Biomedical subjects

Nancy L Young

Publications and source records attributed to Nancy L Young.

At least 19 recordsLinked to original sources

PubMed2006

The Quality of My Life questionnaire: the minimal clinically important difference for pediatric rheumatology patients.

OBJECTIVE: To determine parent-child agreement for the Quality of My Life (QoML) questionnaire. To establish construct validity of the QoML questionnaire. To determine the minimal clinically important difference (MCID) for the Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales. METHODS: A total of 136 families of children with inflammatory arthritis were interviewed. The QoML questionnaire was completed for the child's current state of health, and under 2 hypothetical scenarios, where (1) there is a hypothetical small improvement, and (2) there is a hypothetical small deterioration in health. The differences between the original QOL and HRQOL scores and hypothetical improvement and deterioration scores, respectively, were calculated to give MCID scores. RESULTS: In total, 131 families completed the questionnaires. Intraclass correlation coefficients for parent proxy report and patient self-report of the QOL and HRQOL were 0.63 and 0.40, respectively. Correlations of QOL with pain and disease severity were moderately negative (r = -0.55 and -0.56, respectively, p < 0.0001). Correlations of HRQOL with pain and disease severity were strongly negative (r = -0.66 and r = -0.68, respectively, p < 0.0001). The MCID for improvement on the QOL was 7 mm, and for the HRQOL 11 mm. The MCID for deterioration in QOL was -33 mm, and for HRQOL -38 mm. CONCLUSION: The QoML questionnaire demonstrated fair parent-child agreement and good convergent construct validity. MCID scores will enable clinicians to interpret QoML questionnaire results in a clinically meaningful way.

Arthritis↗

PubMed2006

Safety and acceptability of the candidate microbicide Carraguard in Thai Women: findings from a Phase II Clinical Trial.

OBJECTIVE: To determine the safety and acceptability of vaginal application of Carraguard, a carrageenan-derived candidate microbicide gel. DESIGN: A randomized, placebo-controlled, triple-blinded clinical trial was conducted in Chiang Rai, northern Thailand. METHODS: Women were asked to insert one applicator of study gel vaginally at least three times per week (with or without sex) and to use gel with condoms every time they had sex. Safety was assessed by visual inspection of the vagina and cervix, changes in vaginal flora and self-reported symptoms at day 14, month 1 and then monthly for up to 1 year. Acceptability was assessed through reported use of the gel, return of used and unused applicators, and quarterly interviews. RESULTS: One hundred sixty-five women were randomized: 83 to Carraguard and 82 to the placebo (methylcellulose gel) group. Study gel use was similarly high in both groups throughout the trial with an average of four applicators per week. Carraguard use was not associated with abnormal genital clinical findings, abnormal vaginal flora, Pap smear abnormalities or other abnormal clinical signs or symptoms. Adverse events were mostly mild, not attributed to gel use, and similarly distributed between groups. Participants in both groups reported high acceptability. CONCLUSIONS: Carraguard can safely be used an average of four times per week with or without sex and is acceptable to Thai women. A Phase III efficacy trial of Carraguard is warranted and is currently ongoing in South Africa.

Administration, Intravaginal↗

PubMed2006

Advancing rehabilitation research: an interactionist perspective to guide question and design.

The purpose of this position statement is to propose an interactionist framework to bring together the existing literature and provide a unifying direction for rehabilitation research. The framework comprises three components: the conceptual model, the research question, and the research design. The interactionist conceptual model has been adapted from the World Health Organization International Classification of Functioning, Disability, and Health. The model forms the starting point that guides the specification of the research question, which, in turn, guides the selection of research design. This approach demands that the question takes precedence and that there be an extensive repertoire of research designs, each of which is valued for its 'goodness-of-fit' with the question, rather than an a priori, single hierarchical ordering of designs. Research designs must be appropriate for questions that examine the disability experience, development over the lifespan, multifaceted interventions, low incidence conditions, and development of new interventions. Analytical challenges include dealing with confounding, mediating, and moderating variables. Rehabilitation researchers--and those who fund their work--should consider and value the use of diverse research methods to best answer the questions posed from the interactionist perspective.

