Engaging Public Health Alumni in the Tracking of Career Trends: Results From a Large-Scale Experiment on Survey Fielding Mode.

OBJECTIVE: We sought to understand the relative impact of fielding mode on response rate among public health alumni. METHODS: As part of the 2021 Career Trends Survey of alumni from the University of Minnesota School of Public Health, we designed a fielding mode experiment to ascertain whether a paper survey, a postcard with a custom survey link ("postcard push-to-web"), a mobile telephone call or text (mobile), or an email invitation would garner the highest response rates. Invitations were randomly assigned from available contact information. RESULTS: Of 8531 alumni invited, 1671 alumni (19.6%) completed the survey. Among the initial fielding modes, the paper survey had the highest response rate (28%), followed by mobile (19%), email (10%), and postcard push-to-web (10%). More robust recent engagement with alumni relations, paper survey invitation or mode switch, and recent graduation were all significantly associated with a higher likelihood of response. CONCLUSIONS: Paper and mobile invitations had the highest response rates to our survey among public health alumni. Findings from this fielding mode experiment are relevant to schools and programs of public health seeking to capture similar information among their alumni, especially given current trends in investment in the public health workforce.

Validation of bladder health scales and function indices for women's research.

BACKGROUND: Existing bladder-specific measures lack the ability to assess the full range of bladder health, from poor to optimal health. OBJECTIVE: This study aimed to report evidence of validity of the self-administered, multidimensional bladder health scales and function indices for research in adult women. STUDY DESIGN: A cross-sectional population-based validation study with random assignment to paper or electronic administration was conducted using national address-based probability sampling supplemented by purposive sampling of women with lower urinary tract symptoms in 7 clinical research centers. Construct validity of the bladder health scales and function indices was guided by a multitrait-multimethod approach using health and condition-specific questionnaires, bladder diaries, expert ratings of bladder health, and noninvasive bladder function testing. Internal dimensional validity was evaluated using factor analysis; internal reliability was assessed using paired t-tests and 2-way mixed-effects intraclass correlation coefficient models. Chi-square, Fisher exact, or t-tests were used for mode comparisons. Convergent validity was evaluated using Pearson correlations with the external construct measures, and known-group validity was established with comparison of women known and unknown to be symptomatic of urinary conditions. RESULTS: The sample included 1072 participants. Factor analysis identified 10 scales, with Cronbach's alpha ranging from 0.74 to 0.94. Intraclass correlation coefficients of scales ranged from 0.55 to 0.94. Convergent validity of the 10 scales and 6 indices ranged from 0.52 to 0.83. Known-group validity was confirmed for all scales and indices. Item distribution was similar by mode of administration. CONCLUSION: The paper and electronic forms of the bladder health scales and function indices are reliable and valid measures of bladder health for use in women's health research.

Development and Testing of the Preparation for Labor and Birth Instrument.

OBJECTIVE: To develop and assess the reliability and validity of a new instrument used during the third trimester of pregnancy to measure women's confidence in their ability to achieve physiologic birth, the Preparation for Labor and Birth (P-LAB) instrument. DESIGN: Two-phase instrument development study that consisted of item generation and a prospective field test. SETTING: Field testing occurred in five midwestern U.S. prenatal clinics. PARTICIPANTS: Participants in the field test were 203 nulliparous and parous pregnant women who intended to give birth vaginally. METHODS: Psychometric testing consisted of test-retest reliability testing and assessments of content validity, face validity, and construct validity. We measured construct validity using exploratory factor analysis and correlation with the Sense of Coherence Scale. RESULTS: The 22-item P-LAB showed good content validity, good internal consistency, and stability over time. All items had content validity index scores greater than or equal to 0.8, and the total instrument content validity index was 0.95. We identified four factors related to women's confidence in their ability to achieve physiologic birth: Planned Use of Pain Medication, Relationship With Care Provider and Supportive Birth Environment, Beliefs About Labor, and Labor Support (social and professional). Cronbach's alpha coefficient for the four extracted factors were .93, .76, .73 and .74, respectively. Intraclass correlation [95% confidence interval] for the total questionnaire was .92 [.88, .94]. We found no linear association between total P-LAB scores and sense of coherence. CONCLUSION: Our findings demonstrate acceptable initial psychometric properties for the P-LAB instrument. Additional testing is required to evaluate the instrument's construct, convergent, and divergent validity.

