SummaryA community-based, counseling program known as the Program to Encourage Active and Rewarding Lives (PEARLS) uses home and other community-based in-person visits and brief followup telephone calls to assist elders with depression and adults with epilepsy and comorbid depression. During these interactions, counselors help these individuals identify and address problems and increase social and physical activities. The program significantly reduced depressive symptoms, improved quality of life and well-being, and reduced hospitalizations in the homebound elderly. It also reduced depression severity and suicidal ideation (thoughts of suicide) and improved emotional well-being in adults with epilepsy and comorbid depression.Strong: The evidence consists of two RCTs—one in homebound elderly individuals and one in adults with epilepsy and comorbid depression. The studies compared key metrics in groups receiving program services and similar groups receiving usual care.
Developing OrganizationsAging and Disability Services and Senior Services of Seattle/King County, WA; University of Washington, Health Promotion Research Center
Aging and Disability Services and Senior Services of Seattle/King County, WA; University of Washington Health Promotion Research Center, Seattle, WA; Regional Epilepsy Center, Harborview Medical Center, Seattle, WA; Evergreen West Seattle, Seattle, WA
Date First Implemented2000
The program was originally implemented with older adults in 2000 and then expanded to serve adults with epilepsy in 2007.
Patient PopulationThe original trial included those ages 60 and older with either minor depression or dysthymia (an ongoing, low-grade depression lasting 2 or more years); most participants were female, lived alone (many in public housing), had an average of four to five chronic conditions, and already received home visitations. Forty-two percent belonged to an ethnic minority. The second trial included adults over the age of 18, with a mean age of 44, who had epilepsy along with major depression, minor depression, or dysthymia. Half of trial participants were female, with 70 percent being unemployed, 40 percent being on antidepressants at baseline, 28 percent having had counseling in the last half-year, and 28 percent being an ethnic minority.
Adults with epilepsy (all ages) are included in the patient population.Age > Adult (19-44 years); Aged adult (80 + years); Vulnerable Populations > Co-occurring disorders; Frail elderly; Mentally ill; Age > Middle-aged adult (45-64 years); Senior adult (65-79 years)
Problem AddressedThe elderly and those with epilepsy often suffer from depression, although the condition remains undiagnosed in many of these individuals.1 When depression has been diagnosed, the traditional separation of medical and mental health services makes getting treatment difficult, especially for homebound seniors. As a result, quality of life often suffers, while hospitalizations, emergency department (ED) visits, and costs increase.
- A common problem among the elderly and people with epilepsy: Nearly 5 million of the 31 million Americans aged 65 and older are clinically depressed, with 1 million having major depression. In primary care practices that systematically screen for depression, 17 to 37 percent of elderly patients have been diagnosed with the disease.1 Depression also affects between 30 and 50 percent of those with epilepsy.2
- Condition often undiagnosed: Primary care providers often fail to diagnose depression in the elderly and those with epilepsy,2 especially when the condition is not severe.3 With the elderly, health professionals may mistakenly think that depression is an acceptable response to the medical, social, and financial challenges that accompany aging.4 Older patients often do not report depressed moods to providers, dismissing these moods as a natural part of aging or living alone, and instead report vague symptoms such as insomnia, anorexia, and fatigue (which providers may not associate with depression).
- Difficulty of accessing treatment when diagnosed: When depression is diagnosed, seniors—especially low-income, homebound individuals—frequently struggle to access mental health services, which are often not available at their primary care provider's office. In-home delivery of psychotherapy can greatly increase access to these services, but few home visitation programs provide such services. Individuals with epilepsy also face challenges in getting treatment for depression, including driving restrictions, physical inactivity, social isolation, and unemployment. In addition, no formal clinical trials of psychotherapeutic or pharmacological depression treatment have been conducted in this population.2
- Negative impact on quality of life, high costs: Untreated depression in the elderly impairs physical functioning, response to medical treatment, and quality of life, and it can lead to more frequent hospitalizations and ED visits.1 Depression in people with epilepsy contributes to functional impairment, unemployment, lower quality of life, and increased risk of suicide (with rates 5 to 25 times higher than in the general population).2 The direct and indirect costs of depression are $43 billion annually in the United States.1
Description of the Innovative ActivityUnder PEARLS, counselors make home or community-based visits and brief followup telephone calls to homebound elders with depression and to adults with epilepsy and comorbid depression. During these interactions, counselors help these individuals identify and address problems, and increase social and physical activities. Key elements of the program include the following:
- Initial referral: Older adults with depression may be referred by case managers working within the area agency on aging, other social service or public housing programs serving the elderly, primary care providers, or the clients themselves. (Those individuals who have previously qualified for comprehensive home visitation services are eligible to participate.) Most referred elderly clients have multiple chronic illnesses, such as diabetes; heart failure; or coronary artery, lung, or kidney disease. Adults with epilepsy and comorbid depression can be enrolled through their neurology clinic or primary care provider.
- Screening and enrollment: The agency uses the nine-item Patient Health Questionnaire (PHQ-9) to screen clients for depression. A brief two-item PHQ-2 screen (the first two-items of the PHQ-9) can also be used as an initial screen in community-based service agencies that serve older adults or adults with epilepsy. Either the PHQ-2 or PHQ-9 can be embedded in existing client assessments. The PHQ-9 is also administered at each in-home session and at the end of the program to track changes in depression scores.
- Home visits: Elderly clients receive six to eight 50-minute in-home sessions over a 19-week period (weeks 1, 2, 3, 5, 7, 11, 15, and 19). Those with epilepsy receive an average of six in-home visits over a 12-month period. In-person visits may also be done at another community location, e.g. senior center, based on the client's preference. Home visits allow the counselors to evaluate the clients' mental health by observing and experiencing their home environments. Longer sessions at the end of the program provide more time to practice problem-solving skills. Ideally, counselors do not perform general case management functions with clients so as to keep the two roles separate. Key aspects of the visits are described below (updated November 2013):
- Problem-solving approach: Many elderly individuals and people with epilepsy feel overwhelmed by unresolved problems, which contribute to their depression. Helping them identify and resolve those problems can reduce and sometimes eliminate depressive symptoms. To that end, counselors use a seven-step approach that includes clarifying and defining a problem, setting realistic goals, generating and evaluating potential solutions (two steps), selecting and implementing a feasible solution (two steps), and evaluating the outcome. During each session, the participant identifies a problem and works through the steps with the counselor's support. During the next session, the pair evaluates the effectiveness of the solution and then identifies and addresses another problem, using the same approach.
- Client-driven strategy: The client selects both the problem and the solution, thus creating a sense of empowerment. Commonly selected goals include improving medical conditions (e.g., relieving chronic arthritis pain); improving relationships with peers and family members; and addressing financial concerns, social isolation, and housing-related issues.
- Social and physical activation: Because increased activity can reduce the severity of depression, counselors work with participants to develop an activity program appropriate for their physical capabilities and preferences. As appropriate, the counselors encourage those clients who are not confined to their homes to use community resources, such as senior centers, parks, recreational programs, and church-based activities. For homebound individuals, they encourage greater activities in and around the house, such as going out to get the mail (rather than relying on a caregiver to do so) or repeatedly lifting soup cans. Counselors encourage participants to engage in pleasant activities (shown to reduce the symptoms of depression) and provide a list of more than 200 possible activities, such as gardening, looking at pictures of grandchildren, or taking a bath.
- Clinical supervision: The program clinical supervisor (typically a psychiatrist) reviews and discusses all cases with counselors at depression management team sessions that occur weekly to monthly, depending on the caseload. For clients who do not show continued improvement, their primary care physician is contacted to recommend additional treatment options. Each case requires roughly 10 minutes of review and discussion.
- Followup: After the home visits end, counselors make three monthly telephone calls to clients, during which they review problem-solving capabilities, urge participants to continue using the problem-solving approach and to increase their level of physical activity, and administer another depression screen.
References/Related ArticlesSteinman L, Hammerback K, Snowden M. It could be a pearl to you: exploring recruitment and retention of the program to encourage active, rewarding lives with hard-to-reach populations. The Gerontologist (in press). Accepted for publication October 2013.
