scholarly journals Proposal to extend the PROMIS® item bank v2.0 ‘Ability to Participate in Social Roles and Activities’: item generation and content validity

2020 ◽  
Vol 29 (10) ◽  
pp. 2851-2861
Author(s):  
Lisette M. van Leeuwen ◽  
Sietske J. Tamminga ◽  
Margarita Ravinskaya ◽  
Astrid de Wind ◽  
Elisabeth A. Hahn ◽  
...  
Keyword(s):  
Social Participation ◽  
Content Validity ◽  
Large Scale ◽  
Social Roles ◽  
Item Bank ◽  
International Classification Of Functioning ◽  
Measurement Information ◽  
Item Generation ◽  
Expert Review ◽  
Patient Reported

Abstract Purpose Previous research indicated that the Patient-Reported Outcomes Measurement Information System (PROMIS®) item bank v2.0 ‘Ability to Participate in Social Roles and Activities’ may miss subdomains of social participation. The purpose of this study was to generate items for these missing subdomains and to evaluate their content validity. Methods A three-step approach was followed: (1) Item generation for 16 International Classification of Functioning Disability and Health subdomains currently not covered by the item bank; (2) Evaluation of content validity of generated items through expert review (n = 20) and think-aloud interviews with a purposeful sample of people with and without (chronic) health conditions (n = 10), to assess item comprehensibility, relevance, and comprehensiveness; and 3) Item revision based on the results of step 2, in a consensus procedure. Results First, 48 items were generated. Second, overall, content experts indicated that the generated items were relevant. Furthermore, based on experts’ responses, items were simplified and ‘participation in social media’ was identified as an important additional subdomain of social participation. Additionally, ‘participating in various social roles simultaneously’ was identified as a missing item. Based on the responses of the interviewed adults items were simplified. Third, in total 17 items, covering 17 subdomains, were proposed to be added to the original item bank. Discussion The relevance, comprehensibility and comprehensiveness of the 17 proposed items were supported. Whether the proposed extension of the item bank leads to better psychometric properties of the item bank should be tested in a large-scale field study.

scholarly journals Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Heidi Anttila ◽  
Susanna Tallqvist ◽  
Minna Muñoz ◽  
Sanna Leppäjoki-Tiistola ◽  
Outi Mäkitie ◽  
...  
Keyword(s):  
Skeletal Dysplasia ◽  
Content Validity ◽  
Target Population ◽  
Self Report ◽  
International Classification Of Functioning ◽  
Measurement Information ◽  
Health Functioning ◽  
Core Set ◽  
Patient Reported ◽  
The Face

Abstract Background Little is known about the spectrum of everyday challenges that people with skeletal dysplasia face because of their health and functioning. We aimed to identify factors related to health, functioning and disability in people with skeletal dysplasia, and their challenges with accessibility in order to form a self-reported questionnaire for national data collection. The comprehensive musculoskeletal post-acute core set of the International Classification of Functioning, Disability and Health (ICF) was used as a framework. Methods An iterative, participatory and qualitative process was used to formulate a questionnaire. Items were searched from Patient-Reported Outcomes Measurement Information System and from other self-report instruments, additional items were formulated using ICF linking rules. Expert panels from the target population assessed the face and content validity in thematic interviews. Results The questionnaire demonstrated its relevance, comprehensiveness and feasibility for people with skeletal dysplasia. The ICF linkages showed the contents’ correspondence to the construct. Expert panels added 15 categories and one on chapter level to the core set and confirmed content validity. The final survey covers 86 ICF categories and 173 ICF-linked items that were grouped to 33 questions. Conclusions The content of the questionnaire proved to be sufficiently valid for people with skeletal dysplasia. It can be used to explore their health, functioning, disability and accessibility to develop care and rehabilitation policies, to plan services and to provide information to various parties involved.

scholarly journals Patient Reported Outcomes Measurements Information System in Stroke Patients in Full and Shortened Format

