Can Smartphone Notifications Help With Gout Management? A Feasibility Study.

OBJECTIVE: This feasibility study aimed to assess the acceptability of using smartphone notifications to modify the medication beliefs of people with gout. We evaluated the feasibility and acceptability of a smartphone application using the Technology Acceptance Model. We explored adherence rate differences and outcomes between the intervention and control groups. METHODS: Fifty-two patients with gout who were prescribed allopurinol were randomly assigned to either active control (n = 24) or intervention group (n = 28). Over 3 months, both groups used the study app on their smartphones. The active control group received notifications about general health advice, whereas the intervention group received adherence-targeted notifications. The feasibility and acceptability of the smartphone app was measured through semistructured interviews. Adherence rate was assessed through serum urate levels and missed doses at 3 timepoints: baseline, 3 months (post intervention), and 6 months (follow-up). RESULTS: The smartphone app demonstrated high feasibility, with strong participant retention and compliance. The participants expressed high levels of satisfaction with the app's user-friendliness and content, highlighting its acceptability. Both groups showed a significant reduction in missed doses over time (P < 0.05), but no significant differences in serum urate levels were found between the groups. Patients who received adherence-targeted notifications reported finding it more convenient to take allopurinol and expressed higher overall treatment satisfaction throughout the study. CONCLUSION: Adherence-targeted notifications have the potential to be an effective and scalable approach to supporting medication adherence in patients with gout. Further research is needed with larger samples to refine the components of the intervention and explore its optimal implementation.

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.

'People still want a face and that's where we can fill in': a qualitative study of community pharmacists' experiences of providing healthcare advice about preconception and pregnancy.

OBJECTIVES: This study aimed to explore community pharmacists' practices and attitudes towards the provision of healthcare advice regarding preconception and pregnancy. METHODS: A qualitative focus group study was conducted virtually with community pharmacists around urban areas of London in October 2021. A topic guide was utilised to cover pharmacy practice, barriers and confidence in counselling women, education and training and thoughts on how to improve preconception and pregnancy health services. Focus groups were transcribed and analysed using thematic analysis. KEY FINDINGS: Eleven community pharmacists participated. Three themes were identified: 'Community Driven Needs'; 'Needs of Community Pharmacists'; 'Shared Needs and Understanding' which were related through a central organising concept of 'Unmet Needs in Pharmacy-led Preconception and Pregnancy Care'. Community pharmacists are frequently consulted by women before and during pregnancy, however, a discord was uncovered between current pharmacy practice and the needs of the community. A clear need was identified for the incorporation of risk minimisation counselling focusing on smoking, alcohol intake and drug use. Education and organisational factors were reported as challenges to providing advice. CONCLUSIONS: Community pharmacists can play a pivotal role in providing information and support to women before and during pregnancy. Our findings suggest integration of community pharmacy-led structured counselling may be a useful public health strategy to optimise pregnancy health. Our work highlights educational and organisational barriers which hinder the ability of pharmacists to promote preconception and pregnancy health. These must be addressed, and we provide recommendations for change to both policy and practice.

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.

Why Do Patients With Gout Not Take Allopurinol?

OBJECTIVE: The objectives of this study were to examine the reasons patients give for nonadherence to allopurinol and to examine differences in intentional nonadherence for patients who did and did not achieve serum urate (SU) levels at treatment target. METHODS: Sixty-nine men with gout attending rheumatology clinics, all prescribed allopurinol for ≥ 6 months, completed the Intentional Non-Adherence Scale (INAS). Differences in the types of intentional nonadherence were analyzed between those who did and did not achieve SU at treatment target (< 0.36 mmol/L, 6 mg/dL). RESULTS: The most frequently endorsed reasons for not taking their urate-lowering therapies (ULT) were because participants wanted to lead a normal life (23%) or think of themselves as a healthy person again (20%). Patients also reported not taking allopurinol as a way of testing if they really needed it (22%). Participants with SU above target endorsed significantly more INAS items as reasons for not taking their medication, had more medicine-related concerns, and were more likely to give Testing treatment as a reason for nonadherence. Participants who were younger, single, and non-New Zealand European also endorsed more reasons for not taking their allopurinol. CONCLUSION: The major reasons behind the patient's decision not to take allopurinol relate to the desire to lead a normal life and the strategy of testing the treatment to see if they could reduce the dose without getting symptoms. These results provide some potentially modifiable targets for adherence interventions and some recommendations to clinicians about how to reframe ULT for patients in order to improve adherence.

