Outcomes of Targeted, Tailored Outreach to Older Adults Affected by Cancer and their Family Caregivers Paula Klemm, PhD, RN, OCN Veronica F. Rempusheski,

Outcomes of Targeted, Tailored Outcomes of Targeted, Tailored Outreach to Older Adults Affected by Outreach to Older Adults Affected by Cancer and their Family CaregiversCancer and their Family Caregivers

Paula Klemm, PhD, RN, OCNPaula Klemm, PhD, RN, OCNVeronica F. Rempusheski, PhD, RN, FAAN, FGSAVeronica F. Rempusheski, PhD, RN, FAAN, FGSA

Janet Teixeira, MSS, LCSWJanet Teixeira, MSS, LCSWClaudine Jurkovitz, MD, MPHClaudine Jurkovitz, MD, MPH

Wei Zhang, MSWei Zhang, MSJessica R. Perry, MHPJessica R. Perry, MHP

Marissa Alligood-Merson; Amy ExnerMarissa Alligood-Merson; Amy Exner

September 14, 2012: CANS Conference, Washington, D.C.September 14, 2012: CANS Conference, Washington, D.C.

This project (Academic-Community-Clinical Engagement for Support and Successful outcomes – ACCESS) was supported by grants from the National Center for Research Resources - NCRR

(5P20RR016472-12) and the National Institute of General Medical Sciences - NIGMS (8 P20 GM 103446-12) from the National Institutes of Health. 9/3/09-9/2/12

College of Health SciencesSchool of Nursing

Acknowledgment

Research Team MembersResearch Team Members

Paula Klemm, PhD, RN, OCN, Professor, UD School of NursingVeronica Rempusheski, PhD, RN, FAAN, FGSA, Professor, UD School of NursingJanet Teixeira, MSS, LCSW, Executive Director, Cancer Care Connection (CCC)Claudine Jurkovitz, MD, MPH, Director of Operations, Christiana Care Center for Outcomes Research (CCOR) Wei Zhang, MS Biostatistician, CCORJessica Perry, MHP, Cancer Resource Coach©, CCCMarissa Alligood-Merson; Amy Exner; Research Assistants

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Presentation OutlinePresentation Outline• Background & Significance• Purpose• Building & sustaining research team• Hypothesis• Methods• Measures• Data Analysis• Results• Conclusion

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BackgroundBackground• Cancer is the 2nd most common cause of death in

the US. In 2012, ~ 1.6 million new cancer cases will be diagnosed in the US & >577,000 people will die of this disease (Cancer Facts & Figures, 2012).

• Increasing age is a risk factor for most types of cancer (i.e. most often a disease of older people)

• Gaps in communication between HC professionals & the community to meet the social, economic & cultural needs of persons with cancer.

• Focused outreach is needed to support persons affected by cancer & their family caregivers.

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DE is among the top 10 states in # of persons who get cancer

DE is ranked 11th in cancer death rates

8 cancer clusters identified in Delaware: 6 in New Castle County 1 in Kent County 1 in Sussex County

~13% of DE’s population is 65+ years old

By 2030, DE a top 10 state by age: older adults projected to comprise 30% of population Largest % in 85+ y/o


Background Background

New Castle County

Kent County

Sussex County Most growth of elderly

(>200% from 2000)


Background Background

SignificanceSignificance• Older adults with cancer may receive the best

cancer treatment, but lack awareness about where to find answers to everyday economic, lifestyle & social concerns.

• Aging Americans (who have higher rates of cancer) will benefit from partnerships between community organizations & researchers to meet psychosocial & informational needs.

• Of crucial relevance are the economic, healthcare & psychological benefits that can result from this partnership.


PurposePurpose

Evaluate outreach strategies using a community-based participatory research (CBPR) approach to older adults and their family caregivers in Delaware’s eight (8) cancer clusters.


Project AimsProject Aims

1. Expand outreach to older adults affected by cancer and their family caregivers in Delaware

2. Evaluate outreach to older adults affected by cancer and their family caregivers in Delaware

3. Develop a model to sustain outreach to older adults affected by cancer and their family caregivers in Delaware.


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HypothesisHypothesis

Tailored and targeted outreach to older adults and their family caregivers in Delaware’s 8 cancer clusters will increase the number of telephone calls to Cancer Care Connection (CCC) from older adults affects by cancer and their family caregivers.


