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BackgroundRecombinant human growth hormone treatment can optimize growth potential; however, optimal outcomes are not always achieved for several reasons, including poor adherence. The overall objective of this project was to design a patient support program to maximize the chances of treatment success for people being treated with somatropin injection. An approach known as the behavior change wheel was used to enhance the development of the patient support program. The behavior change wheel provided a comprehensive framework to support the design of interventions. ObjectiveThe aim of this paper was to describe how the steps of the behavior change wheel were applied to the development of a patient support program for individuals with growth hormone deficiency undergoing treatment with somatropin. MethodsWe followed a series of steps that align to tenets of the behavior change wheel, namely, a narrative literature review to identify which behaviors needed to change and the potential drivers of and barriers to the behaviors, the selection of an intervention strategy and discrete behavior change techniques, and, finally, intervention specification. ResultsA recent systematic review identified a range of potentially modifiable factors found to have an influence on patient adherence to growth hormone treatment. Insights from the systematic review were used to guide the development of a patient support program. The final design of the patient support program consisted of four elements: (1) a personalization questionnaire to tailor support for each individual, (2) tailored reminder and support SMS text messages, (3) nurse-led phone calls, and (4) Easypod connect, an automated electronic autoinjector drug-delivery device with a transmitter and connection platform for Saizen (somatropin) that allows automatic recording, storage, and transmission of drug-usage data, thus providing insight into suboptimal adherence. ConclusionsThe patient support program that was designed is currently being piloted with patients to assess engagement with the program and determine its impact on patient outcomes. Results from the pilot will be used to further refine the program to ensure it meets user needs.

Background Biologic therapies have led to increasing numbers of patients with psoriasis who have clear or nearly clear skin. It is current practice to continue biologic therapy indefinitely in these patients, which contributes to a substantial long-term drug and healthcare burden. 'As needed' biologic therapy in psoriasis may address this; however, our understanding of patient and clinician perceptions of this strategy is limited. Objectives The aim of this mixed-methods study was to gain insight into the perspectives of both patients and clinicians regarding the acceptability of an 'as needed' approach to biologic therapy in psoriasis, including potential barriers and enablers to implementation in routine care. Methods We first conducted UK-wide online scoping surveys of patients with psoriasis and dermatology clinicians to explore their views on 'as needed' biologic therapy. Using topic guides informed by these survey findings, we then carried out qualitative focus groups with patients and clinicians. Themes were identified using reflexive thematic analysis. Results Of 67 patients and 27 clinicians completing the scoping surveys, 67% (43 of 64 patients) and 78% (21 of 27 clinicians) supported the use of 'as needed' biologic therapy, respectively. Respondents highlighted advantages such as a reduction in healthcare burden and greater ownership of care. Challenges included logistics of 'as needed' drug provision and potential risks of disease flare and drug immunogenicity. Focus groups comprised 15 patients with psoriasis [9 female patients (60%), average disease duration 32 years (range 9–64)] and 9 dermatology clinicians [8 female clinicians (89%), average dermatology experience 20 years (range 8–33)]. Both patients and clinicians felt that an 'as needed' treatment approach will deliver a reduction in treatment burden and present an opportunity for patient-led ownership of care. Both groups highlighted the importance of ensuring ongoing access to medication and discussing the potential impact of psoriasis recurrence. Patient preferences were influenced by their lived experiences, particularly previous difficulties with medication delivery logistics and establishing disease control. Clinician perspectives were informed by personal experience of their patients adapting their own dosing schedules. Clinicians highlighted the importance of targeted patient selection for an 'as needed' approach, ongoing disease monitoring, and prompt reaccess to medications upon psoriasis recurrence. Conclusions These data indicate that 'as needed' biologic therapy in psoriasis is acceptable for both patients and clinicians. Formal assessment of clinical effectiveness and cost-effectiveness is warranted to enable the real-world potential of this approach to be realized. [ABSTRACT FROM AUTHOR]