Perceived Benefits of Using Complementary and Alternative Medicine by Race/Ethnicity Among Midlife and Older Adults in the United States.

Objective: To describe, for a national sample of midlife and older adults, the types of complementary and alternative medicine (CAM) used for health and wellness and the perceived benefits of CAM use by race/ethnicity. Method: Using data from the 2012 National Health Interview Survey, we ran multiple logistic regression models to estimate the odds of each perceived benefit among adults ages 50 and older. Results: More than 38% of midlife and older adults used CAM in the past year. For six of seven perceived benefits examined, we found significant differences by race/ethnicity, with each group having higher odds of two or more perceived benefits compared with non-Hispanic Whites. Discussion: Although racial/ethnic minority groups are less likely to use CAM compared with non-Hispanic Whites, those who use CAM perceive great benefit. Future research should examine the potential contribution of evidence-based CAM to promoting health and well-being in a diverse aging population.

Burnout, Moral Distress, Work-Life Balance, and Career Satisfaction among Hematopoietic Cell Transplantation Professionals.

A projected shortage of hematopoietic cell transplantation (HCT) health professionals was identified as a major issue during the National Marrow Donor Program/Be The Match System Capacity Initiative. Work-related distress and work-life balance were noted to be potential barriers to recruitment/retention. This study examined these barriers and their association with career satisfaction across HCT disciplines. A cross-sectional, 90-item, web-based survey was administered to advanced practice providers, nurses, physicians, pharmacists, and social workers in 2015. Participants were recruited from membership lists of 6 professional groups. Burnout (measured with the Maslach Burnout Inventory subscales of emotional exhaustion and depersonalization) and moral distress (measured by Moral Distress Scale-Revised) were examined to identify work-related distress. Additional questions addressed demographics, work-life balance, and career satisfaction. Of 5759 HCT providers who received an individualized invitation to participate, 914 (16%) responded; 627 additional participants responded to an open link survey. Significant differences in demographic and practice characteristics existed across disciplines (P < .05). The prevalence of burnout differed across disciplines (P < .05) with an overall prevalence of 40%. Over one-half of pharmacists had burnout, whereas social workers had the lowest prevalence at less than one-third. Moral distress scores ranged from 0 to 336 and varied by discipline (P < .05); pharmacists had the highest mean score (62.9 ± 34.8) and social workers the lowest (42.7 ± 24.4). In multivariate and univariate analyses, variables contributing to burnout varied by discipline; however, moral distress was a significant contributing factor for all providers. Those with burnout were more likely to report inadequate work-life balance and a low level of career satisfaction; however, overall there was a high level of career satisfaction across disciplines. Burnout, moral distress, and inadequate work-life balance existed at a variable rate in all HCT disciplines, yet career satisfaction was high. These results suggest specific areas to address in the work environment for HCT health professionals, especially the need for relief of moral distress and a greater degree of personal time. As the creation of healthy work environments is increasingly emphasized to improve quality care and decrease costs, these findings should be used by HCT leadership to develop interventions that mitigate work-related distress and in turn foster recruitment and retention of HCT providers.

Validation of a single summary score for the Prolapse/Incontinence Sexual Questionnaire-IUGA revised (PISQ-IR).

