A usability and feasibility study of a computerized version of the Bath Adolescent Pain Questionnaire: the BAPQ-C.

BACKGROUND: Pain is a common experience in adolescence, with up to 44% of adolescents reporting chronic pain. For a significant minority, severe pain becomes an ongoing disabling problem. Treatment of adolescent chronic pain aims to reduce the impact of pain on adolescents' lives. Efficient, accurate assessment of the impact of pain is essential to treatment. The 'Bath Adolescent Pain Questionnaire' (BAPQ) is a psychometrically robust multidimensional self-report measure of adolescent functioning. Whilst widely used, the paper-based format of the BAPQ can present completion difficulties for adolescents experiencing chronic pain. To increase the accessibility and clinical utility of the BAPQ, an electronic version of the measure is needed. This study assesses the usability and feasibility of a computerized version of this measure (BAPQ-C) in an adolescent chronic pain population. METHODS: Fourteen adolescents (13 females; 13-16 years) were recruited from a hospital-based residential pain management programme. Participants completed a qualitative 'thinking aloud task' whilst completing the BAPQ-C. and, an acceptability questionnaire regarding the BAPQ-C. Data were analysed using thematic analysis, a widely used qualitative method of data analysis . RESULTS: Two themes labelled 'engagement and technological appeal' and 'accessibility and independence' were generated. Themes revealed numerous factors contributing to participants' preference for the BAPQ-C compared with the paper version of the BAPQ. Participants reported that the BAPQ-C was 'quicker' and 'easier' to complete than the BAPQ. Functional aspects of the BAPQ-C which included use of a touch screen rather than a pen and paper, font colours/styles, the zoom function and the spellchecker, provided participants with improved access. This subsequently increased participants' independence and confidence when completing the measure. CONCLUSION: The BAPQ-C is a feasible multidimensional tool for the assessment of functioning in adolescents who experience chronic pain. It was well-received by participants who were able to complete the measure more quickly, independently and confidently than the paper-based BAPQ. Increased speed, ease and accuracy of completion make the BAPQ-C an ideal tool for use in busy clinical and research settings. Findings highlight the potential benefits of adopting the BAPQ-C when assessing the impact of chronic pain on adolescents in clinic and home-based settings.

Use of Complementary and Alternative Medicine in Axial Spondyloarthritis: A Qualitative Exploration of Self-Management.

Axial spondyloarthritis (axSpA) is an inflammatory rheumatic condition that is often subject to diagnostic delays. Individuals with axSpA report using complementary and alternative therapies prior to and following diagnosis, though little is known concerning reasons underlying use of such therapies. This study provides detailed insights into the motivation and experiences of complementary and alternative medicine use within a population of individuals with axSpA. Open-ended surveys were completed by 30 individuals (20-69 years; 17 females) diagnosed with axSpA. Subsequent telephone interviews were conducted with eight individuals (39-70 years; five females) diagnosed with axSpA. Data were analyzed using reflexive inductive thematic analysis. Themes of "a learning curve", "barriers to complementary and alternative therapy use" and "complementary or mutually exclusive" illustrated how participants" increasing understanding of their condition empowered them to explore complementary and alternative therapies use as an adjunct to mainstream care. Individuals with axSpA recommended greater integration between mainstream and complementary and alternative therapies, valuing informed advice from mainstream healthcare professionals before selecting appropriate complementary and alternative therapies for potential use. Healthcare professionals should be proactive in discussing complementary and alternative therapy use with patients and supply them with details of organizations that can provide good-quality information.

Comparing the eating out experiences of consumers seeking to avoid different food allergens.

BACKGROUND: Eating outside the home is challenging for consumers with food allergy (FA) and intolerance (FI) and lack of allergen information provision in eating out venues can lead to unnecessary restrictions. Following European legislation (2014) designed to improve allergen information provision, little is known about differences in information provision experienced by consumers seeking to avoid particular allergens, or how this impacts on their eating out experiences. This study compared the information provision that consumers with FA/FI to different allergens experience when eating out. METHODS: Using mixed methods, participants were recruited from across the UK and took part in self-report surveys or in-depth interviews. Surveys were completed by 232 participants avoiding either gluten (n = 66), nuts (peanuts/tree nuts) (n = 94), or milk (n = 74), and responses were subject to quantitative analyses. Interviews were carried out with 49 participants avoiding either gluten (n = 13), nuts (n = 14), milk (n = 13) or a combination of these allergens (n = 9), and analysed using the framework approach. RESULTS: Although general improvements in information provision following the legislation were reported, variations in provision between allergen groups led participants seeking to avoid milk to conclude that their dietary needs were less well-understood and seen as less important. These perceptions were reflected in a reluctance to involve eating out venue staff in deliberations about the potential for milk-free meal options. CONCLUSIONS: The provision of visual indicators of the presence of milk and of staff trained in allergen-awareness would improve the eating out experiences of consumers seeking to avoid milk. Medical professions can play a key role in encouraging these patients to pursue their right to make enquiries about allergens in order to avoid accidental milk ingestion when eating out.

Development and preliminary validation of the food intolerance Quality of Life Questionnaire (FIQLQ): Adult Form.

BACKGROUND: Approximately 20% of children and adults avoid certain foods because of perceived food intolerance. Valid and reliable health-related quality of life instruments are needed to measure changes following clinical, therapeutic or policy interventions. However, there are no disease-specific quality of life instruments for adults with food intolerances. OBJECTIVE: To develop the Food Intolerance Quality of Life Questionnaire FIQLQ. Then to conduct psychometric validation including reliability and construct validity. METHODS: We adapted the existing Food Allergy Quality of Life questionnaire (FAQLQ) for interviews with 14 adults with food intolerance. For preliminary psychometric validation, 229 adults with food intolerances completed the online electronic version of FIQLQ. RESULTS: The resultant FIQLQ had 18 items which loaded onto 3 subscales-Emotional Impact, Social and Dietary Restrictions, Reactions and Avoidance. Each subscale had excellent internal consistency reliability (Cronbach's α 0.81-0.94). Content, convergent and construct validity was supported by significant correlations of FIQLQ subscale scores with hypothesised variables including age, numbers of symptoms and level of stress experienced due to intolerance. CONCLUSION: The FIQLQ has good reliability, construct validity and internal consistency. It is short and easy to use, providing a good tool for evaluating quality of life in the clinical research setting and to inform health and regulatory policies.

Parents' and caregivers' experiences and behaviours when eating out with children with a food hypersensitivity.

BACKGROUND: For parents and caregivers of food hypersensitive (FH) children, accommodating their child's dietary needs when eating out can be a challenging experience. This study explored caregivers' experiences and behaviours when eating out with their FH child in order to gain insights into how they support and prepare their child in negotiating safe eating out experiences. METHODS: A cross-sectional, qualitative design was used. In depth, semi-structured interviews were carried out with 15 caregivers of children with FH. Interviews were analysed using framework analysis. RESULTS: Caregivers reported a number of issues relating to eating out with their FH child, or allowing their child to eat out without their supervision. Through themes of 'family context', 'child-focused concerns', and 'venue issues', caregivers described how they managed these and explained the limitations and sacrifices that FH imposed on their child, themselves, and family members. CONCLUSIONS: Through deeper understanding of the anxieties, negotiations and compromises experienced by caregivers of children with FH when they are eating out, clinicians and support charities can tailor their support to meet the needs of caregivers and children. Support and education provision should focus on providing caregivers of children with FH the tools and strategies to help enable safe eating out experiences.

Consumer Preferences for Written and Oral Information about Allergens When Eating Out.

BACKGROUND: Avoiding food allergens when eating outside the home presents particular difficulties for food allergic (FA) and intolerant (FI) consumers and a lack of allergen information in restaurants and takeaways causes unnecessary restrictions. Across Europe, legislation effective from December 2014, aims to improve allergen information by requiring providers of non-prepacked foods to supply information related to allergen content within their foods. METHODS: Using in-depth interviews with 60 FA/FI adults and 15 parents/carers of FA/FI children, we aimed to identify FA/FI consumers' preferences for written and/or verbal allergen information when eating out or ordering takeaway food. RESULTS: A complex and dynamic set of preferences and practices for written and verbal allergen information was identified. Overwhelmingly, written information was favoured in the first instance, but credible personal/verbal communication was highly valued and essential to a good eating out experience. Adequate written information facilitated implicit trust in subsequent verbal information. Where written information was limited, FA/FIs depended on social cues to assess the reliability of verbal information resources, and defaulted to tried and tested allergen avoidance strategies when these were deemed unreliable. CONCLUSION: Understanding the subtle negotiations and difficulties encountered by FA/FIs when eating out can serve as a guide for legislators and food providers; by encouraging provision of clear written and verbal allergen information, and training of proactive, allergen-aware staff. This, in tandem with legal requirements for allergen information provision, paves the way for FA/FIs to feel more confident in eating out choices; and to experience improved eating out experiences.

Benefits of belonging: experimental manipulation of social inclusion to enhance psychological and physiological health parameters.

OBJECTIVE: Acute changes in social belonging are important triggers for alterations in health and well-being, yet research has emphasised the negative effects of 'exclusion' at the expense of evaluating the potentially positive effects of 'inclusion'. This study examined the impact of acute belonging on physiological and psychological outcomes. DESIGN AND MAIN OUTCOME MEASURES: A healthy population (N = 138) were randomly allocated to 'included' or 'excluded' conditions. Condition-dependent differences in pre/during-task heart rate and pre/post-task self-reports of negative/positive mood, and social self-esteem, were assessed. RESULTS: Included participants showed decreased heart rate and negative mood, and increased social self-esteem. No inclusion-related change in positive mood was shown. An increase in heart rate was observed in excluded participants though no changes in negative/positive mood or social self-esteem were shown. Shifts in social self-esteem acted as a mechanism through which inclusion/exclusion impacted upon negative and positive mood alterations. Results remained significant in presence of covariates (sex, global self-esteem, rumination and social anxiety). CONCLUSION: Findings suggest that acting to enhance belonging through 'inclusion' resulted in adaptive physiological and psychological outcomes. Neutral and potentially protective responses were observed in the immediate aftermath of 'exclusion'. Self-esteem served as one route through which these effects were transmitted.

The need to belong and symptoms of acute physical health in early adolescence.

This study examined the role of social belonging and self-esteem in acute physical health and mood in 159 young adolescents (aged 11 to 14 years). Standardized self-report measures of belongingness (school, home and community), self-esteem, acute physical symptoms, and affect, were completed for the previous month. Higher levels of inclusive belonging were associated with fewer physical symptoms and better affect. Domain specific belonging was independently linked to acute physical symptoms and level of affect, with pathways between belonging and outcome mediated by self-esteem. Findings emphasize the need for greater recognition of the role of belonging in physical health outcomes.