Translation, validity and reliability of the persian version of the rapid assessment of physical activity questionnaire.

PURPOSE: The purpose of this study was to produce a valid and reliable Persian version of the Rapid Assessment of Physical Activity (RAPA) questionnaire, which previously has been shown to be valid and reliable for assessing physical activity among older adults. METHODS: Permission was obtained from the scale developer, who provided a copy of the the Linguistic Validation of the RAPA Qestionnaire, which utilizes a forward-backward translation methodology. Content validity, face validity, and construct validity of the questionnaire were then determined. Comparison of known groups (older adults with more or less than 50% balance confidence) was used to assess construct validity and the Leiden-Padua (LEIPAD) quality of life questionnaire were used to assess convergent validity. Three hundred older adults, who were members of the Qom retirement centers, participated in the study. Thirty participants completed the RAPA twice with a one-week interval to determine test-retest reliability. RESULTS: Results of comparisons of known groups showed that the mean RAPA score of the older people with greater balance confidence was significantly higher. Significant correlations between most of the scores obtained from both RAPA and the LEIPAD questionnaires confirmed the convergent validity of the questionnaire. Intraclass Correlation Coefficient (ICC) was as high as 0.94 showing that the test-retest reliability was good. CONCLUSION: This study showed the Persian RAPA is a reliable and valid instrument for measuring physical activity among older individuals in both research and clinical contexts.

Shared Surgical Decision Making and Youth Resilience Correlates of Satisfaction With Clinical Outcomes.

The aim of this study was to identify factors associated with youth satisfaction with surgical procedures performed to address oral cleft or craniofacial conditions (CFCs). It was hypothesized that youth mental health, participation in decision making, perceived consequences of living with a CFC, and coping strategies would be associated with satisfaction with past surgeries. A total of 203 youth between the ages of 11 and 18 years (mean age = 14.5, standard deviation = 2.0, 61% male participants, 78% oral cleft) completed a series of questionnaires measuring depression, self-esteem, participation in decision making, condition severity, negative and positive consequences of having a CFC, coping, and satisfaction with past surgeries. Multiple regression analysis using boot-strapping techniques found that youth participation in decision making, youth perception of positive consequences of having a CFC, and coping accounted for 32% of the variance in satisfaction with past surgeries (P < 0.001). Youth age, sex, and assessment of condition severity were not significantly associated with satisfaction with surgical outcome. Depression, self-esteem, and negative consequences of having a CFC were not associated with satisfaction with past surgeries. Youth should be actively involved in the decision for craniofacial surgery. Youth who were more satisfied with their surgical outcomes also viewed themselves as having gained from the experience of living with a CFC. They felt that having a CFC made them stronger people and they believed that they were more accepting of others and more in touch with others' feelings because of what they had been through.

What difference can a minute make? Social skills and first impressions of youth with craniofacial differences.

OBJECTIVE: To determine whether raters' first impressions of youth with craniofacial differences are modifiable. DESIGN: Observational study of the association between first impressions and social skills as related to youth aged 11 to 18 years with craniofacial differences. SETTING: University research offices and clinics. PARTICIPANTS: Youth aged 11 to 18 years with (n  =  29) and without (n  =  31) craniofacial differences; adults (n  =  40), dental/medical students (n  =  46), and education students (n  =  29), all without craniofacial differences. Participants were recruited from medical clinics and through community advertising at all three study sites. OUTCOME MEASURES: The First Impressions Rating Scale. RESULTS: After viewing 1-minute portrayals of positive social skills by actors with craniofacial differences, raters' perceptions moved significantly in the positive direction for all 26 attributes on the First Impressions Rating Scale; whereas, after viewing negative social skills, ratings moved significantly in the negative direction for 25 of 26 First Impressions Rating Scale attributes. CONCLUSIONS: It appears that first impressions others have of youth with craniofacial differences are significantly affected by how these youth present themselves in social situations, suggesting that positive social skills may help reduce the amount of stigma that youth with craniofacial differences encounter.

Sexual functioning in adolescents and young adults with spina bifida.

