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Living With CoMorbidity: A Study of Women with Systemic Lupus Erythematosus

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Title: Living With CoMorbidity: A Study of Women with Systemic Lupus Erythematosus


1
Living With Co-Morbidity AStudy of Women with
Systemic Lupus Erythematosus
  • Gayle D. Weaver, Ph.D.
  • Division of Rehabilitation Sciences
  • School of Allied Health Sciences
  • The Center for Interdisciplinary Research
  • in Womens Health Lecture Series
  • October 3, 2002

2
Acknowledgments
  • Margaret Boro, Nivia Montes, Emily Riffe
  • Telling It Like It Is Advisory Committee
  • 83 Study Participants
  • Texas Gulf Coast Chapter, LFA, Inc.
  • Dean Christiansen (SAHS)

3
Purpose
  • A descriptive study to
  • Examine the physical, psychological, and social
    well-being of women who are living with a
    potentially taxing and life-threatening chronic
    disease, using SLE as an exemplar
  • The main goal was explore the psychosocial needs
    of women with SLE.

4
Rationale
  • Long-term, chronic unpredictable nature
  • Varied symptomatology (physical psychological)
  • Highly variable clinical course w/periods of
    remission relapse
  • Therapeutic side effects
  • Results in considerable disability
  • No cure
  • Leading to
  • Psychosocial adjustment challenges
  • Health care management challenges
  • Higher use of health services, including the most
    costly services (specialists, emergency room,
    etc.)

5
SLE Definition
  • Lupus means wolf erythematosus means redness
    (facial rash resembling the bite of a
    wolf-butterfly rash)
  • Chronic, inflammatory, connective tissue disorder
  • Autoimmune disease the immune system loses its
    ability to distinguish between foreign substances
    in the body and its own healthy cells and tissues
  • Auto-antibodies result in formation of immune
    complexes that build up in the tissues and cause
    inflammation, injury to tissues, and pain

6
SLE Symptoms
  • Affects the skin, joints, kidneys, brain, blood
    vessels, lungs, heart and gastrointestinal tract
  • Extreme fatigue, fever, infections, painful or
    swollen joints, muscle pain, swollen glands, skin
    rashes, unusual hair loss, sun sensitivity, mouth
    sores, depression, anemia, kidney problems,
    pleuritic (chest) pain, pericarditis, seizures,
    etc.
  • Associated diseases include fibromyalgia,
    Raynauds disease, Sjogrens syndrome, heart
    disease, renal failure

7
SLE Etiology
  • Cause remains unknown and no known cure
  • Runs in families, thus having a genetic basis.
  • Triggered by hormonal and environmental factors,
    such as chemical exposures, sunlight, stress,
    certain drugs, viruses, pregnancy, surgery, drugs
    w/sulfur, and infections

8
Treatment
  • Prevention Rest, exercise, avoid excessive sun
    exposure, immunizations, relaxation for stress
    and depression, regular health checkups
  • Medications NSAIDs (joint pain, fever,
    swelling), Steroids (severe inflammation),
    Antimalarials (skin rashes, mouth ulcers, joint
    pain, lung inflammation), Immunosuppressives
    (kidney)
  • Medication side effects weight gain, mood
    changes, bone damage, high blood pressure, artery
    damage, cataracts, diabetes, kidney
    complications, etc.

9
SLE Prevalence Mortality
  • 2 million people in the U.S.
  • Higher in females than males (91)
  • Higher in Black (1250), Hispanic (1500), and
    Asian females
  • Higher mortality at younger ages among Black
    females, as well as Hispanic females
  • Women in southwestern states face a risk of
    mortality at 200 greater those in northeastern
    states (may reflect prognostic rather etiologic
    factors)

10
Methodology
  • Descriptive study using the survey method
  • Convenience sample of 83 women, 21 yrs
  • Recruited through the Texas Gulf Coast Chapter of
    the Lupus Foundation of America
  • Questionnaire was Pre-tested on 8 women from
    diverse backgrounds
  • Face-to-face structured interviews, lasting about
    1½ to 2 hours

11
Variables
  • Physical Psychological Well-being
  • SLE Symptoms
  • Rating of SLE Status
  • Lupus Pain Rating
  • Lupus Stress Rating
  • Other Health Conditions (co-morbidity)
  • Global Physical Health Rating
  • Depressive Symptomatology
  • Global Mental Health Rating

12
Variables
  • Social Support
  • Religious Beliefs
  • Health Services Use
  • Health Providers past 12 mos.
  • Health Services past 12 mos.

13
Results
14
Sample Profile N83
  • Ethnicity 58 White, 25 Black,12 Hispanic, 2
    were Asian, 2 other
  • Marital Status 59 married, 41 not married
    (separated, divorced, widowed, or never married)
  • Education M14.63 76 had 13 yrs of schooling
  • Age Range of 22-76 yrs M47 yrs 70 36-55
    yrs,15 under age 36 16 over age of 55

15
Sample Profile
  • Employment 43 employed full-time or part-time
    57 not working (31 were on disability)
  • Household income 15 50k (N78)
  • Area of residence 46 urban, 34 suburban, 21
    rural

16
Co-Morbidity
  • Other Reported Health Problems M8.2 (out of
    24), range 1-17
  • Commonly Reported Problems GI problems,
    allergies, sinusitus, foot problems, circulatory
    problems, hypertension, fibromyalgia, depression
    (42), glaucoma, osteoporosis, heart problems,
    incontinence (27)
  • Number of medications M10.62, range 1-25 (past
    2 wks)

17
SLE Status Profile
  • Illness Duration Range
  • Told by 42 Rheumatologists, 25 PCP, 33 other
    (dermatologist, endocrinologist, etc.)
  • SLE Symptomatology M7.9 symptoms (of 13)
    experienced during previous month (range 3-12)
  • Common Symptoms Fatigue and fevers, joint pain,
    skin rashes, muscular pain, anemia, digestive
    problems, neurological problems (50)

