Cognitive testing of tobacco use items for administration to patients with cancer and cancer survivors in clinical research.

BACKGROUND: To the authors' knowledge, there are currently no standardized measures of tobacco use and secondhand smoke exposure in patients diagnosed with cancer, and this gap hinders the conduct of studies examining the impact of tobacco on cancer treatment outcomes. The objective of the current study was to evaluate and refine questionnaire items proposed by an expert task force to assess tobacco use. METHODS: Trained interviewers conducted cognitive testing with cancer patients aged ≥21 years with a history of tobacco use and a cancer diagnosis of any stage and organ site who were recruited at the National Institutes of Health Clinical Center in Bethesda, Maryland. Iterative rounds of testing and item modification were conducted to identify and resolve cognitive issues (comprehension, memory retrieval, decision/judgment, and response mapping) and instrument navigation issues until no items warranted further significant modification. RESULTS: Thirty participants (6 current cigarette smokers, 1 current cigar smoker, and 23 former cigarette smokers) were enrolled from September 2014 to February 2015. The majority of items functioned well. However, qualitative testing identified wording ambiguities related to cancer diagnosis and treatment trajectory, such as "treatment" and "surgery"; difficulties with lifetime recall; errors in estimating quantities; and difficulties with instrument navigation. Revisions to item wording, format, order, response options, and instructions resulted in a questionnaire that demonstrated navigational ease as well as good question comprehension and response accuracy. CONCLUSIONS: The Cancer Patient Tobacco Use Questionnaire (C-TUQ) can be used as a standardized item set to accelerate the investigation of tobacco use in the cancer setting. Cancer 2016;122:1728-34. © 2016 American Cancer Society.

Do additional recontacts to increase response rate improve physician survey data quality?

BACKGROUND: Although response rates for physician surveys have been decreasing, it is not clear whether this trend is associated with an increase in survey nonresponse bias. One means for assessing potential bias is to conduct a level-of-effort analysis that compares data estimates for respondents interviewed during the first recruitment contact to respondents interviewed at later recontact cycles. METHODS: We compared early and later responders within the Survey of Physician Attitudes Regarding the Care of Cancer Survivors with respect to both demographic characteristics and aggregate survey responses to items on survivor care knowledge, attitudes, and practices. RESULTS: Accumulating additional completions across each of 4 respondent contact attempts improved weighted response rates (35.0%, 46.9%, 52.3%, and 57.6%, respectively). However, the majority of estimates for analyzed variables remained relatively unchanged over additional cycles of recontact. CONCLUSIONS: We conclude that additional respondent recontact attempts, especially beyond a single recontact, had little influence on key data distributions, suggesting that these were ineffective in reducing nonresponse bias. Further, the conduct of additional recruitment recontacts was an inefficient means for increasing statistical power. For the conduct of physician surveys, a practice that may in some cases be cost-effective, while also controlling total survey error, is to establish a larger initial sample; to either eliminate nonresponse follow-up or to limit this to one recontact; and to accept a somewhat lower final overall survey response rate.

Reliability of adult self-reported smoking history: data from the tobacco use supplement to the current population survey 2002-2003 cohort.

INTRODUCTION: This study examined the reliability of self-reported smoking history measures. The key measures of interest were time since completely quitting smoking among former smokers; age at which fairly regular smoking was initiated among former and current smokers; the number of cigarettes smoked per day and the number of years of daily smoking among former smokers; and never smoking. Another goal was to examine sociodemographic factors and interview method as potential predictors of the odds of strict agreement in responses. METHODS: Data from the 2002-2003 Tobacco Use Supplement to the Current Population Survey were examined. Descriptive analysis was performed to detect discrepant data patterns, and intraclass and Pearson correlations and kappa coefficients were used to assess reporting consistency over the 12-month interval. Multiple logistic regression models with replicate weights were built and fitted to identify factors influencing the logit of agreement for each measure of interest. RESULTS: All measures revealed at least moderate levels of overall agreement. However, upon closer examination, a few measures also showed some considerable differences in absolute value. The highest percentage of these differences was observed for former smokers' reports of the number of years smoking every day. CONCLUSIONS: Overall, the data suggest that self-reported smoking history characteristics are reliable. The logit of agreement over a 12-month period is shown to depend on a few sociodemographic characteristics as well as their interactions with each other and with interview method.

The meaning of 'fruits' and 'vegetables'.