INTRODUCTION AND HYPOTHESIS: The Prolapse/Incontinence Sexual Questionnaire-International Urogynecology Association (IUGA) Revised (PISQ-IR) measures sexual function in women with pelvic floor disorders (PFDs) yet is unwieldy, with six individual subscale scores for sexually active women and four for women who are not. We hypothesized that a valid and responsive summary score could be created for the PISQ-IR. METHODS: Item response data from participating women who completed a revised version of the PISQ-IR at three clinical sites were used to generate item weights using a magnitude estimation (ME) and Q-sort (Q) approaches. Item weights were applied to data from the original PISQ-IR validation to generate summary scores. Correlation and factor analysis methods were used to evaluate validity and responsiveness of summary scores. RESULTS: Weighted and nonweighted summary scores for the sexually active PISQ-IR demonstrated good criterion validity with condition-specific measures: Incontinence Severity Index = 0.12, 0.11, 0.11; Pelvic Floor Distress Inventory-20 = 0.39, 0.39, 0.12; Epidemiology of Prolapse and Incontinence Questionnaire-Q35 = 0.26 0,.25, 0.40); Female Sexual Functioning Index subscale total score = 0.72, 0.75, 0.72 for nonweighted, ME, and Q summary scores, respectively. Responsiveness evaluation showed weighted and nonweighted summary scores detected moderate effect sizes (Cohen's d > 0.5). Weighted items for those NSA demonstrated significant floor effects and did not meet criterion validity. CONCLUSIONS: A PISQ-IR summary score for use with sexually active women, nonweighted or calculated with ME or Q item weights, is a valid and reliable measure for clinical use. The summary scores provide value for assesing clinical treatment of pelvic floor disorders.

Complementary health approaches for health and wellness in midlife and older US adults.

OBJECTIVES: To characterize the use of complementary health approaches (CHA) and examine the perceived benefits of using CHA by reason for use among midlife and older adults. STUDY DESIGN: Analysis of 2012 National Health Interview Survey data, a nationally representative US sample using cross-tabulations with design-based F-tests and multiple logistic regression. The analytic sample included adults aged over 50 years (N=14,849). MAIN OUTCOME MEASURES: The proposed benefits of using CHA included: (1) better control over health, (2) reduced stress/relaxation, (3) better sleep, (4) feeling better emotionally, (5) coping with health problems, (6) improved health/feeling better, and (7) improved relationships. RESULTS: Overall, 31% of this sample of midlife and older US adults had used CHA in the past year. Among users, 15% had used CHA for treatment only, 40% for wellness only, and 45% for combined wellness and treatment. Herbs (60%), chiropractic (28%), massage (22%), and yoga (19%) were the most common CHA. Wellness-only and combined users had significantly higher odds of reporting that CHA conferred benefit compared with treatment-only users. CONCLUSIONS: CHA are used by nearly a third of midlife and older adults and are perceived to provide substantial benefit. Integrating CHA as part of a healthy lifestyle has the potential to contribute to healthy aging among midlife and older adults.

Complementary and Alternative Medicine Use among Women of Reproductive Age in the United States.

BACKGROUND: The purpose of this study was to examine the prevalence of complementary and alternative medicine (CAM) use, types of CAM used, and reasons for CAM use among reproductive-age women in the United States. METHODS: Data are from the 2007 National Health Interview Survey. We examined a nationally representative sample of U.S. women ages 18 to 44 (n = 5,764 respondents). Primary outcomes were past year CAM use, reasons for CAM use, and conditions treated with CAM by pregnancy status (currently pregnant, gave birth in past year, neither). Multivariate logistic regression was used to estimate the odds of CAM use by pregnancy status. FINDINGS: Overall, 67% of reproductive-age U.S. women reported using any CAM in the past year. Excluding vitamins, 42% reported using CAM. Significant differences in use of biologically based (p = .03) and mind-body therapies (p = .012) by pregnancy status were found. Back pain (17.1%), neck pain (7.7%), and anxiety (3.7%) were the most commonly reported conditions treated with CAM among reproductive-age women. However, 20% of pregnant and postpartum women used CAM for pregnancy-related reasons, making pregnancy the most common reason for CAM use among pregnant and postpartum women. CONCLUSIONS: CAM use during the childbearing year is prevalent, with one-fifth of currently or recently pregnant women reporting CAM use for pregnancy-related reasons. Policymakers should consider how public resources may be used to support appropriate, effective use of alternative approaches to managing health during pregnancy and postpartum. Providers should be aware of the changing needs and personal health practices of reproductive age women.

Quality-of-life measures in fecal incontinence: is validation valid?

