Identifying the psychosocial predictors of ultraviolet exposure to the face in patients with xeroderma pigmentosum: a study of the behavioural factors affecting clinical outcomes in this genetic disease.

BACKGROUND: For patients with xeroderma pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR), particularly for the face. We have recently developed a methodology for objectively measuring photoprotection behaviour ('UVR dose to facial skin') and have found that the degree of photoprotection varies greatly between patients with XP. We have previously identified factors affecting photoprotection behaviour in XP using a subjective measure of photoprotection. Here, we have used this objective methodology to identify the factors which determine photoprotection behaviour in XP. METHODS: We studied 29 psychological, social, demographic and clinical variables in 36 patients with XP. We have previously objectively measured UVR protection (by measuring the dose of UVR reaching the skin of the face over a 3-week period) in these patients. Here, we use linear mixed-effects model analysis to identify the factors which lead to the differences in degree of photoprotection observed in these patients. RESULTS: Psychosocial factors accounted for as much of the interindividual variation in photoprotection behaviour (29%) as demographic and clinical factors (24%). Psychosocial factors significantly associated with worse UVR protection included: automaticity of the behaviours, and a group of beliefs and perceptions about XP and photoprotection known to associate with poor treatment adherence in other diseases. CONCLUSIONS: We have identified factors contributing to poor photoprotection in XP. Identifying these potentially reversible psychosocial features has enabled us to design an intervention to improve photoprotection in patients with XP, aiming to prevent skin and eye cancers in these patients.

Facial photoprotection in xeroderma pigmentosum (XP) patients: Validation of a new self-reported questionnaire of adherence.

BACKGROUND/PURPOSE: Adherence to photoprotection is the only way to prevent skin cancers and eye disease in xeroderma pigmentosum (XP). No validated self-report questionnaire exists for assessing adherence to photoprotection practices in individuals with XP. We sought to validate a self-reported measure of adherence to face photoprotection in this population. METHODS: Sixty six XP patients recruited from the patient list of the XP specialist service in London, UK, completed a questionnaire of adherence to specific photoprotection behaviours. We measured objective ultraviolet radiation (UVR) exposure to the face continuously for 21 days with a wristworn UVR electronic dosimeter combined with a daily photoprotection diary. Reliability and convergent validity of the questionnaire were tested in relation to overall UVR exposure, UVR dose to the face, daily photoprotection activities, other self-reported photoprotection practices and clinical ratings of patient's protection. RESULTS: Internal consistency of the questionnaire was satisfactory. Questionnaire total scores were concordant with objective UVR exposure and UVR dose to the face. However, not all participants who reported good/excellent face photoprotection on the questionnaire recorded high levels of photoprotection in the daily diary. Correlations between the questionnaire and other practices and the clinical rating ranged from small to large in size. There was no correlation between the level of face photoprotection and self-reported avoidance of going outside. CONCLUSIONS: Our questionnaire was reliable and had good convergent validity with other indicators of photoprotection. This questionnaire could assist clinicians to detect low levels of adherence, and the methodology used to develop validated questionnaires for other photosensitive conditions.

Behavioural intervention for weight loss maintenance versus standard weight advice in adults with obesity: A randomised controlled trial in the UK (NULevel Trial).

