levine et al., 199414; Devinsky et al., 199985; Cowan et al., 200486; Sabaz et al., 200387; Toshio et al., 199688; McEwan et al.,

2004113; DiIorio et al., 199415; DiIorio et al., 199216; DiIorio et al., 199217; May et al., 200239; Tedman et al., 199518; Anderson et al., 198919;

Austin et al., 199894; Cramer et al, 199995; Westbrook et al., 199220; Austin et al., 200289; Dunn et al., 1999112; Jones et al., 200521; Brandt et

al., 198122; Weinhert et al., 198723; Marshall et al., 199324; Ramaratnam et al., 200527; McLeod et al., 200325.

5. Theory & Models: PRECEDE

Selected Constructs Operationalized by … Epilepsy self-management

behavior: Medication / Information / Safety Seizure / Lifestyle

Epilepsy Self-management Scale (DiIorio C, Faherty B, Manteuffel B. Res Nurs Health 1994;17:167-174) and self-regulation model (Clark, 2001) E.g. I take my seizure medication the way my doctor orders it. Response: Never – Always

Self-management self-efficacy Epilepsy Self-management Self-efficacy Scale (Dilorio C, Faherty B, Manteuffel B. J Neurosci Nurs, 1992;24:9-13) E.g. How SURE are you that you can … Take your medicine the way your doctor has ordered it? Response: Not sure – very sure

Negative affect / depression Neurological Disorders Depression inventory for Epilepsy (NDDI-E) Screening Tool (www.EpilepsyFoundation.org) (Friedman, 2009, Gillam, 2006; Friedman et al, 2010 ) E.g. Nothing I do is right. Response: Always – Never

Adverse events Epilepsy Adverse Events Profile (Perucca, 2010; Panelli, 2007; Gillman, 2004; Abetz, 2000). 19-item scale; Total score range form 19 – 76;

E.g. During the last 4 weeks, have you had any of the problem listed? Response: Never a problem - Always a problem

6. Theory & Models: Constructs …

http://www.epilepsyfoundation.org/

Decision rules from application of motivational interviewing: importance,

confidence.

Source: Velasquez, 2004.

6. Theory & Models: Motivational Enhancement

5 A‘s Behavior Change Model has been adapted for Self-Management

Support Improvement in the clinical encounter

Data Input from patient

HCP confirms data, determines scores and stage

HCP – next visit date and goals.

HCP motivational interviewing

Example: Reinforcement, Empathy, Reflective listening

ASK

ASSESS

ADVISE

ASSIST

ARRANGE

HCP helps patient set a quit date, advises on

medications, and provides materials.

Source: Glasgow, 2002; Sheridan, 2004.

6. Theory & Models: 5A‘s Model

Objective covered by MINDSET Objective partially covered by MINDSET Objective not covered by MINDSET

ASSESS

CCM element: Have patient periodically complete valid health

behavior surveys and provide them with feedback.

Patient Level (patient-

provider interaction)

Office Environment

(standard operating

procedure)

Try brief behavior survey in a)

waiting room, b) on computer.

Select or develop Health

Risk Assessment (HRA)

survey.

Assess patient knowledge

about their chronic condition.

Employ conviction and

confidence rulers.

Ask patient, ―what about Self-

Management (SM) is most

important to talk about

today?‖

Revise self-care surveys to

make

appropriate.

- Ask patient, ―what are your

most challenging barriers?‖,

recognizing physical, social

and economic barriers.

Add fields to the medical

record to

record behavior status for

smoking; weight, exercise.

Provide patient with

personalized feedback and

results.

Add behaviors to the

problem list for

patient.

Assess conviction and

confidence regarding target

behaviors.

Prompt staff to collect or

update key

behaviors status at each

visit.

Have computer in waiting

room for

HRA assessment with print

outs for

providers and/or patients.

Employ outreach and

population-based approach

to assess all patients across

multiple chronic illnesses.

Pilot approaches to providing

feedback to patients--check

for understanding.

ADVISE

CCM element: Provide personally relevant, specific

recommendations for behavior change.



Office Environment

(standard operating

procedure)

Relate patient symptoms

or lab results to their

behavior, recognizing

patient‘s culture or

personal illness

model.

Develop list of

benefits of behavior

change/risk

reduction.

Inform patient that

behavioral issues are as

important as taking

medications.

Develop list of

common symptoms

that exercise, losing

weight or stopping

smoking can

improve.

Provide specific,

documented behavior

change advice in the

form of a prescription.

Arrange prompt

system to remind

physicians to advise

behavior change.

Share evidence-based

guidelines with patients

to encourage their

participation.

Provide prompt to

have physician

advise on importance

of calling if any

trouble taking

medication as

prescribed.

AGREE

CCM element: Use shared decision making strategies

that include collaborative goal setting.



Office Environment

(standard operating

procedure)

Have patient develop

specific, measurable,

feasible SM goal for

behavior change.

Make sure patient

SM goals are in chart

and all team

members refer to

them.

Provide options and

choices among possible

SM goals.

Provide staff with

training in patient

centered counseling

or empowerment

training, which may

include videos on

motivational

interviewing or goal

setting.

Do above with input from

family or spouse, and with

support/assistance from

caregiver.

Have in-service from

expert on shared

decision making.

Share perspectives with

patient on what is most

important short -term goal-

- agree on a specific

target.

Incorporate videos on

patient role or choice

into practice, and

have patients see

prior to consultation.

Present evidence on

benefits and harms to

patient and let them decide

on course.

Develop multi-modal

intervention to

promote practice

change rather than

one

utilizing single

strategy.

ASSIST

CCM element: Use effective self management support

strategies that include action planning and problem solving. Help

patients create specific strategies to address issues of concern to

them.



Office Environment

(standard operating

procedure)

Help patient develop strategies

to address barriers to change

(write on Action Plan form).

Select/develop SM

Action Plan form.

Implement patient discussion of

SM Action Plan a) during PCP

visit, b) immediately before or

after with nurse.

Adapt SM Action Plan

for your setting,

specifically focusing on

the 4 s‘ (size, scope,

scalability and

sustainability) in

planning any office

restructuring.

Refer patient to evidence based

education or behavioral

counseling--individual or group.

Develop specific plan to

enhance SM

resources—by

addressing the

REAIM dimensions-- to

make sure you are

addressing all key

issues for panel wide or

community impact.

Elicit patient‘s views and plans

regarding potential resources

and support within family and

community.

Make sure blank action

plan forms are

in each exam room.

Use planned interactions to

support evidence based care.

Give care that patients

understand and that fits with

their cultural background.

During follow-up visits, review

progress, experience,

concerns; renegotiate goals

and revise action plan.

ARRANGE

CCM elements: Follow-up on action plans.

Follow-up on referrals.

Establish two-way communication and partner with

community groups to improve services and linkages.



Office

Environment

(standard

operating

procedure)

Give patient copy of SM Action

Plan.

Develop

collaborative

process that can

facilitate

communications

and

support with other

practices.

Follow-up call to patient within

a week after visit as ―booster

shot‖ for SM Action Plan.

Develop follow-up

checklist / prompt

to

make sure follow-

up is provided.

- E-mail follow-up or brief letter

restating plan and inviting

questions.

Include blank on

action plan form for

follow-up date.

Arrange for patient to contact

specific community resources

that could support their goals.

Follow-up with goals set in

action plan at each non-acute

visit.

Adapted for Self-Management Support Improvement

Improvement Goal: All chronic illness patients will have a Self-Management (SM) Action Plan informed by

and including all the 5 A‘s elements (Assess, Advise, Agree, Assist, Arrange). The 5 A‘s Behavior Change

Model is intended for use with the Improving Chronic Illness Care Chronic Care Model (CCM).

Five A’s Change Concept and Strategy Tables1

1Source: Glasgow, 2002. Community level strategies omitted.

6. Theory & Models: 5A‘s Model (con‘t)

Source: Bartholomew, 2001.

7. Matrix of Change Objectives: Intervention Mapping

Personal Determinants

Environmental

POs Knowledge Self-efficacy

Skills Outcome expectations / attitude Perceived norms Social support

PO1. Patients makes committment to be adherent PO2. Patients takes medicine correctly and on time

Ki. Describe why, how and when to take meds correctly (name of pill, time, # pills, with/without food) Kii. List situations that make taking meds on time difficult Kiii. State importance of disclosing epilepsy status to family members to help with med adherence Kiv. List cues to action (memory epilepsy) for taking meds correctly (e.g., by toothbrush, pill box, at mealtimes) Kv. List ways to take meds discretely either at home or away from home Kvi. Describe why and how to correctly make up for a missed dose(s) Kvii. State reasons to talk w physician if missing doses Kviii. List side effects and state that most will diminish over time

SEi.Expresses confidence in ability to take meds as prescribed SEii. Expresses confidence in ability to take meds discretely if needed SEiii.Expresses confidence in ability to use cues/memory epilepsy SEiv.Expresses confidence in ability to make up a missed dose(s) correctly SEv. Express confidence in ability to overcome side effects

Ski.Demonstrates how to take meds correctly Skii. Demonstrates how to take meds discretely Skiii.Demonstrates how to use cues/memory epilepsy Skiv. Demonstrates how to make up a missed dose(s) correctly SKv.Demonstrate ability to overcome side effects

OE. I Expects that by taking meds correctly, patients will be better able to improve/maintain health status OEii. Expects that disclosing epilepsy status to family members, will help with med adherence

PNi. Recognizes that other patientss with epilepsy take meds correctly PNii. Recognizes that other patients with epilepsy use memory cues PNiii. Recognizes that other patients with epilepsy make up missed doses correctly PNiv. Recognize other patients with epilepsy experience and overcome side effects

SSi. Physician/Family members / caregiver / friends reminds patients to take meds correctly SSii. Physician / Family members / caregiver / friends help patients to use memory epilepsy SSiii. Physician / Family members / caregiver / friends help patients make up missed dose(s) correctly SSiv. Physician / Family members / caregiver / friends help patients overcome side effects

PO3. Patients has medication readily accessible (at home and away from home. PO4. Patients keeps routine clinic appointments

Adherence matrix (abbreviated)

PATIENTS

• Diagnosis of epilepsy (> 18 years of age); not newly diagnosed

• English speaking

• Able to complete the screening tool (no motor disorders (e.g.

hemiplagia or quadriplegia), learning difficulties, and

psychiatric/behavioral problems (e.g. autism and attention deficit

disorder) that would inhibit ability to use MINDSET or practice self-

management activities.

HEALTH CARE PROVIDERS

• Designed for use by health care providers who interact with

patients in the clinical encounter :

• specialists (epileptologists / neurologists),

• nurse educators, and

• health educators.

Target audience …

Context & Flow …

Develop action plan : Seizure, Medicine, Lifestyle, Next visit,

Introduction

HCP confirms data with patient

Enters Screening Questions

(My Profile)

Reviews DSS advice and fact sheets

(expert advice and patient testimonials)

Reviews patient report

(My Plan)

Refers to communication cues (reinforcement,

check barriers, resources)

PATIENT

HCP & PATIENT

Reviews patient report

(My Plan)

Discuss issues identified as problem

HCP

HCP &

PATIENT

Printout action plan

Refers to media in DSS as needed for teaching –

text, video, websites

DSS generates on-line report

Reviews data and recommended goals

Log in WAITING

ROOM

DOCTORS

OFFICE

MINDSET

Epilepsy Decision Support PDA

SIP10-012 (Begley/Shegog)

Top Level Clinic flow

Archos Android 101 Tablet

Delivery Platform …

Interface: My Profile

Interface: My Plan …

Interface: Action Items …

Aims

1. Develop a ‗proof-of-concept‘ of a Management

Information & Decision Support Epilepsy Tool

(―MINDSET‖) to provide real-time self-management

decision-support to patients and health care

providers in specialty neurology clinics.