OBJECTIVE: To assess sexual education and sexual functioning in adolescents and young adults with spina bifida. DESIGN: Survey, inception cohort. SETTING: The community. PARTICIPANTS: A cohort of adolescents and young adults (N=121; range, 15-35 y; 58% women) enrolled in a longitudinal pediatric database. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Questions on sexual function, reproductive function, bladder and bowel continence, the Perceived Quality of Life Scale, and the Satisfaction With Life Scale. RESULTS: Almost all adolescents and young adults with spina bifida in our study received sexual education at school, less at home, or by physicians. Twenty-five percent of men and 68% of women were informed about reproductive function by their physicians. Participants who reported that they smoked were 10 times more likely to report being sexually active and women were 2.3 times more likely to be sexually active than men. Hydrocephalus was a significant predictor of sexual activity among women but not men. Participants with urinary incontinence were less likely to be sexually active. Women without hydrocephalus were significantly more satisfied with life than women with hydrocephalus. CONCLUSIONS: Adolescents and young adults with spina bifida in this sample were only slightly satisfied with life and sexual activity was only associated with life satisfaction among women. Dissatisfaction with life often leads to engagement in health-risk behaviors, which may, in part, account for the association between sexual activity and smoking behavior observed in these data. Further studies of health risk behaviors among youth with spina bifida are warranted and interventions aimed at reducing health risk behaviors among adolescents and young adults should specifically include spina bifida as a target group.

Developing a Telephone Assessment of Physical Activity (TAPA) questionnaire for older adults.

INTRODUCTION: We report on development and preliminary validation of a brief, telephone-based measurement tool for assessing physical activity in older adults. The Telephone Assessment of Physical Activity (TAPA) questionnaire is based on the University of Washington Health Promotion Research Center's Rapid Assessment of Physical Activity (RAPA), a written questionnaire. METHODS: The Rapid Assessment of Physical Activity questionnaire was modified to permit interviewers to administer it as a telephone interview. We retained its scoring levels and interpretation. The pilot test of the telephone version assessed the questionnaire's ease of administration and construct validity in a community-based sample of older adults. Spearman rho and kappa statistics were computed for comparison with the Rapid Assessment of Physical Activity questionnaire and the Community Healthy Activities Model Program for Seniors questionnaire. RESULTS: Thirty-four older adults completed the telephone assessment. A Spearman rho of 0.74 and a kappa statistic of 0.48 were found between TAPA and the written RAPA. CONCLUSION: The pilot test demonstrated that the TAPA questionnaire is a promising instrument for use as a brief, telephone-based questionnaire for assessing physical activity in older adults.

The Rapid Assessment of Physical Activity (RAPA) among older adults.

INTRODUCTION: The Rapid Assessment of Physical Activity (RAPA) was developed to provide an easily administered and interpreted means of assessing levels of physical activity among adults older than 50 years. METHODS: A systematic review of the literature, a survey of geriatricians, focus groups, and cognitive debriefings with older adults were conducted, and an expert panel was convened. From these procedures, a nine-item questionnaire assessing strength, flexibility, and level and intensity of physical activity was developed. Among a cohort of 115 older adults (mean age, 73.3 years; age range, 51-92 years), half of whom were regular exercisers (55%), the screening performance of three short self-report physical activity questionnaires--the RAPA, the Behavioral Risk Factor Surveillance System (BRFSS) physical activity questions, and the Patient-centered Assessment and Counseling for Exercise (PACE)--was compared with the Community Healthy Activities Model Program for Seniors (CHAMPS) as the criterion. RESULTS: Compared with the BRFSS and the PACE, the RAPA was more positively correlated with the CHAMPS moderate caloric expenditure (r = 0.54 for RAPA, r = 0.40 for BRFSS, and r = 0.44 for PACE) and showed as good or better sensitivity (81%), positive predictive value (77%), and negative predictive value (75%) as the other tools. Specificity, sensitivity, and positive predictive value of the questions on flexibility and strength training were in the 80% range, except for specificity of flexibility questions (62%). Mean caloric expenditure per week calculated from the CHAMPS was compared between those who did and those who did not meet minimum recommendations for moderate or vigorous physical activity based on these self-report questionnaires. The RAPA outperformed the PACE and the BRFSS. CONCLUSION: The RAPA is an easy-to-use, valid measure of physical activity for use in clinical practice with older adults.