BACKGROUND: Scalable weight loss maintenance (WLM) interventions for adults with obesity are lacking but vital for the health and economic benefits of weight loss to be fully realised. We examined the effectiveness and cost-effectiveness of a low-intensity technology-mediated behavioural intervention to support WLM in adults with obesity after clinically significant weight loss (≥5%) compared to standard lifestyle advice. METHODS AND FINDINGS: The NULevel trial was an open-label randomised controlled superiority trial in 288 adults recruited April 2014 to May 2015 with weight loss of ≥5% within the previous 12 months, from a pre-weight loss BMI of ≥30 kg/m2. Participants were self-selected, and the majority self-certified previous weight loss. We used a web-based randomisation system to assign participants to either standard lifestyle advice via newsletter (control arm) or a technology-mediated low-intensity behavioural WLM programme (intervention arm). The intervention comprised a single face-to-face goal-setting meeting, self-monitoring, and remote feedback on weight, diet, and physical activity via links embedded in short message service (SMS). All participants were provided with wirelessly connected weighing scales, but only participants in the intervention arm were instructed to weigh themselves daily and told that they would receive feedback on their weight. After 12 months, we measured the primary outcome, weight (kilograms), as well as frequency of self-weighing, objective physical activity (via accelerometry), psychological variables, and cost-effectiveness. The study was powered to detect a between-group weight difference of ±2.5 kg at follow-up. Overall, 264 participants (92%) completed the trial. Mean weight gain from baseline to 12 months was 1.8 kg (95% CI 0.5-3.1) in the intervention group (n = 131) and 1.8 kg (95% CI 0.6-3.0) in the control group (n = 133). There was no evidence of an effect on weight at 12 months (difference in adjusted mean weight change from baseline: -0.07 [95% CI 1.7 to -1.9], p = 0.9). Intervention participants weighed themselves more frequently than control participants and were more physically active. Intervention participants reported greater satisfaction with weight outcomes, more planning for dietary and physical activity goals and for managing lapses, and greater confidence for healthy eating, weight loss, and WLM. Potential limitations, such as the use of connected weighing study in both trial arms, the absence of a measurement of energy intake, and the recruitment from one region of the United Kingdom, are discussed. CONCLUSIONS: There was no difference in the WLM of participants who received the NULevel intervention compared to participants who received standard lifestyle advice via newsletter. The intervention affected some, but not all, process-related secondary outcomes of the trial. TRIAL REGISTRATION: This trial is registered with the ISRCTN registry (ISRCTN 14657176; registration date 20 March 2014).

Attribution of weight regain to emotional reasons amongst European adults with overweight and obesity who regained weight following a weight loss attempt.

PURPOSE: Despite the wide availability of effective weight loss programmes, maintenance of weight loss remains challenging. Difficulties in emotion regulation are associated with binge eating and may represent one barrier to long-term intervention effectiveness in obesity. The purpose of this study was to determine the relationship between emotion regulation difficulties and the extent of weight regain in a sample of adults who had lost, and then regained, weight, and to examine the characteristics associated with emotional difficulties. METHODS: 2000 adults from three European countries (UK, Portugal, and Denmark) completed an online survey assessing self-reported weight loss and regain following their most recent weight loss attempt. They also completed a binge eating disorder screening questionnaire and, if they had regained weight, were asked if they attributed it to any emotional factors (a proxy for emotion regulation difficulties). Spearman's correlations and logistic regression were used to assess the associations between emotion regulation, weight regain, and strategy use. RESULTS: Emotion regulation difficulties were associated with greater weight regain (N = 1594 who lost and regained weight). Attribution to emotional reasons was associated with younger age, female gender, loss of control and binge eating, lower perceptions of success at maintenance, using more dietary and self-regulatory strategies in weight loss, and fewer dietary strategies in maintenance. CONCLUSIONS: Weight-related emotion regulation difficulties are common amongst regainers and are associated with regaining more weight. Affected individuals are already making frequent use of behavioural strategies during weight loss, but do not apply these consistently beyond active attempts. Simply encouraging the use of more numerous strategies, without concurrently teaching emotion regulation skills, may not be an effective means to improving weight outcomes in this group. LEVEL OF EVIDENCE: Level V, descriptive (cross-sectional) study.

The relationship between gluten free diet adherence and depressive symptoms in adults with coeliac disease: A systematic review with meta-analysis.

PURPOSE: Depressive symptoms are common in patients with coeliac disease (CD) and may represent a barrier to gluten free diet (GFD) adherence. The aims of this meta-analysis were: (1) to synthesise the evidence on the relationship between depression or depressive symptoms and degree of adherence to a GFD in patients with CD who are already attempting a GFD (i.e., post-diagnosis and onset of GFD), and (2) to summarise the direction of causation of any observed relationship. METHODS: A random effects meta-analysis of 8 cross-sectional studies (N = 1644) was conducted. Included studies measured self-reported depressive symptoms and GFD adherence using either a dietitian interview or validated self-report questionnaire that considered unintentional gluten consumption. RESULTS: There was a moderate association between poorer GFD adherence and greater depressive symptoms (r = 0.398, 95% CI = 0.321-0.469), with marked heterogeneity in the effects (I2 = 66.8%). A sensitivity analysis excluding studies with a moderate/high (k = 1) or unclear risk of bias (k = 1) did not change the results. CONCLUSION: The low number of studies meeting inclusion criteria limits the strength of the conclusions. Available evidence suggests there is an association between poorer GFD adherence and self-reported depressive symptoms; however, studies using longitudinal and prospective designs, and reliable measures, particularly for adherence, are needed to confirm this association. The direction of causation between depression and adherence remains unclear.

