One or many labels? a longitudinal qualitative study of patients' journey to diagnosis at a specialist NHS Postural Tachycardia Syndrome (PoTS) clinic.

OBJECTIVES: Postural Tachycardia Syndrome (PoTS) is a poorly understood syndrome of multiple disabling symptoms. This study explored the process of seeking a diagnosis of PoTS. Analysis focused on changes before and after participants' first appointment with a national PoTS clinic, and explored whether a diagnosis is beneficial in the context of multiple co-occurring conditions and an absence of licenced treatments. DESIGN: A longitudinal, qualitative study. METHODS: Participants (n = 15) in this nested qualitative study were recruited from a larger study of people who had been newly referred to a National specialist NHS Cardiology PoTS service. Semi-structured interviews were conducted remotely before, and 6 months after their first appointment with the clinic. Data was analysed longitudinally and inductively using Reflexive Thematic Analysis. RESULTS: Three overarching themes were identified: "Slowly moving forward and finding positive gains", "Needing more pieces of the puzzle to see the bigger picture", and "The value and impact of investigations". Findings suggested that not much had changed in the 6 months between interviews. Participants were moving forward in terms of diagnoses, treatment and adjustment following their appointment, but many were still seeking further clarity and possible diagnoses. Investigations, appointments, and new-found problems, continued to have a substantial impact over time. CONCLUSIONS: The journey to diagnosis for patients with suspected PoTS appeared to promote acceptance of self, and of limitations posed by symptoms. However, many participants continued their search for an explanation for every symptom experience, and this may become increasingly complex, the more labels that have been acquired. Lack of clarity contributed to ongoing difficulties for this patient group alongside fraught relations with health care professionals (HCPs). A more coherent, integrated approach which is communicated clearly to patients is recommended.

Do interventions for mood improve inflammatory biomarkers in inflammatory bowel disease?: a systematic review and meta-analysis.

BACKGROUND: Psychoneuroimmunological mechanisms and the gut-brain axis appear relevant to disease activity and progression in Inflammatory Bowel Disease (IBD). A recent review showed no effect of psychological therapies on self-reported disease activity in IBD. This meta-analysis aims to establish whether interventions targeting mood outcomes (e.g., depression, anxiety and stress) impact inflammation levels in IBD and possible moderators of these effects. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines were followed. We searched five electronic databases and included randomised controlled trials where interventions targeted mood and assessed inflammatory outcomes pre- and post-intervention in adults with IBD. Independent reviewers screened studies, extracted data, and assessed methodological quality. Data were pooled to estimate standardised mean differences (SMDs) with 95% Confidence Intervals (CIs). A random-effects robust variance estimation accounted for studies measuring multiple biomarkers. Intervention type, mood as a primary or secondary outcome, effect on mood outcomes and IBD subtype were investigated as treatment effect moderators. Where there were sufficient biomarkers, individual meta-analyses were run (Pre-registration PROSPERO: CRD42023389401). FINDINGS: 28 RCTs involving 1789 participants met inclusion criteria. Interventions demonstrated small, statistically significant effects on biomarkers (-0.35, 95% CI: -0.48, -0.22, p < 0.001) and medium effects on mood outcomes (-0.50, 95% CI: -0.73, -0.27, p < 0.001), without evidence of substantive heterogeneity or publication bias. Individual analyses showed small effects for improved faecal calprotectin (-0.19, 95% CI: -0.34, -0.03, p = 0.018) and C-Reactive Protein (-0.29, 95% CI: -0.47, -0.10, p = 0.002). Effect sizes were larger for psychological therapy interventions (compared with exercise or antidepressants) and when there was an effect (SMD ≥0.2) on mood. INTERPRETATION: Treatments which address mood outcomes have beneficial effects on generic inflammation as well as disease-specific biomarkers (faecal calprotectin and C-Reactive Protein). Psychological interventions and interventions with larger treatment effects on mood accentuated the effect on biomarkers. More research is required to understand the biological or behavioural mechanisms underlying this effect. FUNDING: The Medical Research Council and the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre.

Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of postural orthostatic tachycardia syndrome (POTS): An inductive approach.

OBJECTIVES: Postural orthostatic tachycardia syndrome (POTS) is a debilitating and under-recognized condition of the autonomic nervous system. This study applied Leventhal's Common-Sense Model of Illness Representations to explore the journey to a diagnosis of POTS and to understand its relevance to poorly understood conditions which have common comorbidities. DESIGN: An inductive qualitative approach was used to explore the processes by which patients formulate explanations and management of symptoms within the search for a diagnostic label and to investigate illness identity in the context of existing diagnoses or multimorbidity. METHODS: Participants (n = 29) for this nested qualitative study were recruited from a larger longitudinal study of people who had been newly referred to a specialist POTS service. Semi-structured interviews were conducted via video call. Three researchers coded and analysed data using Reflexive Thematic Analysis and elements of Grounded Theory. RESULTS: The analysis resulted in three overarching themes: 'Seeking physiological coherence and validation', 'Individual persistence', and 'Navigating the cumulative burden'. 'Accessibility and disparities of health care' was noted as a contextual factor. Receiving a POTS diagnosis was regarded by participants as providing legitimacy and increased access to treatment. Overall, delays in the diagnostic journey and the lack of a clear diagnosis impacted negatively on patients through increased uncertainty and a lack of clear guidance on how to manage symptoms. Findings also suggested there were great complexities in assigning symptoms to labels in the context of multimorbidity. CONCLUSIONS: Participants' stories highlighted the urgent need for better recognition of POTS so that the self-regulatory process can be initiated from the early stages of symptom detection.

Beliefs about antibiotics, perceptions of antimicrobial resistance, and antibiotic use: initial findings from a multi-country survey.

OBJECTIVES: To examine public beliefs about antibiotics, AMR, and knowledge of antibiotic use, and how these relate to self-reported antibiotic use. METHODS: Two hundred and fifty participants from 23 countries completed a cross-sectional, online survey assessing beliefs about antibiotics and AMR, knowledge of antibiotics, and antibiotic use. Descriptive statistics, Mann-Whitney U tests and Spearman's ρ correlations were used to understand relationships between outcomes. KEY FINDINGS: Respondents generally viewed antibiotics positively, with particularly strong beliefs regarding their benefit (M = 16.48 out of 20, SD = 2.62) and few concerns regarding their harm (M = 3.98 out of 10, SD = 1.82). Greater benefit beliefs about antibiotics were associated with fewer concerns about their overuse (P < .0001) and harm (P < .0001). Stronger perceived importance of AMR was associated with greater beliefs about the benefits of antibiotics (P = .006), greater concerns about their overuse (P = .009), and increased knowledge of appropriate use (P = .006). Those who reported inappropriately using their last antibiotics had greater concerns about overuse (P = .12) and less knowledge regarding appropriate use (P = .015), compared to those who did not. CONCLUSIONS: Generally, the public tends to view antibiotics as having strong benefits and have few concerns about their harm, which may have implications for inappropriate use. These initial findings highlight beliefs that could be targeted in messages to reduce inappropriate demand for antibiotics.

Validation of symptom measures in patients under investigation for postural orthostatic tachycardia syndrome (POTS): The Orthostatic Grading Scale (OGS) and the Symptom Screen for Small-fiber Polyneuropathy (SSS).

