Differences In Summary Scores Research Articles

Increasing interprofessional collaboration in community-based palliative care: a pilot study of the CAPACITI education program for primary care providers

ABSTRACT Interprofessional collaboration in palliative care is essential to ensuring high-quality care for seriously ill patients. Education interventions to increase competency in palliative care should incorporate team-building skills to encourage an interprofessional approach. We developed and piloted a virtual educational program named CAPACITI for interprofessional teams to promote a community palliative approach to care. Primary care teams from across Ontario, Canada, participated in CAPACITI which consisted of 10 facilitated sessions that emphasized how to operationalize a palliative care approach as a team. Pre- and post-study questionnaires were completed by each team, including the AITCS-II, a validated instrument that measures interprofessional collaboration. We analyzed individual paired differences in summary scores and in each of three subdomains of the AITCS-II questionnaire: partnership, cooperation, and coordination. Seventeen teams completed the AITCS-II post survey, representing 133 participants. Teams varied demographically and ranged from 5 to 16 members. After CAPACITI, the overall mean AITCS-II summary score among teams increased to 96.0 (SD = 10.0) for a significant paired mean difference increase of 9.4 (p = .03). There were also significant increases in the partnership (p = .01) and in the cooperation subdomains (p = .04). CAPACITI demonstrated the potential for improving collaboration among primary care teams, which can lead to improved provider and patient outcomes in palliative care.

Summary Measure of Health-Related Quality of Life and Its Related Factors Based on the Chinese Version of the Core Healthy Days Measures: Cross-Sectional Study.

The core Healthy Days measures were used to track the population-level health status in the China Chronic Disease and Risk Factor Surveillance; however, they were not easily combined to create a summary of the overall health-related quality of life (HRQOL), limiting this indicator's use. This study aims to develop a summary score based on the Chinese version of the core Healthy Days measures (HRQOL-5) and apply it to estimate HRQOL and its determinants in a Chinese population. From November 2018 to May 2019, a multistage stratified cluster survey was conducted to examine population health status and behavioral risk factors among the resident population older than 15 years in Weifang City, Shandong Province, China. Both exploratory factor analyses and confirmatory factor analyses were performed to reveal the underlying latent construct of HRQOL-5 and then to quantify the overall HRQOL by calculating its summary score. Tobit regression models were finally carried out to identify the influencing factors of the summary score. A total of 26,269 participants (male: n=13,571, 51.7%; mean age 55.9, SD 14.9 years) were included in this study. A total of 71% (n=18,663) of respondents reported that they had excellent or very good general health. One summary factor was extracted to capture overall HRQOL using exploratory factor analysis. The confirmatory factor analysis further confirmed this one-factor model (Tucker-Lewis index, comparative fit index, and goodness-of-fit index >0.90; root mean square error of approximation 0.02). Multivariate Tobit regression analysis showed that age (β=-0.06), educational attainments (primary school: β=0.72; junior middle school: β=1.46; senior middle school or more: β=2.58), average income (≥¥30,000 [US $4200]: β=0.69), physical activity (β=0.75), alcohol use (β=0.46), self-reported disease (β=-6.36), and self-reported injury (β=-5.00) were the major influencing factors on the summary score of the HRQOL-5. This study constructs a summary score from the HRQOL-5, providing a comprehensive representation of population-level HRQOL. Differences in summary scores of different subpopulations may help set priorities for health planning in China to improve population HRQOL.

Development of a Nutrition Environment Assessment Tool for Latino Ethnic Stores

The objectives were to: (1) adapt the Nutrition Environment Measures Survey for Stores (NEMS-S) to better culturally fit small Latino grocery stores (tiendas) in Iowa; (2) assess the newly adapted Latino NEMS-S for inter-rater and test-retest reliability; and (3) compare Latino and original NEMS-S summary scores. This pilot instrument, containing culturally appropriate foods from the original NEMS-S and 2015 US Dietary Guidelines for Americans, underwent two rounds of formative evaluation. The new instrument and scoring protocol were applied to a random sample of 42 of 81 possible tiendas in Iowa. Cohen’s kappa was used to assess inter-rater and test-retest reliability for availability and quality of indicator food items (total scores and food category sub scores). There were no differences in summary scores for inter-rater or test-retest reliability using paired t-tests. Inter-rater agreement was high (range 0.82–1.00; p < 0.001). Tiendas averaged 42.0 ± 7.5 of 57 possible points on the Latino NEMS-S, but only 12.0 ± 4.6 of 54 points on the original NEMS-S (p < 0.001). The Latino NEMS-S is a reliable tool for assessing the food environment within Iowa tiendas. Culturally specific instruments can describe diverse food environments more accurately and guide public health nutrition interventions within communities.