Community Pharmacist-Led Interventions to Improve Preconception and Pregnancy Health: A Systematic Review.

Background: Community pharmacist-led interventions are effective in improving health outcomes; however, their impact in improving preconception and pregnancy health is not clear. This study evaluated the effectiveness of community pharmacist-led interventions which aimed to improve health outcomes of preconception and pregnant women. Methods: A systematic review of the literature, consistent with PRISMA guidelines, was performed. Five electronic databases were searched up to February 2021. Results: Four studies, three in pregnant women and one in preconception women, were identified. The studies focused on improving micronutrient status and smoking cessation. The studies increased knowledge about, and use of, iron supplements, and improved iron status and smoking cessation rates in pregnant women, while improving knowledge regarding, and increasing the use of, preconception folic acid. The studies were ranked as weak to moderate quality. Conclusion: This review provides preliminary evidence for the potential benefit of community pharmacist-led interventions to improve the health of women before and during pregnancy.

Pre-operative prognostic factors for walking capacity after surgery for lumbar spinal stenosis: a systematic review.

BACKGROUND: Lumbar spinal stenosis (LSS) reduces walking and quality of life. It is the main indication for spinal surgery in older people yet 40% report walking disability post-operatively. Identifying the prognostic factors of post-operative walking capacity could aid clinical decision-making, guide rehabilitation and optimise health outcomes. OBJECTIVE: To synthesise the evidence for pre-operative mutable and immutable prognostic factors for post-operative walking in adults with LSS. DESIGN: Systematic review with narrative synthesis. METHODS: Electronic databases (CENTRAL, MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, OpenGrey) were searched for observational studies, evaluating factors associated with walking after surgery in adults receiving surgery for LSS from database inception to January 2020. Two reviewers independently evaluated studies for eligibility, extracted data and assessed risk of bias (Quality in Prognosis Studies). The Grading of Recommendations Assessment, Development and Evaluation method was used to determine level of evidence for each factor. RESULTS: 5526 studies were screened for eligibility. Thirty-four studies (20 cohorts, 9,973 participants, 26 high, 2 moderate, 6 low risk of bias) were included. Forty variables (12 mutable) were identified. There was moderate quality of evidence that pre-operative walking capacity was positively associated with post-operative walking capacity. The presence of spondylolisthesis and the severity of stenosis were not associated with post-operative walking capacity. All other factors investigated had low/very low level of evidence. CONCLUSION: Greater pre-operative walking is associated with greater post-operative walking capacity but not spondylolisthesis or severity of stenosis. Few studies have investigated mutable prognostic factors that could be potentially targeted to optimise surgical outcomes.

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.

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.

Evaluation of a personalised adherence intervention to improve photoprotection in adults with Xeroderma Pigmentosum (XP): protocol for the trial of XPAND.

INTRODUCTION: Poor adherence to photoprotection for people with xeroderma pigmentosum (XP) can be life-threatening. A randomised controlled trial (RCT) is being conducted to test the efficacy of a personalised adherence intervention (XPAND) to reduce the level of ultraviolet radiation (UVR) reaching the face, by improving photoprotection activities in adults with XP. METHODS AND ANALYSIS: A two-armed parallel groups RCT, where we randomised 24 patients with suboptimal adherence to either an intervention group who received XPAND in 2018 or a delayed intervention group who will receive XPAND in 2019. XPAND involves seven sessions, one-to-one with a facilitator, using behaviour change techniques and specially designed materials to target barriers to photoprotection. Following baseline assessment in April 2018 (t0) and intervention, the primary outcome will be measured across 21 consecutive days in June and July 2018 (t1). The primary outcome is the average daily UVR dose to the face (D-to-F), calculated by combining objective UVR exposure at the wrist (measured by a dosimeter) with face photoprotection activities recorded on a daily UVR protection diary. Secondary outcomes include average daily UVR D-to-F across 21 days in August (t2); psychosocial process variables measured by daily questions (t0, t1, t2) and self-report questionnaires (t0, t1, t2, December 2018 (t3)). Intervention cost-utility is assessed by service use and personal cost questionnaires (t0, t3). The delayed intervention control arm participants will complete three further assessments in April 2019 (t4) and June-July 2019 (t5), and December 2019 (t6) with dosimetry and UVR protection diary completed for 21 days at t4 and t5. A process evaluation will be conducted using mixed methods. ETHICS AND DISSEMINATION: Ethical approval has been received from West London & GTAC REC 17/LO/2110. Results will be disseminated in peer-reviewed journals and at conferences. This study tests a novel intervention, which, if successful, will be integrated into routine care. TRIAL REGISTRATION NUMBER: NCT03445052; Pre-results.