Background: When parents bring their child to appointments and then adhere to agreed speech and language therapy (SLT) recommendations, there is the potential to increase the intensity of the intervention, support generalization and improve outcomes. In SLT, however, little is known about factors that may promote attendance or adherence. Studies in other clinical areas such in medicine, psychology and physiotherapy have identified risk factors for non‐attendance or non‐adherence that are multifactorial and variable dependent on, for example, population and intervention. Aims: To identify rates of non‐attendance and non‐adherence, and to identify parent or child factors associated with parent involvement in intervention for children under 5 years of age receiving SLT. Methods: Parents completed questionnaires at two time points assessing the domains of parents' beliefs (problem perceptions, self‐efficacy), personal circumstances (socio‐demographics, family functioning), treatment experience and child factors. Predictors of parent attendance and adherence were identified through multiple regression analyses. Non‐attendance rates were identified via local health records and non‐adherence ascertained using a specific parent‐reported measure within the treatment experience domain. Results: Participants (N = 199) were predominantly mothers, and were ethnically and socio‐economically diverse, speaking a wide range of languages. Their children presented with a range of speech, language communication needs (SLCN). The rate of non‐attendance was 25% and the main predictors of non‐attendance were maternal age, education level and two factors within the parent beliefs domain. This model explained 40% of the variance in attendance. The rate of non‐adherence in this cohort was 26% with parental rating of the importance of a recommendation and self‐efficacy beliefs predicting adherence; this explained 56% of the variance in adherence to SLT recommendations at home. Conclusions & Implications: Our research has provided preliminary evidence of the influence of parents' beliefs, personal circumstances and treatment experiences on their involvement in their child's therapy. Speech and language therapists should consider factors impacting attendance and adherence to treatment and explore parental perceptions of their child's SLCN before embarking on an intervention, a foundation for collaborative practice. A possible limitation of this study is that the levels of attrition in our sample led to generally high measured rates of participation, which should be considered in future studies. Future research should explore adherence in treatments with varying doses, with different types of SLCN or interventions and in different settings. WHAT THIS PAPER ADDS: What is already known on the subject: It is acknowledged that parent involvement in their child's therapy, such as attending and adhering to recommendations, is important but little is known about the rates of involvement and what factors may be associated with attendance and adherence in SLT. Qualitative research has explored parental involvement suggesting that beliefs about an intervention may be pertinent. Extensive research in other clinical areas suggest multiple and varied factors are influential and further exploration of particular populations and interventions is necessary. What this paper adds to the existing knowledge: This study identified rates of parental non‐attendance and non‐adherence in a cohort of predominantly mothers of children under the age of 5 years. It is the first study to measure parent adherence in SLT and identify factors that are associated parental adherence to SLT recommendations. It adds to the small body of SLT specific research in understanding risk factors for non‐attendance. What are the potential or actual clinical implications of this work?: This study highlights the need for a speech and language therapist to consider and explore parents' perspectives of their child's SLCN as a part of achieving collaboration with a parent in order to achieve the best outcomes. It provides a foundation for further systematic research into parent involvement with the ultimate aim of enhancing outcomes for children with SLCN. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

During the COVID-19 pandemic, most data on adherence to health protective behaviours were collected via a self-report. We quantified the discrepancy between self-report data and discretely observed behaviour in a sample of university staff and students. We assessed the prevalence of cleaning hands, wearing a face-covering and maintaining distance from others. We also tested whether additional signage reminding people that these behaviours were mandatory improved observed adherence. Prevalence estimates based on self-report were higher than those based on observations. Signage was associated with improvements for observed behaviours (all χ2 ≥ 6.0, P  < 0.05). We caution that self-reported data can produce misleading adherence rates. [ABSTRACT FROM AUTHOR]

Background Nonadherence to immune-modifying therapy is a complex behaviour which, before the COVID-19 pandemic, was shown to be associated with mental health disorders in people with immune-mediated diseases. The COVID-19 pandemic has led to a rise in the global prevalence of anxiety and depression, and limited data exist on the association between mental health and nonadherence to immune-modifying therapy during the pandemic. Objectives To assess the extent of and reasons underlying nonadherence to systemic immune-modifying therapy during the COVID-19 pandemic in individuals with psoriasis, and the association between mental health and nonadherence. Methods Online self-report surveys (PsoProtect Me), including validated screens for anxiety and depression, were completed globally during the first year of the pandemic. We assessed the association between anxiety or depression and nonadherence to systemic immune-modifying therapy using binomial logistic regression, adjusting for potential cofounders (age, sex, ethnicity, comorbidity) and country of residence. Results Of 3980 participants from 77 countries, 1611 (40.5%) were prescribed a systemic immune-modifying therapy. Of these, 408 (25.3%) reported nonadherence during the pandemic, most commonly due to concerns about their immunity. In the unadjusted model, a positive anxiety screen was associated with nonadherence to systemic immune-modifying therapy [odds ratio (OR) 1.37, 95% confidence interval (CI) 1.07–1.76]. Specifically, anxiety was associated with nonadherence to targeted therapy (OR 1.41, 95% CI 1.01–1.96) but not standard systemic therapy (OR 1.16, 95% CI 0.81–1.67). In the adjusted model, although the directions of the effects remained, anxiety was not significantly associated with nonadherence to overall systemic (OR 1.20, 95% CI 0.92–1.56) or targeted (OR 1.33, 95% CI 0.94–1.89) immune-modifying therapy. A positive depression screen was not strongly associated with nonadherence to systemic immune-modifying therapy in the unadjusted (OR 1.22, 95% CI 0.94–1.57) or adjusted models (OR 1.14, 95% CI 0.87–1.49). Conclusions These data indicate substantial nonadherence to immune-modifying therapy in people with psoriasis during the pandemic, with attenuation of the association with mental health after adjusting for confounders. Future research in larger populations should further explore pandemic-specific drivers of treatment nonadherence. Clear communication of the reassuring findings from population-based research regarding immune-modifying therapy-associated adverse COVID-19 risks to people with psoriasis is essential, to optimize adherence and disease outcomes. [ABSTRACT FROM AUTHOR]