Biomedical Research↗

PubMed2006

How well does the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia?

BACKGROUND: It is important to measure the quality of life (QoL) of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time. A disease-specific measure of QoL is required because the aspects of life that are affected by haemophilia may differ from those assessed by generic QoL measures. This paper describes the final phase of development of a disease-specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT). PROCEDURE: A 79-item version of the CHO-KLAT was administered to 52 children. A detailed item analysis was conducted to shorten the CHO-KLAT. The reliability of the revised version was assessed using intraclass correlation coefficients. Validity was assessed by comparing it to the PedsQL and the HaemoQoL. RESULTS: The item analysis resulted in the retention of 35 strongly performing items (CHO-KLAT(35)). These items were aggregated into the CHO-KLAT(35) summary score. Repeated measures reliability of the CHO-KLAT(35) was 0.74 for children and 0.83 for parents, and the child-parent concordance was 0.75. The validity of the CHO-KLAT(35) was confirmed by a correlation of 0.78 with the Haemo-QoL and of 0.59 with the PedsQL. CONCLUSIONS: The CHO-KLAT(35) is a reliable and valid measure of QoL for boys with haemophilia.

Adolescent↗

PubMed2006

Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children.

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.

Adolescent↗

PubMed2005

Use of health care among adults with chronic and complex physical disabilities of childhood.

PURPOSE: The purpose of this study was to explore the patterns of health services utilization among adults with chronic and complex physical disabilities of childhood, specifically cerebral palsy, spina bifida, and acquired brain injuries.METHODS. A cohort of 345 young adults who had graduated from the Bloorview MacMillan Children's Centre was identified. Their health care records were extracted from Ontario Health Insurance Plan (OHIP) and Canadian Institute for Health Information (CIHI) databases, for a four-year period. These data were analysed to estimate the frequency of out-patient physician visits and admissions to hospital.RESULTS. The mean age of the sample was 21.9 years (range 19.0-26.9 years). The results show that 95% of the sample visited a physician at least once per year, and 24% had a primary care physician. On average, these adults visited physicians 11.5 times per year (approximately once per month) and were admitted to hospital once every 6.8 years.CONCLUSIONS. These results suggest that adults with complex physical disabling conditions from childhood have ongoing health issues that require frequent service. Their admission rate is 9.0 times that of the general population, and few have a primary care physician. A new model of service may be necessary for this high-needs group.

Adult↗

PubMed2005

Evaluating physical function in an adolescent bone tumor population.

BACKGROUND: Survival rates for patients with bone tumors have increased dramatically over the past few decades. Unfortunately, many patients face functional limitations resulting from disease management, but there is little evidence regarding physical functioning in adolescents with bone tumors. This lack is largely due to the absence of a standardized measure for evaluating adolescent sarcoma physical functioning. This review discusses considerations in searching for a measure of adolescent physical functioning, evaluates measures previously used in assessing functional outcome in young sarcoma patients, reviews self-report measures of pediatric physical functioning, and makes recommendations for future research. PROCEDURE: Electronic databases were searched for studies published between 1980 and 2004. Studies examining physical functioning in adolescent sarcoma patients and those describing measures of pediatric physical functioning were included. RESULTS: The study includes measures previously used in the adolescent bone tumor literature (Musculoskeletal Tumor Society, Mankin, Groningen Activity Restriction Scale, Toronto Extremity Salvage Score [TESS]), and three measures of pediatric physical function (Functional Disability Inventory, Pediatric Outcomes Data Collection Instrument [PODCI], Activities Scale for Kids [ASK]). The TESS, PODCI, and ASK each met at least four of the outlined applicability and feasibility components. CONCLUSION: The search for a measure of physical functioning for adolescent sarcoma patients requires an exploration of many developmental and measurement issues. Based on the sensibility review presented, the TESS, PODCI, and ASK are recommended for further evaluation of content and of the measurement properties of reliability, validity, and responsiveness, prior to their use in evaluating adolescent sarcoma patients.