OBJECTIVES: Postural Orthostatic Tachycardia Syndrome (POTS) presents with a range of poorly delineated symptoms across several domains. There is an urgent need for standardized symptom reporting in POTS, but a lack of validated symptom burden instruments. Our aim was to evaluate the psychometric properties of two symptom burden measures: the Orthostatic Grading Scale (OGS) and the Symptom Screen for Small-Fiber Polyneuropathy (SSS), in patients under investigation for suspected POTS. DESIGN: Psychometric validation study. METHODS: Confirmatory factor analysis (CFA) tested the factor structure of the SSS and OGS completed by 149 patients under investigation for POTS. Scale reliability and validity were assessed. The uni-dimensionality of the SSS was assessed through principal component analysis (PCA). RESULTS: CFA of the OGS revealed that a 1-factor structure had adequate fit. CFA of the SSS revealed that a 5-factor structure had generally appropriate fit supporting the originally proposed 5 factors (1: Gastrointestinal, 2: Somatosensory, 3: Miscellaneous, 4: Microvascular, and 5: Urological). In addition, the SSS demonstrated sufficient uni-dimensionality in the PCA, warranting use of a single total score. Omega coefficients of both measures indicated satisfactory internal reliability (0.668-0.931). Correlations with related constructs (distress (K10 score), r = 0.317-0.404, p < 0.001) and heart rate indices (with the OGS, r = 0.211-0.294, p < 0.05) suggested sound convergent and divergent validity. CONCLUSIONS: Initial evidence suggests that the OGS and SSS have good psychometric properties for use in populations with suspected and confirmed POTS.

Not as Clear Online? Active Visualization of How PrEP Works in the Body Improves Knowledge But Doesn't Change Behavior.

Active visualization, the use of dynamic representation of internal processes, is associated with increased knowledge and adherence to ART among people living with HIV. The current pilot intervention study tested the effectiveness of an online visualization for HIV prevention among 146 at-risk youth. Youth were randomized to a standard PrEP briefing or an online visualization. PrEP knowledge, attitudes, and uptake were self-reported at baseline and 3-months. Knowledge of PrEP increased, but there were no changes in preferences or uptake. Active visualization delivered online may be a useful educational tool for PrEP but not for shifting youth's uptake.

Relational Dynamics of Treatment Behavior Among Individuals with Tuberculosis in High-Income Countries: A Scoping Review.

Although tuberculosis (TB) incidence has significantly declined in high-income, low-incidence (HILI) countries, challenges remain in managing TB in vulnerable populations who may struggle to stay on anti-TB treatment (ATT). Factors associated with non-adherence to ATT are well documented; however, adherence is often narrowly conceived as a fixed binary variable that places emphasis on individual agency and the act of taking medicines, rather than on the demands of being on treatment more broadly. Further, the mechanisms through which documented factors act upon the experience of being on treatment are poorly understood. Adopting a relational approach that emphasizes the embeddedness of individuals within dynamic social, structural, and health systems contexts, this scoping review aims to synthesize qualitative evidence on experiences of being on ATT and mechanisms through which socio-ecological factors influence adherence in HILI countries. Six electronic databases were searched for peer-reviewed literature published in English between January 1990 and May 2020. Additional studies were obtained by searching references of included studies. Narrative synthesis was used to analyze qualitative data extracted from included studies. Of 28 included studies, the majority (86%) reported on health systems factors, followed by personal characteristics (82%), structural influences (61%), social factors (57%), and treatment-related factors (50%). Included studies highlighted three points that underpin a relational approach to ATT behavior: 1) individual motivation and capacity to take ATT is dynamic and intertwined with, rather than separate from, social, health systems, and structural factors; 2) individuals' pre-existing experiences of health-seeking influence their views on treatment and their ability to commit to long-term regular medicine-taking; and 3) social, cultural, and political contexts play an important role in mediating how specific factors work to support or hinder ATT adherence behavior in different settings. Based on our analysis, we suggest that person-centered clinical management of tuberculosis should 1) acknowledge the ways in which ATT both disrupts and is managed within the everyday lives of individuals with TB; 2) appreciate that individuals' circumstances and the support and resources they can access may change over the course of treatment; and 3) display sensitivity towards context-specific social and cultural norms affecting individual and collective experiences of being on ATT.

"You have to change your whole life": A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom.