2021 ◽  
Vol 11 ◽  
Author(s):  
Charlotte Lens ◽  
Jelle Demeestere ◽  
Kris Vanhaecht ◽  
Robin Lemmens
Keyword(s):  
Information System ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Social Roles ◽  
Measurement Information ◽  
Stroke Patients ◽  
Patient Reported ◽  
Health Domains ◽  
Measurement Information System ◽  
Single Question

Introduction: The modified Rankin Scale (mRS) after 90 days documents outcome in stroke patients, but focusses only on activities of daily living. Here we studied stroke outcome beyond these activities by the Dutch-Flemish version of the Patient Reported Outcomes Measurement Information System (PROMIS) questionnaire.Patients and Methods: We documented the mRS at day 90 in stroke patients who filled out a questionnaire on pain intensity and seven PROMIS domains: physical function, ability to participate in social roles, anxiety, fatigue, depression, sleep disturbance, pain interference. In a subgroup of patients this questionnaire was reduced to one overall question per PROMIS domain. We correlated these findings with the mRS.Results: We received 102 questionnaires and identified physical function as the most affected PROMIS domain. The strongest correlation with mRS was found for the health domains of physical function (ρs = 0.70, p < 0.001) and ability to participate in social roles (ρs = 0.61, p < 0.001). The other domains with substantial proportions of patients with worse scores compared to the general population (19–44%) correlated weakly with the mRS. We identified a strong correlation between the single question per health domain and the overall score per PROMIS domain.Discussion and Conclusion: PROMIS better reflects the overall health status of stroke patients beyond functional outcome as measured by the mRS. Simplification of the questionnaire with a single question per PROMIS domain could potentially replace the full questionnaire, but needs further validation.

scholarly journals Cross-cultural adaptation to Portuguese of a measure of satisfaction with participation of the Patient-Reported Outcomes Measurement Information System (PROMIS(r))

2015 ◽  
Vol 37 (2) ◽  
pp. 94-99
Author(s):  
Maria Cristina Lima e Silva ◽  
Tânia Maria da Silva Mendonça ◽  
Carlos Henrique Martins da Silva ◽  
Rogério de Melo Costa Pinto
Keyword(s):  
Information System ◽  
Cultural Adaptation ◽  
Patient Reported Outcomes ◽  
Item Bank ◽  
Self Report ◽  
Measurement Information ◽  
Outcomes Measurement ◽  
Patient Reported ◽  
Measurement Information System ◽  
The Impact

Background: Mental disorders often impair functioning in several areas of life and lead to unhappiness and suffering that may affect health-related quality of life (HRQoL). Satisfaction with participation is an indicator of HRQoL, and its measurement by patients reflects the impact of disease on their social, emotional and professional life. The Patient-Reported Outcomes Measurement Information System (PROMIS(r)) offers an item bank based on item response theory. This system provides efficient, reliable and valid self-report instruments of satisfaction with participation, a measure that is both scarce and useful in the assessment of mental disorder outcomes.Objective:To cross-culturally adapt the PROMIS(r) satisfaction with participation item bank to Portuguese.Methods:Cross-cultural adaptation followed the Functional Assessment of Chronic Illness Therapy (FACIT) multilingual translation method and was achieved through steps of forward and backward translations, review by bilingual experts (one of them a native of Portugal) and pretesting in a group of 11 adult native Brazilians. Instrument adaptation followed a universal approach to translation, with harmonization across languages.Results: Equivalence of meaning was achieved. As two of the 26 translated items, which asked about leisure and social activities, were not understood by less educated participants, an explanation in parentheses was added to each item, and the problem was solved. All items were appropriate and did not cause embarrassment to the participants.Conclusions: The satisfaction with participation item bank is culturally and linguistically suitable to be used in Brazil. After the pretest is applied in Portugal and in other Portuguese-speaking countries, the same instrument will be ready to be used in multinational studies.