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The Research TeamThe Research Team

• Partner # 1:• University of Delaware,

School of Nursing:• Researcher #1:

Expertise in oncology and recruitment in the community

• Research #2: Expertise in gerontology and community outreach

• Partner #2: – Cancer Care

Connection: with large multi-year database (iCarol) http://www.cancercareconnection.org/

• Partner #3: – Christiana Care Center

for Outcomes Research: large data base & statistical experts http://www.christianacare.org/CenterforOutcomesResearch


BackgroundBackground

Cancer Care ConnectionCancer Care Connection

Telephone-based support to persons affected by cancer including the patient and their caring circles

In 2008, of 500 calls received @ CCC, estimated that <31% were from or for older adults


Methods: Methods: Community-Based Participatory Community-Based Participatory

Research Research (CBPR)

CBPR principles:Start at the community level – stakeholders

Emphasize & build on community strengths & resources

An authentic self & dialogue dominate


Role of The Steering Role of The Steering CommitteeCommittee

Six community stakeholders met quarterly to:

o Guide the researchers in expanding outreach to the elderly with cancer in Delaware

o Identify individuals (e.g., residents, family caregivers, employees) at older adult sites (nursing homes, assisted living facilities, senior centers) located in the 8 Delaware cancer clusters

o Engage these individuals collectively & individually to generate additional recommendations for outreach

o Participate in outreach strategies


MethodsMethods

Outreach strategies recommended by the community stakeholders (i.e., the Steering Committee) were:

– Delivered in English and Spanish….– To 67 sites (senior centers, assisted living

facilities, community centers, nursing homes, senior sporting events)….

– In Delaware’s 8 cancer clusters


MeasuresMeasuresiCarol caller database developed by CCC

Electronic form that guided caller intake and included:Caller demographics (age, gender, relationship to

patient, location)Patient demographics (age, gender, insurance type,

employer)Disease related information (diagnosis, type of

cancer)Call/case description (problem presented,

assessment, intervention, referral)


ProceduresProceduresiCarol databaseiCarol database

• De-identified data transferred to CCOR pre-outreach (9/2/2009); cleaned & organized for analysis

• Subcategorized 65+ age item to increase specificity by decades

• De-identified data transferred to CCOR post-outreach (5/31/2011); cleaned & organized for analysis


ProceduresProceduresOutreachOutreach

Campaign 2nd Quarter

3rd Quarter

4th Quarter

5th Quarter

Senior Centers (began with Newark Senior Center, NCC)

Preparation & pilot

Implementation

continued continued

Nursing Homes &

Preparation Pilot Implementation

continued

Assisted Living Preparation Pilot Implementation

continued

Hispanic & nursing communities

- Preparation Pilot Implementation

General community

- Preparation Pilot Implementation

Campaign phases: preparation, pilot, implementationStrategies: Developed outreach data collection form; contact form; journaling; activities inserted into Goggle DocsActivities: E-mail/phone/letter contacts, visits, radio, TV, facebook, twitter; health/community fairs; special interest grps; practices/offices; organizationsCollege of Health Sciences

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Outreach Campaign PhasesOutreach Campaign Phases

I. Preparation phase • Create pilot plan with Steering Committee

members• Develop timeline for pilot delivery• Identify and obtain tools – create materials

(flyers, posters, giveaways, brochures, etc.)• Determine distribution channels within campaign• Develop media plan


Outreach Campaign PhasesOutreach Campaign Phases

II. Pilot Phase• Deliver outputs as identified with Steering

Committee members: Distribute materials, presentations, press releases, website, other media

• Evaluate campaign effectiveness

III. Implementation Phase• Approach & schedule other identified locations

within campaign• Deliver outputs for each location


New Castle

County

6 Cancer Clusters

Sites: N= 45

• 14 NH

• 9 ALF

• 22 SC

Kent County

1 Cancer Cluster

Sites: N=14

• 6 NH

• 4 ALF

• 4 SC

Sussex County

1 Cancer Cluster

Sites: N= 9

• 2 NH

• 2 ALF

• 1 NH/ALF

• 4 SC

Delaware Cancer Clusters & 68 Outreach SitesDelaware Cancer Clusters & 68 Outreach Sites

Key:NH = Nursing Homes ALF =

Assisted Living Facilities

SC = Senior Centers NH/ALF = combines NH &

ALF


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Distance note:85 miles from Newark (NCC) to Lewes (SC)

Results: Results:

Between 9/3/09 & 5/31/11, CCC received 725 calls from persons in 33 states, Washington D.C., & Canada Compare to baseline, 650 calls received

between 4/2/08 & 9/2/09

• Results of comparison to baseline: Tables 1-4


Table 1. Patient’s Table 1. Patient’s ageage

Among those who called after Sept. 3, 2009:Age 65-75: 56 (7.7%); Age 76-85: 25 (3.5%); Age 86-95: 10 (1.4%)Age ≥65 (not specified): 67 (9.2%)

Table 2. Patient’s GenderTable 2. Patient’s Gender


Table 3. Five most frequent call categoriesTable 3. Five most frequent call categories

Figure 1: Most frequent reasons for calling CCC:

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Table 4: Five most frequent call categories by age before & after outreach

ResultsResults

Targeted, tailored outreach significantly increased access of, and use by older adults affected by cancer and their family caregivers to a telephone-based support program (p = <.0001)

Hypothesis supported


ConclusionsConclusions

This study advanced knowledge about targeted, tailored outreach using a CBPR approach AND about the optimal use of a telephone-based support service by older adults affected by cancer and their caregivers


ImplicationsImplicationsResearch

Informational needs of older adults with cancer & their family caregivers are not being met.

States with high cancer rates are projected as possible testing sites for the ACCESS Outreach Sustainability Model.


Questions?Questions?


Conclusions: Impact of ACCESS grant Conclusions: Impact of ACCESS grant on Cancer Care Connectionon Cancer Care Connection

ActivityActivity1. Staff hires

2. Access to communication experts

3. Community exposure

4. Engagement

5. Evaluation

6. Leveraged ACCESS grant to obtain additional funding

7. Marketing materials

ImpactImpact1. Expanded needed resources &

timely2. UD OCM advice on marketing

materials3. Multi-media message of CCC

services to greater audience 4. Re-energized staff & BOD; hope &

enthusiasm; vote of confidence5. Quantified & added electronic

access to caller satisfaction survey6. Positive responses to requests for

$ to maintain & build on NIH-funded outreach >$190K

7. ACCESS-funded brochures, bags, etc


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Contextual Antecedents Phase I: Identification of Individual Attributes

“who”

Phase II: Identification of System Attributes

“what” & “where”

Phase III: Implementation“when” & “how”

Phase IV: Outcomes

Characteristics of Population of Interest -Live in Cancer clusters-System Structure -Senior Centers -Assisted Living Facilities -Nursing Homes-Age-Potential for cancer diagnosis

Characteristics of Person/Organization Providing Outreach -Knowledgeable about topic of interest-Bilingual-Persistence-Intuitive-Articulate-Good interpersonal skills-Resourceful-Flexible-Seizes opportunities/maximizes opportunities-Credibility-Mission-focused

-Environment -Institution -Community -Culture, race or ethnic group -Language -Beliefs-Activity level of population of interest -Sedentary -Action-oriented-Geography & transportation-Networks-Resources -People -Money -Marketing materials-Educational background-Technology available

-Stakeholders-Entry structural rules & process-Power structure & process-System entry points-Layers of access -Complexity -Privacy -Security -Trust-Vulnerability of population of interest-Visibility of population of interest-Perceived need

-Engagement-Interaction-Presentation-Timing of encounters-Matching schedules

Population of Interest Accesses Organization

Population of Interest Receives Needed Services & Resources

FEEDBACK LOOP

KEY Roadblock necessitating feedback loop & return to previous phase Two-way communication between phases

Financial Characteristics-Organizational operations -Funding-Sustainability

Recognition of Organizational Branding

Recognition of Organizational Mission

FEEDBACK LOOP

ACCESS Outreach Sustainability Model

Outcomes of Targeted, Tailored Outreach to Older Adults Affected by Cancer and their Family Caregivers Paula Klemm, PhD, RN, OCN Veronica F. Rempusheski,

Documents

types of cancer

new cancer cases

cancer resource coach

best cancer treatment

higher rates of cancer

national institutes

disease cancer facts

national center