Steinman L, Cristofalo M, Snowden M. Implementation of an evidence-based depression care management program (PEARLS).: perspectives from staff and former clients. Prev Chronic Dis 2012; 9: 110250. [PubMed]
Farren L, Snowden M, Steinman L, Monroe-Devita M. PEARLS fidelity instrument: development and evaluation. 2013 (unpublished manuscript).
Contact the InnovatorMark Snowden, MD, MPH
Associate Professor, Department of Psychiatry and Behavioral Sciences
University of Washington School of Medicine
Chief of Psychiatry
Harborview Medical Center
325 9th Avenue
UW Box 359797
Seattle, WA 98104
Lesley Steinman, MSW, MPH
Research Scientist and PEARLS Project Manager
Health Promotion Research Center
University of Washington
1107 NE 45th Street, Suite 200
UW Box 354804
Seattle, WA 98105
Fax: (206) 543-8841
Health Promotion Research Center: http://depts.washington.edu/hprc
Innovator DisclosuresSnowden and Steinman reported having no financial interests or business/professional affiliations relevant to the work described in the profile other than the funders listed in the Funding Sources section.
ResultsThe program significantly reduced depressive symptoms, improved quality of life and well-being, and reduced hospitalizations in the homebound elderly. It also reduced depression severity and suicidal ideation (thoughts of suicide) and improved emotional well-being in adults with epilepsy and comorbid depression.
Impact on Older Adults
A randomized controlled trial (RCT) comparing two groups of older adults with mild depression or dysthymia (one receiving PEARLS services and one receiving usual care) found that the program reduced depressive symptoms and hospitalizations and improved quality of life and well-being.
- Significantly fewer symptoms: Six months after the program ended, 43 percent of the 72 PEARLS clients had experienced a 50 percent or greater decline in depression scores (signifying a significant reduction in symptoms), compared with just 15 percent of the 66 clients receiving usual care. More than one-third (36 percent) of participants experienced a large enough reduction in symptoms to no longer meet the criteria for minor depression or dysthymia.
- Fewer hospitalizations: Overall, 27 percent of PEARLS participants required hospitalization during the 6 months after the program ended, below the 35-percent hospitalization rate in those receiving usual care.
- Better quality of life and well-being: Program participants exhibited larger degrees of improvement in emotional and functional well-being than did those receiving usual care, including greater acceptance of illness, greater enjoyment of recreational activities, and higher satisfaction in coping with chronic conditions.
- Low dropout rate: Less than 10 percent of participants dropped out of the program during the initial study, as most clients enjoyed having the therapists visit their home.
Impact on Individuals With Epilepsy
A 2007 RCT comparing two groups of adults with epilepsy and comorbid depression (one receiving PEARLS services and one receiving usual care) found that the program significantly reduced depressive symptoms and suicidal ideation and improved emotional well-being.
Strong: The evidence consists of two RCTs—one in homebound elderly individuals and one in adults with epilepsy and comorbid depression. The studies compared key metrics in groups receiving program services and similar groups receiving usual care.
- Significantly fewer symptoms: Six months after the program ended, 23 percent of the 40 PEARLS clients experienced a 50 percent or greater decline in depression scores (signifying a significant reduction in symptoms), compared with just 7 percent of the 40 clients receiving usual care.
- Less suicidal ideation: Thoughts of suicide declined by 24 percent in PEARLS clients, compared with a 12-percent increase in such thoughts among those receiving usual care.
- Better emotional well-being: The program produced significant improvements in emotional well-being, both right after the program and 6 months after the sessions ended. No improvement occurred in other quality-of-life metrics.