BACKGROUND: Multiple health measurement scales have been used to study patients with fecal incontinence, but none have met the needs for clinical use and research perfectly. These include severity scales and generic and condition-specific quality-of-life scales. Several different approaches have been used to develop and evaluate the internal and external validity of these scales. OBJECTIVE: As a step toward an improved quality-of-life instrument for fecal incontinence, the present study aimed to provide a critical review of the psychometric methodology of existing generic and condition-specific quality-of-life scales by using a standard measurement model. DESIGN: This study is a retrospective review. SETTINGS: Two investigators experienced in psychometric methodology reviewed source articles from frequently used fecal incontinence quality-of-life scales. PATIENTS: Patients with fecal incontinence were identified. MAIN OUTCOME MEASURES: The primary outcome measured was the demonstration of at least 1 reliability criterion, content validity, construct validity, and either criterion validity or discriminative validity. RESULTS: A total of 12 scales were identified. The reported methodology varied considerably. Most scales demonstrated convergent validity and test-retest reliability, whereas very few scales demonstrated internal consistency or predictive validity. Generic scales were found to be reliable and valid, but not responsive to condition severity. There was a wide range of methodology used in scale development and a wide diversity in the psychometric rigor. LIMITATIONS: Variations in scale construction, data reporting, and validity testing made the evaluation of fecal incontinence quality-of -life scales by using a standardized measurement model difficult. CONCLUSIONS: Identifying deficiencies in validity testing and reporting of existing scales is vital for future creation of a useful validated instrument to measure quality of life in patients with fecal incontinence.

Evaluation of use of stage of tobacco epidemic to predict post-immigration smoking behaviors.

INTRODUCTION: This research uses the Lopez stage of tobacco epidemic model to evaluate post-immigration smoking behavior. Stage is a composite measure of tobacco norms of a country: smoking prevalence, cigarette consumption, and tobacco-related morbidity. The Lopez model characterizes the changing relationship between smoking prevalence and tobacco-related mortality and morbidity as a country progresses through the 4 successive stages of the tobacco epidemic. METHODS: Survey data from Southeast Asian and Latino immigrants (from stage 1 and stage 2 countries) (n = 2,076) were used to evaluate stage of tobacco epidemic of country of emigration. Stage was compared with standard acculturation measures and community identification measures to understand post-immigration smoking behavior in the United States. Comparative analysis by stage and gender includes bivariate associations and logistic regression models to predict post-immigration smoking behavior. RESULTS: Males:Pre-immigration prevalence and consumption rates of our study sample conform to prevalence and consumption of stage 1 and stage 2 countries predicted by the Lopez model. Post-immigration smoking uptake is equivalent to pre-immigration uptake for stage 1 males. The uptake rate for stage 2 males post-immigration is significantly lower (22.1%) than pre-immigration uptake (41.4%). Stage is a statistically significant predictor of post-immigration smoking uptake (OR = 3.08, CI = 1.82-5.22, p < .01). Females:Stage of country of birth is not significantly predictive of post-migration smoking uptake. CONCLUSIONS: The finding of stage to be a strong predictor of post-immigration smoking behavior among males provides a promising measurement tool. Prevalence and consumption of females in our study sample support the need for revisions to the stage model.

The PISQ-IR: considerations in scale scoring and development.

INTRODUCTION: This paper provides a detailed discussion of the psychometric analysis and scoring of a revised measure of sexual function in women with pelvic floor disorders (PFD): the Pelvic Organ Prolapse Incontinence Sexual Questionnaire, IUGA-Revised (PISQ-IR). METHODS: Standard tools for evaluating item distributions, relationships, and psychometric properties were used to identify sub-scales and determine how the sub-scales should be scored. The evaluation of items included a nonresponse analysis, the nature of missingness, and imputation methods. The minimum number of items required to be answered and three different scoring methods were evaluated: simple summation, mean calculation, and transformed summation. RESULTS: Item nonresponse levels are low in women who are sexually active and the psychometric properties of the scales are robust. Moderate levels of item nonresponse are present for women who are not sexually active, which presents some concerns relative to the robustness of the scales. Single imputation for missing items is not advisable and multiple imputation methods, while plausible, are not recommended owing to the complexity of their application in clinical research. The sub-scales can be scored using either mean calculation or transformed summation. Calculation of a summary score is not recommended. CONCLUSION: The PISQ-IR demonstrates strong psychometric properties in women who are sexually active and acceptable properties in those who are not sexually active. To score the PISQ-IR sub-scales, half of the items must be answered, imputation is not recommended, and either mean calculation or transformed sum methods are recommended. A summary score should not be calculated.