Psychological correlates of adherence to photoprotection in a rare disease: International survey of people with Xeroderma Pigmentosum.

OBJECTIVES: Xeroderma pigmentosum (XP) is an extremely rare genetic disorder (approximately 100 known cases in the United Kingdom), where DNA damage caused by ultraviolet radiation in daylight cannot be repaired. Adherence to photoprotection is essential to prevent skin cancer. We investigated psychological correlates of photoprotection in the XP population of Western Europe and the United States. DESIGN: Cross-sectional survey of adults with XP and caregivers of patients <16 years and those with cognitive impairment in the United Kingdom, Germany, the United States, and France (n = 156). METHODS: Photoprotection activities to protect the face and body when outdoors; avoidance of going outside during daylight hours; intention; self-efficacy; and social support were assessed using measures developed for this study. Participants answered questions about their illness representations of XP (BIPQ); beliefs about photoprotection (BMQ); automaticity (i.e., without conscious effort) (SRBAI); clinical and demographic characteristics. Ordinal logistic regressions determined factors associated with photoprotection. RESULTS: One third did not achieve optimal face photoprotection. After controlling for demographic and clinical factors, modifiable correlates of higher photoprotection included greater perceived control of XP, stronger beliefs in necessity and effectiveness of photoprotection, and higher intention. Avoidance of going outside was associated with greater photoprotection concerns, more serious illness consequences, and higher XP-related distress. Greater automaticity and higher self-efficacy were associated with better protection across all outcomes. CONCLUSIONS: Approximately half of all known cases across three European countries participated. Identified modifiable predictors of photoprotection may be targeted by interventions to reduce the incidence of skin cancers in the immediate future, when a treatment breakthrough is unlikely. Statement of contribution What is already known on this subject? Adherence to photoprotection in other populations at elevated risk from skin cancer is poor; however, the level in XP is unknown. Research across chronic conditions shows that adherence to treatment and lifestyle recommendations are influenced by illness perceptions, self-efficacy, and treatment beliefs. Studies on photoprotection conducted with the general population have found that perceived risk, perceptions of ultraviolet radiation (UVR) protection, self-efficacy for the behaviour, and automaticity (behaviours that are enacted with little conscious awareness) are related to better photoprotection. What does this study add? This is the first international survey to examine adherence and its correlates in people with XP (an under-researched group at very high risk of fatal skin cancer). Adherence varies and at least one third have potential for improvement. Perceptions about XP, photoprotection beliefs, self-efficacy, intention, and automaticity were associated with photoprotection of the face and body when outdoors. Negative emotional representations of XP were associated with avoidance of going outside during daylight hours.

The influence of perceived medical risks and psychosocial concerns on photoprotection behaviours among adults with xeroderma pigmentosum: a qualitative interview study in the UK.

BACKGROUND: A high level of photoprotection is required by people with xeroderma pigmentosum (XP), a rare skin disease, to reduce skin cancer and other risks. However poor photoprotection is thought to be widespread. PURPOSE: This study examines the influences on photoprotection behaviours in adults with XP. DESIGN: Inductive qualitative study with semistructured interviews. Analysis employed a framework approach. SETTING: National sample recruited through a specialist XP centre in London. METHODS: Semistructured interviews at patients' homes. All transcripts were coded and themes charted for each participant. Comparisons within and across cases identified common themes and differing motivations and approaches to photoprotection. Credibility of interpretations assessed through patient/carer input and clinic adherence scores. PARTICIPANTS: 25 adults (17 male, eight female) aged 16-63 years with diagnosed XP attending a specialist centre. 18 lived outside London. RESULTS: Awareness of risks of ultraviolet radiation (UVR) and photoprotection was high. However, photoprotection behaviours varied according to perceived necessity and concerns. Three behavioural responses were identified: (1) 'dominated' by planning and routines to achieve a high level of photoprotection with significant activity restrictions and psychosocial impacts. (2) 'resistant' to photoprotection with priority given to avoiding an illness identity and enjoying a normal life. (3) Photoprotection' integrated' with an individual's life with little psychosocial impact. These responses were influenced by illness, personal and contextual factors including age, life stage and social support. Only the 'integrated' group achieved an equilibrium between perceived 'necessity' and 'concerns'. CONCLUSIONS: The personal balance between perceived risks of UVR and social/psychological 'concerns' led to differing behavioural responses and contributes to an understanding of adaptation and normalisation in chronic illness. The study will also inform a series of individualised behavioural interventions to reduce measured UVR exposure among people with XP that are potentially applicable to other conditions with high risks of skin cancer.