Maintenance of a gluten free diet in coeliac disease: The roles of self-regulation, habit, psychological resources, motivation, support, and goal priority.

INTRODUCTION: A strict lifelong gluten free diet (GFD) is the only treatment for coeliac disease (CD). Theory-based research has focused predominantly on initiation, rational, and motivational processes in predicting adherence. The aim of this study was to evaluate an expanded collection of theoretical constructs specifically relevant to the maintenance of behaviour change, in the understanding and prediction of GFD adherence. METHODS: Respondents with CD (N = 5573) completed measures of GFD adherence, psychological distress, intentions, self-efficacy, and the maintenance-relevant constructs of self-regulation, habit, temptation and intentional and unintentional lapses (cognitive and behavioural consequences of lowered or fluctuating psychological resources and self-control), motivation, social and environmental support, and goal priority, conflict, and facilitation. Correlations and multiple regression were used to determine their influence on adherence, over and above intention and self-efficacy, and how relationships changed in the presence of distress. RESULTS: Better adherence was associated with greater self-regulation, habit, self-efficacy, priority, facilitation, and support; and lower psychological distress, conflict, and fewer self-control lapses (e.g., when busy/stressed). Autonomous and wellbeing-based, but not controlled motivations, were related to adherence. In the presence of distress, the influence of self-regulation and intentional lapses on adherence were increased, while temptation and unintentional lapses were decreased. DISCUSSION: The findings point to the importance of considering intentional, volitional, automatic, and emotional processes in the understanding and prediction of GFD adherence. Behaviour change interventions and psychological support are now needed so that theoretical knowledge can be translated into evidence-based care, including a role for psychologists within the multi-disciplinary treatment team.

Support needs of patients with obesity in primary care: a practice-list survey.

BACKGROUND: UK guidelines recommend that patients with obesity in primary care receive opportunistic weight loss advice from health care professionals, but there is a lack of research into the characteristics and existing weight management practices of these patients. The aim of this study was to characterise primary care patients with obesity in England, to inform the screening, support, and referral options appropriate to this group. METHODS: We surveyed 1309 patients registered at 15 GP practices in North East England, aged ≥18 years and with objectively recorded obesity (BMI ≥ 30 kg/m2). Study participants reported their weight history, health status, past and current weight loss activities, motivating factors, weight loss strategies used, professional support received, and perceived barriers to weight loss. RESULTS: 62% of participants were actively trying to lose weight, and a further 15% had attempted and discontinued weight loss in the last 12 months. Only 20% of the sample had sought GP support for weight loss in the last 12 months; instead, most efforts to lose weight were self-guided and did not use evidence-based strategies. Those who sought GP weight loss support were likely to use it and find it motivating. Participants had attempted weight loss on multiple previous occasions and overall felt less confident and successful at maintaining weight loss than losing it. Participants at greatest clinical risk (higher BMI and more health conditions) reported particularly low confidence and multiple barriers to weight loss, but were nevertheless highly motivated to lose weight and keep it off. CONCLUSIONS: We identified the need for informational, structural, and weight loss maintenance-specific support for GP patients with objectively-recorded obesity. Study participants were motivated to lose weight and keep it off, but lacked the confidence and understanding of effective strategies required to do this. GP weight loss support was acceptable and useful but underutilised, indicating that screening and brief referral interventions to structured programmes may augment patients' current weight management activities and meet key support needs whilst optimising limited primary care resources.

Dissemination of an online theory-based intervention to improve gluten-free diet adherence in coeliac disease: the relationship between acceptability, effectiveness, and attrition.

BACKGROUND: Both acceptability and behaviour change data provide important information about the likelihood of success of an intervention when disseminated outside the research context. Despite this, few studies have combined such data for use in ongoing intervention development. PURPOSE: To assess the acceptability and feasibility of an online intervention to improve gluten-free diet (GFD) adherence in coeliac disease, and to examine the relationships with participant characteristics, attrition, and effectiveness to inform ongoing intervention developments to ultimately reduce attrition and improve the reach and effectiveness of the programme. METHODS: All participants completed measures of GFD adherence, theory of planned behaviour variables, psychological symptoms, and demographic and disease characteristics. Acceptability and feasibility ratings were obtained at the conclusion of each of the six intervention modules. Chi-square analyses were used to examine differences between completers and non-completers, and Spearman's correlations were used to determine the relationships between participant characteristics, effectiveness, and acceptability and feasibility. RESULTS: Participants who rated the early modules less favourably were more likely to drop-out of the intervention. Acceptability and feasibility ratings were also associated with the presence of psychological symptoms, use of adaptive coping strategies, GFD duration, and attitude change. CONCLUSIONS: The findings suggest that changes to the structure and implementation of the intervention may be useful in minimising attrition and maximising effectiveness for future dissemination in a wider coeliac disease population.

Using the theory of planned behaviour to measure motivation for recovery in anorexia nervosa.

Anorexia nervosa (AN) is a difficult to treat mental illness associated with low motivation for change. Despite criticisms of the transtheoretical stages of change model, both generally and in the eating disorders (EDs), this remains the only model to have been applied to the understanding of motivation to recover from AN. The aim of this pilot study was to determine whether the theory of planned behaviour (TPB) would provide a good fit for understanding and predicting motivation to recover from AN. Two studies were conducted - in the first study eight women who had recovered from chronic AN were interviewed about their experiences of recovery. The interview data were subsequently used to inform the development of a purpose-designed questionnaire to measure the components of the TPB in relation to recovery. In the second study, the resultant measure was administered to 67 females with a current diagnosis of AN, along with measures of eating disorder psychopathology, psychological symptoms, and an existing measure of motivation to recover (based on the transtheoretical model). Data from the interview study confirmed that the TPB is an appropriate model for understanding the factors that influence motivation to recover from AN. The results of the questionnaire study indicated that the pre-intention variables of the TPB accounted for large proportions of variance in the intention to recover (72%), and more specifically the intention to eat normally and gain weight (51%). Perceived behavioural control was the strongest predictor of intention to recover, while attitudes were more important in the prediction of the intention to eat normally/gain weight. The positive results suggest that the TPB is an appropriate model for understanding and predicting motivation in AN. Implications for theory and practice are discussed.

Examining the predictive utility of an extended theory of planned behaviour model in the context of specific individual safe food-handling.

BACKGROUND: In order to minimise the occurrence of food-borne illness, it is recommended that individuals perform safe food-handling behaviours, such as cooking food properly, cleaning hands and surfaces before preparing food, keeping food at the correct temperature, and avoiding unsafe foods. Previous research examining the determinants of safe food-handling behaviour has produced mixed results; however, this may be due to the fact that this research examined these behaviours as a totality, rather than considering the determinants of each behaviour separately. As such, the objective for the present study was to examine the predictors of the four aforementioned safe food-handling behaviours by applying an extended theory of planned behaviour to the prediction of each distinct behaviour. METHOD: Participants were 170 students who completed theory of planned behaviour measures, with the addition of moral norm and habit strength at time 1, and behaviour measures one week later. RESULTS: While the influence of injunctive and descriptive norm and perceived behavioural control differed between behaviours, it appeared that moral norm was an important predictor of intention to engage in each of the four behaviours. Similarly, habit strength was an important predictor of each of the behaviours and moderated the relationship between intention and behaviour for the behaviour of avoiding unsafe food. CONCLUSION: The implication of these findings is that examining safe food-handling behaviours separately, rather than as a totality, may result in meaningful distinctions between the predictors of these behaviours.

An examination of the demographic predictors of adolescent breakfast consumption, content, and context.

BACKGROUND: Breakfast consumption is important to health; however, adolescents often skip breakfast, and an increased understanding of the breakfast consumption patterns of adolescents is needed. The purpose of this study was to identify the predictors of breakfast eating, including the content and context, in an adolescent sample from Australia and England. METHODS: Four-hundred and eighty-one students completed an online questionnaire measuring breakfast skipping, and breakfast content (what was eaten) and context (who they ate with, involvement in preparation). Logistic regression was conducted to investigate the predictors of skipping breakfast, breakfast context, and consumption of the ten most commonly consumed foods. Chi-square analyses were used to examine differences in breakfast content according to context. RESULTS: Most students (88%) had consumed breakfast on the day of the survey; breakfast skipping was more common in England (18%) than in Australia (8%). Country, gender, socioeconomic status, and body mass index (BMI) were all predictors of breakfast content and context. Whether adolescents ate with others and/or were involved in breakfast preparation predicted the content of breakfast consumed. CONCLUSIONS: This study provides a comprehensive examination of the factors underlying breakfast consumption (content and context) and has important implications for the development of evidence-based interventions to improve rates of breakfast consumption and the quality of food consumed amongst adolescents.