OBJECTIVE: Fruit and vegetable consumption is a focus of research and nutrition education; yet, there is no universal agreement on the meaning of 'fruits' and 'vegetables'. Our objective was to describe survey respondent perceptions about a set of foods with regard to whether the food is a fruit, vegetable or something else. DESIGN: Three cross-sectional studies. SETTING: Two small studies involving cognitive interviewing sessions; and one large self-administered population survey. SUBJECTS: US adults in two small studies (n 55 and 80) and one large survey (n 3312), all with multiple race/ethnicities. RESULTS: Perceptions varied. In the survey, rice was considered a vegetable by about 20 % of respondents. In one small study, Spanish speakers were more likely to consider rice a vegetable, and Chinese speakers less likely, than were English speakers. Black beans were frequently classified as something other than vegetable or fruit. Among Hispanics, Spanish speakers were less likely than English speakers to consider beans a vegetable. Overall, tomatoes were classified as both fruit and vegetable, and these perceptions varied by race/ethnicity. CONCLUSIONS: Substantial disagreement among the fruit, vegetable and other food domains highlights the importance of clearly defining the desired constructs. Foods that require specific instruction include rice, dried beans, potatoes, tomatoes and fruits and vegetables in mixtures and condiments. For measurement, additional questions or explanations may be needed to clarify which foods are of interest. For communication, the global message to increase consumption of fruit and vegetables should be reinforced with specific guidance.

Cognitive testing of physical activity and acculturation questions in recent and long-term Latino immigrants.

BACKGROUND: We ascertained the degree to which language (English versus Spanish), and residence time in the US influence responses to survey questions concerning two topics: self-reported acculturation status, and recent physical activity (PA). This topic is likely to be of general interest because of growing numbers of immigrants in countries worldwide. METHODS: We carried out qualitative (cognitive) interviews of survey items on acculturation and physical activity on 27 Latino subjects from three groups: (a) In Spanish, of those of low residence time (less than five years living in the U.S.) (n = 9); (b) In Spanish, of those of high residence time (15 or more years in the U.S) (n = 9); and (c) in English, of those of high residence time (n = 9). RESULTS: There were very few language translation problems; general question design defects and socio-cultural challenges to survey responses were more common. Problems were found for both acculturation and PA questions, with distinct problem types for the two question areas. Residence time/language group was weakly associated with overall frequency of problems observed: low residence time/Spanish (86%), high residence time/Spanish (67%), and English speaking groups (62%). CONCLUSIONS: Standardized survey questions related to acculturation and physical activity present somewhat different cognitive challenges. For PA related questions, problems with such questions were similar regardless of subject residence time or language preference. For acculturation related questions, residence time/language or education level influenced responses to such questions. These observations should help in the interpretation of survey results for culturally diverse populations.

Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges.

PURPOSE: One goal of the Patient-Reported Outcomes Measurement Information System (PROMIS) is to develop a measure of sexual functioning that broadens the definition of sexual activity and incorporates items that reflect constructs identified as important by patients with cancer. We describe how cognitive interviews improved the quality of the items and discuss remaining challenges to assessing sexual functioning in research with cancer populations. METHODS: We conducted 39 cognitive interviews of patients with cancer and survivors on the topic of sexual experience. Each of the 83 candidate items was seen by 5-24 participants. Participants included both men and women and varied by cancer type, treatment trajectory, race, and literacy level. Significantly revised items were retested in subsequent interviews. RESULTS: Cognitive interviews provided useful feedback about the relevance, sensitivity, appropriateness, and clarity of the items. Participants identified broad terms (e.g., "sex life") to assess sexual experience and exposed the challenges of measuring sexual functioning consistently, considering both adjusted and unadjusted sexual experiences. CONCLUSIONS: Cognitive interviews were critical for item refinement in the development of the PROMIS measure of sexual function. Efforts are underway to validate the measure in larger cancer populations.

Semantic Assessment of the Barkin Index of Maternal Functioning in a Medically Underserved Obstetric Population.

PURPOSE: This study aims to evaluate the fitness of the Barkin Index of Maternal Functioning (BIMF) for postpartum functional assessment in a low-income obstetric population in medically underserved, Central Georgia (USA). DESIGN AND METHODS: Cognitive interviewing, a best practices approach to instrument development and validation, was performed on 24 new mothers. FINDINGS: The BIMF was comprehensible to this population of disadvantaged women. PRACTICE IMPLICATIONS: The BIMF has broad appeal due to its comprehensibility, patient-centered assessment style, and psychometric profile. Method of questionnaire administration and characteristics of the study and/or patient population should routinely be considered when implementing any type of self-reported health screening.

