Chronic Illness Research:

1

• Chronic Illness Research
• Creating an Evidence Base for Practice
• Pamala D. Larsen, PhD., CRRN, FNGNA
• University of Wyoming

2
Commission on Chronic Illness (1957)

• All impairments or deviations from normal which
  have one or more of the following
  characteristics
• Permanent
• Leave residual disability
• Caused by non-reversible pathology
• Rehabilitation
• Require a long period of care

3

• The Illness Experience
• vs
• The Disease

4
Evidence-Based Practice

• Archie Cochranes call for systematic review of
  the literature
• Birth of the Cochrane Library Database in 1992

5
Cochrane Database

• Prevention and Treatment of Urinary Incontinence
  after Stroke in Adults
• Specialist continence nursing
• Structured assessment management of care

6
Cochrane Database

• Specialist Home-Based Nursing Services for
  Children with Acute and Chronic Illnesses
• No adverse impact on physical health outcomes
• Improved satisfaction with home based care

7
Evidence Based Practice

• Best possible research
• Clinical expertise
• Patient needs
• Porter-OGrady (2006, p. 1)

8
http//www.acestar.uthscsa.edu/Resources_www.htm
9
EBP

• Agency for Healthcare Research Quality (AHRQ)
• Cochrane Library Database
• Task Force on Community Preventive Services
• US Preventive Services Task Force
• Veterans Evidence-Based Research Dissemination
  Implementation Center (VERDICT)

10
National Guideline Clearinghouse

• www.guideline.gov

11

• www.clinicalevidence.com
• British Medical Journal
• United Health Foundation

12
Nursing Interventions Classification (NIC)

• Standardized language
• 514 interventions (2004 edition) for RNs,
  RNs-post basic and nursing assistants

13

• Illness is the night-side of life, a more onerous
  citizenship. Everyone who is born holds dual
  citizenship, in the kingdom of the well and in
  the kingdom of the sick. Although we all prefer
  to use only the good passport, sooner or later
  each of us is obligated, at least for a spell, to
  identify ourselves as citizens of that other
  place
• Sontag (1988, p. 3)

14
Shifting Perspectives of Chronic Illness

• Based on 158 qualitative studies related to
  chronic physical illness evaluated by Thorne and
  Paterson (1998)
• Paterson (2001)

15
Self-Management Programs

• Self-management or disease management programs
• Kate Lorig
• Stanford Patient Education Research Center
• Arthritis

16
Reviews of Self-Management Programs

• Archives of Internal Medicine (2004)
• 71 studies on arthritis, diabetes, asthma,
  hypertension miscellaneous
• Small/moderate benefit on HgbA1c systolic BP
• Minimal effect asthma
• No effect - arthritis

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Reviews (cont)

• Annals of Internal Medicine (2005)
• Diabetes (26) Osteoarthritis (14)
  Hypertension (13)
• HgbA1c decreased by .81
• Systolic reading decreased 5 mm.
• Diastolic reading decreased 4.3 mm.
• Arthritis studies without clinical effects

18
Reviews (cont)

• Patient Education and Counseling (2002)
• Positive results in arthritis self-management
  programs
• Increased knowledge compliance in asthma
• Increased use of self-management behaviors in
  diabetes

19
Chronic Care Model

• Crafted by Edward Wagner colleagues at the
  Group Health Cooperative of Puget Sound in
  Seattle
• Now the primary product of Improving Chronic
  Illness Care, RWJ Foundation

20
Chronic Care Model

• Internal Components
• Self-management support
• Decision support
• Delivery system redesign
• Clinical information systems
• External Components
• Community resources
• Health care organization

21
Utilizing the CCM in Practice

• Two state-level diabetes collaboratives in
  Washington
• North Carolina Diabetes and Control Branch with
  12 community health clinics

22
Heart Failure

• McCauley, Bixby Naylor (2006)
• APN interventions being effective
• Sisk et al. (2006)
• Less hospitalizations greater self-functioning
  (per self-report)

23
State of the Science Review of Nursing
Interventions with HF Patients

• Home based studies
• Multidisciplinary intervention studies
• Extended roles of nurses in HF clinics
• Technology/telephone home interventions