Activities of Daily Living↗

PubMed2004

Impairment and activity limitation associated with epiphyseal dysplasia in children.

OBJECTIVES: To develop a profile of impairment and activity limitation among children with epiphyseal dysplasia (ED) and to identify the relationship between these 2 domains. DESIGN: Cross-sectional study. SETTING: Acute, pediatric academic and health sciences center. PARTICIPANTS: Eleven subjects with multiple epiphyseal dysplasia (MED) and 17 subjects with spondyloepiphyseal dysplasia (SED), with a mean age of 12.9 years. INTERVENTIONS: Not applicable. Main outcome measures Anthropometric indexes of growth and nutrition, joint range of motion (ROM) and alignment, muscle strength, pain, and activity limitation. RESULTS: Subjects with SED had significantly shorter stature than the reference population (P<.01). Seventy-three percent of participants with MED and 77% of those with SED were above average or overweight for their height (P<.01). Both groups presented with moderate to severe joint ROM impairment, with greater lower-extremity involvement. Subjects with SED had worse outcomes with respect to overall ROM and alignment impairments (P<.01), particularly in their upper extremities (P<.01), than subjects with MED. Significant overall muscle weakness was noted in all subjects (z=-1.81; P<.01). Ninety-four percent of subjects with SED reported pain with activity, compared with 64% of those with MED (P=.04), although pain intensity did not differ between groups. Fifty percent of subjects had undergone orthopedic surgery. Mild activity limitation was reported by all subjects (mean score, 87.7+/-18.83). Significant correlations were identified between height for age and strength (r=.50) and pain and activity limitation (r=-.50). CONCLUSIONS: Despite moderate to severe impairments, all subjects reported surprisingly mild activity limitation. A positive correlation was identified between pain and activity limitation. This study also identified and described patterns of muscle weakness, pain, and nutritional concerns not previously reported in the ED literature.

Adolescent↗

PubMed2004

Telehomecare: a comparison of three Canadian models.

The delivery of health care is often segmented into sectors. In Canada, hospital care has traditionally been distinct from community care, and thus the transition of patients across sectors has been challenging. This paper focuses on the systematic development of an integrated model of care for children, for the purpose of smoothing the transition from hospital to home. The new service model uses emerging telecommunications technology to link hospital care providers to patients at home and is termed "telehomecare" (THC). Independent models of THC were developed for three sites across Canada through semistructured interviews and focus groups. Participants included health care providers and administrators from the hospital and community, and patient families. The resulting models were compared using content analysis to determine whether there was a core model of THC that was generalisable across Canada. A core model of THC was identified that includes the use of videoconferencing to enable the integration of hospital- and community-based care to support patients during the initial stages of the transition to home. Each site also articulated unique characteristics in their service model that were related to the nature of their health care delivery system and patient population. This paper describes the core model of transitional care, presents a synopsis of each of the three models, and compares the models. THC provides opportunities to address limitations in the current system and to improve upon equity of access to quality care for children making the transition from hospital to home.

Aftercare↗

PubMed2003

Words used by children and their primary caregivers for private body parts and functions.

