Developing Aboriginal and Torres Strait Islander cultural indicators: an overview from Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing.

BACKGROUND: For Aboriginal and Torres Strait Islander peoples, culture is foundational to health and wellbeing. However, its inherent conceptual complexity and diversity across and within different Aboriginal and Torres Strait Islander cultural groups means that it has rarely been explored in depth by epidemiological research. As a result, there are very few measures which adequately represent the heterogeneity and importance of Aboriginal and Torres Strait Islander cultures for health and wellbeing. Tools grounded in the social determinants of health are mostly based on European academic opinion about what constitutes culture and wellbeing, and the views of Indigenous peoples are rarely included. Mayi Kuwayu, the National Study of Aboriginal and Torres Strait Islander Wellbeing, developed a new survey tool based on health and wellbeing as perceived by Aboriginal and Torres Strait Islander people. This paper describes several of the key processes used to identify cultural domains and develop questionnaire items for the survey tool, reflecting the importance of culture to Aboriginal and Torres Strait Islander peoples. METHODS: Focus groups were conducted at community organisations and conferences with Aboriginal and Torres Strait Islander people. These sessions were aimed at identifying key cultural domains to be addressed by the Mayi Kuwayu questionnaire and to field test drafts of the questionnaire, which were then modified according to focus group feedback and expert input. RESULTS: Extensive community consultations allowed us to identify key cultural domains, generate questionnaire items, and test initial content validity. The six overarching cultural domains identified during the development of the Mayi Kuwayu questionnaire were: Connection to Country; Beliefs and knowledge; Language; Family, kinship, and community; Cultural expression and continuity; and Self-determination and leadership. CONCLUSIONS: The processes used by Mayi Kuwayu have generated meaningful cultural items for use in Aboriginal and Torres Strait Islander health and wellbeing research. Further assessment of these processes, including a comparison with best practice guidelines and psychometric testing of the items and scales developed, will be conducted in a future program of work.

Preliminary instrument development to measure implementing a population health approach in sexual health.

OBJECTIVES: This study aims to describe the preliminary development and validation of an instrument to measure the extent that a population health approach was applied in sexual health by public health units in Ontario, Canada. DESIGN: Preliminary scale development and administration occurred in two phases that included item development and validity testing. MEASUREMENT AND SAMPLE: Two phases of development included: (1) using literature and expert input (n = 6) to develop items; and (2) validation of items by content experts (n = 5) and pre-testing (n = 3). RESULTS: The validated scale consisted of 69 items across the eight key elements of a population health approach. 15 out of 35 health units completed the survey, representing 43% of health units. Instrument administration revealed that Focus on the Health of Populations and Address the Determinants of Health and their Interactions were implemented more frequently compared to Collaborate Across Sectors and Levels and Employ Mechanisms for Public Involvement, which were infrequently implemented. CONCLUSION: This preliminary scale is a way for sexual health programs to measure the extent that a population health approach is implemented by their organization. Further testing with a broader sample is needed to strengthen generalizability and address reliability.

Simulating surveys for graduate researcher development.

Recognizing the value of experiential education in social/behavioral science research training, we designed and offered a simulation of a survey research project for doctoral students in education. Through three phases of the project, from instrument design through scale investigation and quantitative analyses, students are developed as researchers in a realistic and authentic way. In this paper, we highlight the advantages, challenges, and outcomes from applying simulation methods within graduate research methods courses, with a specific focus on survey methodology and quantitative skill development.

Self-reported hearing impairment among Greenlandic adolescents: Item development and findings from the Health Behaviour in School-aged Children study 2018.

OBJECTIVES: Ear infections are the leading cause of hearing impairment among children worldwide and a major public health problem in many indigenous populations, yet representative studies of self-reported hearing impairment are currently scarce. The purpose of the present study was therefore two-sided; first to develop an item bank for the collection of data on hearing impairment among Greenlandic adolescents, and second to report data on the child reports on hearing impairment from a national questionnaire-based survey. METHODS: The study describes the process of developing items measuring hearing impairment among schoolchildren, and reports data for their inclusion into a national questionnaire survey. The data formed part of the Health Behaviour in School-aged Children (HBSC Greenland) 2018 survey including 2,273 students, corresponding to 47.6% of all Greenlandic schoolchildren in the age range from 10 to 16 years. Data analyses performed describe the data characteristics and the frequency of self-reported hearing impairment among Greenlandic schoolchildren. Binary logistic regression examined the associations of hearing impairment on school-related (risk) factors and self-rated health. RESULTS: An average of 4% reported experiencing ear pain almost daily, and almost 10% reported ear pain at least weekly. Moreover, 3% reported having inflammation in the ear at least weekly, and 5% reported to have such impaired hearing that they were not at all able to follow what happened in school. Logistic regression showed that girls had significantly higher odds of low self-rated health, poor school environment and academic achievement below average when they had experienced impaired hearing. All ORs were statistically significant, varying from 1.85 (95% CI: 1.16-2.94) for low self-rated health, to 3.05 (95% CI 1.83-5.11) for feeling pressured by schoolwork. For boys the only significant association with impaired hearing was an academic achievement below average of 1.73 (95% CI 1.08-2.77). CONCLUSIONS: The study confirms clinical knowledge and case studies that there are a significant proportion of Greenlandic adolescents who have experienced impaired hearing. Future studies may use questionnaire data to follow up on children with hearing impairment to be able to report changes over time and associations to school-related and social factors.

