Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

<p>Abstract</p> <p>Background</p> <p>Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.</p> <p>Methods</p> <p>Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.</p> <p>Results</p> <p>The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.</p> <p>Conclusions</p> <p>The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.</p

Psychometric properties of implementation measures for public health and community settings and mapping of constructs against the Consolidated Framework for Implementation Research: a systematic review

Background: Recent reviews have synthesised the psychometric properties of measures developed to examine implementation science constructs in healthcare and mental health settings. However, no reviews have focussed primarily on the properties of measures developed to assess innovations in public health and community settings. This review identified quantitative measures developed in public health and community settings, examined their psychometric properties, and described how the domains of each measure align with the five domains and 37 constructs of the Consolidated Framework for Implementation Research (CFIR). Methods: MEDLINE, PsycINFO, EMBASE, and CINAHL were searched to identify publications describing the development of measures to assess implementation science constructs in public health and community settings. The psychometric properties of each measure were assessed against recommended criteria for validity (face/content, construct, criterion), reliability (internal consistency, test-retest), responsiveness, acceptability, feasibility, and revalidation and cross-cultural adaptation. Relevant domains were mapped against implementation constructs defined by the CFIR. Results: Fifty-one measures met the inclusion criteria. The majority of these were developed in schools, universities, or colleges and other workplaces or organisations. Overall, most measures did not adequately assess or report psychometric properties. Forty-six percent of measures using exploratory factor analysis reported >50 % of variance was explained by the final model; none of the measures assessed using confirmatory factor analysis reported root mean square error of approximation (<0.06) or comparative fit index (>0.95). Fifty percent of measures reported Cronbach’s alpha of <0.70 for at least one domain; 6 % adequately assessed test-retest reliability; 16 % of measures adequately assessed criterion validity (i.e. known-groups); 2 % adequately assessed convergent validity (r > 0.40). Twenty-five percent of measures reported revalidation or cross-cultural validation. The CFIR constructs most frequently assessed by the included measures were relative advantage, available resources, knowledge and beliefs, complexity, implementation climate, and other personal resources (assessed by more than ten measures). Five CFIR constructs were not addressed by any measure. Conclusions: This review highlights gaps in the range of implementation constructs that are assessed by existing measures developed for use in public health and community settings. Moreover, measures with robust psychometric properties are lacking. Without rigorous tools, the factors associated with the successful implementation of innovations in these settings will remain unknown

The price of healthy and unhealthy foods in Australian primary school canteens

Objective: To describe the price of Australian school canteen foods according to their nutritional value.Methods: Primary school canteen menus were collected as part of a policy compliance randomised trial. For each menu item, dietitians classified its nutritional value; &lsquo;green&rsquo; (&lsquo;good sources of nutrients&rsquo;), &lsquo;amber&rsquo; (&lsquo;some nutritional value&rsquo;), &lsquo;red&rsquo; (&lsquo;lack adequate nutritional value&rsquo;) and assigned a food category (e.g. &lsquo;Drinks&rsquo;, &lsquo;Snacks&rsquo;). Pricing information was extracted. Within each food category, ANOVAs assessed differences between the mean price of &lsquo;green&rsquo;, &lsquo;amber&rsquo; and &lsquo;red&rsquo; items, and post-hoc tests were conducted.Results: Seventy of the 124 invited schools participated. There were significant differences in the mean price of &lsquo;green&rsquo;, &lsquo;amber&rsquo; and &lsquo;red foods&rsquo; across categories, with &lsquo;green&rsquo; items more expensive than &lsquo;amber&rsquo; items in main-meal categories (&lsquo;Sandwiches&rsquo; +0.43, ‘Hot Foods’ +0.71), and the reverse true for non-meal categories (&lsquo;Drinks&rsquo; &minus;0.13, ‘Snacks’ −0.18, &lsquo;Frozen Snacks&rsquo; &minus;$0.25^).Conclusion: Current pricing may not encourage the purchasing of healthy main-meal items by and for students. Further investigation of pricing strategies that enhance the public health benefit of existing school canteen policies and practices are warranted.Implications for Public Health: Providing support to canteen managers regarding healthy canteen policies may have a positive impact on public health nutrition

