scholarly journals Validation of Patient-Reported Outcomes Measurement Information System Short Forms for Use in Childhood-Onset Systemic Lupus Erythematosus

2016 ◽  
Vol 69 (1) ◽  
pp. 133-142 ◽  
Author(s):  
Jordan T. Jones ◽  
Adam C. Carle ◽  
Janet Wootton ◽  
Brianna Liberio ◽  
Jiha Lee ◽  
...  
Keyword(s):  
Lupus Erythematosus ◽  
Patient Reported Outcomes ◽  
Measurement Information ◽  
Childhood Onset ◽  
Systemic Lupus ◽  
Outcomes Measurement ◽  
Short Forms ◽  
Patient Reported ◽  
Measurement Information System ◽  
Onset Systemic Lupus Erythematosus

Feasibility of Patient-Reported Outcomes Measurement Information System (PROMIS®) computerized adaptive tests in systemic lupus erythematosus outpatients

Lupus ◽  
2018 ◽  
Vol 27 (10) ◽  
pp. 1591-1599 ◽  
Author(s):  
S Kasturi ◽  
J C Burket ◽  
J R Berman ◽  
K A Kirou ◽  
A B Levine ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Patient Reported Outcomes ◽  
Measurement Information ◽  
Systemic Lupus ◽  
Adaptive Tests ◽  
Outcomes Measurement ◽  
Computerized Adaptive Tests ◽  
Patient Reported ◽  
Measurement Information System

Objective The aims of this study were to assess the feasibility of administering Patient-Reported Outcomes Measurement Information System (PROMIS®) computerized adaptive tests (CATs) to outpatients with systemic lupus erythematosus (SLE). Methods Adults with SLE were recruited during routine outpatient visits at an SLE Center of Excellence. Participants completed 14 PROMIS CATs and provided feedback on their experience. Differences in socio-demographic and clinical characteristics between participants and non-participants were evaluated. Results A total of 204 (86%) of 238 socioeconomically and racially diverse SLE patients completed PROMIS CATs. There were no significant differences between participants and non-participants. Time constraints were cited most frequently as reasons for non-participation. More than 75% of individuals submitted positive comments, including approval of the content and format of questions, and the survey’s promotion of self-reflection. A minority of participants cited challenges, most often related to question phrasing (8%) and technical difficulties (6%). Conclusions The administration of PROMIS CATs was feasible and positively received in a diverse cohort of SLE outpatients. Neither socio-demographic nor disease characteristics were significant barriers to successful completion of PROMIS CATs. PROMIS CATs have great potential for efficiently measuring important patient-centered outcomes in routine clinical care of a wide range of SLE patients.

scholarly journals Translation and Cultural Adaptation of adult PROMIS Physical Function Short Forms into Simplified Chinese

2021 ◽  
Author(s):  
Yueshi Huang ◽  
Xiaoju Zhang ◽  
Yang Yang ◽  
Tingting Cai ◽  
Wen Zhang ◽  
...  
Keyword(s):  
Physical Function ◽  
Cultural Adaptation ◽  
Patient Reported Outcomes ◽  
Measurement Information ◽  
Linguistic Validation ◽  
Outcomes Measurement ◽  
Short Forms ◽  
Simplified Chinese ◽  
Patient Reported ◽  
Measurement Information System

Abstract Background: The Patient-Reported Outcomes Measurement Information System (PROMIS) has been proven to be an effective and efficient measurement tool and has entered its global promotion phase. Our research team was authorized by the PROMIS Health Organization to translate five adult Patient-Reported Outcomes Measurement Information System (PROMIS) physical function short forms (4a, 6b, 8b, 8c, and 8c 7-Day) to ensure the conceptual and semantical equivalence to the source and pretest them in a Chinese population for cultural adaptation.Methods: The translation was conducted following the Functional Assessment of Chronic Illness Therapy (FACIT) methodology, which mainly includes forward translation, reconciliation, back-translation, expert reviews, cognitive testing, and linguistic validation, etc. And cognitive interview was used to pretest the translated items in Chinese patients with cancer and a healthy population.Results: The translation process was relatively smooth, except for some translated versions that slightly altered some word choices or sentence structures. Subsequent pre-testing of the Simplified Chinese short forms showed that clarifying or laying emphasis on the time frame in the instructions was needful, and two sets of response categories and one item stem needed some slight revisions due to cultural or language discrepancies.Conclusion: The translation and linguistic validation of five adult PROMIS physical function short forms into Simplified Chinese have been completed, and field testing, calibration, and psychometric testing are pending.

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