Using Automatic Item Generation to Create Solutions and Rationales for Computerized Formative Testing.

Computerized testing provides many benefits to support formative assessment. However, the advent of computerized formative testing has also raised formidable new challenges, particularly in the area of item development. Large numbers of diverse, high-quality test items are required because items are continuously administered to students. Hence, hundreds of items are needed to develop the banks necessary for computerized formative testing. One promising approach that may be used to address this test development challenge is automatic item generation. Automatic item generation is a relatively new but rapidly evolving research area where cognitive and psychometric modeling practices are used to produce items with the aid of computer technology. The purpose of this study is to describe a new method for generating both the items and the rationales required to solve the items to produce the required feedback for computerized formative testing. The method for rationale generation is demonstrated and evaluated in the medical education domain.

Quality of life in coeliac disease: qualitative interviews to develop candidate items for the Coeliac Disease Assessment Questionnaire.

BACKGROUND: Coeliac-specific measures have been criticized for not complying with current guidance on the development of patient-reported outcome measures (PROMs). The aim of this study was to develop a measure to assess health-related quality of life in adults with coeliac disease (CD), in accordance with current guidance for PROM development. METHODS: In-depth qualitative interviews were conducted with adults with CD. A thematic analysis was undertaken to develop a coding framework. All interviews were analyzed according to this framework. Interviewing continued until data saturation was achieved. Candidate items were developed on the basis of the interview findings. RESULTS: The analysis revealed 6 themes: 1) symptoms, 2) gluten-free diet, 3) emotional health, 4) impact on activities, 5) relationships, and 6) financial issues. Data saturation was reached after 8 interviews, but a total of 23 interviews were conducted to include a wide enough range of diverse participants. From the themes, 64 candidate items (9 for symptoms, 15 for emotional health, 16 for gluten-free diet, 7 for relationships, 12 for impact on activities, and 5 for financial issues) were developed to form the first draft of the Coeliac Disease Assessment Questionnaire (CDAQ). CONCLUSION: The 64 items reflect all the issues of importance to people with CD. Next, these items will be pretested and refined to lead to a shorter draft version of the CDAQ before it is administered in a survey to produce a final version with subscales.

The EORTC CAT Core-The computer adaptive version of the EORTC QLQ-C30 questionnaire.

BACKGROUND: To optimise measurement precision, relevance to patients and flexibility, patient-reported outcome measures (PROMs) should ideally be adapted to the individual patient/study while retaining direct comparability of scores across patients/studies. This is achievable using item banks and computerised adaptive tests (CATs). The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 30 (QLQ-C30) is one of the most widely used PROMs in cancer research and clinical practice. Here we provide an overview of the research program to develop CAT versions of the QLQ-C30's 14 functional and symptom domains. METHODS: The EORTC Quality of Life Group's strategy for developing CAT item banks consists of: literature search to identify potential candidate items; formulation of new items compatible with the QLQ-C30 item style; expert evaluations and patient interviews; field-testing and psychometric analyses, including factor analysis, item response theory calibration and simulation of measurement properties. In addition, software for setting up, running and scoring CAT has been developed. RESULTS: Across eight rounds of data collections, 9782 patients were recruited from 12 countries for the field-testing. The four phases of development resulted in a total of 260 unique items across the 14 domains. Each item bank consists of 7-34 items. Psychometric evaluations indicated higher measurement precision and increased statistical power of the CAT measures compared to the QLQ-C30 scales. Using CAT, sample size requirements may be reduced by approximately 20-35% on average without loss of power. CONCLUSIONS: The EORTC CAT Core represents a more precise, powerful and flexible measurement system than the QLQ-C30. It is currently being validated in a large independent, international sample of cancer patients.

Development of the BELANA questionnaire for the analysis of economic burdens of food allergy and intolerance.

INTRODUCTION: Patients affected by food allergies and intolerance need to apply dedicated avoidance strategies and also prevent the consequences of unbalanced diets. In most countries, the health economic costs for these patients are unknown. METHODS: To measure temporal and financial burdens of the patients in multinational settings, the BELANA questionnaire (Burdens and Expenses of Living as an Adult with Nutrition based Allergy or Intolerance) has been developed. For the complementary measurement of Health Related Quality of Life (HR-QoL), a combined appliance of the disease-specific FAQLQ-AF (Food Allergy Quality of Life Questionnaire - Adult Form) and the generic SF-12v1 (Short Form-12 Health Survey) has been chosen. RESULTS: BELANA collects six economic items while avoiding questions, which are already included in the HR-QoL questionnaires or could lead to denial tendencies. In a web-based pilot survey with 51 patients, the practicability of using BELANA together with the complementary quality of life instruments was investigated. The electronic data collection offers real time plausibility checks and limits the workload for completion and data evaluation. DISCUSSION: The response rates at BELANA health-economic items (76 - 100%) and the high amount of completed questionnaires (50 of 51) confirm the patients acceptance of the chosen methodology. Within the web-based survey, the combination of BELANA, FAQLQ-AF and SF-12v1 was completed in an average of 22 minutes. An age-related selection bias was not been confirmed in this pilot application. The median age in the pilot trial was 37.9 years (minimum age to participate was 18 years, range from 19 to 72 years, Standard Deviation (SD) = 12.4 years). Most of the participants were female (44 of 50). CONCLUSION: It is assumed that the BELANA questionnaire should be a useful tool for the evaluation of health-economic burden for patients with food allergy and intolerance.