Randomised controlled trial of a web-based programme in sustaining best practice alcohol management practices at community sports clubs: a study protocol

INTRODUCTION: Community-based interventions have been found to effectively increase the implementation of alcohol management practices and reduce excessive alcohol use and alcohol-related harm at sports clubs. However, once implementation support ceases there may be a reduction in such intervention effects. Thus, ongoing contribution to improving the health of the community is diminished; sustaining practice implementation is a key determinant to address this. One possible solution to the strategic and logistical challenges of sustainability involves the use of the web. The primary aim of this study is to assess the effectiveness of a web-based programme in sustaining the implementation of alcohol management practices by community football clubs. The secondary aim is to assess the effectiveness of the programme in preventing excessive alcohol consumption and alcohol-related harm among members of community football clubs. METHODS AND ANALYSIS: The study will employ a repeat randomised controlled trial design and be conducted in regional and metropolitan areas within two states of Australia. Community level football clubs who are currently accredited with an existing alcohol management programme (\u27Good Sports\u27) and implementing at least 10 of the 13 core alcohol management practices (eg, not serving alcohol to &lt;18-year-olds) required by the programme will be recruited and randomised to either a web-based sustainability programme or a \u27minimal contact\u27 programme. The primary outcome measures are the proportion of football clubs implementing &ge;10 of the 13 required alcohol management practices and the mean number of those practices being implemented at 3-year follow-up. Secondary outcomes include: the proportion of club members who report risky drinking at their club, the Alcohol Use Disorder Identification Test (AUDIT) score and mean AUDIT score of club members. Outcome data will be collected via observation at the club during a 1-day visit to a home game, conducted by trained research assistants at baseline and follow-up. ETHICS AND DISSEMINATION: The study was approved by The University of Newcastle Human Research Ethics Committee (reference: H-2013-0429). Study findings will be disseminated widely through peer-reviewed publications and conference presentations

Development and psychometric evaluation of a measure of perceived need for adolescents and young adults with cancer

Research Doctorate - Doctor of Philosophy (PhD)An overview of the unique challenges that adolescent and young adult (AYA) cancer survivors may face due to their cancer diagnosis occurring at a critical phase of physical, psychological and social development is presented in Chapter 1. A review of the literature revealed that no psychometrically rigorous measures of unmet need for AYA cancer survivors currently exist, discussed in Chapter 2. The initial steps (face and content validity) in the development of a measure specifically designed to capture the needs of this population are described in Chapter 3. The measure was pilot tested with 32 AYAs recruited through a state-based cancer registry, discussed in Chapter 4. The construct validity and internal consistency of the measure were established with a sample of 139 AYAs recruited through seven treatment centres, presented in Chapter 5. Test-retest reliability was examined with a sub-sample of 34 AYAs. The final measure consists of 70 items and six factors. All factors achieved Cronbach’s alpha values >0.80. Item-to-item test-retest reliability was also high, with most items reaching weighted kappa values >0.60. The prevalence of high levels of unmet need related to the availability of good food and leisure spaces at the treatment centre, body image, fertility, peer interaction, physical functioning, and tailored information were experienced by a large proportion of AYAs, described in Chapter 6. Participants who were female, diagnosed with haematological cancer, experienced a recurrence, received more than two types of treatment, or who were less than two years post-diagnosis had significantly greater odds of experiencing high levels of unmet need for a number of issues. Recommendations for further psychometric evaluation of the measure (including longitudinal studies to establish responsiveness and predictive validity) with a larger sample are discussed in Chapter 7

Recruitment of representative samples for low incidence cancer populations: do registries deliver?

Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire. Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered