PROMIS Good (+), BAD & UGLY (-)

PROMISGood (+), 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 well-being) 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 • 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 • 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 • 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 sentíintranquilo/a • Inquieta (word used for uneasy in our region)

Fatigue • How much were you bothered by your fatigue on average? • En quémedida la molestó el agotamiento en promedio? • In what measure did it bother the fatigue on average? Should read: En promedioquetanto le molesto el agotamiento.

Emotional Support • I have someone who will listen to me when I need to talk • Tengoquien me escuchecuandonecesitohablar • Leaves out the someone who • Should Read: Tengoquien a alguien me escuchecuandonecesitohablar

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: tbadger@email.arizona.edu

PROMIS Good (+), BAD & UGLY (-)