BACKGROUND: Effective patient-physician communication requires the use of words that are clearly understood by both parties. We conducted this study to compile a list of words used by children and caregivers to describe "private" anatomical structures and physiological functions, to document the frequency of such usage and to examine the relation between correct word usage and caregiver's level of education. METHODS: In a large urban pediatric emergency department, a convenience sample of 156 children at least 3 years old were asked to name the body parts (penis, testes, vagina, buttocks, breasts) pointed to in 4 simple, explicit line drawings of an unclothed boy or girl, and to name the bodily functions (vomiting, defecation, urination) depicted in 3 drawings of children. Eighty-seven patients sufficiently fluent in English were included in the study. Their caregivers were asked separately what words they currently use with their child and with other adults for these body parts and functions and what words they remembered using as children. RESULTS: The children used a mean of 1.2 correct anatomical and physiological terms out of a possible 8 to describe the private parts and functions in the drawings. The mean number of correct words used by the caregivers was 2.3 when talking with their children, 3.6 when talking with their peers and 1.5 when they were children. There was no correlation between the caregiver's level of education and the frequency of correct word usage by their children. We identified slang words used by at least 5% of the respondents; however, some used the same slang words to refer to different body parts. INTERPRETATION: Given the variety of slang words used by children and their caregivers to describe private parts and functions, the meaning of the words should be clarified during history taking.

Body Image↗

PubMed2003

Polymorphisms in the CCR5 coding and noncoding regions among HIV type 1-exposed, persistently seronegative female sex-workers from Thailand.

Resistance to HIV-1 infection despite repeated exposures has been associated with one or more HIV-specific responses, enhanced nonspecific immune modifications, and/or host genetic polymorphisms in certain individuals (highly exposed, persistently seronegative, HEPS). In the present investigation, we focused on the CCR5 gene polymorphisms and the association of such mutations to resistance to HIV-1 infection among 12 HEPS women in Chiang Rai, northern Thailand, and compared our findings with data from 10 HIV-1-infected and 9 HIV-1-uninfected unexposed women from the same geographic area. Although we have previously shown that none of the Thai women carried the Delta32 mutation, further analysis of the CCR5 coding gene region revealed that none of the women had other mutations that affect coreceptor activity (C101X or FS299) or chemokine responses (C20S, A29S, L55Q, C178R). Analysis of the CCR5 promoter region revealed that the CCR5 haplogroup C (HHC; 60%) was the predominant haplogroup among these women. Comparative analysis of the frequencies of different haplogroups among the three groups did not reveal any statistically significant differences (p > 0.05). However, we did find that two individuals from the HEPS group were homozygous for HHF*2 (the CCR2b- 64I bearing haplogroup) compared to none from the HIV-1-infected and -uninfected groups. There was no detectable difference in specific CCR5 haplogroups and their ability to mediate env fusion or to mediate HIV-1 infection in vitro. These data suggest that homozygosity of the HHF*2 haplogroup may be one of the factors that mediate resistance to HIV-1 infection in this cohort of HEPS women.

Adult↗

PubMed2003

New HIV type 1 CRF01_AE/B recombinants displaying unique distribution of breakpoints from incident infections among injecting drug users in Thailand.

The goals of this study were to identify and characterize recombinant human immunodeficiency virus type 1 (HIV-1) genomes among incident infections in a prospective cohort study of injecting drug users (IDUs) in Bangkok, Thailand. Through cross-sectional, comparative phylogenetic analysis of the protease and env (C2-V4) gene regions, subtype discordance was observed in HIV-1 sequences from 4 of 111 IDUs (3.5%). Near-full-length HIV-1 genome sequences of the four strains revealed that in all four, the gp120 sequences clustered with a CRF01_AE prototype, while the remainder of the genomes displayed distinct mosaic patterns, with multiple breakpoints between HIV-1 CRF01_AE and subtype B-like regions. Two of the four HIV-1 recombinant strains displayed a nearly identical mosaic structure, suggesting the possible emergence and spread of a potentially new circulating recombinant form of HIV-1. Further characterization of these and other recombinant genomes through long-term follow-up will be important in understanding the generation of viral diversity and escape from the hosts immune responses. This information will be especially important for vaccine development.

Genome, Viral↗

PubMed2003

Human immunodeficiency virus type 1 subtype and other factors associated with extrapulmonary Cryptococcosis among patients in Thailand with AIDS.

Delineating factors associated with extrapulmonary cryptococcosis (EPC), a major disease burden among Thailand's AIDS patients, can clarify its pathogenesis and guide preventive interventions. From November 1993 through June 1996, enhanced surveillance of 2261 human immunodeficiency virus (HIV)-seropositive patients in a hospital near Bangkok showed EPC among 561 of 1553 AIDS patients (36.1%). Univariate analysis results were confirmed by multivariate analyses of data on 1259 patients. Logistic regression models identified factors significantly associated with EPC to be male sex (adjusted odds ratio [aOR], 2.0; 95% confidence interval [CI], 1.3-2.9), age <33 years (aOR, 1.5; 95% CI, 1.2-1.9), severe immunosuppression (aOR, 1.8; 95% CI, 1.3-2.6), not injecting drugs (aOR, 3.0; 95% CI, 1.7-5.5), and infection with HIV-1 circulating from CRF01_AE (formerly subtype E) versus subtype B (aOR, 2.3; 95% CI, 1.2-4.5). The association with CRF01_AE may result from undetermined markers of exposure or viral subtype effects on host immune responses. Better understanding of the epidemiology of EPC may reduce EPC incidence through targeted primary prevention and treatment.

AIDS-Related Opportunistic Infections↗

PubMed2003

Evaluation of a sensitive/less sensitive testing algorithm using the bioMérieux Vironostika-LS assay for detecting recent HIV-1 subtype B' or E infection in Thailand.

The performance of the bioMérieux Vironostika-LS EIA (less sensitive enzyme immunoassay) was assessed to detect recent seroconversion among injecting drug users (IDUs) in Bangkok, Thailand who were infected with either HIV-1 subtypes B' or E (also known as circulating recombinant form CRF01_AE). To evaluate the Vironostika-LS EIA in non-B subtypes, we collected longitudinal specimens (n = 796) from 115 IDUs (subtype B' infection, n = 24; subtype E infection, n = 91). After testing HIV-positive specimens with the Vironostika-LS EIA, standardized optical densities (SODs) were calculated using median values to determine the window period, which is the time from seroconversion on a standard EIA to seroconversion on the Vironostika-LS EIA for a given SOD, for either subtype. For an SOD cutoff of 1.0, Vironostika-LS EIA results showed a mean window period of 239 days (95% confidence interval [95% CI], 208-287 days) for subtype B' and 356 days (95% CI, 318-402 days) for subtype E in Thailand. This outcome demonstrates that the Vironostika-LS EIA has significantly different performance characteristics in detecting recent seroconversion between different HIV-1 subtypes. Accurate identification of recent infection and estimation of incidence for HIV-1 strains other than North American subtype B, using the Vironostika-LS EIA, requires knowledge of specimen subtype and use of appropriate cutoffs and mean window periods.

AIDS Serodiagnosis↗

PubMed2003

HIV type 1 incidence estimates by detection of recent infection from a cross-sectional sampling of injection drug users in Bangkok: use of the IgG capture BED enzyme immunoassay.

Development of serologic tests to detect recent HIV-1 infection has generated worldwide interest in applying this approach to estimate incidence. We previously devised an IgG-capture BED-EIA (or BED-CEIA) that detects increasing levels of anti-HIV IgG following seroconversion to identify recent infection and to estimate incidence among persons infected with diverse HIV-1 subtypes worldwide. Injection drug users (IDUs; n = 1969) were screened in 1996 for participation in a prospective cohort study. Serum specimens from 594 IDUs were HIV-1 seropositive (30.2%) and were tested with the BED-CEIA. The proportion of recent infections and estimated incidence by different epidemiological risk factors were compared with incidence data measured from the prospective cohort. Of 594 HIV-1-seropositive specimens, 113 (19%) were identified as recent infections. Overall, the estimated annual incidence among persons screened was 17.3%/year (95% CI, 12.8-24.2%/year) compared with 9.0%/year (95% CI, 6.7-11.9%/year) measured from the prospective cohort during the same time period. Estimated incidence was higher among younger aged and unemployed IDUs as well as among those who injected more frequently, confirming previously reported risk factors from this prospective cohort. As persons screened from a cross-sectional sampling probably have higher risk for HIV than selected uninfected individuals who choose to participate and receive risk reduction counseling in a longitudinal cohort study, use of this or other serologic testing strategies to identify populations with high incidence (such as for HIV vaccine trials) may overestimate incidence measured from prospective cohorts.