The role of gender and sexual experience in predicting adolescent condom use intentions using the theory of planned behaviour.

OBJECTIVES: To examine how the prediction of condom-related cognitions, intentions, and behaviour amongst adolescents may differ according to gender and sexual experience within a theory of planned behaviour (TPB) framework. METHODS: Adolescents (N = 306) completed questionnaires about sexual experience, condom use, TPB variables, perceived risk, and safe sex knowledge. RESULTS: Significant differences in TPB variables, perceived risk, and knowledge were found; males and sexually experienced participants were generally less positive about condom use. Twenty percent of the variance in attitudes was accounted for by four variables; specifically, female gender, no previous sexual experience, better safe sex knowledge, and greater risk perceptions were associated with more positive attitudes. The prediction of intentions separately amongst sexually experienced (R(2) = 0.468) and inexperienced (R(2) = 0.436) participants revealed that, for the former group, attitudes and subjective norms were the most important considerations. In contrast, among the inexperienced participants, attitudes and the gender-by-perceived risk interaction term represented significant influences. CONCLUSIONS: The results suggest that interventions designed to improve adolescents' intentions to use condoms and rates of actual condom use should consider differences in gender and sexual experience.

A randomized controlled trial of an online intervention to improve gluten-free diet adherence in celiac disease.

OBJECTIVES: To test the effectiveness of an interactive online intervention to improve gluten free diet adherence in adults with celiac disease. METHODS: A Randomized controlled trial was conducted. A total of 189 adults with biopsy-confirmed celiac disease were recruited and randomized to receive the intervention (n=101) or to a waitlist control condition (n=88). Post-intervention data was available for 70 intervention and 64 waitlist participants. Three month follow-up data was obtained for 46/50 completers from the intervention group. The primary outcome measure was gluten-free diet adherence. Secondary outcomes were gluten-free diet knowledge, quality of life and psychological symptoms. RESULTS: Results were based on intention-to-treat analyses. The intervention group evidenced significantly improved gluten-free diet adherence, and gluten-free diet knowledge following the treatment period relative to the waitlist control group. The change in knowledge did not contribute to the change in adherence. These improvements were maintained at 3-month' follow-up. CONCLUSIONS: The online program was effective in improving adherence and represents a promising resource for individuals with celiac disease who are struggling to achieve or maintain adequate gluten free diet adherence.

Gluten free diet adherence in coeliac disease. The role of psychological symptoms in bridging the intention-behaviour gap.

This study examined the potential role of psychological symptoms in limiting the translation of positive intention into strict gluten free diet (GFD) adherence in coeliac disease (CD) within a theory of planned behaviour (TPB) framework. It was hypothesised that participants with more symptomatic psychological profiles would exhibit poorer adherence, primarily in the context of positive intentions. Coeliac disease participants (N=390) completed online measures of gluten free diet adherence, psychological symptoms, coping behaviour, and TPB items. Intention and behaviour were moderately correlated, confirming the existence of the intention-behaviour gap. Psychological symptoms accounted for additional variance over and above TPB variables in GFD adherence but not intention. Participants who failed to act on their positive intentions displayed more psychological symptoms and greater reliance on maladaptive coping strategies than those with consistent intention-behaviour relationships (p<.01). The heightened incidence of psychological symptoms in CD has a small but significant negative impact on the ability to translate positive intentions into strict adherence. Directions for future research including interventions to improve GFD adherence are discussed.

Acceptability and influence of a complex personalized intervention on changes in photoprotection behaviours among people with xeroderma pigmentosum.

OBJECTIVES: Rigorous photoprotection is the only means to prevent skin cancer in people with the rare condition of xeroderma pigmentosum (XP). We conducted a qualitative process evaluation of patient experiences and responses to a highly personalized, multi-component intervention, 'XPAND', designed to influence the psychosocial determinants of inadequate photoprotection among adults with XP. DESIGN: Qualitative study of 15 patients following participation in a RCT. METHODS: Semi-structured interviews explored acceptability, changes in photoprotection and attributions for behavioural changes. Analysis followed a framework approach. RESULTS: Participants were overwhelmingly positive in their views of the quality and range of components of XPAND and the relevance to their personal photoprotection barriers. All participants reported improved adherence to at least one photoprotection activity and nearly two-thirds of participants noted improvements across multiple activities. Participants believed improvements in their photoprotection behaviours were influenced by different change mechanisms. Sunscreen application, was mainly facilitated by habit formation, prompted by text messages, whereas the wearing of a photoprotective face buff was influenced by strategies, learnt during one-to-one sessions, to overcome worry about looking different. Enhancement of general self-confidence and perceived support from XPAND described by participants facilitated change more broadly. CONCLUSIONS: Exploration of responses to XPAND is required in the international XP population, followed by adaptation and evaluation to see if it could benefit other patient groups at higher risk of skin cancer. Implications for approaches to behaviour change include the acceptability of complex multidimensional interventions, the importance of dynamic personalization and the interactive nature of behaviour change mechanisms.

Measuring beliefs about gluten free diet adherence in adult coeliac disease using the theory of planned behaviour.

The theory of planned behaviour (TPB) was used to elicit the salient beliefs about gluten free diet (GFD) adherence in adults with coeliac disease (CD) and to design a TPB questionnaire to predict adherence levels. This questionnaire was administered to 265 CD participants with adherence and quality of life (QOL) measures, a GFD knowledge test, and self-reported psychiatric history. Regression analyses were used to test the fit of the TPB in predicting adherence, and to determine the nature of the relationships between adherence, QOL, knowledge, and psychiatric history. The TPB combined with self-reported depression and anxiety, and QOL explained significant variance in intention (41.0%) and adherence (33.7%). Poorer dietary adherence and psychiatric history were also associated with lower QOL. Findings suggest that the TPB provides an adequate model for predicting GFD adherence in CD, and the presence of psychiatric conditions represents a potential intervention target to improve adherence and QOL.

Evidence-Based Digital Tools for Weight Loss Maintenance: The NoHoW Project.

BACKGROUND: Effective interventions and commercial programmes for weight loss (WL) are widely available, but most people regain weight. Few effective WL maintenance (WLM) solutions exist. The most promising evidence-based behaviour change techniques for WLM are self-monitoring, goal setting, action planning and control, building self-efficacy, and techniques that promote autonomous motivation (e.g., provide choice). Stress management and emotion regulation techniques show potential for prevention of relapse and weight regain. Digital technologies (including networked-wireless tracking technologies, online tools and smartphone apps, multimedia resources, and internet-based support) offer attractive tools for teaching and supporting long-term behaviour change techniques. However, many digital offerings for weight management tend not to include evidence-based content and the evidence base is still limited. The Project: First, the project examined why, when, and how many European citizens make WL and WLM attempts and how successful they are. Second, the project employed the most up-to-date behavioural science research to develop a digital toolkit for WLM based on 2 key conditions, i.e., self-management (self-regulation and motivation) of behaviour and self-management of emotional responses for WLM. Then, the NoHoW trial tested the efficacy of this digital toolkit in adults who achieved clinically significant (≥5%) WL in the previous 12 months (initial BMI ≥25). The primary outcome was change in weight (kg) at 12 months from baseline. Secondary outcomes included biological, psychological, and behavioural moderators and mediators of long-term energy balance (EB) behaviours, and user experience, acceptability, and cost-effectiveness. IMPACT: The project will directly feed results from studies on European consumer behaviour, design and evaluation of digital toolkits self-management of EB behaviours into development of new products and services for WLM and digital health. The project has developed a framework and digital architecture for interventions in the context of EB tracking and will generate results that will help inform the next generation of personalised interventions for effective self-management of weight and health.

Why? What? How? Using an Intervention Mapping approach to develop a personalised intervention to improve adherence to photoprotection in patients with Xeroderma Pigmentosum.