Exploring the relationship between acculturation and smoking behavior within four Southeast Asian communities of Minnesota.

OBJECTIVES: This study sought to measure the prevalence of smoking among the Hmong, Vietnamese, Lao, and Cambodian communities of Minnesota and explore the relationship between smoking and acculturation within these communities. METHODS: A community-based participatory research framework was used through all phases of this study. Standard as well as community-developed measures of acculturation were used. Data were obtained by face-to-face and telephone interviews with 1,628 respondents from July 2006 to March 2007. RESULTS: Vietnamese and Cambodian men smoke at higher rates than men in the U.S. general population (35% and 58% compared with 20%, respectively). Most men across the Vietnamese, Cambodian, and Lao populations started smoking prior to immigration to the United States, although most former smokers quit smoking after immigration to the United States. Most male Hmong respondents started smoking after immigration. Education was predictive of smoking status across genders, with less education associated with greater odds of being a smoker. Logistic regression found some acculturation measures to be predictive of smoking status across both genders: Less acculturated male respondents and more acculturated female respondents are more likely to be smokers. DISCUSSION: Results of this study suggest that the role of acculturation in tobacco use may not be straightforward as has been presented previously. Other factors, such as social norms and cultural or linguistic isolation, may also be playing a role in tobacco use patterns and may play different roles for different subgroups. Further research is needed within each population and subgroups within those populations to understand these relationships and how they affect smoking behavior.

The relationship between acculturation and knowledge of health harms and benefits associated with smoking in the Latino population of Minnesota.

OBJECTIVES: This study sought to examine the relationship between acculturation and the knowledge of smoking and health and perception of benefits associated with smoking within the Latino population of Minnesota. In addition to standard acculturation measures, this study employed a multidimensional model and measures of acculturation. METHODS: A telephone and in-person administered survey was conducted across the state of Minnesota with Latino men and women. RESULTS: A total of 804 participants completed the survey, 54% were men. The average age of respondents was 37 years; 81% were foreign born and 68% completed the interview in Spanish. Knowledge of the relationship between smoking and lung cancer (99%) and heart disease (93%) was high. Acculturated respondents indicate a more refined knowledge of the relationship between smoking and health conditions not related to smoking (poor vision and arthritis). Smokers identify more benefits associated with smoking than do non-smokers, with gender (male), education (less than high school) and greater acculturation being significant predictors of perceiving benefits.

The effects of survey mode and asking about future intentions on self-reports of colorectal cancer screening.

Colorectal cancer (CRC) screening rates are often ascertained via self-reports but can be subject to overreporting bias. Asking about intention to get screened before asking about past screening may minimize overreporting of cancer screening. In a statewide survey conducted from July through October of 2005, we embedded an experiment that tested the effect of question ordering (asking about future intention to get screened before or after asking about past screening; "future first" and "future second," respectively), crossed with survey mode (mail versus telephone), on CRC screening rates. Weighted analysis focused on 752 respondents who were ages 50 years or older. We found (a) that asking about future intentions to get screened before asking about past screening (future first) statistically significantly lowers reports of past CRC screening [70.9% future second versus 58.0% future first; odds ratio (OR), 1.83; 95% confidence interval (95% CI), 1.08-3.13]; (b) that there was no main effect of survey mode; and (c) that the effect of the ordering of the future intentions item varies by survey mode. In the mailed survey, the odds of reporting past CRC screening were almost thrice greater in the future second condition compared with the future first condition (72.4% versus 49.0%, respectively; OR, 2.74; 95% CI, 1.22-6.17). In the telephone condition, the odds of reporting were only 28% higher in the future second (69.5%) condition than in the future first condition (63.9%; OR, 1.28; 95% CI, 0.64-2.57). The results suggest that asking about future intentions to get screened before the actual behavior elicits lower, and arguably more truthful reports of CRC screening but mainly in mailed surveys.

Mixed-mode administration reduced bias and enhanced poststratification adjustments in a health behavior survey.

