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Biomedical subjects

Jin-Shei Lai

Publications and source records attributed to Jin-Shei Lai.

At least 19 recordsLinked to original sources

Using Q-methodology to understand perceived fatigue reported by adolescents with cancer.

Although fatigue is an unpleasant symptom commonly experienced by pediatric oncology patients, it also tends to be under-recognized and under-treated. A conceptual understanding of how patients perceive fatigue is beneficial for better identification and treatment planning. The purpose of this study was to understand how adolescents with cancer perceive their fatigue and to explore potential factors influencing their perceptions by using Q-methodology. The sample included 15 patients (ages 12-18 years) from the Chicago metropolitan area who were receiving cancer treatment. All participants completed a 37-statement Q-sort task. Data were analyzed by using PQMethod computer software. Results identified three descriptors of perceived fatigues reported by adolescents: energy and related capacity for physical functioning, psychosocial effects, and anemia-specific concerns. Appropriate referral for patients with the latter two descriptors of fatigue was recommended.

Activities of Daily Living↗

Rapid detection of differential item functioning in assessments of health-related quality of life: The Functional Assessment of Cancer Therapy.

REASON FOR STUDY: Differential item functioning (DIF) occurs when a test item functions differently in different groups when controlling for the level of the underlying construct measured by the test. DIF assessment is a first step in the evaluation of test bias. We sought to demonstrate a rapid hybrid approach to DIF detection by determining the presence and scale-level impact of DIF related to eight covariates in four domains measured by the Functional Assessment of Cancer Therapy (FACT). MAJOR FINDINGS: The number of items found with DIF in each domain depended on the criterion chosen to define the presence of DIF. With a few exceptions, scale-level differential functioning was similar regardless of the criteria chosen. For physical well-being, there was relevant scale-level differential functioning related only to race. For social and family well-being, there was relevant scale-level differential functioning related to each of the covariates. For emotional well-being, there was relevant scale-level differential functioning related to ethnicity, language, and race. For functional well-being, there was relevant scale-level differential functioning related to ethnicity, race, education, and self- vs. interviewer-administration. PRINCIPAL CONCLUSIONS: Our rapid hybrid approach to DIF detection may be broadly applicable in other studies of health-related quality of life.

Adolescent↗

The impact of literacy on health-related quality of life measurement and outcomes in cancer outpatients.

BACKGROUND: Limited evidence exists regarding the relationship between literacy and health-related quality of life (HRQL). Research is needed to develop measurement techniques for low literacy populations and to evaluate potential literacy-related measurement bias. METHODS: A Talking Touchscreen (TT) was developed for an HRQL study. Low (n = 214) and high literacy (n = 201) adult cancer outpatients participated, 70% of whom were from racial/ethnic minorities. Patients completed three questionnaires by TT: FACT-G (cancer-specific), SF-36 (generic health status), and a standard gamble utility questionnaire. Measurement bias was evaluated using item response theory (IRT). Effects of literacy on HRQL were evaluated using regression models. RESULTS: Most (97%) patients rated the TT easy to use. In IRT analysis, 6/27 FACT-G and 12/31 SF-36 items demonstrated literacy bias; this was relatively balanced (10 items 'biased against' low literacy; 8 'biased against' high literacy). Mean literacy group differences were statistically and clinically non-significant for 9/14 HRQL outcomes. Adjustment for bias and/or covariates eliminated most remaining differences. CONCLUSIONS: The TT is valid and useful for HRQL assessment in low literacy populations. There appears to be no systematic literacy bias in reporting HRQL, and low literacy is not an independent risk factor for poorer HRQL.

Cancer Care Facilities↗

Factor analysis techniques for assessing sufficient unidimensionality of cancer related fatigue.

BACKGROUND: Fatigue is the most common unrelieved symptom experienced by people with cancer. The purpose of this study was to examine whether cancer-related fatigue (CRF) can be summarized using a single score, that is, whether CRF is sufficiently unidimensional for measurement approaches that require or assume unidimensionality. We evaluated this question using factor analysis techniques including the theory-driven bi-factor model. METHODS: Five hundred and fifty five cancer patients from the Chicago metropolitan area completed a 72-item fatigue item bank, covering a range of fatigue-related concerns including intensity, frequency and interference with physical, mental, and social activities. Dimensionality was assessed using exploratory and confirmatory factor analysis (CFA) techniques. RESULTS: Exploratory factor analysis (EFA) techniques identified from 1 to 17 factors. The bi-factor model suggested that CRF was sufficiently unidimensional. CONCLUSIONS: CRF can be considered sufficiently unidimensional for applications that require unidimensionality. One such application, item response theory (IRT), will facilitate the development of short-form and computer-adaptive testing. This may further enable practical and accurate clinical assessment of CRF.