An Exploration of Changes in the Measurement of Mammography in the National Health Interview Survey.

Background: Using the National Health Interview Survey (NHIS), we examined the effect of question wording on estimates of past-year mammography among racially/ethnically diverse women ages 40-49 and 50-74 without a history of breast cancer.Methods: Data from one-part ("Have you had a mammogram during the past 12 months?") and two-part ("Have you ever had a mammogram"; "When did you have your most recent mammogram?") mammography history questions administered in the 2008, 2011, and 2013 NHIS were analyzed. χ2 tests provided estimates of changes in mammography when question wording was either the same (two-part question) or differed (two-part question followed by one-part question) in the two survey years compared. Crosstabulations and regression models assessed the type, extent, and correlates of inconsistent responses to the two questions in 2013.Results: Reports of past-year mammography were slightly higher in years when the one-part question was asked than when the two-part question was asked. Nearly 10% of women provided inconsistent responses to the two questions asked in 2013. Black women ages 50 to 74 [adjusted OR (aOR), 1.50; 95% confidence interval (CI), 1.16-1.93] and women ages 40-49 in poor health (aOR, 2.22; 95% CI, 1.09-4.52) had higher odds of inconsistent responses; women without a usual source of care had lower odds (40-49: aOR, 0.42; 95% CI, 0.21-0.85; 50-74: aOR, 0.42; 95% CI, 0.24-0.74).Conclusions: Self-reports of mammography are sensitive to question wording. Researchers should use equivalent questions that have been designed to minimize response biases such as telescoping and social desirability.Impact: Trend analyses relying on differently worded questions may be misleading and conceal disparities. Cancer Epidemiol Biomarkers Prev; 26(11); 1611-8. ©2017 AACR.

Facilitators and barriers to survey participation by physicians: a call to action for researchers.

Surveys of health care providers are a well-established tool for obtaining information about the organization and delivery of care as well as about provider knowledge and attitudes. However, declining response rates to provider surveys are a widely acknowledged concern. Although a number of studies have identified specific methods for increasing response rates in health care provider-and particularly physician-surveys, few have addressed the more fundamental question of what motivates or deters providers from survey participation. We briefly review theoretical perspectives concerning why providers choose to participate in surveys, and what is known about facilitators and barriers to participation. We then describe several research designs (i.e., focus groups, key informant interviews, diary and office workflow studies, surveying the surveyors, and follow-back studies of respondents/nonrespondents) for obtaining empirical data on facilitators and barriers to survey participation, particularly by physicians and medical groups. Researchers must begin to build an evidence base for understanding provider decisions concerning survey participation.

Health care provider surveys in the United States, 2000-2010: a review.

Surveys of health care providers (e.g., physicians and other health care professionals) are an important tool for assessing health care practices and the settings in which care is delivered. Although multiple methods are used to increase survey data quality, little is known about which methods are most commonly implemented. We reviewed 117 large surveys described in literature published between 2000 and 2010, examining descriptions of survey design features, survey implementation, and response rates. Despite wide variation, the typical provider survey selected practicing physicians as respondents, used the American Medical Association Masterfile as sample frame, included mail as both mode of initial contact and questionnaire administration mode, and offered monetary incentives to respondents. Our review revealed inconsistency of documentation concerning procedures used, and a variety of response rate calculation methods, such that it was difficult to determine practices that maximize response rate. We recommend that reports provide more comprehensive documentation concerning key methodological features to improve assessment of survey data quality.

Improving the quality of surveys of physicians and medical groups: a research agenda.

Because health care providers have a central role in implementing guidelines, health care reform, and new standards of care and technologies, surveying them about their practices and perspectives is vital for health services and policy research. In November 2010, the National Cancer Institute convened a workshop to review and discuss current methodologies in designing and fielding large-scale surveys of physicians and medical groups. This report summarizes key issues and future directions for four topic areas addressed in the workshop: sample frames for surveying physicians and medical groups; points of contact and response modes; response incentives; and questionnaire design and burden. Recommendations were made for improving sample frame databases, optimizing mixed-mode surveys, and studying use of incentives with gatekeepers and in medical group settings. There is particular need for empirical assessment of factors that motivate or impede participation of physicians, other types of clinicians, and medical groups in survey research.

Confirmation of family cancer history reported in a population-based survey.

