Validation of the Patient-Reported Outcomes Measurement Information System (PROMIS)-57 and -29 item short forms among kidney transplant recipients

Quality of Life Research - The Patient-Reported Outcomes Measurement Information System (PROMIS) aims to address the lack of generalizable and universal measure of patient-reported outcomes to...     

Content validity of Patient-Reported Outcomes Measurement Information System (PROMIS) items in the context of HIV clinical care

Purpose

To assess content validity and patient and provider prioritization of Patient-Reported Outcomes Measurement Information System (PROMIS) depression, anxiety, fatigue, and alcohol use items in the context of clinical care for people living with HIV (PLWH), and to develop and assess new items as needed.

Methods

We conducted concept elicitation interviews (n = 161), item pool matching, prioritization focus groups (n = 227 participants), and cognitive interviews (n = 48) with English-speaking (~75 %) and Spanish-speaking (~25 %) PLWH from clinical sites in Seattle, San Diego, Birmingham, and Boston. For each domain we also conducted item review and prioritization with two HIV provider panels of 3–8 members each.

Results

Among items most highly prioritized by PLWH and providers were those that included information regarding personal impacts of the concept being assessed, in addition to severity level. Items that addressed impact were considered most actionable for clinical care. We developed additional items addressing this. For depression we developed items related to suicide and other forms of self-harm, and for all domains we developed items addressing impacts PLWH and/or providers indicated were particularly relevant to clinical care. Across the 4 domains, 16 new items were retained for further psychometric testing.

Conclusion

PLWH and providers had priorities for what they believed providers should know to provide optimal care for PLWH. Incorporation of these priorities into clinical assessments used in clinical care of PLWH may facilitate patient-centered care.

     

Evaluation of a preliminary physical function item bank supported the expected advantages of the Patient-Reported Outcomes Measurement Information System (PROMIS)

OBJECTIVE: The Patient-Reported Outcomes Measurement Information System (PROMIS) was initiated to improve precision, reduce respondent burden, and enhance the comparability of health outcomes measures. We used item response theory (IRT) to construct and evaluate a preliminary item bank for physical function assuming four subdomains. STUDY DESIGN AND SETTING: Data from seven samples (N=17,726) using 136 items from nine questionnaires were evaluated. A generalized partial credit model was used to estimate item parameters, which were normed to a mean of 50 (SD=10) in the US population. Item bank properties were evaluated through Computerized Adaptive Test (CAT) simulations. RESULTS: IRT requirements were fulfilled by 70 items covering activities of daily living, lower extremity, and central body functions. The original item context partly affected parameter stability. Items on upper body function, and need for aid or devices did not fit the IRT model. In simulations, a 10-item CAT eliminated floor and decreased ceiling effects, achieving a small standard error (< 2.2) across scores from 20 to 50 (reliability >0.95 for a representative US sample). This precision was not achieved over a similar range by any comparable fixed length item sets. CONCLUSION: The methods of the PROMIS project are likely to substantially improve measures of physical function and to increase the efficiency of their administration using CAT.     

Difference in method of administration did not significantly impact item response: an IRT-based analysis from the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative

Purpose

To test the impact of method of administration (MOA) on the measurement characteristics of items developed in the Patient-Reported Outcomes Measurement Information System (PROMIS).

Methods

Two non-overlapping parallel 8-item forms from each of three PROMIS domains (physical function, fatigue, and depression) were completed by 923 adults (age 18–89) with chronic obstructive pulmonary disease, depression, or rheumatoid arthritis. In a randomized cross-over design, subjects answered one form by interactive voice response (IVR) technology, paper questionnaire (PQ), personal digital assistant (PDA), or personal computer (PC) on the Internet, and a second form by PC, in the same administration. Structural invariance, equivalence of item responses, and measurement precision were evaluated using confirmatory factor analysis and item response theory methods.

Results

Multigroup confirmatory factor analysis supported equivalence of factor structure across MOA. Analyses by item response theory found no differences in item location parameters and strongly supported the equivalence of scores across MOA.

Conclusions

We found no statistically or clinically significant differences in score levels in IVR, PQ, or PDA administration as compared to PC. Availability of large item response theory-calibrated PROMIS item banks allowed for innovations in study design and analysis.     

