Kids’ Life and Times: using an Internet survey to measure children’s health-related quality of life

Objective
To examine the psychometric properties of an internet version of a children and young person's quality of life measure originally designed as a paper questionnaire.

Methods
Participants were 3,440 10 and 11 year old children in Northern Ireland who completed the KIDSCREEN-27 online as part of a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and the questions appeared on screen and were read aloud by actors.

Results
Exploratory principal component analysis of the online version of the questionnaire supported the existence of five components in line with the paper version. The items loaded on the components that would be expected based on previous findings with five domains - physical well-being,psychological well-being, autonomy and parents, social support and peers and school environment.Internal consistency reliability of the five domains was measured using Cronbach's alpha and the results suggested that the scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version.

Conclusions
These results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within an online survey are comparable to those reported in the literature for the paper version.

Contextualism as an important facet of individualism-collectivism: personhood beliefs across 37 national groups

Beliefs about personhood are understood to be a defining feature of individualism-collectivism (I-C), but they have been insufficiently explored, given the emphasis of research on values and self-construals. We propose the construct of contextualism, referring to beliefs about the importance of context in understanding people, as a facet of cultural collectivism. A brief measure was developed and refined across 19 nations (Study 1: N = 5,241), showing good psychometric properties for cross-cultural use and correlating well at the nation level with other supposed facets and indicators of I-C. In Study 2 (N = 7,623), nation-level contextualism predicted ingroup favoritism, corruption and differential trust of ingroup and outgroup members, while controlling for other facets of I-C, across 34 nations. We conclude that contextualism is an important part of cultural collectivism. This highlights the importance of beliefs alongside values and self-representations, and contributes to a wider understanding of cultural processes.

Cystic fibrosis research in allied health and nursing professions

This report is the result of the "Allied Health and Nursing Professions Working Group" meeting which took place in Verona, Italy, November 2009, which was organised by the European Cystic Fibrosis Society, and involved 32 experts. The meeting was designed to provide a "roadmap" of high priority research questions that can be addressed by Allied Health Professionals (AHP) and nursing. The other goal was to identify research skills that would be beneficial to AHP and nursing researchers and would ultimately improve the research capacity and capability of these professions. The following tasks were accomplished: 1) a Delphi survey was used to identify high priority research areas and themes, 2) common research designs used in AHP and nursing research were evaluated in terms of their strengths and weaknesses, 3) methods for assessing the clinimetric and psychometric properties, as well as feasibility, of relevant outcome measures were reviewed, and 4) a common skill set for AHPs and nurses undertaking clinical research was agreed on and will guide the planning of future research opportunities. This report has identified important areas and themes for future research which include: adherence; physical activity/exercise; nutritional interventions; interventions for the newborn with CF and evaluation of outcome measures for use in AHP and nursing research. It has highlighted the significant challenges AHPs and nurses experience in conducting clinical research, and proposes strategies to overcome these challenges. It is hoped that this report will encourage research initiatives that assess the efficacy/effectiveness of AHP and nursing interventions in order to improve the evidence base. This should increase the quality of research conducted by these professions, justify services they currently provide, and expand their skills in new areas, with the ultimate goal of improving care for patients with CF.

Associations between repetitive questioning, resistance to change, temper outbursts and anxiety in Prader-Willi and Fragile-X syndromes

The behavioural phenotypes of Prader-Willi (PWS) and Fragile-X (FraX) syndromes both comprise repetitive behaviours with differences between the profiles. In this study we investigated the context and antecedents to the repetitive behaviours and the association with other behavioural phenotypic characteristics in order to generate testable hypotheses regarding the cause of the behaviours.

The parents or carers of 46 children with PWS (mean age 14.1 years; 20 girls), and 33 boys with FraX (mean age 13.11 years) were interviewed about their children's repetitive behaviour in a semi-structured format.

Children showed negative emotional behaviour (PWS: 87.0%; FraX: 79.4%) and repetitive questions (PWS: 78.3%; FraX: 73.5%) following changes in routine or expectations. Significantly more temper outbursts were reported to follow changes in children with PWS (89.1%) compared with boys with FraX (41.2%) (chi(2) = 20.93; P <0.001). Anxiety that was frequently associated with repetitive and self-injurious behaviours in boys with FraX, followed changes in significantly more boys with FraX (76.5%) compared with children with PWS (6.5%) (chi(2) = 43.19, P <0.001).

On the basis of these reports and existing literature, we hypothesise that decreases in predictability are aversive to children with PWS and FraX. We also hypothesise that these children have a propensity to show a syndrome-related pattern of behaviour (temper outbursts in PWS and displays of anxiety in FraX) when an event in the environment has this aversive property. We hypothesise that questions may be reinforcing to children in their own right by increasing the predictability of the environment. We outline how a specific cognitive deficit in the endophenotypes associated with both PWS and FraX could be investigated as a potential explanation for the hypothesised aversive properties of decreased predictability.

Assessing the needs of informal caregivers to cancer survivors: a review of the instruments

Objective: Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.

Method: A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised.

Results: Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test–retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness.

Conclusion: All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test–retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score.

A methodological review of the Short Form Health Survey 36 (SF-36) and its derivatives among breast cancer survivors

Purpose: A systematic review of the validity, reliability and sensitivity of the Short Form (SF) health survey measures among breast cancer survivors.
Methods: We searched a number of databases for peer-reviewed papers. The methodological quality of the papers was assessed using the COnsenus-based Standards for the selection of health Measurement INstruments (COSMIN).
Results: The review identified seven papers that assessed the psychometric properties of the SF-36 (n = 5), partial SF-36 (n = 1) and SF-12 (n = 1) among breast cancer survivors. Internal consistency scores for the SF measures ranged from acceptable to good across a range of language and ethnic sub-groups. The SF-36 demonstrated good convergent validity with respective subscales of the Functional Assessment of Cancer Treatment—General scale and two lymphedema-specific measures. Divergent validity between the SF-36 and Lymph-ICF was modest. The SF-36 demonstrated good factor structure in the total breast cancer survivor study samples. However, the factor structure appeared to differ between specific language and ethnic sub-groups. The SF-36 discriminated between survivors who reported or did not report symptoms on the Breast Cancer Prevention Trial Symptom Checklist and SF-36 physical sub-scales, but not mental sub-scales, discriminated between survivors with or without lymphedema. Methodological quality scores varied between and within papers.
Conclusion: Short Form measures appear to provide a reliable and valid indication of general health status among breast cancer survivors though the limited data suggests that particular caution is required when interpreting scores provided by non-English language groups. Further research is required to test the sensitivity or responsiveness of the measure.

The Development and Testing of a New Version of the Cognitive Reflection Test Applying Item Response Theory (IRT)

The cognitive reflection test (CRT) is a short measure of a person's ability to resist intuitive response tendencies and to produce a normatively correct response, which is based on effortful reasoning. Although the CRT is a very popular measure, its psychometric properties have not been extensively investigated. A major limitation of the CRT is the difficulty of the items, which can lead to floor effects in populations other than highly educated adults. The present study aimed at investigating the psychometric properties of the CRT applying item response theory analyses (a two-parameter logistic model) and at developing a new version of the scale (the CRT-long), which is appropriate for participants with both lower and higher levels of cognitive reflection. The results demonstrated the good psychometric properties of the original, as well as the new scale. The validity of the new scale was also assessed by measuring correlations with various indicators of intelligence, numeracy, reasoning and decision-making skills, and thinking dispositions. Moreover, we present evidence for the suitability of the new scale to be used with developmental samples. Finally, by comparing the performance of adolescents and young adults on the CRT and CRT-long, we report the first investigation into the development of cognitive reflection.

Domestic Cooking and Food Skills: A Review

Domestic cooking skills (CS) and food skills (FS) encompass multiple components, yet there is a lack of consensus on their constituent parts, inter-relatedness or measurement, leading to limited empirical support for their role in influencing dietary quality. This review assessed the measurement of CS and FS in adults (>16 years); critically examining study designs, psychometric properties of measures, theoretical basis and associations of CS/FS with diet. Electronic databases (PsychInfo), published reports and systematic reviews on cooking and home food preparation interventions (Rees et al. 2012 ; Reicks et al. 2014 ) provided 834 articles of which 26 met the inclusion criteria. Multiple CS/FS measures were identified across three study designs: qualitative; cross-sectional; and dietary interventions; conducted from 1998-2013. Most measures were not theory-based, limited psychometric data was available, with little consistency of items or scales used for CS/FS measurements. Some positive associations between CS/FS and FV intake were reported; though lasting dietary changes were uncommon. The role of psycho-social (e.g., gender, attitudes) and external factors (e.g. food availability) on CS/FS is discussed. A conceptual framework of CS/FS components is presented for future measurement facilitation, which highlights the role for CS/FS on food-related behaviour and dietary quality. This will aid future dietary intervention design.