Aged↗

Developing a health-related quality of life instrument for childhood brain tumor survivors.

OBJECTS: With improved treatment, many childhood brain tumor survivors live through adulthood. A psychometrically sound instrument, which can capture their unique experiences through the lifetime, is needed. This paper documents the development of the Pediatric Functional Assessment of Cancer Therapy-Childhood Brain Tumor Survivor (PedsFACT-BrS) for use with survivors for at least 1 year posttreatment. METHODS: The PedsFACT-BrS was developed in two phases. In phase I, items were generated via interviewing 20 survivors, 20 caregivers, and 12 clinicians/teachers. In phase II, Rasch analysis and classical test theory were used to evaluate the responses of 46 survivors and 46 caregivers. CONCLUSION: The 34-item PedsFACT-BrS covers four domains: physical well-being, emotional well-being and illness experiences, social well-being, and brain tumor-specific concerns. Its scalability is supported by Rasch analysis and its content validity and reliability is documented. It is now ready to be validated to other subpopulations across the disease trajectory.

Brain Neoplasms↗

Measuring the concerns of cancer patients with low platelet counts: the Functional Assessment of Cancer Therapy--thrombocytopenia (FACT-Th) questionnaire.

PURPOSE: The specific concerns of people with low platelet counts (thrombocytopenia) have not been characterized well in the literature and as a result proper measurement of patient-reported concerns is lacking. We report on the development and validation of questions specifically targeted to patients with thrombocytopenia that can be added to the more general concerns in the Functional Assessment of Cancer Therapy-General. MATERIALS AND METHODS: An 18-item FACT-Thrombocytopenia Subscale (ThS) was rated and evaluated by thrombocytopenic patients at baseline during a validation study of 40 thrombocytopenic and 43 nonthrombocytopenic cancer patients. To evaluate responsiveness, patients completed a battery of self-report measures including the FACT-Th and were followed up for change in platelet count over 2 weeks. RESULTS: All subscales and aggregated scores showed high internal consistency at initial assessment and at retesting. Convergent and divergent validity were demonstrated by predicted relationships between FACT-Th subscales and mood, mental and physical component scores of the SF-36, and social desirability. The ThS differentiated patients with low platelets from those with normal platelet counts and good performance from poor performance status patients. CONCLUSION: The FACT-Th is a reliable and valid measure for assessing the impact of thrombocytopenia on patients' lives. It can distinguish cancer patients with and without thrombocytopenia and is responsive to increase in platelet count over time. The FACT-Th may therefore prove useful as a measure of self-reported symptoms and concerns related to thrombocytopenia in clinical trials evaluating new pharmacologic agents and/or platelet transfusion practice.

Adult↗

Item banks and their potential applications to health status assessment in diverse populations.

In the context of an ethnically diverse, aging society, attention is increasingly turning to health-related quality of life measurement to evaluate healthcare and treatment options for chronic diseases. When evaluating and treating symptoms and concerns such as fatigue, pain, or physical function, reliable and accurate assessment is a priority. Modern psychometric methods have enabled us to move from long, static tests that provide inefficient and often inaccurate assessment of individual patients, to computerized adaptive tests (CATs) that can precisely measure individuals on health domains of interest. These modern methods, collectively referred to as item response theory (IRT), can produce calibrated "item banks" from larger pools of questions. From these banks, CATs can be conducted on individuals to produce their scores on selected domains. Item banks allow for comparison of patients across different question sets because the patient's score is expressed on a common scale. Other advantages of using item banks include flexibility in terms of the degree of precision desired; interval measurement properties under most circumstances; realistic capability for accurate individual assessment over time (using CAT); and measurement equivalence across different patient populations. This work summarizes the process used in the creation and evaluation of item banks and reviews their potential contributions and limitations regarding outcome assessment and patient care, particularly when they are applied across people of different cultural backgrounds.