BACKGROUND: Knowledge of family cancer history is essential for estimating an individual's cancer risk and making clinical recommendations regarding screening and referral to a specialty cancer genetics clinic. However, it is not clear if reported family cancer history is sufficiently accurate for this purpose. METHODS: In the population-based 2001 Connecticut Family Health Study, 1019 participants reported on 20 578 first-degree relatives (FDR) and second-degree relatives (SDR). Of those, 2605 relatives were sampled for confirmation of cancer reports on breast, colorectal, prostate, and lung cancer. Confirmation sources included state cancer registries, Medicare databases, the National Death Index, death certificates, and health-care facility records. Sensitivity, specificity, positive predictive value, and negative predictive value were calculated for reports on lung, colorectal, breast, and prostate cancer and after stratification by sex, age, education, and degree of relatedness and used to estimate report accuracy. Pairwise t tests were used to evaluate differences between the two strata in each stratified analysis. All statistical tests were two-sided. RESULTS: Overall, sensitivity and positive predictive value were low to moderate and varied by cancer type: 60.2% and 40.0%, respectively, for lung cancer reports, 27.3% and 53.5% for colorectal cancer reports, 61.1% and 61.3% for breast cancer reports, and 32.0% and 53.4% for prostate cancer reports. Specificity and negative predictive value were more than 95% for all four cancer types. Cancer history reports on FDR were more accurate than reports on SDR, with reports on FDR having statistically significantly higher sensitivity for prostate cancer than reports on SDR (58.9% vs 21.5%, P = .002) and higher positive predictive value for lung (78.1% vs 31.7%, P < .001), colorectal (85.8% vs 43.5%, P = .004), and breast cancer (79.9% vs 53.6%, P = .02). CONCLUSIONS: General population reports on family history for the four major adult cancers were not highly accurate. Efforts to improve accuracy are needed in primary care and other health-care settings in which family history is collected to ensure appropriate risk assessment and clinical care recommendations.

Maternal sensitivity concerning aetiological research into childhood cancer: results of preliminary focus groups.

We and others have postulated that modifications to epidemiological methods and tools could improve understanding of childhood cancer aetiology. We describe features of paediatric cancer that influence study design and data collection strategies, and examine determinants of the reproducibility and accuracy of mothers' responses to questionnaires, which are the primary source of risk factor information. Two focus group sessions with mothers of children with acute lymphoblastic leukaemia (ALL) and two with mothers of children with brain tumours were conducted to explore: the optimal time of day, method of administration, and location for the interview; the availability of alternative data sources; the interval between paediatric cancer diagnosis and epidemiological interview; and other features which may affect maternal interview responses. Mothers of children with both types of cancer preferred being interviewed at home during the evening and were willing to provide complete access to their offsprings' medical records. Emotional, socio-economic and perhaps cultural differences between the groups of mothers were exemplified by the willingness of mothers of children with ALL to participate in epidemiological interviews earlier in their child's treatment course and to provide greater access to maternal reproductive history records compared with mothers of children with brain tumours. Parental concerns about the difficult disease and treatment course of children with brain tumours were a key element in their decision to defer participating in epidemiological interviews for many months after their child's cancer diagnosis. We conclude that the focus group approach can contribute to a broad strategy for improving questionnaires and methods for conducting paediatric cancer epidemiological research.

Should function and bother be measured and reported separately for prostate cancer quality-of-life domains?

OBJECTIVES: To evaluate the psychometric properties of the three domains bowel, urinary, and sexual function as they were measured in the Prostate Cancer Outcomes Study and examine their use in different research and practice settings. Leading prostate cancer health-related quality-of-life questionnaires include questions that measure patients' bowel, urinary, and sexual function and their perceived annoyance (or bother) caused by limited functioning. The published results are mixed on reporting function and bother independently or together as a single domain. METHODS: Statistical tools from classical measurement theory and factor analytic methods were used to evaluate the psychometric properties of the Prostate Cancer Outcomes Study disease-specific scales. The findings from studies of other prostate cancer outcomes scales and clinical input were included to formulate the conclusions. RESULTS: Factor analysis results uncovered a multidimensional structure within two of the three domains. The urinary domain consisted of items measuring two factors: incontinence and urinary obstructive symptoms. Sexual dysfunction consisted of two dimensions: interest in sexual activity and erectile function. CONCLUSIONS: These empirical results suggest that bowel dysfunction and urinary incontinence can each be combined with measures of bother to produce overall measures of function; however, evidence was present for the need for separate measures of sexual function, sexual interest, and perceived bother with sexual function. For informing patient-doctor communications, function and bother on all three domains should be reported separately, because treatment decisions or symptom management may vary depending on a patient's perceived concern about their health-related quality-of-life.