PROMIS
Good (+), BAD & UGLY (-)
Terry Badger, PhD, RN, PMHCNS-BC, FAAN
Professor and Director, Community and Systems
Health Science Division
College of Nursing
Professor, Department of Psychiatry
University of Arizona
Purpose
• Describe experience of using PROMIS
measures within context of study of
Latinas with breast cancer and their
supportive partners (i.e., intimate
partner, family members, friends)
• Stimulate discussion of the pros and
cons of using the PROMIS
Context: Study Purpose
• Testing the effectiveness of two
culturally-sensitive expedient
psychosocial interventions to
improve quality of life (psychological,
physical, social and spiritual wellbeing) for Latinas with breast cancer
and their supportive partners
Funded by American Cancer Society
Design
• Randomized clinical trial design
• Measurement at 4 points in time:
– Baseline, after 8 week intervention
– 2- and 4-months post intervention
– Total time in study 6 months
• All interventions and measurements
over the telephone
• All materials provided in either
English or Spanish
Latina Survivors Sample
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Average age is 49 years
All women and all Latina
52% married/partnered
Household Income: 80% <$30K year
Education:67% < High School
Employment:
– 32% unemployed but seeking
– 42% disabled; unable to work
Cancer Specifics
• 42% had complete mastectomy
– Only 2% breast reconstruction
• 40% Stage 3 and 4
• Majority have combination of
chemotherapy, radiation, Tamoxifin
– 58% in chemotherapy
• 80% do not participate in support
groups, counseling or take
antidepressants
Supportive Partners
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64% were female relatives
Average age 41 years
Averaged 3+ children at home
Household Income: 57% < $30K
Education: 52% < High School
Employment: 64% employed
85% do not participant in support
groups, counseling or take meds
Assessment Options
• Advantages– two options-short form and
computerized adaptive test
– Based on item response theory
– Compare across studies-going forward
– Website good, people helpful
– Short instruments
– Scoring manuals available
– New instruments all the time
Options: Bad-Challenges
– CAT not ok for my population
– My thinking- drifts into Ugly
• All subjects should get same questions
• Using new instruments-makes comparison
across my own studies difficult
• Lack of clear thresholds –harder to calculate
T scores in my head
• According to Pilkonis et al. (2011), less than
10% of testing samples were Hispanic
PROMIS Measures
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Depression
Emotional and Informational Support
Anxiety (not as reliable as STAI)
Global Health
Social Isolation
Fatigue
Measures
• Psychological Well Being
– Depression
• 20 item Center for Epidemiological Studies
Depression Scale (.92; .90)
• 8 item PROMIS (.95; .92)
• Correlation between instruments
– Survivors(r=.85, p<.000)
– Partners (r=.78, p<.000)
– Anxiety, stress, positive and negative
affect
Poor Translations
• Anxiety
– I felt uneasy
– Me sentí intranquilo/a
• Inquieta (word used for uneasy
in our region)
Fatigue
• How much were you bothered by
your fatigue on average?
• En qué medida la molestó el
agotamiento en promedio?
– In what measure did it bother the
fatigue on average?
Should read: En promedio que tanto le
molesto el agotamiento.
Emotional Support
• I have someone who will listen to me
when I need to talk
• Tengo quien me escuche cuando
necesito hablar
– Leaves out the someone who
• Should Read: Tengo quien a alguien
me escuche cuando necesito hablar
Bad to Ugly
• Translations not region specific
• Sometimes just very poor
– Translated from English exactly
– Question linguistic and cultural
equivalency
– To make reliable and valid had to redo
some translations
Conclusions
Reliable instruments-good idea in theory
? Validity still needs work
Particularly Spanish translations
Some reviewers are pretty jazzed about the
promise of PROMIS
? Wisdom of ‘forcing’ investigators to stop
using tools that have stood the test of
time
Perhaps wisdom in compromise?
Thank You
Contact:
[email protected]
nursing.arizona.edu
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Terry Badger