Toward youth self-report of health and quality of life in population monitoring.

This paper addresses population monitoring of youth health and quality of life, including the concepts used, methodological and practical criteria for indicators, and existing surveys and measures. Current population surveys of youth generally focus on poor health, such as disability or health-risk behaviors. Although these are important end points, indicators of illness or risk do not reflect the health or life perspective of the majority of youth who do not experience health problems. The measures used to monitor youth health should be appropriate and sensitive to future needs and capture the perspectives of youths. Two potential concepts for this "scorecard" are self-perceived health and quality of life, which have been shown to be useful in adults. For youth, the quality of life framework seems particularly relevant as it incorporates both positive and negative aspects of health and well-being and also captures salient aspects of health other than physical health, such as sense of self, social relationships, environment and culture, and life satisfaction.

Quality of life of adolescent males with attention-deficit hyperactivity disorder.

Most psychosocial research on attention-deficit/hyperactivity disorder (ADHD) has focused on deficits in school, family, or behavioral functioning without incorporating perceived quality of life (QoL) or the adolescents' perspective. The Youth Quality of Life Instrument--Research Version (YQOL-R), was used to assess self-perceived QoL in a community sample of adolescents aged 11-18 years. Fifty-five adolescent males with a clinical diagnosis of ADHD were compared to a group of 107 adolescents with no chronic conditions (NCC) and a group of 52 adolescents with mobility impairments (MI). The adolescents with ADHD reported significantly lower perceived QoL scores, particularly in the Self and Relationship domains, than the NCC group. Their scores were similar to those from the group with MI, a group previously shown to have a substandard QoL. Interventions to improve self-esteem and social interactions might use QoL outcomes in evaluating effectiveness.

Validation of a quality-of-life measure for deaf or hard of hearing youth.

OBJECTIVE: Quality-of-life (QOL) measures targeting youth with hearing loss are useful in population needs assessment, educational placement, and program design and evaluation. This study assesses the cross-sectional validity of the Youth Quality of Life Instrument-Deaf and Hard of Hearing Module (YQOL-DHH). STUDY DESIGN. Instrument development and cross-sectional survey. SETTING: Recruitment through schools, professional organizations, clinics, and programs for youth who are deaf or hard of hearing. SUBJECTS AND METHODS. Thirty-five candidate items were administered to 230 adolescents aged 11 to 18 years: 49% female, 61% white, 11% mild hearing loss, 20% moderate/moderate-severe, 41% severe/profound, and 28% with cochlear implants. Participants completed individual or group-administered questionnaires by paper and pencil (58%), Web-based English (29%), American Sign Language (ASL) or Pidgin Signed English (PSE) (9%) on DVD, or interviewer-supervised ASL or PSE DVD (4%). The Children's Depression Inventory (CDI-S) was also completed. Factor structure, reliability, construct validity, and respondent burden were assessed. RESULTS: Thirty-two items were retained in the final instrument covering 3 domains: self-acceptance/advocacy (14 items, Cronbach α = 0.84), perceived stigma (8 items, Cronbach α = 0.85), and participation (10 items, Cronbach α = 0.86). QOL was not significantly associated with hearing level. One-week test-retest coefficients were acceptable: self-acceptance/ advocacy (0.70), perceived stigma (0.78), and participation 0.92). As predicted, the total CDI-S score was associated in the appropriate direction (P < .0001) with all YQOL-DHH domains. Time to complete the paper-and-pencil version was 12 minutes. CONCLUSION: The YQOL-DHH shows good reliability and validity for assessing hearing-specific QOL in adolescents.

Stigma experiences in youth with facial differences: a multi-site study of adolescents and their mothers.