OBJECTIVE: To assess whether a mixed-mode survey design reduced bias and enhanced methods commonly used to correct for bias (poststratification weighting). STUDY DESIGN AND SETTING: The data for this paper are from a study of 1,900 adult patients enrolled in a randomized controlled trial to promote repeat treatment for relapsed smokers at five Veteran's Affairs Medical Centers. A sequential mixed-mode design was used for data collection whereby the initial attempt was conducted using phone administration, with mail follow-up for nonresponders. Analyses examined demographic, health, and smoking cessation treatment seeking differences between telephone responders, mail responders, and nonresponders and compared the relative effectiveness of global vs. targeted poststratification weighting adjustments for correcting for response bias. RESULTS: The findings suggest (1) that responders to the additional survey mode (mail) did not significantly differ from responders to the first mode (phone) or nonresponders and (2) that poststratification weighting adjustments that take this additional information into account perform better than the standard global adjustments. CONCLUSIONS: A mixed-mode design can improve survey representativeness and enhance the performance of poststratification weighting adjustments.

Assessment of health-related quality of life of adolescent cancer patients using the Minneapolis-Manchester Quality of Life Adolescent Questionnaire.

BACKGROUND: Improved survival after childhood cancer has shifted the focus to health-related quality of life (HRQL)-an understudied problem, especially among adolescents. PROCEDURE: We assessed HRQL among adolescents utilizing a validated self-report tool, the Minneapolis-Manchester Quality of Life (MMQL) Adolescent Form, consisting of 46 items comprising seven domains: physical, cognitive, psychological and social functioning, body image, intimate relations, and outlook on life, and computed an overall QoL score. The MMQL Adolescent Form was administered to 226 adolescent survivors of childhood cancer a median of 7.8 years from diagnosis (off therapy-median age: 16.2 years), 136 adolescent cancer patients undergoing therapy (on therapy-median age: 16.4 years), and 134 healthy adolescents (controls-median age: 15.5 years). Primary diagnoses included leukemia (46%), lymphoma (26%), brain tumors (5%), and other solid tumors (23%). RESULTS: Compared to healthy controls, on-therapy patients were at increased risk for reporting poor overall QoL [Odds Ratio (OR) = 3.3, P = 0.002)] and poor physical functioning (OR = 11.8, P < 0.001). Off-therapy survivors did not differ significantly from healthy controls for overall QoL (OR = 1.6, P = 0.5) or any HRQL domains. Female patients, both on- and off-therapy, were more likely to report poorer overall QoL, physical, psychological and cognitive functioning as well as poorer body image when compared with male patients. CONCLUSIONS: While adolescent cancer patients undergoing active therapy report poor physical functioning, there is no evidence of long-term QoL sequelae.

Increasing response rates in a survey of Medicaid enrollees: the effect of a prepaid monetary incentive and mixed modes (mail and telephone).

OBJECTIVES: We sought to evaluate the effect of pairing a mixed-mode mail and telephone methodology with a prepaid US 2.00 dollars cash incentive on response rates in a survey of Medicaid enrollees stratified by race and ethnicity. RESEARCH DESIGN: Sampling was conducted in 2 stages. The first stage consisted of a simple random sample (SRS) of Medicaid enrollees. In the second stage, American Indian, African American, Latino, Hmong, and Somali enrollees were randomly sampled. A total of 8412 enrollees were assigned randomly to receive a mail survey with no incentive or a US 2.00 dollars bill. RESULTS: The response rate within the SRS after the mail portion was 54% in the incentive group and 45% in the nonincentive group. Response rates increased considerably with telephone follow-ups. The incentive SRS response rate increased to 69%, and the nonincentive response rate increased to 64%. Differences between incentive conditions are more pronounced after the first mailing (P < 0.01); almost all differences remained significant (P < 0.05) after the completion of the mail mode. The inclusion of the US 2.00 dollars incentive had similar effects on response rates and cost across the different racial and ethnic strata, except for Latino enrollees. CONCLUSIONS: A mixed-mode mail and telephone methodology is effective for increasing response rates in a Medicaid population overall and within different racial and ethnic groupings. The effectiveness of this strategy can be enhanced, in terms of response rate and cost, by including a US 2.00 dollars prepaid incentive.

Health-related quality of life in young survivors of childhood cancer using the Minneapolis-Manchester Quality of Life-Youth Form.

OBJECTIVE: To assess the health-related quality of life (HRQL) of 8- to 12-year-old children undergoing therapy for cancer or childhood-cancer survivors by using the Minneapolis-Manchester Quality of Life-Youth Form (MMQL-YF), a comprehensive, multidimensional self-report instrument with demonstrable reliability and validity. DESIGN, SETTING, AND PATIENTS: The MMQL-YF consists of 32 items comprising 4 scales: physical functioning, psychologic functioning, physical symptoms, and outlook on life. Scoring on the MMQL ranges from 1 to 5; 5 indicates maximal HRQL. An overall quality-of-life (QOL) score is also computed. By using a cross-sectional study design, the MMQL-YF was administered to 90 off-therapy cancer survivors, 72 children with cancer undergoing active therapy, and 481 healthy children without a history of cancer or other chronic disease. RESULTS: Compared with healthy controls, children actively undergoing cancer treatment report low overall QOL, physical functioning, and outlook-on-life scores. However, off-therapy survivors report a superior overall QOL, compared with age-matched healthy controls. CONCLUSIONS: Young survivors of childhood cancer report a favorable HRQL relative to healthy controls. These results are reassuring, suggesting that this group of survivors may have been too young to encounter some of the negative psychosocial impacts of cancer and its treatment.

The Minneapolis-Manchester Quality of Life instrument: Reliability and validity of the Youth Form.

OBJECTIVE: Improvements in survival after childhood cancer have increased emphasis on health-related quality of life (HRQoL) of survivors. We developed the Minneapolis-Manchester Quality of Life-Youth Form (MMQL-YF) as a standardized patient self-report instrument designed to assess HRQoL in childhood cancer survivors between the ages of 8 and 12 years. STUDY DESIGN: To validate the instrument, the MMQL-YF was administered to 643 children (481 healthy, 162 with cancer). Factor analysis was conducted to refine the instrument, and Cronbach's alpha coefficient was used to measure its internal reliability. Known-groups validity was determined by comparing healthy children with those with cancer. Construct validity was studied by a comparison of similar domains in the MMQL-YF and the Child Health Questionnaire (CHQ). Stability was tested by re-administration of the MMQL-YF 2 weeks later. RESULTS: Internal consistency reliability was in the acceptable range for this instrument. The MMQL-YF was able to distinguish between known groups, and its scales correlated highly with similar CHQ domains. Test-retest reliability showed that the instrument was extremely stable in all scales tested. CONCLUSION: Data provide evidence for the validity and reliability of the MMQL-YF as a comprehensive, multidimensional, self-report instrument for measuring HRQoL among childhood cancer survivors.

Incontinence severity and QOL scales for fecal incontinence.

This article reviews self-reporting instruments to measure severity and quality of life in fecal incontinence. Severity instruments assess the frequency, type, and amount of stool loss and the impact of fecal incontinence on coping mechanisms and lifestyle/behavioral change. Non-weighted instruments use simple numerical totals to gauge severity; however, the use of vague quantifiers to describe severity can make the results highly subjective. In weighted surveys, every possible response (indicating the frequency of each type of incontinence) is multiplied by a weight that reflects the average severity assigned by a representative group of patients (or physicians), and the weighted responses are added to compile a total score. When variables such as coping mechanisms and lifestyle changes are included in severity questionnaires, the results tend to reflect patient functioning more than severity and should be interpreted cautiously. Quality-of-life scales assess variables that are not directly observable and are highly subjective. Quality-of-life scales are divided into 3 categories: (1) generic scales permit the measurement of gross change and compare the experience of the target population to other populations; (2) specialized scales are most useful in trying to isolate effects of specific variables, such as depression; and (3) condition-specific quality-of-life scales measure the relationship between specific medical conditions or treatments, and quality of life outcomes. Future research should focus on the need for weighting, further evaluation of the use of coping mechanisms as an indicator of severity, and how to integrate measures of urgency. In the area of quality of life, "modules" are needed that can be appended to established instruments to help assess and compare the experience of specific populations.