Maintaining adherence to treatment for tuberculosis (TB) is essential if the disease is to be eliminated. As part of formative research to develop an intervention to improve adherence, we documented the lived experiences of adults receiving anti-TB treatment (ATT) in three UK cities and examined how personal, social, and structural circumstances interacted to impact on individuals' adherence to treatment. Using a topic guide that explored social circumstances and experiences of TB care, we conducted in-depth interviews with 18 adults (six women) who were being or had been treated for TB (patients) and four adults (all women) who were caring for a friend, relative, or partner being treated for TB (caregivers). We analysed transcripts using an adapted framework method that classified factors affecting adherence as personal, social, structural, health systems, or treatment-related. Eleven of 18 patients were born outside the UK (in South, Central, and East Asia, and Eastern and Southern Africa); among the seven who were UK-born, four were Black, Asian, or Minority Ethnic and three were White British. TB and its treatment were often disruptive: in addition to debilitating symptoms and side effects of ATT, participants faced job insecurity, unstable housing, stigma, social isolation, worsening mental health, and damaged relationships. Those who had a strong support network, stable employment, a routine that could easily be adapted, a trusting relationship with their TB team, and clear understanding of the need for treatment reported finding it easier to adhere to ATT. Changes in circumstances sometimes had dramatic effects on an individual's ability to take ATT; participants described how the impact of certain acute events (e.g., the onset of side effects or fatigue, episodes of stigmatisation, loss of income) were amplified by their timing or through their interaction with other elements of the individual's life. We suggest that the dynamic and fluctuating nature of these factors necessitates comprehensive and regular review of needs and potential problems, conducted before and during ATT; this, coupled with supportive measures that consider (and seek to mitigate) the influence of social and structural factors, may help improve adherence.

Internalized and Anticipated Stigmatization in Patients With Gout.

OBJECTIVE: To investigate the relationship between stigma perception and demographic, clinical, and psychosocial variables. METHODS: A sample of 50 patients with gout and prescribed urate-lowering medication (84% were males, mean serum urate 0.34 mmol/l) completed questionnaires on internalized and anticipated stigma, demographics, clinical gout-related variables, and psychosocial variables (illness perceptions, illness-related disability, illness-related body satisfaction, intentional nonadherence). Serum urate level was obtained from the most recent blood test. RESULTS: In this sample, 26% experienced internalized stigma, 26% expected to be stigmatized by friends or family members, and 14% by health care workers. Univariate regression analyses showed that younger age, ethnicity other than New Zealand European, increased severity of gout pain, cognitive and emotional illness perceptions, greater illness-related disability, and increased intentional nonadherence to urate-lowering medication were associated with increased internalized and anticipated stigma. Younger age, emotional illness response, and intentional nonadherence were the only variables explaining incremental variance of the experience of anticipated stigma in a multivariate regression model. CONCLUSION: Internalized and anticipated illness-related stigma was reported by a subgroup of patients with gout. The experience of stigma is associated with younger age, a negative emotional illness response, and intentions to not adhere with a medical treatment.

Effects of Message Framing on Patients' Perceptions and Willingness to Change to a Biosimilar in a Hypothetical Drug Switch.

OBJECTIVE: Patients often hold negative perceptions toward biosimilars that can create barriers to their uptake. Physicians also report uncertainty in how best to explain biosimilars. The aim of this study was to measure the effect of differently framed explanations on patients' perceptions of and willingness to change to a biosimilar in a hypothetical drug switch. METHODS: Ninety-six patients with rheumatic diseases taking an originator biologic were randomized to receive 1 of 4 biosimilar explanations: positive framing with and without an analogy, and negative framing with and without an analogy. Willingness to switch to a biosimilar, perceptions about biosimilars, and the effectiveness of the explanation were measured after the information delivery. RESULTS: Positive framing led to more participants being willing to switch (67%) than negative framing (46%). Framing significantly predicted willingness to switch to a biosimilar, with participants in the positive framing group being 2.36 times more willing to switch (P = 0.041). The positive framing group also reported significantly greater perceived efficacy of biosimilars (P = 0.046) and thought the explanation was more convincing (P = 0.030). The analogy did not enhance willingness to switch or increase understanding (P > 0.05). CONCLUSION: Positive framing can improve perceptions of and willingness to switch to a biosimilar in patients currently taking biologic treatments.

Crystal Clear with Active Visualization: Understanding Medication Adherence Among Youth Living with HIV.