Effect of general practitioner-led versus surgeon-led colon cancer survivorship care, with or without eHealth support, on quality of life (I CARE): an interim analysis of 1-year results of a randomised, controlled trial.

Colon cancer is associated with an increased risk of physical and psychosocial morbidity, even after treatment. General practitioner (GP) care could be beneficial to help to reduce this morbidity. We aimed to assess quality of life (QOL) in patients who received GP-led survivorship care after treatment for colon cancer compared with those who received surgeon-led care. Furthermore, the effect of an eHealth app (Oncokompas) on QOL was assessed in both patient groups. We did a pragmatic two-by-two factorial, open-label, randomised, controlled trial at eight hospitals in the Netherlands. Eligible patients were receiving primary surgical treatment for stage I-III colon cancer or rectosigmoid carcinoma and qualified for routine follow-up according to Dutch national guidelines. Patients were randomly assigned (1:1:1:1)-via computer-generated variable block randomisation stratified by age and tumour stage-to survivorship care overseen by a surgeon, survivorship care overseen by a surgeon with access to Oncokompas, survivorship care overseen by a GP, or survivorship care overseen by a GP with access to Oncokompas. Blinding of the trial was not possible. The primary endpoint of the trial was QOL at 5 years, as measured by the change from baseline in the European Organistion for Research and Treatment of Cancer QLQ-C30 summary score. Here, we report an unplanned interim analysis of QOL at the 12-month follow-up. Grouped comparisons were done (ie, both GP-led care groups were compared with both surgeon-led groups, and both Oncokompas groups were compared with both no Oncokompas groups). Differences in change of QOL between trial groups were estimated with linear mixed-effects models. A change of ten units was considered clinically meaningful. Analysis was by intention to treat. This trial is registered with the Netherlands Trial Register, NTR4860. Between March 26, 2015, and Nov 21, 2018, 353 patients were enrolled and randomly assigned. There were 50 early withdrawals (27 patient decisions and 23 GP withdrawals). Of the remaining 303 participants, 79 were assigned to surgeon-led care, 83 to surgeon-led care with Oncokompas, 73 to GP-led care, and 68 to GP-led care with Oncokompas. Median follow-up was 12·2 months (IQR 12·0-13·0) in all groups. At baseline, QOL was high in all trial groups. At 12 months, there was no clinically meaningful difference in change from baseline in QOL between the GP-led care groups and the surgeon-led care groups (difference in summary score -2·3 [95% CI -5·0 to 0·4]) or between the Oncokompas and no Oncokompas groups (-0·1 [-2·8 to 2·6]). In terms of QOL, GP-led survivorship care can be considered as an alternative to surgeon-led care within the first year after colon cancer treatment. Other outcomes, including patient and physician preferences, will be important for decisions about the type of survivorship care. Dutch Cancer Society (KWF).

Hydroxycarbamide Plus Aspirin Vs Aspirin Alone in Intermediate Risk Essential Thrombocythemia: Results of the PT-1 International, Prospective, Randomized Clinical Trial

IntroductionProspective randomized trials have shown that patients with “high-risk” essential thrombocythemia (aged >60, prior thrombotic history and/or cardiovascular risk factors) have a lower thrombotic risk if treated with hydroxycarbamide compared to no cytoreduction, and that hydroxycarbamide reduces risks of major vascular events, arterial thrombosis, serious hemorrhage and post-ET myelofibrosis (PET-MF) compared to anagrelide. However there are no prospective data evaluating the effects of cytoreduction in ET patients lacking high-risk factors. We undertook a prospective, open-label, randomized trial comparing hydroxycarbamide plus aspirin with aspirin alone in patients with “intermediate-risk” ET.MethodsPatients were recruited from 198 hospitals in 5 countries. Intermediate-risk patients were aged 40 to ≤ 59 years and lacked the following high-risk criteria: current or previous platelet count ≥1000x109/l (≥1500x109/l from 06/05/2004); previous ischemia, thrombosis or embolism; hemorrhage due to ET; hypertension or diabetes requiring therapy. 382 patients were randomized between 21/07/1997 and 31/07/2012 in a 1:1 ratio to aspirin alone or aspirin plus hydroxycarbamide; 24 were subsequently identified to be ineligible and excluded (Fig 1A). The composite primary endpoint was time from randomization to arterial or venous thrombosis, serious hemorrhage or death from vascular causes. Secondary endpoints were time to first arterial or venous thrombosis or to first serious hemorrhage; time to death; incidence of transformation to PET-MF, acute myeloid leukemia (AML), myelodysplasia (MDS) or polycythemia vera (PV); and patient-reported quality of life. The required duration of follow-up was calculated as the maximum period of time required for either a significantly different treatment effect or a point estimate for the number needed to treat to prevent one endpoint per year of >100, with a lower limit of the 95% confidence interval (CI) >50. Intention-to-treat analyses were performed.ResultsMedian duration of follow-up was 73 months (range, 0 to 187) with total follow-up of 2373 patient-years. 47% of the aspirin alone group started cytoreduction during follow-up whilst 21% of the aspirin plus hydroxycarbamide arm stopped hydroxycarbamide and/or started another cytoreductive agent (Fig 1A). Median time without treatment change was 36 months in the aspirin alone arm and 55 months in the aspirin plus hydroxycarbamide arm (p<0.001). Platelet counts were significantly different between the arms early on and started to overlap 5-6 years after entry (Fig 1B).The composite primary endpoint of time from randomization to arterial or venous thrombosis, serious hemorrhage or death from vascular causes was not significantly different between the arms (hazard ratio 0.98, 95% CI 0.43-2.27, p=1.0, Fig 1C). The incidence of significant vascular events for the whole study was 0.93 per 100 patient-years (95% CI 0.61-1.41). There was no significant difference in overall survival between the arms (p=0.5, Fig 1D), nor in the composite endpoint of rate of transformation to PET-MF, AML or MDS (p=0.7, Fig 1E). The rate of PV transformation was significantly higher in the aspirin alone arm (p=0.01, Fig 1E), most likely reflecting the non-specific effect of hydroxycarbamide in constraining erythropoiesis. A pre-specified analysis for any major disease-related complication - arterial thrombosis, venous thromboembolism, major hemorrhage, transformation to AML, MDS, PET-MF or death from any of these causes - showed no difference between the arms (p=0.6). There were no significant differences in the frequency of adverse events including non-hematological cancers. Quality of life data were recorded annually for five years using the EORTC QLQ-C30 questionnaire (v2), with no significant differences in summary scores in any yearConclusionIn ET patients aged 40-59 who lack high-risk factors pre-emptive addition of hydroxycarbamide to aspirin did not reduce the risk of vascular events or myelofibrotic or leukemic transformation. These results indicate that intermediate-risk ET patients should be treated with aspirin alone until another clinical indication for cytoreduction arises. Moreover patients receiving hydroxycarbamide showed no increase in leukemic transformation or other malignancies, supporting the concept that hydroxycarbamide is a safe therapy for ET. [Display omitted] DisclosuresMcMullin:Italfarmaco S.p.A.: Consultancy; Shire, Novartis: Honoraria, Speakers Bureau. Kiladjian:Novartis: Membership on an entity's Board of Directors or advisory committees, Research Funding; Celgene: Membership on an entity's Board of Directors or advisory committees; AOP Orphan: Membership on an entity's Board of Directors or advisory committees, Research Funding. Harrison:Shire: Speakers Bureau; Gilead: Consultancy, Speakers Bureau; Celgene: Consultancy; Novartis: Honoraria, Research Funding, Speakers Bureau; CTI: Speakers Bureau.

Mobile App for Symptom Management and Associated Quality of Life During Systemic Treatment in Early Stage Breast Cancer: Nonrandomized Controlled Prospective Cohort Study.