A Patient-Reported Outcomes Measurement Information System Short Form for Measuring Physical Function During Geriatric Rehabilitation: Test-Retest Reliability,Construct Validity,Responsiveness, and Interpretability

ObjectivesTo study the test-retest reliability and measurement error, construct validity, responsiveness, interpretability, and floor/ceiling effects of a Patient-Reported Outcomes Measurement Information System (PROMIS) short form designed to measure physical function in geriatric rehabilitation patients (PROMIS-PF-GR).DesignProspective cohort.Setting and ParticipantsInpatient geriatric rehabilitation patients.MethodsWe evaluated the test-retest reliability by re-administering PROMIS-PF-GR 3 to 5 days after the admission measurement. The intraclass correlation coefficient (ICC) was calculated to determine test-retest reliability; an ICC of ≥0.70 was considered sufficient. Measurement error was established by calculating the standard error of measurement and smallest detectable change. Construct validity and responsiveness were determined by testing a priori formulated hypotheses (criterion: ≥75% hypothesis not rejected). Interpretability was evaluated by calculating the minimal important change using predictive modeling and a global rating as criterion for change. Floor/ceiling effects were established by calculating the percentage patients with the minimum/maximum raw score (criterion: ≤15%) at admission and discharge.ResultsA total of 207 patients participated in the study [mean ± standard deviation age (80 ± 8.3 years), 58% female]. More than one-half of patients (56%) reported to be improved during rehabilitation. The ICC was 0.79 (95% confidence interval 0.70–0.84), the standardized error of measurement was 3.8, and the smallest detectable change 10.6. None of the 4 hypotheses for construct validity were rejected; 2 out of 5 hypotheses for responsiveness were rejected. The minimal important change was 8.0 (95% confidence interval 4.1–12.5). No floor/ceiling effects were found.Conclusions and ImplicationsThe PROMIS-PG-GR showed sufficient test-retest reliability, measurement error, and construct validity. We did not find sufficient evidence for responsiveness, which may be due to the unexplained weak correlation between the PROMIS change score and the Global Rating Scale. We still recommend the use the PROMIS-PG-GR for measuring self-reported physical function in geriatric rehabilitation.     

Match between culture and social support: Acculturation moderates the relationship between social support and well-being of Chinese American breast cancer survivors

Purpose

Social support does not always lead to health benefits; the outcomes depend on the match between the need and the provision of social support. Culture shapes individuals’ preference of social support types (e.g., supportive communication, social companionship, and tangible support). The present study examined how the association between social support and well-being may vary as a function of acculturation among minority cancer survivors.

Methods

One hundred and twenty-three Chinese American breast cancer survivors were invited to complete a questionnaire package.

Results

Findings showed that acculturation moderated the association of social support subtypes with psychological and physical well-being. Higher emotional/information support was associated with better quality of life and less physical symptoms among highly acculturated cancer survivors but more physical symptoms among those who were less acculturated. Tangible support was associated with more physical symptoms among highly acculturated cancer survivors but less physical symptoms among those who are less acculturated. Positive social interaction was associated with better quality of life and less physical symptoms among less acculturated cancer survivors but not associated with quality of life or physical symptoms among their highly acculturated counterparts.

Conclusion

The findings pointed to the significance of acculturation in breast cancer experience among minority women, especially its interplay with social support transactions.

     

Relative to the general US population,chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS)

ObjectivesThe Patient-Reported Outcomes Measurement Information System (PROMIS) allows assessment of the impact of chronic conditions on health-related quality of life (HRQL) across diseases. We report on the HRQL impact of individual and comorbid conditions as well as conditions that are described as limiting activity.Study Design and SettingData were collected through online and clinic recruitment as part of the PROMIS item calibration sample (n = 21,133). Participants reported the presence or absence of 24 chronic health conditions and whether their activity was limited by each condition.ResultsAcross health status domains, the presence of a chronic condition was associated with poorer scores than those without a diagnosis, particularly for those individuals who reported that their condition was disabling. The magnitude of detriment in HRQL was more pronounced for individuals with two or more chronic conditions and could not be explained by sociodemographic factors. Patterns of HRQL deficits varied across disease and comorbidity status.ConclusionThe impact of chronic conditions, particularly when experienced with comorbid disease, is associated with detriments in HRQL. The negative impact on HRQL varies across symptoms and functional areas within a given condition.     

The Chinese and Korean American immigrant experience: a mixed-methods examination of facilitators and barriers of colorectal cancer screening

Objective: Among Asian Americans, colorectal cancer (CRC) is the second leading cause of cancer deaths. Despite strong evidence that screening can reduce CRC-related mortality, fewer Chinese and Koreans receive screening as compared to non-Hispanic whites and blacks. The objective of this study was to examine facilitators and barriers as well as strategies to promote CRC screening in this population.

Design: This study employed a mixed-methods design. We conducted 17 key informant interviews and 12 focus groups in the Washington, D.C. metropolitan area. 120 Chinese and Korean focus group participants, aged 50 to 85, also provided quantitative data through self-administered surveys. All participants were asked to discuss facilitators and barriers of CRC screening, including in relation to culture.