Aged↗

Anorexia/cachexia-related quality of life for children with cancer.

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting from anorexia and cachexia. Currently, there are no instruments that measure common concerns specifically associated with anorexia and cachexia in children with cancer. The purpose of the current article was to test the psychometric properties of a newly developed pediatric Functional Assessment of Anorexia and Cachexia Therapy (peds-FAACT) for children with cancer. METHODS: Ninety-six patients (ages 7-17 yrs) receiving cancer treatment and their parents were asked to complete the 12-item peds-FAACT. The authors implemented both classical test theory and item response theory to evaluate the agreement between parents and patients, internal consistency and unidimensionality of the scale, and stability of items across subgroups. RESULTS: As a result, a patient-reported six-item scale was recommended as the core measure for all pediatric patients with cancer and four additional peripheral items were recommended for adolescent patients. CONCLUSIONS: The peds-FAACT demonstrated good psychometric properties, differentiated patients with different functional performance status, and was determined to be a useful tool for future clinical trials.

Adolescent↗

Assessing arm and hand function after stroke: a validity test of the hierarchical scoring system used in the motor assessment scale for stroke.

OBJECTIVE: To evaluate the validity of the scoring hierarchy for the 3 upper-limb items on the Motor Assessment Scale (MAS). DESIGN: Application of Rasch analysis to 3 independent measurement scales, each representing the upper-arm function, hand movements, and advanced hand activities items of the MAS. SETTING: Inpatient and outpatient occupational therapy (OT) programs in a department of rehabilitation of an urban hospital center. PARTICIPANTS: One hundred patients (67 men, 33 women; average age, 54.3+/-14.4 y; average time since stroke onset, 104 d) attending OT for stroke rehabilitation. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The MAS for stroke (upper-arm function, hand movements, and advanced hand activities sections). RESULTS: Rasch analysis provided support for the validity of hierarchical scoring criteria for the upper-arm scale. This analysis, however, identified inconsistencies in the hierarchical scoring criteria for the hand function and advanced hand activities scales and, when considering measurement error, only small differences in difficulty level between several behavioral criteria. CONCLUSIONS: The findings lead to suggestions for changes in the behavioral criteria hierarchy for upper-limb items on the MAS and highlight the importance of using statistical analyses to test the validity of proposed hierarchies of behavioral criteria in functional assessments.

Arm↗

An item bank was created to improve the measurement of cancer-related fatigue.

OBJECTIVE: Cancer-related fatigue (CRF) is one of the most common unrelieved symptoms experienced by patients. CRF is underrecognized and undertreated due to a lack of clinically sensitive instruments that integrate easily into clinics. Modern computerized adaptive testing (CAT) can overcome these obstacles by enabling precise assessment of fatigue without requiring the administration of a large number of questions. A working item bank is essential for development of a CAT platform. The present report describes the building of an operational item bank for use in clinical settings with the ultimate goal of improving CRF identification and treatment. STUDY DESIGN AND SETTING: The sample included 301 cancer patients. Psychometric properties of items were examined by using Rasch analysis, an Item Response Theory (IRT) model. RESULTS AND CONCLUSION: The final bank includes 72 items. These 72 unidimensional items explained 57.5% of the variance, based on factor analysis results. Excellent internal consistency (alpha=0.99) and acceptable item-total correlation were found (range: 0.51-0.85). The 72 items covered a reasonable range of the fatigue continuum. No significant ceiling effects, floor effects, or gaps were found. A sample short form was created for demonstration purposes. The resulting bank is amenable to the development of a CAT platform.

Adult↗

An item response theory-based pain item bank can enhance measurement precision.

Cancer-related pain is often under-recognized and undertreated. This is partly due to the lack of appropriate assessments, which need to be comprehensive and precise yet easily integrated into clinics. Computerized adaptive testing (CAT) can enable precise-yet-brief assessments by only selecting the most informative items from a calibrated item bank. The purpose of this study was to create such a bank. The sample included 400 cancer patients who were asked to complete 61 pain-related items. Data were analyzed using factor analysis and the Rasch model. The final bank consisted of 43 items which satisfied the measurement requirement of factor analysis and the Rasch model, demonstrated high internal consistency and reasonable item-total correlations, and discriminated patients with differing degrees of pain. We conclude that this bank demonstrates good psychometric properties, is sensitive to pain reported by patients, and can be used as the foundation for a CAT pain-testing platform for use in clinical practice.

Adult↗

Development of the Childhood Atopic Dermatitis Impact Scale: initial validation of a quality-of-life measure for young children with atopic dermatitis and their families.

To measure the effects of atopic dermatitis (AD) on the quality of life of affected young children and their families, we developed a prototype 62-item instrument, the Childhood Atopic Dermatitis Impact Scale (CADIS). The prototype CADIS was developed from a comprehensive conceptual framework based on data from parents and clinicians. The instrument had eight subscales (four each for child and parent): physical health, emotional health, physical functioning, and social functioning. The goal of this work was to test the validity of and to refine the prototype of CADIS. Two hundred seventy parents of children under the age of 6 y with AD responded to the instrument. Content validity was demonstrated by expert and parent reviews of the drafted and refined instrument, and by analyzing parents' responses to open-ended questions about their children's skin disease. Construct validity was assessed in exploratory factor analyses which supported a refinement in the conceptual framework to consist of two dimensions with five domains: child dimensions (symptoms and activity limitation/behavior), and parent dimensions (family/social function, sleep, and emotions). Seventeen items were eliminated, yielding a 45-item refined version of CADIS (score 0-180) with evidence of content and construct validity and suggested use in clinical research.

Adolescent↗

Data pooling and analysis to build a preliminary item bank: an example using bowel function in prostate cancer.

Assessing bowel function (BF) in prostate cancer can help determine therapeutic trade-offs. We determined the components of BF commonly assessed in prostate cancer studies as an initial step in creating an item bank for clinical and research application. We analyzed six archived data sets representing 4,246 men with prostate cancer. Thirty-one items from validated instruments were available for analysis. Items were classified into domains (diarrhea, rectal urgency, pain, bleeding, bother/distress, and other) then subjected to conventional psychometric and item response theory (IRT) analyses. Items fit the IRT model if the ratio between observed and expected item variance was between 0.60 and 1.40. Four of 31 items had inadequate fit in at least one analysis. Poorly fitting items included bleeding (2), rectal urgency (1), and bother/distress (1). A fifth item assessing hemorrhoids was poorly correlated with other items. Our analyses supported four related components of BF: diarrhea, rectal urgency, pain, and bother/distress.

Adult↗

Procedures for the analysis of differential item functioning (DIF) for small sample sizes.

An item with differential item functioning (DIF) displays different statistical properties, conditional on a matching variable. The presence of DIF in measures can invalidate the conclusions of medical outcome studies. Numerous approaches have been developed to examine DIF in many areas, including education and health-related quality of life. There is little consensus in the research community regarding selection of one best method, and most methods require large sample sizes. This article describes some approaches to examine DIF with small samples (e.g., less than 200).

Health Status Indicators↗

An examination of the measurement properties of the pediatric volitional questionnaire.

The Pediatric Volitional Questionnaire (PVQ) is a 15- item play-based assessment of a child's motivational strengths and weaknesses in various settings based on the Model of Human Occupation. A previous study examined the PVQ's ability to provide a valid measure of volition in ten non-disabled children. This study combined data from the previous study with data on eight children with disabilities to further test the instrument's psychometric properties. Data on 36 observations of the 18 participants were observed by a total of 20 raters. Each rater was randomly assigned to rate videotapes. Data were analyzed using the Rasch Measurement Model. Results indicate that the 15 items of the scale work well together to measure volition and were well matched to the volitional levels of the sample group. Nineteen of the twenty raters used the scale in a valid manner, though scores were affected by the extent of severity/leniency of the rater. All eighteen participants were validly rated and the scale items effectively differentiated levels of volition among the eighteen children. These findings supported the conclusion that the PVQ provides a valid and sensitive measure of volition. The study also found that the 4-point rating scale operated as a 3-point scale in this study and that raters differentiated in their severity/ leniency. These latter findings indicate the need to further clarify the rating scale.

Child↗

Issues in the development of an item bank.