Acquired Immunodeficiency Syndrome↗

PubMed2003

A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities.

Participation in everyday activities is considered to be a vital part of children's development, which is related to their quality of life and future life outcomes. Research studies indicate that children with disabilities are at risk for lower participation in ordinary activities at home and in the community. This article presents a conceptual model of 11 environmental, family, and child factors that are thought to influence children's participation in recreation and leisure activities. The article outlines the existing evidence for the influence of these factors on one another and on children's participation. The review encompasses four bodies of literature: the participation of children or adults with disabilities, the risk and resilience of children facing adversity, the determinants of leisure and recreation activities, and the factors influencing physical activity and exercise. The proposed model is expected to be a useful tool for guiding future research studies and for developing policies and programs for children with disabilities and their families.

Child↗

PubMed2002

Higher viral loads and other risk factors associated with HIV-1 seroconversion during a period of high incidence among injection drug users in Bangkok.

We analyzed data from a prospective cohort study of injection drug users (IDUs) attending methadone treatment clinics in Bangkok, Thailand, during 1995-1998 to characterize factors associated with a period of high incidence (PHI) from July 1996 through January 1997 compared with periods of lower incidence. Sociobehavioral characteristics were similar for all participants during and outside the PHI except for the following: there was more reported drug injection while IDUs were incarcerated during the PHI (odds ratio, 1.67; p =.02) and significantly higher proportions of persons reported heroin injection (91% vs. 75%, respectively; p =.02) and higher frequencies of daily injection and sharing of injection equipment (40% vs. 25%, respectively; p =.05) during the PHI than outside the PHI. Through most of the first year after seroconversion, plasma HIV-1 loads were significantly higher in persons who seroconverted during the PHI than in those who seroconverted outside the PHI. Higher viral loads may potentially contribute to faster disease progression and increased infectiousness or transmissibility to subsequent contacts. Our findings suggest that prevention efforts to reduce the effective size and turnover within IDU sharing networks may have a significant impact on the epidemic by disrupting the rapid transmission of HIV-1 from recently infected, highly infectious individuals.

Adult↗

PubMed2002

Genetic analysis of incident HIV-1 strains among injection drug users in Bangkok: evidence for multiple transmission clusters during a period of high incidence.

During 1995-1996, 1,209 HIV-1-negative injection drug users (IDUs) attending methadone treatment clinics operated by the Bangkok Metropolitan Administration in Bangkok, Thailand, were enrolled in a prospective cohort study. Through 1998, 133 of these IDUs had seroconverted to HIV-1; 130 of these seroconverters were included in this study. HIV-1 CRF01_AE and subtype B strains accounted for 79% and 21% of the incident infections, respectively. To examine phylogenetic relationships among these incident HIV-1 strains, we used several phylogenetic inference methodologies to analyze the env (C2-V4) sequences in blood samples collected soon after seroconversion. These analyses consistently revealed eight phylogenetic clusters comprising 21 incident strains (bootstrap method, >80%; six CRF01_AE and two subtype B clusters). Two factors were found to be associated with the eight clusters. The first factor was temporal: seven of the eight clusters comprised 17 sequences from IDUs whose estimated dates of seroconversion were within a period of high incidence from July 1996 through January 1997. The second factor was a possible geographic association: four clusters were observed among IDUs who had attended the same methadone treatment clinics. These phylogenetic clusters likely represent subgroups within larger HIV transmission networks among IDUs in Bangkok. Despite prevention efforts, the incidence of HIV-1 infection among the Bangkok IDU population continues to be high. A better understanding of transmission networks and factors associated with such networks can help guide prevention efforts.

Adult↗