Results: Participants who had a regular physician and doctor’s recommendation for CRC screening were more likely to ever receive a colonoscopy (adjusted odds ratio (aOR)?=?3.51; 95% confidence interval (CI): 1.26, 9.79 and aOR?=?6.61; 95% CI: 2.63, 16.65, respectively). A doctor’s recommendation was also significantly associated with receipt of a fecal occult blood test (FOBT) (aOR?=?4.00; 95% CI: 1.43, 11.15). In terms of barriers, those who reported having no time and not having symptoms were less likely to have a colonoscopy (aOR?=?0.15; 95% CI: 0.03, 0.82 and aOR?=?0.02; 95% CI: 0.002, 0.23, respectively) than those who had time and symptoms. Preventive healthcare was often not viewed as a priority, particularly for those living the‘immigrant life,’ who gave precedence to work. Cultural barriers to CRC screening included language (e.g. limited English proficiency and low health literacy); fear of finding CRC and burdening the family especially children; fatalism; and stigma towards cancer.

Conclusions: Future interventions and programs aiming to increase CRC screening among Chinese and Korean Americans should address both cultural and non-cultural factors that influence CRC screening uptake.     

Understanding the relationship between cognition and death: a within cohort examination of cognitive measures and mortality

Despite several studies demonstrating an independent and inverse association between cognition and mortality, the nature of this association still remains unclear. To examine the association of cognition and mortality after accounting for sociodemographic, health and lifestyle factors and to explore both test and population characteristics influencing this relationship. In a population based cohort of 8585 men and women aged 48–92 years, who had cognitive assessments in 2006–2011 and were followed up till 2016 for mortality, we examined the relationship between individual cognitive tests as well as a global cognition score to compare their ability in predicting mortality and whether these differed by population characteristics. Risk of death was estimated using Cox proportional hazard regression models including sociodemographic, lifestyle and health variables, and self-reported comorbidities, as covariates in the models. Poor cognitive performance (bottom quartile of combined cognition score) was associated with higher risk of mortality, Hazard Ratio?=?1.32 (95% Confidence Interval 1.09, 1.60); individual cognitive tests varied in their mortality associations and also performed differently in middle-age and older age groups. Poor cognitive performance is independently associated with higher mortality. This association is observed for global cognition and for specific cognitive abilities. Associations vary depending on the cognitive test (and domain) as well as population characteristics, namely age and education.     

Measuring patient activation in the Netherlands: translation and validation of the American short form Patient Activation Measure (PAM13)

ABSTRACT: BACKGROUND: The American short form Patient Activation Measure (PAM) is a 13-item instrument which assesses patient (or consumer) self-reported knowledge, skills and confidence for self-management of one's health or chronic condition. In this study the PAM was translated into a Dutch version; psychometric properties of the Dutch version were established and the instrument was validated in a panel of chronically ill patients. METHODS: The translation was done according to WHO guidelines. The PAM 13-Dutch was sent to 4178 members of the Dutch National Panel of people with Chronic illness or Disability (NPCD) in April 2010 (study A) and again to a sub sample of this group (N=973) in June 2010 (study B). Internal consistency, test-retest reliability and cross-validation with the SBSQ-D (a measure for Health literacy) were computed. The Dutch results were compared to similar Danish and American data. RESULTS: The psychometric properties of the PAM 13-Dutch were generally good. The level of internal consistency is good (alpha=0.88) and item-rest correlations are moderate to strong. The Dutch mean PAM score (61.3) is comparable to the American (61.9) and lower than the Danish (64.2). The test-retest reliability was moderate. The association with Health literacy was weak to moderate. CONCLUSIONS: The PAM-13 Dutch is a reliable instrument to measure patient activation. More research is needed into the validity of the Patient Activation Measure, especially with respect to a more comprehensive measure of Health literacy.     

Application of Holter electrocardiography to exercise testing for the group examination of school children: comparison between obese and normal children

Application of Holter electrocardiography to an exercise test for heart function is useful in the group examination of school children. The circulatory responses to a step test among obese boys and girls and control were as follows: 1. Four cases of arrhythmia were detected, of whom 2 cases were discovered during exercise. ST-segment depression of 0.1 mV or more during and after exercise was recognized in 29 cases, 27 of the junctional- and 2 of the sagging slope, with a higher percentage in obese girls than in normal girls. 2. Serial ECG records during the procedure, performed for all children with the same single-step test, showed differences in the circulatory responses among the test groups. The load was estimated to be 76-86% of the maximal heart rate predicted by Cummings, with obese and girl groups being higher than other groups. The comparison revealed that the heart rate (HR) responses to exercise done by the boys increased faster than those by the girls at 1 minute after exercise. There were differences between obese and control and between boys and girls in HR at recovery, and also in HR before and 4 minutes after exercise between two sexes, which findings agree with other reports. 3. Concerning anthropometric factors, either the skinfold thickness or the obesity index was related to the HR at the peak of the exercise as well as immediately after it and to the half time. By contrast, the arm muscle diameter was found unrelated to the HR. Using this method, applied these combination of Holter ECG and step test to a group examination, we got ECG data for 254 subjects, 97.5% of which were suitable for analysis. We found this method to be effective for detecting ECG changes and for determining HR responses to exercise. This method is safe, simple, and inexpensive and is applicable to examination not only for school children but also for different population groups, for the estimation of circulatory responses.     

Stability of tactile defensiveness across cultures: European and American children's responses to the Touch Inventory for Elementary school aged children

Screening and assessment for single and discrete sensory systems, such as screening for tactile defensiveness, can provide valid information for identifying sensory processing dysfunction of children. Tactile defensiveness may be considered to be a specialized type of what was previously called a sensory integrative disorder and now is termed a sensory modulation disorder. The current study was designed to examine further the phenomenon of tactile defensiveness, particularly the stability of the concept, across different cultures. In this study, the test scores of 28 European children (16 girls and 12 boys of three different nationalities) on the Touch Inventory for Elementary School Aged Children (TIE) were collected and analysed (Royeen and Fortune, 1990). The TIE scores of the European sample were compared with that of the American sample in the original TIE study (Royeen and Fortune, 1990). Results revealed that the mean test scores on the TIE between the American sample and European sample were very similar (n = 415, M = 41.0 vs. n = 28, M = 39.5) and no significant difference was found between the two samples (t = 0.99, p < 0.05). Internal consistency of the TIE on the European sample was found to be good and close to that obtained from the American sample (0.78 vs. 0.89). The current study provides evidence that tactile defensiveness is a stable phenomenon across different cultures as measured by the TIE. Limitations of the study include use of a small and convenient sample of European children. Further studies are recommended to examine tactile defensiveness as a clinical phenomenon.     

Psychometric properties and gender invariance of the Chinese version of the self-report pediatric quality of life inventory version 4.0: short form is acceptable

Purpose  

To evaluate the psychometric properties and gender invariance of the Chinese version of the Pediatric Quality of Life Inventory (PedsQL) for 8- to 12-year-olds.     

Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model

Objectives

An appraisal of pediatric cancer-specific quality-of-life (QOL) instruments revealed a lack of clarity about what constitutes QOL in this population. This study addresses this concern by identifying the concepts that underpin the construct of QOL as determined by a content analysis of all patient-reported outcome (PRO) instruments used in childhood cancer research.

Methods

A systematic review was performed of key databases (i.e., MEDLINE, CINAHL, PsychINFO) to identify studies of QOL in children with cancer. A content analysis process was used to code and categorize all items from generic and cancer-specified PRO instruments. Our objective was to provide clarification regarding the conceptual underpinnings of these instruments, as well as to help inform the development of theory and contribute to building a conceptual framework of QOL for children with cancer.

Results

A total of 6,013 English language articles were screened, identifying 148 studies. Ten generic and ten cancer-specific PRO instruments provided 957 items. Content analysis led to the identification of four major domains of QOL (physical, psychological, social, and general health), with 11 subdomains covering 98 different concepts. While all instruments reflected items relating to the broader domains of QOL, there was substantial heterogeneity in terms of the content and variability in the distribution of items.

Conclusions

This systematic review and the proposed model represent a useful starting point in the critical appraisal of the conceptual underpinnings of PRO instruments used in pediatric oncology and contribute to the need to place such tools under a critical, yet reflective and analytical lens.     

在“军卫一号”中实现自动切换中英文输入法

本文详细介绍了在"军卫一号"程序中实现中英文输入法自动切换功能的方法,解决了医护人员在使用"军卫一号"中频繁更换各种输入词库时要不断切换输入法的问题。该方法也可在不同输入法之间进行切换,使用户的操作变得更加方便、灵活、输入效率更高。     

Storage of household firearms: an examination of the attitudes and beliefs of married women with children

Although safe firearm storage is a promising injury prevention strategy, many parents do not keep their firearms unloaded and locked up. Using the theory of planned behavior as a guiding conceptual framework, this study examines factors associated with safe storage among married women with children and who have firearms in their homes. Data come from a national telephone survey (n=185). We examined beliefs about defensive firearm use, subjective norms, perceived behavioral control and firearm storage practices. A Wilcoxon-Mann-Whitney test was conducted to assess associations between psychosocial factors and firearm storage practices. Women were highly motivated to keep firearms stored safely. Those reporting safe storage practices had more favorable attitudes, more supportive subjective norms and higher perceptions of behavioral control than those without safe storage. One-fourth believed a firearm would prevent a family member from being hurt in case of a break-in, 58% believed a firearm could scare off a burglar. Some 63% said they leave decisions about firearm storage to their husbands. Women were highly motivated to store firearms safely as evidenced by favorable attitudes, supportive subjective norms and high perceptions of behavioral control. This was especially true for those reporting safer storage practices.