BackgroundProviding patients with cancer who are undergoing systemic therapy with useful information about symptom management is essential to prevent unnecessary deterioration of quality of life.ObjectiveThe aim was to evaluate whether use of an app for symptom management was associated with any change in patient quality of life or use of health resources.MethodsOutpatients with early stage breast cancer receiving systemic therapy were recruited at the Institute of Oncology in Ljubljana, Slovenia. Patients who received systemic therapy between December 2017 and March 2018 (control group) and between April 2018 and September 2018 (intervention group) were eligible. All patients received standard care, but only those in the intervention group were asked to use mPRO Mamma, an Android-based smartphone app, in addition. The app supported daily tracking of 50 symptoms, allowed users to grade their symptom severity (as mild, moderate, or severe), and also provided in-depth descriptions and recommendations based on reported symptom level. Patient-reported outcomes in both groups were assessed through the European Organisation for Research and Treatment of Cancer (EORTC) core (C-30) and breast cancer (BR-23) questionnaires, as well as a questionnaire about health resources use. The primary outcomes were the difference in the global quality of life between groups and the difference in summary score of the EORTC C-30 questionnaire between groups after 3 time periods (the first week of treatment, the first treatment cycle, and the entire treatment). The secondary outcome was the use of health resources (doctor visits and hospitalizations) in each time period. Other scales were used for exploratory analysis.ResultsThe mean difference between the intervention group (n=46) and the control group (n=45) in global quality of life (adjusted for baseline and type of surgery) after the first week was 10.1 (95% CI 1.8 to 18.5, P=.02). The intervention group summary scores were significantly higher than those of the control group after the first week (adjusted mean difference: 8.9, 95% CI 3.1 to 14.7, P=.003) and at the end of treatment (adjusted mean difference: 10.6, 95% CI 3.9 to 17.3, P=.002). Use of health resources was not statistically significant between the groups in either the first week (P=.12) or the first treatment cycle (P=.13). Exploratory analysis findings demonstrated clinically important improvements (indicated by EORTC C-30 or BR-23 scale scores)—social, physical, role, and cognitive function were improved while pain, appetite loss, and systemic therapy side effects were reduced.ConclusionsUse of the app enabled patients undergoing systemic therapy for early stage breast cancer to better cope with symptoms which was demonstrated by a better global quality of life and summary score after the first week and by a better summary score at the end of treatment in the intervention group compared to those of the control group, but no change in the use of health resources was demonstrated.

Daily and weekly mood ratings using a remote capture method in high-risk offspring of bipolar parents: Compliance and symptom monitoring.

To determine the compliance and clinical utility of weekly and daily electronic mood symptom monitoring in adolescents and young adults at risk for mood disorder. Fifty emerging adult offspring of bipolar parents were recruited from the Flourish Canadian high-risk offspring cohort study along with 108 university student controls. Participants were assessed by KSADS/SADS-L semi-structured interviews and used a remote capture method to complete weekly and daily mood symptom ratings using validated scales for 90 consecutive days. Hazard models and generalized estimating equations were used to determine differences in summary scores and regularity of ratings. Seventy-eight and 77% of high-risk offspring and 97% and 93% of controls completed the first 30days of weekly and daily ratings, respectively. There were no differences in drop-out rates between groups over 90days (weekly P=0.2149; daily P=0.9792). There were no differences in mean summary scores or regularity of weekly anxiety, depressive or hypomanic symptom ratings between high-risk offspring and control groups. However, high-risk offspring compared to controls had daily ratings indicating lower positive affect, higher negative affect and lower self-esteem (P=0.0317). High-risk offspring with remitted mood disorder compared to those without had more irregularity in weekly anxiety and depressive symptom ratings and daily ratings of lower positive affect, higher negative affect, and higher shame and self-doubt (P=0.0365). Findings support that high-resolution electronic mood tracking may be a feasible and clinically useful approach in monitoring emerging psychopathology in young people at high-risk offspring of mood disorder onset or recurrence.

Development and Psychometric Evaluation of a New Measure for Children's Participation in Hand-Use Life Situations

ObjectiveTo describe the development of the Children's Assessment of Participation with Hands, a parent-report questionnaire that assesses children's participation in life situations requiring hand use specifically, and to investigate its construct validity (using Rasch analysis and known-group comparison) and reliability (test-retest reliability and internal consistency). DesignCross-sectional, validation, and test-retest studies. SettingSchools. ParticipantsParents/caregivers (N=202) reported on their children aged 2 to 12 years with (n=97) and without disabilities (n=105). InterventionsNot applicable. Main Outcome MeasureThe Children's Assessment of Participation with Hands was developed based on a content review of existing children's participation measures and literature, expert review, and pilot testing. The Children's Assessment of Participation with Hands included 37 items measuring participation diversity, frequency, independence, and desire for change in specific hand-use life situations across 4 domains of self-care, recreation, education, and domestic life and community. ResultsEvidence for construct validity of the Children's Assessment of Participation with Hands domains was established through Rasch analysis (after removing 2 misfitting items from the recreational domain and 1 item from the domestic life and community domain). Differences in summary scores of each domain between children with and without disabilities were also significant (P<.01). Test-retest reliability of the Children's Assessment of Participation with Hands was moderate to high (intraclass correlation coefficients, .69–.96), except for the desire for change dimension scale of the recreational domain (.40). Internal consistency was varied across the dimensions/domains. ConclusionsResults provide preliminary evidence for the construct validity and reliability of the Children's Assessment of Participation with Hands that could be used in clinical and research settings to gain a specific understanding of the impact of children's hand-use difficulties on their participation in life situations requiring hand use.

Psychometric properties of the French Female Sexual Function Index (FSFI)

Few validated questionnaires are available in French to assess sexual function. The aim of this study was thus to validate a French version of the Female Sexual Function Index (FSFI) in a sample of French women. In this prospective monocentric and cross-sectional study, an already existing French version of the FSFI, was back-translated and compared to the original version. It was then randomly distributed to 800 women attending Gynecology consultation at Nantes University Hospital in April 2012. Various statistical analyzes were used to test the psychometric properties of the French FSFI. 512 questionnaires were completed. Mean FSFI summary score was 25.2. Intraclass correlation coefficients were superior to 0.75 and Cronbach's coefficients superior to 0.8 similarly to the original version. Variance analysis revealed significant differences in summary score between premenopausal and postmenopausal women and according to the marital status. Convergent validity was excellent (100%) and discriminant validity was satisfactory (89.5%). The factorial structure corresponded to the original version with six retrieved dimensions. Our study demonstrated similar or adequate psychometric properties of the French version of the FSFI compared to the original English version.

Contemporary prevalence of pretreatment urinary, sexual, hormonal, and bowel dysfunction: Defining the population at risk for harms of prostate cancer treatment

The authors investigated the prevalence of pretreatment urinary, sexual, hormonal, and bowel dysfunction in a contemporary, population-based prostate cancer cohort. They also explored the associations between baseline function and age, comorbidity, and timing of baseline survey completion with respect to treatment. The Comparative Effectiveness Analysis of Surgery and Radiation (CEASAR) study is a population-based, prospective cohort study that enrolled 3691 men with incident prostate cancer during 2011 and 2012. Pretreatment function was ascertained using the Expanded Prostate Cancer Index-26 (EPIC-26). Data were stratified by age, comorbidity, and timing of baseline survey completion with respect to treatment. Unadjusted and multivariable linear regression analyses were performed to evaluate the relations between exposures and pretreatment function. After applying exclusion criteria, the study cohort comprised 3072 men. A strikingly high proportion of men reported inability to obtain erections satisfactory for intercourse (45%) and some degree of urinary incontinence (17%) at baseline. Sexual function was particularly age-sensitive, with patients aged ≤60 years reporting summary scores in excess of 30 points higher than patients aged ≥75 years (P < .001). Compared with the healthiest men, highly comorbid patients reported less favorable function in each domain, including urinary incontinence (summary score, 89.5 vs 74.1; P < .001) and sexual function (summary score, 70.8 vs 32.9; P < .001). Although statistically significant differences in summary scores were identified between patients who completed the baseline questionnaire before treatment (52%) versus after treatment (48%), the absolute differences were small (range, 1-3 points). Patients with newly diagnosed prostate cancer exhibit a wide distribution of pretreatment function. The current data may be used to redefine the population "at risk" for treatment-related harms.

Health-Related Quality of Life in Children with Hemifacial Microsomia

To compare health-related quality of life (HRQOL) among children with and without hemifacial microsomia (HFM) as assessed by parents and the children themselves during the elementary school years. One hundred thirty-six children with HFM (49 females, mean age = 6 years, 11.9 months, SD = 1.004) were compared with 568 matched controls (285 females, mean age = 6 years, 10.2 months, SD = 0.998) for parent and child responses on the PedsQL Version 4.0. After adjustment for sociodemographic factors, parent-reported summary scores were worse for affected children than control group children for physical (effect sizes [ES] = 0.26, p = .004), social (ES = 0.34, p = .001), and school (ES = 0.32, p = .001) functioning. There were no significant mean differences in summary scores based on children's self-reported functioning. Case-control mean differences in HRQOL were more apparent based on parent report, but not child self-report. Summary score findings suggest that case parents have concerns about their child's HRQOL, particularly with respect to their child's physical, social, and school functioning. Additionally, our findings highlight the potential differences between child and parent perspectives and the importance of collecting data from multiple reporters.

Community Participation, Supports, and Barriers of School-Age Children With and Without Disabilities

ObjectiveTo examine patterns of community participation and environmental factors that affect community participation for school-age children with and without disabilities. DesignCross-sectional, descriptive, and exploratory study. SettingParents from the United States and Canada completed the main outcome measure online in their homes or communities. ParticipantsParents (N=576) reported on their children aged 5 to 17 years with disabilities (n=282) and without disabilities (n=294). InterventionsNot applicable. Main Outcome MeasureParticipation and Environment Measure for Children and Youth. ResultsGroup differences in summary scores and many items were significant (P<.001). Children with disabilities participated less frequently, were less involved, and had less environmental support in the community than children without disabilities. Parents of children with disabilities desired more change in their child's participation than parents of children without disabilities. Effect sizes for summary scores were moderate to very large (n2p from .11–.40), with the largest group difference found in environment scores. Overall, the largest group differences in participation were in “unstructured physical activities” and “getting together with other children”—also the 2 areas where parents of children with disabilities most frequently desired change. The largest differences in environmental impact were in physical, social, and cognitive activity demands and availability/adequacy of programs and services. ConclusionsResults provide insights about where greater efforts are needed to support community participation of school-age children with disabilities. Further study with a more diverse sample in terms of race/ethnicity, family income/education levels, and geographic region is needed to determine the extent to which results may be generalized.

Development and Evaluation of High-Fidelity Simulation Case Scenarios for Pediatric Resident Education

Pediatric residency programs need objective methods of trainee assessment. Patient simulation can contribute to objective evaluation of acute care event management skills. We describe the development and validation of 4 simulation case scenarios for pediatric resident evaluation. We created 4 pediatric simulation cases: apnea, asthma, supraventricular tachycardia, and sepsis. Each case contains a scenario and an unweighted checklist. Case and checklist development began by reaching expert consensus about case content followed by 92 pilot simulation sessions used for content revision and rater training. After development, 54 first-and second-year pediatric residents participated in 108 simulation test cases to assess the validity of data from these tools for our population. We report outcomes for interrater reliability, discriminant validity, and the impact of potential confounding factors on validity estimates. Interrater reliability (kappa) ranged from 0.75 to 0.87. There were statistically and educationally significant differences in summary scores between first-and second-year residents for 3 of the 4 cases. Neither previous simulation exposure nor the order in which the cases were performed were found to be significant factors by multivariate analysis. Simulation can be used to reliably measure and discriminate resident competencies in acute care management. Rigorous measurement development work is difficult and time-consuming. Done correctly, measurement development yields tangible and lasting benefits for trainees, faculty, and residency programs. Development studies that use systematic procedures and large trainee samples at multiple sites are the best approach to creating measurement tools that yield valid data.

A developmental study of scores of the Boston Qualitative Scoring System

To elucidate developmental changes of the Summary Scores of the Boston Qualitative Scoring System (BQSS) for the Rey–Osterrieth Complex Figure (ROCF). One hundred healthy children aged 6–16 (average 9.7 ± 2.4; 60 boys, 40 girls). The ROCF was administered and graded based on the BQSS. The subjects were classified in four age-groups: 6- and 7-year-olds; 8- and 9-year-olds; 10- and 11-year-olds; and 12- and 16-year-olds. The differences in Summary Scores were examined among age-groups. All BQSS Summary Scores except Delayed Retention showed clear developmental changes. The Copy Presence Accuracy, the Immediate Presence Accuracy, the Delayed Presence Accuracy, and the Immediate Retention showed continuous development throughout childhood, though some differences were noted in the age ranges during which each score showed the most rapid development. The Organization score showed a somewhat peculiar pattern, with rapid development during the age ranges of 8–9 and 10–11 and with no distinctive development before and after these ranges. Five of the six BQSS Summary Scores showed clear developmental changes with a different developmental pattern in each score. Especially, the Organization score was unique and was supposed to reflect a different underlying process than the other Summary Scores, which might relate to the local and global processing style. BQSS is a promising tool for the evaluation of higher brain functions in childhood.

Late Life Function and Disability Instrument: I. Development and Evaluation of the Disability Component

Efforts to evaluate the effectiveness of clinical and community-based interventions designed to impact late-life disability have been hindered significantly by limitations in current instrumentation. More conceptually sound and responsive measures of disability are needed. Applying Nagi's disablement model, we wrote questionnaire items that assessed disability in terms of frequency and limitation in performance of 25 life tasks. We evaluated their validity and test-retest reliability with 150 ethnically and racially diverse adults aged 60 and older who had a range of functional limitations, using factor analysis and Rasch analytic techniques to examine and refine the instrument. Our analyses resulted in a 16-item disability component with two dimensions, one focused on frequency of performance and the other addressing limitation in performance of life tasks, with two disability domains within each dimension. The frequency dimension consisted of a personal and a social role domain, and the limitation dimension consisted of an instrumental and a management role domain. Expected differences in summary scores of known-functional limitation groups support the validity of this instrument. Test-retest intraclass correlations of the reproducibility of each overall dimension summary score were moderate to high (intraclass correlation coefficients .68-.82). The Late-Life Function and Disability Instrument has potential to assess meaningful concepts of disability across a wide variety of life tasks with relatively few items.

Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48.

We report the development of an instrument to assess health-related quality of life (HRQOL) in adolescents with epilepsy. A sample of 197 English-speaking adolescents (aged 11-17 years) with epilepsy completed a test questionnaire of 88 items. Also included were mastery and self-esteem scales to assess external validity. A parent simultaneously completed an 11-item questionnaire to evaluate the child's HRQOL. Both adolescent and parent questionnaires were repeated in 2-4 weeks. Demographic information and information pertaining to seizures were collected at baseline along with assessment of systemic and neurologic toxicity. The QOLIE-AD-48 contains 48 items in eight subscales: epilepsy impact (12 items), memory/concentration (10), attitudes toward epilepsy (four), physical functioning (five), stigma (six), social support (four), school behavior (four), health perceptions (three), and a total summary score, with higher scores indicating better HRQOL. Internal construct validity was demonstrated in a single-factor solution for the eight dimensions. All correlations were statistically significant at p < 0.05 level. Internal consistency reliability estimated by Cronbach's alpha coefficient was 0.74 for the summary score and ranged from a low of 0.52 (three-item Health Perceptions Scale) to 0.73-0.94 for the other individual scales. Good test-retest reliability was found for the overall measure (0.83). Summary score correlations with the two external validity scales, self-efficacy and self-esteem were 0.65 and 0.54, respectively. Statistically significant differences in summary scores indicating that HRQOL was increasingly better for adolescents as seizure severity decreases (no seizures = 77+/-13, low = 70+/-17, high = 63+/-17) were found among seizure-severity groups. These data describe the development of a robust instrument to evaluate HRQOL in adolescents with epilepsy. Empiric analyses provide strong evidence that the QOLIE-AD-48 is both a reliable and valid measure for adolescents with epilepsy.

Perception of the social support role of the extended family network by some Nigerians with schizophrenia and affective disorders

Enquiries into patients' perception of psychosocial support from families should help objectively to identify the strengths and needs of families with sick members, in order to enhance management. The aim of this study was to identify the categories of relatives in the extended family whom a sample of Nigerian psychiatric patients perceived as having provided material, social and emotional support, and the factors associated with these perceptions. 123 schizophrenics and 31 patients with major affective disorders attending out-patient clinics were interviewed. Using operational definitions of family member (i.e. tendency to confide in and expect support from a relative), it appears that the size of extended family network that was mostly relied upon for support was five, including parents, full siblings, uncles/aunts, first cousins and in-laws. There were no significant differences in summary scores of family size and social support between the two illness groups. Age and duration of illness were significantly negatively correlated with perception of supports. The size of family network with whom patients interacted was predicted by tendency to confide in members, and emotional support. The findings indicate that the presumed support of the extended family should not negate the need to strengthen the resources of the nuclear family, in order to provide a focus for attraction and deployment of materials needed for the effective care of patients.