24
Cancer

• Sherwood et al. (2005)
• RCT and cognitive behavioral interventions for
  symptom management
• Doorenbos et al. (2004).
• RCT and cognitive behavioral interventions for
  symptom management

25
Cancer-Related Fatigue

• Stricker, Drake, Hoyer Mock (2004)
• Analysis of 20 experimental studies
• Exercise is the most effective nonpharmacologic
  intervention

26
Technology/Telephone Interventions

• Badger et al. (2005)
• Intervention group experienced decreases in
  depression, fatigue stress
• Coleman et al. (2005)
• Mailed resource kit, alone, appeared to be as
  effective as the telephone social support

27
Wellness Interventions

• Stuifbergen et al. (2003)
• RCT of 113 women with MS
• Two phases of the intervention
• Educational skill-building lifestyle
• Supportive telephone follow-up
• Experimental group improved their self-efficacy,
  increased their health beahviors improved
  aspects of QOL

28
Heart Failure

• Kutzleb Reiner (2006)
• Clark et al. (2006)

29
Chronic Illness Technology

• Women to Women technology based intervention
  via computer to provide support to isolated,
  chronically ill rural women
• Increased QOL

30
Other

• vanServellen, Fongwa DErrico (2006)
• Does continuity of patient care improve quality
  of care?

31

• THE FUTURE

32

• Computer Retrieval of Information
• On
• Scientific Projects
• http//crisp.cit.nih.gov/

33
NIH funded - Pediatric

• Margaret Grey, Yale University
• Assessing Family Management of Childhood Illness
• Family Management Style Survey (FMSS)
• NINR
• 5R01NR008048-03

34
NIH Funded - Pediatric

• Gail Kieckhefer, University of Washington
• Childhood Chronic Illness Enhancing Family
  Capabilities
• Agency for Healthcare Research and Quality
• 5R01HS013384-04

35
NIH Funded - Pediatric

• Suzanne Johnson, Florida State University
• Clinic-based Adherence Intervention for Diabetes
  and Cystic Fibrosis
• National Heart, Lung Blood Institute
• 5R01HL069736-04

36
NIH Funded - Adult

• Alexa Stuifbergen, University of Texas at Austin
• Health Promotion and Quality of Life in Chronic
  Illness
• NINR
• 5R01NR003195-12

37
NIH Funded - Adult

• Karen Schwarz, University of Akron
• Effects of Telemonitoring of Heart Failure
  Patients and Caregivers
• NINR
• 1R15NR008698-01

38
NIH Funded - Adult

• Mary Ellen Michelle Heisler, University of
  Michigan
• Peer Support Congestive Heart Failure
  Self-Management
• National Heart, Lung Blood Institute
• 1R01HL085420-01

39
COPD

• Lynn Reinke, University of Washington
• End-of-Life Caring Needs for Patients with COPD
• NINR
• 1F31NR010055-01

40
Systemic Lupus Erythematosus

• Megan Lewis, Research Triangle Institute
• Tailored Messaging for Couple Chronic Illness
  Management
• National Institute of Arthritis and
  Musculoskeletal and Skin Diseases
• 7R03AR054067-02

41
Chronic Illness

• Clarann Weinert, Montana State University
• Rural Chronically Ill Women Online Support Group
• NINR
• 2R01NR007908-04A1

42
Improving Chronic Illness Care

• A national program of the Robert Wood Johnson
  Foundation since 1998
• Chronic Care Model (CCM) is its core
• Purpose is to better the health of chronically
  ill patients by helping health systems,
  especially those that serve low-income
  populations, improve their care
• http//www.improvingchroniccare.org

43
T32 Training Grants

• Merle Mishel
• Interventions for Preventing and Managing Chronic
  Illness - 2T32NR007091-11
• University of North Carolina at Chapel Hill
• Judith Erlen
• Technology Research in Chronic Critical
  Illness 5T32NR008857-02
• University of Pittsburgh

44
Research Center for Symptom Management UCSF
School of Nursing
45
Oncology Nursing Society

• Smoking Cessation for Women Evidence of the
  Effectiveness of Nursing Interventions
• Evidence-based Interventions for Sleep-Wake
  Disturbances
• Evidence-based Interventions for Prevention of
  Infection

46

• How do we add to the evidence?