OBJECTIVES: To describe stigma experiences of adolescents with congenital and acquired facial differences. DESIGN: Used baseline cross-sectional stigma-related responses from a four site (Seattle WA, Galveston TX, Chicago IL and Chapel Hill NC) US study enrolling 185 English speaking, US participants ages 1118 years old with facial differences (60% male; 80% congenital conditions). Closed-ended, self-administered questions drawn from the Youth Quality of Life Instrument Facial Differences Module (YQOL-FD) determined perceptions of stigmatization. Mothers (n=153) were independently asked seven matching questions. RESULTS: Frequencies report combined responses of 'sometimes,' 'fairly often,' and 'very often.' Mother's responses are in parentheses. *35% (47%) noticed people staring at their face in the past week. * 28% (43%) talked with others about how their face looks in the past month. * 29% (31%) heard others say something about their face in the past month. * 32% (32%) told peers about their facial difference in the past month. * 12% (12%) felt left out of doing things with peers because of how their face looks in the past month. * 11% (8%) got into a fight because of how their face looks in the past month. * 20% (18%) were teased about how their face looks in the past month. CONCLUSIONS: Stigma experiences were frequently reported by youth with facial differences and were correlated with independent parental report. This level of stigma suggests that media and public health interventions may be warranted to reduce discrimination, prejudice and negative adolescent social experiences related to facial difference.

Measuring the quality of life of youth with facial differences.

OBJECTIVE: To describe the Facial Differences Module of the Youth Quality of Life Instruments (YQOL-FD) and present results evaluating domain structure, internal consistency, reproducibility, validity, and respondent burden. DESIGN: A multisite observational study of youth aged 11 to 18 years with acquired or congenital facial differences. PARTICIPANTS: Three hundred seven youth recruited through clinics at four U.S. sites and one U.K. site. Eligible youth were aged 11 to 18 years, had a noticeable facial difference, could read at the fifth-grade level, and, for youth with facial burns, were at least 2 years posttrauma. MEASURES: Included were the newly developed YQOL-FD, the generic Youth Quality of Life Instrument, the Children's Depression Inventory, and demographics. RESULTS: Principal components analysis showed five significant factors that closely matched the domain structure hypothesized a priori. Domain scores of the YQOL-FD showed acceptable internal consistency and reproducibility. Scores were more strongly correlated with the Children's Depression Inventory score than with self-rating of health as predicted. All domain scores showed adequate discrimination among levels of general quality of life (Wilks lambda = 0.84, p = .001). The median time to complete the module was 10 minutes. DISCUSSION: The YQOL Facial Differences Module augmented information obtained from the generic YQOL measure by addressing specific concerns. The module was well received by youth and showed acceptable measurement properties for evaluating the perceived quality-of-life status of youth facial differences. Future use in longitudinal studies and clinical trials is anticipated to evaluate the ability to detect change.

Inclusion of people with disabilities in telephone health surveillance surveys.

OBJECTIVES: Telephone survey data are widely used to describe population health, but some fear that people with disabilities cannot participate. We tested the hypothesis that a telephone survey would underrepresent adults with disabilities, and that the adults with disabilities who responded would report lower prevalences of sensory, mental, self-care, and multiple limitations than those observed in people with disabilities in the general population. METHODS: We compared characteristics of adults with disabilities identified by the 2001 Washington State Behavioral Risk Factor Surveillance Survey (BRFSS) to Washington adults with disabilities in the Census 2000 Supplementary Survey (C2SS), to 2 BRFSS Disability Supplements, and to the Washington State Population Survey. All except the C2SS are telephone surveys. RESULTS: Contrary to expectations, post hoc analyses of all telephone surveys found significantly higher prevalence of disability in the Washington adult population than did the C2SS. The hypothesis of more sensory, mental, and self-care limitation in telephone disability samples was supported in only 2 of 11 instances in which a disability sample was asked about 1 of these limitations. Findings were not explained by differences in disability definition or type of informant. CONCLUSIONS: These results suggest that population telephone surveys do not underrepresent adults with disabilities. The counterintuitive finding of their higher survey participation raises further questions.

Quality of life: how do adolescents with facial differences compare with other adolescents?