Geração de itens e validação de conteúdo de domínios e de itens para o indivíduo com osteoartrite do joelho: um estudo de método misto / Item generation and content validation of domains with item pool for the individual with knee osteoarthritis: a mixed-method study

INTRODUÇÃO: Existem várias escalas para avaliar as percepções subjetivas e os componentes individuais em indivíduos com osteoartrite (OA) de joelho. Até o momento, não há escalas disponíveis conhecidas para medir o equilíbrio combinado entre mobilidade, AVD e QV em OA de joelho com base na Classificação Internacional de Funcionalidade, Incapacidade e Saúde (CIF). OBJETIVO: Gerar itens e domínios relacionados aos problemas enfrentados pelos indivíduos com OA de joelhos e validar o conteúdo por especialistas. MÉTODOS: Os domínios e itens foram gerados através de pesquisa bibliográfica extensa (ELS) para extrair itens relacionados a equilíbrio, mobilidade, ADL e QV em indivíduos com OA em joelhos baseados na CIF e através de entrevista aprofundada direta (EAD) em 13 pessoas com OA de joelhos e três especialistas. A validação de conteúdo dos domínios e itens gerados foi validada por 10 especialistas por meio da pesquisa Delphi online. O índice mínimo de validação de conteúdo em nível de item (I-CVI) de 0,80 foi considerado para validar os itens identificados e o índice de validação de conteúdo em nível de escala geral (S-CVI) de 0,90 foi fixado para validar os itens gerados para uso no processo de desenvolvimento da escala. RESULTADOS: Os 117 itens gerados por EAD na ELS foram inicialmente agrupados em 18 domínios. A validação de conteúdo pelo método Delphi resultou em uma diminuição para 56 itens agrupados em 14 domínios com SCVI de 0, 93. CONCLUSÃO: O conjunto abrangente de itens de deficiência, limitação de atividade e restrição de participação para indivíduos com OA de joelhos nos domínios propostos foi desenvolvido e o conteúdo validado. Esses itens são recomendados para uso no desenvolvimento de uma nova escala abrangente de índice de osteoartrite do joelho (CKOAI).

INTRODUCTION: There are several scales to evaluate subjective perceptions and individual components in individuals with knee osteoarthritis (IKOA). Till date, no scale is available to measure the combined balance, mobility, ADL and QoL in IKOA based on the International Classification of Functioning, Disability and Health (ICF). OBJECTIVE: The purpose of the study was to generate items and domains related to problems faced by IKOA and to validate the content by experts. METHODS: The domains and items were generated through extensive literature search (ELS) to extract items related to symptoms, balance, mobility, ADL and QoL in IKOA based on the International Classification of Functioning, Disability and Health (ICF) and through in-depth direct interview (IDDI) from 13 IKOA and three experts. The content validation of domains and items generated were validated by 10 experts through online Delphi survey. Minimum itemlevel content validation index (I-CVI) of 0.80 was considered to validate the identified items and the overall scale-level content validation index (S-CVI) of 0.90 was fixed to validate the generated items to use in scale development process. RESULTS: 117 items generated by IDDI and ELS were grouped under 18 domains initially. Content validation by Delphi method resulted in reduction with 56 item pool being grouped under the 14 domains with SCVI is 0.93. CONCLUSION: The comprehensive impairment, activity limitation and participation restriction item pool for IKOA under the proposed domains, have been developed and content validated. These items are recommended for their use in development of new comprehensive knee osteoarthritis index scale (CKOAI).

Enhancing the Construct and Content Validity of Rating Scales for Clinical Research: Using Qualitative Methods to Develop a Rating Scale to Assess Parental Perceptions of Their Role in Promoting Infant Exercise.

With a focus on the early stages of developing new assessment tools, we present an example of how researchers can apply qualitative data to the development of conceptual domains and specific items representing those domains for quantitative instruments. Specifically, our previous research examining mothers' perceptions and experiences of engaging in assisted exercise with their infants provided the foundation for the development of the Perceptions of Pediatric Activity Scale (PPAS). We describe the process we used to develop the PPAS as an exemplar for the process of incorporating qualitative data in instrument development. In addition, we address instrument development for diverse populations, and we provide examples illustrating how we extracted concepts using a concept-indicator model to construct the items in the PPAS. We conclude by noting that we are currently in the process of pilot-testing the PPAS to evaluate its utility and reliability.