OBJECTIVE: To describe and illustrate 2 issues involved in the development of an item bank that can be used to improve measurement across settings and over time. DESIGN: Secondary (psychometric) analysis of data collected on existing quality of life (QOL) instruments. SETTING: Five cancer clinics in hospital settings in various parts of the United States; 523 solo or group practices in 3 major US cities; and an inpatient rehabilitation hospital in a large metropolitan area. PARTICIPANTS: Illustration 1: 399 persons being treated for or having a history of cancer, 170 persons being treated for human immunodeficiency virus (HIV), 328 persons with stroke assessed during and after acute rehabilitation, and 433 persons being treated for multiple sclerosis. Illustration 2: 1714 persons with cancer and/or HIV participating in a large-scale multisite study, 3429 persons with prevalent treatable chronic health conditions, and 125 persons with stage IV metastatic breast cancer. INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURES: QOL as measured by 10 different instruments. RESULTS: The illustrations show that (1). core items, which functioned similarly across 4 diagnostic groups, can be identified and used to construct instruments measuring physical function that are tailored to each of these groups, and (2). items from 3 separate datasets can be linked to create a dataset that can serve as an initial pain item bank. CONCLUSION: The methodology exists to develop item banks to develop better measures of QOL.

Acute Disease↗

Fatigue in cancer patients compared with fatigue in the general United States population.

BACKGROUND: Although fatigue is a common symptom among cancer patients, it is also a common experience in the general, healthy population. Its universality has made it difficult to appreciate whether the fatigue experienced by patients with cancer is distinguishable from the fatigue experienced by the general population. Because the etiology of fatigue is multifactorial, it also has been difficult to appreciate fully the relative contribution of anemia to cancer-related fatigue. METHODS: To address this issue, responses to a brief, standardized set of 13 questions from the Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System were compared across three groups: anemic cancer patients (n = 2369 patients), nonanemic cancer patients (n = 113 patients), and the general United States population (n = 1010 persons). RESULTS: Fatigue scores of the anemic cancer patients (at both baseline and upon completion of anemia therapy) were significantly worse compared with the scores of nonanemic cancer patients that, in turn, were worse compared with the scores of the general United States population (P < 0.001). Score distributions were quite distinct for these three groups. Within the group of anemic cancer patients, the degree of anemia (mild, moderate, or severe) also was predictive of the degree of fatigue (P < 0.001), although the distributions were not dramatically distinct. CONCLUSIONS: Although anemia is clearly a factor that contributes to the severity of disease-related fatigue among cancer patients, hemoglobin levels explain only part of the difference compared with fatigue among the general United States population. The distinct distributions of fatigue scores of anemic cancer patients compared with the general United States population and the substantial sample sizes of these two groups enabled a discriminant analysis approach that allowed the differentiation of anemic cancer patients from the general population with high sensitivity (0.92) and reasonable specificity (0.69). Thus, although fatigue is a symptom most anyone can relate to, the fatigue of cancer patients, particularly those who are anemic, is decidedly worse. Interventions targeting this common and life-disrupting symptom likely would be of considerable value to patients with cancer.

Anemia↗

Combining anchor and distribution-based methods to derive minimal clinically important differences on the Functional Assessment of Cancer Therapy (FACT) anemia and fatigue scales.

Magnitude differences in scores on a measure of quality of life that correspond to differences in function or clinical course are called clinically important differences (CIDs). Anchor-based and distribution-based methods were used to provide ranges of CIDs for five targeted scale scores of the Functional Assessment of Cancer Therapy-Anemia (FACT-An) questionnaire. Three samples of cancer patients were used: Sample 1 included 50 patients participating in a validation study of the FACT-An; Sample 2 included 131 patients participating in a longitudinal study of chemotherapy-induced fatigue; sample 3 included 2,402 patients enrolled in a community-based clinical trial evaluating the effectiveness and safety of a treatment for anemia. Three clinical indicators (hemoglobin level; performance status; response to treatment) were used to determine anchor-based differences. One-half of the standard deviation and 1 standard error of measurement were used as distribution-based criteria. Analyses supported the following whole number estimates of a minimal CID for these five targeted scores: Fatigue Scale = 3.0; FACT-G total score = 4.0; FACT-An total score = 7.0; Trial Outcome Index-Fatigue = 5.0; and Trial Outcome Index-Anemia = 6.0. These estimates provide a basis for sample size estimation when planning for a clinical trial or other longitudinal study, when the purpose is to ensure detection of meaningful change over time. They can also be used in conjunction with more traditional clinical markers to assist investigators in determining treatment efficacy.

Adult↗