OBJECTIVE: Compare the quality of life (QOL) of youth living with visible facial differences (FDs) with youth living with a visible nonfacial difference (i.e., mobility limitations), an invisible difference (i.e., attention deficit/hyperactivity disorder), or no known difference. DESIGN: An observational study of perceived QOL among adolescents with FDs (n = 56), adolescents with no diagnosed chronic condition (NCC, n = 116), adolescents with mobility limitations (ML, n = 52), and adolescents with attention deficit/hyperactivity disorder (ADHD, n = 68). PARTICIPANTS: Adolescents ages 11-18 years with FDs recruited through Children's Hospital, Seattle, Washington, participated in this study. Comparison groups were from a previous study of QOL among youth with and without chronic conditions. MAIN OUTCOME MEASURES: The main outcome measure was the Youth Quality of Life Instrument-Research Version, a generic instrument that assesses both perceptual and contextual aspects of QOL in four domains: Sense of Self, Relationships, Environment/Culture, and General Quality of Life. RESULTS: A MANCOVA adjusting for age, gender, and depressive symptomatology revealed that adolescents with FDs, on average, reported significantly lower overall QOL than did the NCC group. Their domain scores were similar to those of the other chronic conditions groups on all but the relationship domain. Reviewing the constituent items of the relationship domain revealed that adolescents in the ML and FDs groups reported higher scores than either the NCC group or the ADHD group on the relationship variables concerning family. CONCLUSIONS: Adolescents with facial differences confront significant challenges to their own self-identity while experiencing higher QOL from relationships, possibly from their need to negotiate and maintain close family support.

Approaches to craniofacial-specific quality of life assessment in adolescents.

OBJECTIVE: To ascertain the domains that adolescents aged 11 to 18 years with congenital and acquired craniofacial differences (CFDs) consider important to their quality of life (QoL) to create a craniofacial-specific module. DESIGN: Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs. SETTING: The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington. PATIENTS, PARTICIPANTS: Thirty-three in-depth interviews with adolescents (aged 11 to 18 years), one young adult interview (age 19 years), 14 in-depth interviews with parents, one young adult focus group, one parent focus group, and one panel of researchers and clinical professionals working in the field. RESULTS: Using the qualitative methodology, grounded theory, seven domains that adolescents with CFDs perceive are important to having a good QoL were found. Six of the domains (coping, stigma and isolation, intimacy and trust, positive consequences, self-image, and negative emotions) comprised the Youth Quality of Life Instrument-Facial Differences module. One other domain, surgery, was a salient issue for many of the youth, but not all, so it was made into a separate module, the Youth Quality of Life Instrument- Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery. CONCLUSIONS: Using an established qualitative methodology, two QoL modules specific to adolescents with CFDs were developed and are ready for psychometric validation. Potential uses of the instruments are discussed.

Quality of life of adolescents with perceived disabilities.

OBJECTIVE: To compare the self-perceived quality of life (QoL) of adolescents with and without disabilities. METHOD: A school-based survey was conducted with 2801 7th to 12th grade students in a rural area of the United States. The Youth Quality of Life Instrument-Surveillance Module and the Youth Quality of Life Group-Disability Screener were completed. RESULTS: Twenty-one percent of all students surveyed reported having one or more physical, emotional, or learning disabilities. Adolescents with disabilities reported lower QoL than adolescent without disabilities. However, self-rated health, depressive symptoms, and contextual variables were significant covariates in the relationship between disability and QoL. CONCLUSIONS: These findings suggest channels to improve the QoL of adolescents with disabilities. Specifically, reducing social and environmental barriers to promote inclusion of adolescents with disabilities in school, family, and community activities is one practical avenue for reducing disparities in QoL.

Adolescent quality of life, part II: initial validation of a new instrument.

The psychometric properties of the Youth Quality of Life Instrument-Research Version (YQOL-R) perceptual module are presented. Self-reports were obtained from 236 youth aged 12-18 years with mobility disability, attention-deficit hyperactivity disorder, or without self-reported chronic conditions. Item and factor analyses confirmed the hypothesized conceptual model derived from previous qualitative research. The scales of the YQOL-R showed acceptable internal consistency (Cronbach's alpha=0.77-0.96), reproducibility (ICCs=0.74-0.85), expected associations with other constructs, and ability to distinguish between known groups. The YQOL-R showed sufficient validity to encourage further use.