scholarly journals Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure

Thorax ◽  
2017 ◽  
Vol 73 (1) ◽  
pp. 7-12 ◽  
Author(s):  
Victor D Dinglas ◽  
Caroline M Chessare ◽  
Wesley E Davis ◽  
Ann Parker ◽  
Lisa Aronson Friedman ◽  
...  
Keyword(s):  
Critical Care ◽  
Respiratory Failure ◽  
Acute Respiratory Failure ◽  
Family Members ◽  
International Classification Of Functioning ◽  
Future Research ◽  
Measurement Information ◽  
Patient Reported ◽  
Specific Outcome ◽  
Strongly Agree

BackgroundThere is heterogeneity among the outcomes evaluated in studies of survivors of acute respiratory failure (ARF).AimTo evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers.MethodsNineteen outcome domains were identified from the National Institutes of Health’s Patient Reported Outcomes Measurement Information System; WHO’s International Classification of Functioning, Disability, and Health; Society of Critical Care Medicine’s Post-Intensive Care Syndrome (PICS); as well as patient, clinician and researcher input. We surveyed ARDS survivors, family members and critical care researchers, 279 respondents in total, using a 5-point scale (strongly disagree, disagree, neutral, agree and strongly agree) to rate the importance of measuring each domain in studies of ARF survivors’ postdischarge outcomes.Measurements and main resultsAt least 80% of patients and family members supported (ie, rated ‘agree’ or ‘strongly agree’) that 15 of the 19 domains should be measured in all future studies. Among researchers, 6 of 19 domains were supported, with researchers less supportive for all domains, except survival (95% vs 72% support). Overall, four domains were supported by all groups: physical function, cognitive function, return to work or prior activities and mental health.ConclusionPatient, family and researcher groups supported inclusion of outcome domains that fit within the PICS framework. Patients and family members also supported many additional domains, emphasising the importance of including patients/family, along with researchers, in consensus processes to select core outcome domains for future research studies.

scholarly journals Evaluation of the Preliminary Validity of Misuse of Prescription Pain Medication Items from the Patient-Reported Outcomes Measurement Information System (PROMIS)®

Pain Medicine ◽  
2019 ◽  
Vol 20 (10) ◽  
pp. 1925-1933 ◽  
Author(s):  
Dokyoung Sophia You ◽  
Jennifer M Hah ◽  
Sophie Collins ◽  
Maisa S Ziadni ◽  
Ben W Domingue ◽  
...  
Keyword(s):  
Information System ◽  
Patient Reported Outcomes ◽  
Pain Medication ◽  
Item Bank ◽  
Community Dwelling ◽  
Pain Clinic ◽  
Measurement Information ◽  
Outcomes Measurement ◽  
Patient Reported ◽  
Measurement Information System

Abstract Objective The National Institutes of Health’s Patient-Reported Outcomes Measurement Information System (PROMIS)® includes an item bank for measuring misuse of prescription pain medication (PROMIS-Rx Misuse). The bank was developed and its validity evaluated in samples of community-dwelling adults and patients in addiction treatment programs. The goal of the current study was to investigate the validity of the item bank among patients with mixed-etiology chronic pain conditions. Method A consecutive sample of 288 patients who presented for initial medical evaluations at a tertiary pain clinic completed questionnaires using the open-source Collaborative Health Outcomes Information Registry. Participants were predominantly middle-aged (M [SD] = 51.6 [15.5] years), female (62.2%), and white/non-Hispanic (51.7%). Validity was evaluated by estimating the association between PROMIS-Rx Misuse scores and scores on other measures and testing the ability of scores to distinguish among risk factor subgroups expected to have different levels of prescription pain medicine misuse (known groups analyses). Results Overall, score associations with other measures were as expected and scores effectively distinguished among patients with and without relevant risk factors. Conclusion The study results supported the preliminary validity of PROMIS-Rx Misuse item bank scores for the assessment of prescription opioid misuse in patients visiting an outpatient pain clinic.

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