Predicting adherence to therapy in rheumatoid arthritis, psoriatic arthritis or ankylosing spondylitis: a large cross-sectional study.

Objective: This analysis explored the association of treatment adherence with beliefs about medication, patient demographic and disease characteristics and medication types in rheumatoid arthritis (RA), psoriatic arthritis (PsA) or ankylosing spondylitis (AS) to develop adherence prediction models. Methods: The population was a subset from ALIGN, a multicountry, cross-sectional, self-administered survey study in adult patients (n=7328) with six immune-mediated inflammatory diseases who were routinely receiving systemic therapy. Instruments included Beliefs about Medicines Questionnaire (BMQ) and 4-item Morisky Medication Adherence Scale (MMAS-4©), which was used to define adherence. Results: A total of 3390 rheumatological patients were analysed (RA, n=1943; PsA, n=635; AS, n=812). Based on the strongest significant associations, the adherence prediction models included type of treatment, age, race (RA and AS) or disease duration (PsA) and medication beliefs (RA and PsA, BMQ-General Harm score; AS, BMQ-Specific Concerns score). The models had cross-validated areas under the receiver operating characteristic curve of 0.637 (RA), 0.641 (PsA) and 0.724 (AS). Predicted probabilities of full adherence (MMAS-4©=4) ranged from 5% to 96%. Adherence was highest for tumour necrosis factor inhibitors versus other treatments, older patients and those with low treatment harm beliefs or concerns. Adherence was higher in white patients with RA and AS and in patients with PsA with duration of disease <9 years. Conclusions: For the first time, simple medication adherence prediction models for patients with RA, PsA and AS are available, which may help identify patients at high risk of non-adherence to systemic therapies. Trial registration number: ACTRN12612000977875.

The Intentional Non-Adherence Scale (INAS): Initial development and validation.

OBJECTIVE: Adherence continues to be a major challenge in healthcare but there is still limited understanding of all the factors which can influence adherence behaviour. The present study was designed to identify a range of factors associated with intentional non-adherence and to see if they could be formed into a psychometrically sound scale. METHODS: Patients in three different clinical groups (Hypertension (N = 175); Oncology (N = 115); Gout (N = 196)) were given the new scale together with an adherence self-report and/or biomarker measure. Other, more established measures of factors known to be associated with adherence (BMQ, PAM, BIPQ), were also completed by patients for comparative and validation purposes. Exploratory Factor Analysis (EFA) was conducted to examine the factor structure of the new scale, and other statistical analyses were used for testing the psychometric properties of the new scale. RESULTS: EFA revealed two factors, which were labelled "Resisting illness" and "Testing treatment". Both scales were found to have good psychometric properties and explained unique variance in adherence in all three clinical groups. CONCLUSION: This new scale shows promise in describing and explaining some relatively novel factors underlying treatment non-adherence. Further work in different patient groups and clinical contexts is needed to confirm the factor structure and predictive value of these scales.

Understanding and predicting a complex behavior using n-of-1 methods: Photoprotection in xeroderma pigmentosum.

OBJECTIVE: Xeroderma pigmentosum (XP) is a very rare inherited disease; the most important aspect of clinical management is rigorous photoprotection from ultraviolet radiation. The aims of this novel study were to (a) understand and categorize the behavioral complexity and within-participant variability in photoprotection of the face in XP; (b) determine the predictors of photoprotection; and (c) identify individual needs for personalized interventions. METHOD: A total of 20 adults with XP completed an ecological momentary assessment (EMA) study over 50 days. Measures included an ultraviolet radiation diary of photoprotective behaviors used at each outdoor occasion (e.g., hat, face visor, sunscreen), and a mobile phone survey assessing self-reported protection (0-100), satisfaction with protection achieved, and predictive variables (e.g., motivation, effort, mood). Descriptive statistics for photoprotective behavior were computed, per person. When possible, individual dynamic logistic regression models were used to investigate the predictors of photoprotection, and correspondence between self-reported protection and behavior. RESULTS: Photoprotection (clothing and sunscreen) was suboptimal for most participants, and discrepancies between self-reported protection and behavior were identified. Modeling of photoprotection was conducted for six participants who went outside sufficient times and used varied protection. Different predictors were identified across participants. Weekend versus weekday, physical symptoms, stress, and feeling self-conscious were most frequently associated with protection. CONCLUSION: The findings support the need for intervention and have implications for the selection of individually tailored behavioral outcomes and intervention targets to improve photoprotection. The method of profiling multiple preventive behaviors using EMA may be of use in other rare conditions involving complex behaviors. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP: a protocol using observational mixed methods.

INTRODUCTION: Xeroderma pigmentosum (XP) is a rare genetic condition caused by defective nucleotide excision repair and characterised by skin cancer, ocular and neurological involvement. Stringent ultraviolet protection is the only way to prevent skin cancer. Despite the risks, some patients' photoprotection is poor, with a potentially devastating impact on their prognosis. The aim of this research is to identify disease-specific and psychosocial predictors of photoprotection behaviour and ultraviolet radiation (UVR) dose to the face. METHODS AND ANALYSIS: Mixed methods research based on 45 UK patients will involve qualitative interviews to identify individuals' experience of XP and the influences on their photoprotection behaviours and a cross-sectional quantitative survey to assess biopsychosocial correlates of these behaviours at baseline. This will be followed by objective measurement of UVR exposure for 21 days by wrist-worn dosimeter and daily recording of photoprotection behaviours and psychological variables for up to 50 days in the summer months. This novel methodology will enable UVR dose reaching the face to be calculated and analysed as a clinically relevant endpoint. A range of qualitative and quantitative analytical approaches will be used, reflecting the mixed methods (eg, cross-sectional qualitative interviews, n-of-1 studies). Framework analysis will be used to analyse the qualitative interviews; mixed-effects longitudinal models will be used to examine the association of clinical and psychosocial factors with the average daily UVR dose; dynamic logistic regression models will be used to investigate participant-specific psychosocial factors associated with photoprotection behaviours. ETHICS AND DISSEMINATION: This research has been approved by Camden and King's Cross Research Ethics Committee 15/LO/1395. The findings will be published in peer-reviewed journals and presented at national and international scientific conferences.

The PACE trial: It's time to broaden perceptions and move on.

The continued critiques of the PACE trial highlight how differing beliefs about the causes of chronic fatigue syndrome still influence how scientific studies in this area are accepted and evaluated. Causal beliefs about chronic fatigue syndrome and a modern version of Cartesian dualism are important in understanding the reaction to the PACE trial. The continued debate on the PACE trial seems to miss the fact that science is incremental. An unfortunate outcome of the PACE controversy and intimidation of researchers may be less research in the area. It is time to move on from criticism and collect more data on effective treatments.

Psychosocial wellbeing after living kidney donation - a longitudinal, prospective study.

Living kidney donation (LKD) has become routine practice across the world as the gold standard treatment of end-stage renal failure. Whilst the physical risks and harms of LKD surgery are well documented, relatively little is known about psychosocial outcomes. The aim of this study was to determine whether it was possible to quantify the psychosocial impact of LKD. A prospective longitudinal study of 93 living kidney donors was performed. Data were collected preoperatively, and 3 and 12 months after donation. Questionnaires included 11 validated psychosocial outcome measures and questions specific to LKD. Over time, there was no significant change in wellbeing, life satisfaction, self-esteem, social comparison, distress, depression, stress, anxiety or social support at 3 or 12 months. Despite this, questions specific to LKD indicated that donors felt positively about donation, with low levels of regret. This study provides a thorough assessment of psychosocial outcomes after LKD over the first year. Donors felt positive about LKD although there was no evidence of any significant change in psychosocial outcomes. Despite no measurable psychosocial benefit after living kidney donation, there was also no evidence of harm.