Background: Intervention Mapping (IM) is a systematic approach for developing theory-based interventions across a variety of contexts and settings. This paper describes the development of a complex intervention designed to reduce the dose of ultraviolet radiation (UVR) reaching the face of adults with Xeroderma Pigmentosum (XP), by improving photoprotection. XP is a genetic condition that without extreme UVR photoprotection, leads to high risk of developing skin cancer. Methods: The IM protocol of 6 steps was applied, involving comprehensive mixed-methods formative research. Key stakeholders (XP clinical staff and Patient and Public Involvement Panel), were instrumental at every step. Behaviour change methods were informed by the IM taxonomy, therapeutic approaches (e.g. ACT, CBT) and coded according to the taxonomy of behaviour change techniques (version 1). Results: We designed a personalised modular intervention to target psychosocial determinants of photoprotective activities that influence the amount of UVR reaching the face. Content was developed to target determinants of motivation to protect and factors preventing the enactment of behaviours. Participants received personalised content addressing determinants/barriers most relevant to them, as well as core 'behaviour-change' material, considered important for all (e.g. SMART goals). Core and personalised content was delivered via 7 one-to-one sessions with a trained facilitator using a manual and purpose designed materials: Magazine; text messages; sunscreen application video; goal-setting tools (e.g. UVR dial and face protection guide); activity sheets. Novel features included use of ACT-based values to enhance intrinsic motivation, targeting of emotional barriers to photoprotection, addressing appearance concerns and facilitating habit formation. Conclusion: IM was an effective approach for complex intervention design. The structure (e.g. use of matrices) tethered the intervention tightly to theory and evidence-based approaches. The significant amount of time required needs to be considered and may hinder translation of IM into clinical and non-academic settings.

Improving photoprotection in adults with xeroderma pigmentosum: personalisation and tailoring in the 'XPAND' intervention.

BACKGROUND: Individualised behaviour change interventions can result in greater effects than one-size-fits-all approaches. Factors linked to success include dynamic (vs. static) tailoring, and tailoring on behaviour, multiple theoretical variables, and participant characteristics. XP is a very rare (∼100 UK patients) genetic disease, involving an inability to repair ultraviolet radiation (UVR)-induced damage, resulting in skin cancers and eye damage from an early age, and mean life expectancy of 32-years. Management involves rigorous UVR photoprotection, which is often inadequate, and no interventions have been published. UK-based care is personalised and delivered by a multidisciplinary team at the National XP Service in London. Following an intensive, mixed-methods formative phase with patients diagnosed with XP (n-of-1, qualitative interviews, objective UVR measurement, cross-sectional survey) and relevant stakeholder consultation (clinical and patient/public teams), the 'XPAND' intervention was developed. This paper describes the comprehensive and novel tailoring and personalisation processes used to deliver the intervention. METHODS: XPAND consists of core and personalised modules targeting cue-based (time of day, weather, symptoms), belief-based (motivation, priority), self-regulatory (effort, barriers, planning), and emotional (stress, self-consciousness, mental exhaustion) factors, social support, disclosure, habit, and willingness, using appropriately-matched BCTs. A-priori, phase I data and a baseline profiling questionnaire (data sources) were used to allocate modules to participants ('personalisation') and to adapt module content ('tailoring'). Iterative decisions about delivery were based on patient response to feedback, identification of additional barriers (e.g. reasons for varying protection across contexts), and emergence of new barriers as improvements in protection were attempted or achieved (e.g. appearance concerns). CONCLUSIONS: Dynamic multi-level personalisation and tailoring based on mixed-methods in XPAND allowed for insights and decision-making not possible with cross-sectional quantitative or qualitative methods alone. Data collection and allocation/adaptation methods may be of use in other rare conditions where small patient numbers mean that within-participant, individual-level delivery is well-suited and feasible.

The roles of autonomous motivation and self-control lapses in concurrent adherence to a gluten-free diet and a self-chosen weight loss plan in adults with coeliac disease.

Objective: Examine the correspondence between autonomous motivation, self-control lapses, and adherence, to a gluten-free diet (GFD) and weight loss plan in adults with coeliac disease; and assess the impact of the interaction of motivation style and self-control lapses on adherence to both diets. Design: Cross-sectional survey in 519 adults with coeliac disease, 238 of whom were also attempting weight loss. Main outcome measures: Adherence, motivation style, frequency of temptation and self-control lapses (e.g. when tired, stressed, happy) for GFD and weight loss plan. Results: Autonomous motivation was higher, and amotivation lower, for the GFD than weight loss; adherence to the two diets was unrelated. Similar circumstances led to temptation and self-control lapses across diets; both were less frequent for the GFD than weight loss. Motivation and self-control lapses explained 21% and 35% of the variance in adherence, respectively; the interaction between motivation and lapse frequency did not explain additional variance for either diet. Conclusions: There are clear benefits to developing autonomous motivations and strategies to resist temptation for both the GFD and weight loss. Understanding how these processes differ and interact across diets may lead to the design of interventions to improve adherence and weight outcomes in coeliac disease.