2. Evaluate the usability and feasibility of this strategy.

Usability: Sample

Table 1. Demographics of sample (n=8) %

Age Range (years) 36 - 53

Gender Male 33

Female 66

Race/ Ethnicity Hispanic 33

White 33

Black 33

Marital Status Complex partial 33

Grand mal 16

Simple / complex partial 16

Petit/grand/simple partial 16

Computer access Home 80

Work 33

Friends 16

Library 16

Don’t Use 16

Computer Use 2-4 hours per day 50

4-6 hours / day 16

6+ hours / day 16

Don’t Use 16

Usability: Sample

Table 1. Percent agreement regarding usability parameters of each MINDSET section

and the total MINDSET program.

MINDSET Usability Parameters

% Agreement by section

My

Seizures

(n=6)

My

Medicine

(n=5)

My

Lifestyle

(n=5)

My

Plan

(n=4)

Total

program

Likability (a lot / a little) – all components of section 83 100 80 100

Ease (Very / kind of) – entire section 100 100 100 100

Time – just right 100 100 100 75 66

Helped me to think carefully about my …

[seizures/meds/lifestyle] 100 100 100 100

Helped me to think carefully about how I manage …


Will help me talk to my doctor or nurse about my …


Help with better management 100

Trustworthy / credible 100 100

I knew and / or understood most of the content 100 100 100 100

I knew and / or understood most of the words 100 100 100 100

I needed help to answer questions in this section 33 75 40 50

Tell other patients to use MINDSET 100

More useful than other surveys used in the clinic 100

More useful than other seizure programs 100

Would use again in the clinic visit 100

Would tell another patient to use this program 100

Benefits

1. Patients rated MINDSET highly on most usability parameters: ease, likeability, credibility, understandability, appeal.

2. They appreciated the opportunity to thoroughly review their epilepsy management…

3. … to receive advice …

4. …and to organize their thoughts prior to the clinic encounter.

“The information and seizure history for the doctor is great…”

“ I love the advice sections

“Helped condense my thought and organized any questions I might have.”

“It makes me look @ the probs in my lifestyle/mood.”

“…the advice sections were really useful for me”

“Opportunity to remember everything to discuss with doctor”

“Very helpful in condensing my thought and organized any question I might have to the physician.”

Barriers

2. When patients required assistance it was due to technical difficulties delayed system responsiveness (rather than the need to clarify questions).

“Questions seemed to have repeated. Lump these similar questions together”

Table 3. Percent agreement regarding functional components Describe how you feel about each of the elements of MINDSET … % Agreement

Like entire program 100

Like the colors 100

Like the buttons and slider bars 50

Like the hand held device 100

3. Patients advocated the use of MINDSET but suggested the need for patience for data entry due to the extensive data input.

1. Patients reported that the questions (behavior and self-efficacy) seemed repetitive.

“Its fine, it’s going to take time and patience. Some people will like it and some won’t; that’s the way things are. But for the most part it does work. I believe in patience and what this can do for people.”

Study alternative hypotheses Usability HA: Patients and HCP’s who use “MINDSET” will rate it positively (>60%) on parameters of ease, acceptability, credibility, and interest, feature ratings, user problems. Feasibility HA: The “MINDSET” program will be acceptable and usable within the context of the clinic visit including perceived time-on-task, and minimal disruption to usual care activities. Correspondence HA: Within a clinic visit MINDSET cues will correlate highly (> 0.7) with actual patient-provider communication. Impact HA: Patients who use MINDSET will report discussion of salient treatment factors, acceptable physician communication, and shared control of management, and improved attitudes toward the use of computers for learning or health care.

Feasibility: Ongoing

Decision-support shows promise in facilitating the:

• Operationalization of self-management constructs for screening, management, and education

• Application of clinical guidelines

• Usability data indicates potential for clinic use & patient-provider encounter

• Feasibility under study

Conclusions

[email protected] [email protected]

mindset: management information & decision support...

Documents