- Persistent effects: Information provided in October 2012 indicates that improvements in depressive symptoms and suicidal ideation persisted at 1 year following the end of the intervention.5
Context of the InnovationThe Health Promotion Research Center (HPRC), affiliated with the Department of Health Services in the University of Washington School of Public Health and Community Medicine, conducts community-based research projects designed to promote the health in middle-aged and older adults in Washington State and around the country. The center collaborated with Seattle's Aging and Disability Services (the local area agency on aging) and Senior Services of Seattle/King County to develop and test the PEARLS intervention with older adults. The Seattle-King County Area Agency on Aging provides in-home and community services to 28,000 older adults and qualified disabled adults. Senior Services serves more than 61,000 older adults annually in the Seattle-King County area. In Washington State, the Aging and Disability Services Administration functions as the State unit on aging. HPRC worked with the Aging and Disability Services Administration to implement regular depression screening for clients receiving in-home and community-based services; to develop the PEARLS Training Kit, an implementation manual for PEARLS; and to have the Centers for Medicare & Medicaid Services approve Medicaid funding for PEARLS through the Community Options Program Entry System (commonly known as the COPES program). In addition, HPRC worked with the University of Washington Center for Healthcare Improvement for Addictions, Mental Illness, and Medically Vulnerable Populations (more commonly known as CHAMMP), the University of Washington Epilepsy Regional Center at Harborview, and Evergreen Healthcare's West Seattle clinic to evaluate the impact of the PEARLS program in adults with epilepsy and depression.
Planning and Development ProcessKey steps in the planning and development process included the following:
- Development of PEARLS model: HPRC researchers and faculty developed the PEARLS model in partnership with managing, supervisory, and clinical staff at Aging and Disability Services and Senior Services of Seattle/King County. This partnership enabled researchers to design the program to be integrated into the infrastructure and organization of local area agency on aging home visitation programs. The team later worked with researchers and staff at CHAMMP, the University of Washington Epilepsy Regional Center at Harborview, and Evergreen Healthcare to implement PEARLS with their patients with epilepsy.
- Staff training: In the original study, the counselors received 2.5 days of training on the PEARLS model, with sessions led by staff at HPRC. Information provided in November 2013 indicates that, now run by staff at the Training XChange, the training has been streamlined to 2 days, or 1 day in-person/1 day online hybrid model. In-person trainings are offered in Seattle and onsite for a minimum of 15 to 20 participants. As of November 2013, roughly 621 people from more than 95 community-based organizations in 21 states and in Canada have been trained on the program. Supplementary, online training modules were released in October 2013 and are now available on the PEARLS Web site.
- Ongoing monitoring: A coordinator manages and reports program data on an ongoing basis, including the number of clients referred to, deemed eligible for, enrolled in, and completing the program; results from baseline and followup questionnaires; and client evaluations.
- Program expansion: The program has been expanded to serve clients with limited English proficiency (including Chinese-, Spanish-, Tagalog-, Korean-, and Vietnamese-speaking older adults who are being paired with counselors who speak their native language) and Russian- and Somali-speaking older adults who are being paired with existing PEARLS counselors working in collaboration with medically trained interpreters. Program eligibility criteria have also been expanded to include homebound older adults beginning at age 50 and those with more serious clinical depression. Several agencies are also offering PEARLS sessions at other locations based on client preferences and accessibility (e.g., senior center, community center)(updated November 2013).
Resources Used and Skills Needed
- Staffing: PEARLS interventionists, or counselors, are typically trained staff at adopting community-based organizations, such as case managers, social workers, nurses, or other frontline staff. PEARLS counselors may work either part-time or full-time. Given the home-based nature of the work, the caseloads are typically smaller than in office-based settings. Although the study used master's level counselors, bachelor's level therapists have since been used by other adopting organizations. Agencies also contract with a psychiatrist or other clinician to provide 2 to 8 hours of clinical supervision to the PEARLS counselors each month, depending on the size of the active caseload. In addition, an agency manager oversees the program and manages program data on an ongoing basis.
- Costs: During the initial study, total costs averaged $630 per participant, including $422 for the home visits, $28 for followup calls, $12 for psychiatric supervision and telephone calls, $87 for psychotherapy quality assurance, and $81 for depression management team sessions. Data from several PEARLS programs across the country suggest an average cost per client of $1,350, based on salary and benefits for a full-time counselor, part-time program administrator, and regular psychiatric supervision. Information provided in November 2013 indicates that in-person training costs average roughly $450 per participant plus travel expenses. Online training modules are $95.
Funding SourcesAdministration on Aging; Centers for Disease Control and Prevention; Substance Abuse and Mental Health Services Administration (U.S.); Washington State Aging and Disability Services Administration
Information provided in October 2012 indicates that additional funders and funding sources include the following: Medicaid HCBS 1915-c Waiver; California Mental Health Services Act; Preventing and Early Intervention (PEI) funding; endowments and foundations; research grants; voter-approved levies; and discretionary funding at adopting agencies.
The U.S. Centers for Disease Control and Prevention's (CDC's) Prevention Research Centers program funded the original research study and dissemination through grants to the HPRC under cooperative agreements U48/CCU009654 and U48/DP000050. The CDC also funded the epilepsy study through the HPRC and a separate epilepsy program. The Washington State Aging and Disability Services Administration provided additional financial support for dissemination and implementation through a Mental Health Transformation State Incentive Grant No. 6 U79 SM57648 from the Substance Abuse and Mental Health Services Administration, and from funding provided by CHAMMP.
Tools and Other ResourcesMore information on the program is available at http://www.pearlsprogram.org. This site includes the PEARLS Training Kit, a free resource that provides background information, detailed instructions, guidance, and forms. The site also has a schedule of upcoming training sessions, which typically cost $400 per person plus travel expenses. Online supplementary training modules are available for $95 as of October 2013 at the PEARLS program Web site. For additional questions about PEARLS training, contact email@example.com or the PEARLS Program, Training XChange, University of Washington, Box 352141, 4000 Mason Road, Suite 304, Seattle WA 98195 (updated November 2013).
The University of Washington HPRC offers free monthly technical assistance calls for organizations that have participated in PEARLS trainings. Contact firstname.lastname@example.org for further information.
The University of Washington HPRC has also developed and pilot tested a "fidelity" instrument to monitor program faithfulness to the original PEARLS model; this tool can potentially be used to assist with counselor supervision as well. Contact email@example.com to obtain a copy of this instrument.
Getting Started with This Innovation
- Identify administrative champion: An administrative champion can help move toward implementation by addressing initial concerns regarding the organizational changes required to begin the process.
- Assemble implementation team: This team implements PEARLS within the organization by training existing staff or hiring additional therapists/counselors, appointing a clinical director to supervise the program, and establishing a protocol for case managers to refer potential clients to the program.
- Create recruitment, referral, and screening processes: Identify and approach social service agencies and public housing entities, primary care providers, clubs, and other organizations that may serve as referral sources. Program adopters should determine which depression screening tools will be used to screen potential clients for depression; many PEARLS programs use the PHQ-2 or PHQ-9, brief, validated tools that a variety of professionals can be trained to use. The PHQ-9 is the recommended depression screening tool to assess clients at program entry, during treatment, and at exit.
- Establish system to assess program: Identify the data that should be collected and analyzed to monitor program effectiveness on an ongoing basis. If possible, set up systems to track hospitalizations before and after program participation so as to document the program's cost savings potential.
Sustaining This Innovation
- Regularly evaluate enrollment to identify barriers: Assess enrollment numbers regularly to identify and address internal or external barriers that prevent clients from being referred to the program.
- Share data on program impact: Evidence of a decline in symptoms or cost savings (e.g., through reductions in hospitalizations or ED visits) can be useful in encouraging would-be funders to support the program.
- Adjust eligibility criteria as needed: If adequate capacity exists, consider admitting younger adults or those with more severe symptoms of depression into the program.
Use By Other OrganizationsTo date, 54 organizations from 14 states have implemented the PEARLS program, including area agencies on aging; community mental health centers; senior centers; and other community-based aging, social, and mental health services organizations. In aggregate, these organizations have served more than 2,000 clients. A complete list of those adopting the program can be obtained on the PEARLS Web site or from the program developer (updated November 2013).
Ciechanowski P, Chaytor N, Miller J, et al. PEARLS depression treatment for individuals with epilepsy: a randomized controlled trial. Epilepsy Behav. 2010 Jul 5. Epub ahead of print. [PubMed]
Chaytor N, Ciechanowski P, Miller J, et al. Long-term outcomes from the PEARLS randomized trial for the treatment of depression in patients with epilepsy. Epilepsy Behav. 2011;20:545–9. [PubMed]
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Service Delivery Innovation Profile
Original publication: August 19, 2009.
Original publication indicates the date the profile was first posted to the Innovations Exchange.
Last updated: November 20, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.
Date verified by innovator: October 31, 2012.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.