18
SLE Status Profile
  • SLE Pain Rating M5.7, range 1 (no pain) to 10
    (unbearable pain)
  • SLE Stress Rating 31 very high, 46 moderate
    stress, 23 little or no stress
  • SLE Status Rating 12 Very Stable, 68 Somewhat
    Stable, 21 Not Stable

19
American College Rheumatology Criteria for SLE
Diagnosis(M5.59 criteria, range of 1 to 10 to
make diagnosis)
  • 47 Malar rash
  • 35 Discoid rash
  • 61 Photosensitivity
  • 48 Oral ulcers
  • 82 Arthritis
  • 28 Serositis
  • 28 Renal disorder
  • 22 Neurologic disorder
  • 53 Hematologic disorder
  • 53 Immunologic disorder
  • 93 Positive ANA test

20
Psychological Well-being
  • Mental Health Rating M1.41 (fair) 17 poor,
    40 fair, 30 good, 13 very good/excellent
  • Depressive Symptomatology M16.01, 42 scored at
    or above 16-point cut-off
  • Mental Health Rating M2.54 (good to very good)
    13 poor/fair, 36 good, 32 very good, 18
    excellent

21
Social Well-being
  • Satisfaction w/Help 55 very, 30 somewhat, 15
    a little to not satisfied
  • Adequacy of Help 52 very 32 somewhat, 16 a
    little to not adequate
  • Close Family Friends 5.94 family, 4.78 friends
  • Confidant for Personal Matters 98
  • Confidant for Health Matters 99
  • Main Source of Emotional Support 39 Spouse/SO
  • Main Source of Material Support 43 Spouse/SO
  • Main Source of Informational Support 31 No one
  • Religious Beliefs 78 felt beliefs helped a
    great to cope w/SLE

22
Health Services Use
  • 95 had health insurance
  • All had seen a health provider in last 12 months
  • 84 felt MDs took their concerns seriously
  • 81 felt MDs allowed them to express their
    concerns
  • 53 felt health care definitely met their needs
  • 73 felt health care should be managed by team of
    health providers
  • 87 felt a little to great difficulty in dealing
    with the health care system

23
Health Services UseConventional Health
Providers (M7 of 21 providers in 12 mos.)
  • 87 Primary Care Physician
  • 84 Rheumatologist
  • 84 Opththalmologist/ Optometrist
  • 75 Dentist
  • 63 Obstetrician/
  • Gynecologist
  • 39 Dermatologist
  • 37 Internist
  • 30 Urologist
  • 27 Cardiologist
  • 19 Psychiatrist/
  • Psychologist

24
Health Services UseConventional Health
Services (M5 of 16 services in 12 mos.)
  • 99 Laboratory tests
  • 86 Imaging
  • 77 Non-emergency outpatient care
  • 55 Lupus education programs
  • 45 Emergency room
  • 34 Physical therapy
  • 22 Assistive devices
  • 10 Occupational therapy

25
Correlates of Well-being Socio-demographic
Characteristics
  • Married ? reported higher SLE symptoms and poorer
    SLE status ratings
  • Caucasian ? reported a greater of co-morbid
    conditions
  • Employed ? reported fewer depressive symptoms,
    SLE symptoms, and co-morbid conditions, lower
    pain ratings, lower SLE status ratings, and
    higher physical and mental health ratings
  • Higher income ? reported fewer depressive
    symptoms, higher physical health ratings, and
    lower pain ratings
  • No age and education differences in well-being

26
Correlates of Well-being by Health Services Use
  • Conventional Health Providers and Health Services
    (Note Alternative therapies use not
    significantly related to any well-being variable)
  • SLE symptoms (r.26 r.37, respectively)
  • Other health problems (r.34 r.41,
    respectively)
  • Global physical health rating (r-.28 r-.35,
    respectively)
  • Medications (r.31 r.34, respectively)
  • Lupus pain rating (r.30 r.36, respectively)
  • Lupus stress rating (r-.19 n.s.,respectively)
  • Lupus status rating (r.28 r.32, respectively)
  • Depressive symptomatology (r.25 r.27,
    respectively)
  • Global mental health rating (r-.26 r-.31,
    respectively)

27
Health Services Utilization Socio-demographic
Correlates
  • Conventional Health Providers
  • ? with incomes 50k used fewer providers (6 vs.
    8-9 providers)
  • ? who were working used fewer providers (6.5 vs.
    8 providers)
  • Conventional Health Services
  • ? in rural areas used fewer services (4 vs. 6
    services for city dwellers)
  • ? who were working used fewer services (4 vs. 6
    services)

28
Conclusions
  • Highly educated group, with many married
  • Nearly a third on disability
  • Moderate SLE symptoms (little perceived
    interference w/daily activities)
  • High co-morbidity (little perceived interference
    w/daily activities)
  • High use of health providers and services, but
    low use of alternative therapies
  • High desire for MDs to be knowledgeable about
    alternative health therapies

29
Conclusions
  • Access to health care not a problem
  • Heavy users of the health care system
  • Experiences w/health system appeared to be
    generally positive, although nearly ¾ had some
    difficulty dealing w/health system
  • High desire for MDs to be knowledgeable about
    alternative health care
  • Large percentage at risk for psychological
    distress

30
Conclusions
  • Large percentage experience moderate to high
    stress as a result having lupus (host of other
    health problems)
  • As the number of health problems and
    psychological distress increased, use of health
    providers and services increased
  • Social support was strong in that nearly all had
    access to confidants and close family and friends
  • Reliance on religious beliefs and prayer to cope
    with lupus
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