Adherence to antiretroviral therapy (ART) among youth remains low. We piloted an adapted active visualization device that demonstrates how ART works in the body. Youth living with HIV were randomized to: (1) standard care (n = 14) or the (2) adapted active visualization intervention (n = 14) and 71% of the sample (n = 19) were re-assessed on viral load, adherence behaviors, and illness perceptions 2.5 months later. Intervention youth had lower viral loads, reported less difficulty in adhering to ART, and more motivation and control over their HIV than standard care at follow-up. Active visualization may be an acceptable tool to address ART adherence among youth.

Using animated visualization to improve postoperative mobilization: A randomized controlled trial.

OBJECTIVE: Enhanced recovery after surgery (ERAS) programs fast-track recovery for surgical procedures, including colorectal and gynecological oncology surgery. Early mobilization is a postoperative ERAS module that can be self-managed by patients, but poor adherence is common. Visualization is increasingly being used to improve patient understanding and adherence to health behaviors. This study tested whether an animated visualization intervention could improve adherence to postoperative mobilization. METHOD: Ninety six colorectal and gynecological oncology surgery patients were randomized to intervention, active control, or standard care groups. Intervention participants saw an animated intervention on a computer tablet at Day 1 postsurgery. All participants wore fitness trackers from day of discharge to 7 days postdischarge, and completed psychological measures at baseline, Day 1 postsurgery, and 7 days postdischarge. RESULTS: Step count data was available for 57 colorectal surgery participants. A main effect of group demonstrated that intervention participants had a significantly higher average daily step count from discharge across the week following discharge (Madj = 2,294.60, 95% confidence interval [CI] [1,746.11, 2,744.89]) compared with control participants (Madj = 1,347.25, 95% CI [826.51, 1,871.20]; p = .05). At postsurgery, intervention participants reported significantly greater perceived quality of recovery and less difficulty in being mobile compared with control participants. There were no between-group differences in self-reported exercise or perceptions of surgery and recovery. CONCLUSION: This brief intervention appears effective in improving perceptions of early mobilization, and initial evidence suggests improvements in adherence to postsurgical mobilization. This intervention has high clinical applicability and could be incorporated into postoperative standard care. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Development and validation of the Health Visual Information Preference Scale.

OBJECTIVE: Patients are likely to have individual preferences for learning about health, which may influence their comprehension and utilization of health information. Some patients may prefer visual health information, which can make complex health information easier to understand. Aligning health information presentation with preferences may increase understanding and improve health outcomes, yet no scale measures preferences for visual health information. DESIGN: Two studies examined the psychometric properties of the Health Visual Information Preference Scale (Health VIPS), a new measure designed to assess preferences for visual health information. METHODS: In Study 1, 103 undergraduate students and 97 patients undergoing colorectal and gynaecological oncology surgery completed the Health VIPS. Exploratory factor analyses (EFA) were conducted for both samples. Internal consistency, test-retest reliability, and validity were assessed in the student sample. In Study 2, 196 outpatients completed the Health VIPS. Confirmatory factor analysis (CFA) was performed on this sample, in addition to measures of reliability and validity. RESULTS: In Study 1, EFA analysis suggested a two-factor structure. The Health VIPS demonstrated good internal consistency in both the student sample (α = .70-.80) and patient sample (α = .80), and good test-retest reliability in the student sample (r = .63, p < .001). Convergent validity and discriminant validity were also established. In Study 2, the CFA confirmed a two-factor structure is the best model fit for the Health VIPS. The Health VIPS also demonstrated discriminant and convergent validity. Scale item means in all samples were positively skewed, suggesting a general preference for visual health information. CONCLUSIONS: Initial evidence suggests the Health VIPS has good psychometric properties. This scale could identify patients who would benefit from additional visual aids when receiving health information. Statement of contribution What is already known on this subject? Poor comprehension of health information can lead to misunderstandings of illness and treatment, and potentially non-adherence. It is likely that patients have distinct preferences for how they would choose to receive health information, including information format. Visual health information is becoming more widely used to communicate information about health and illness to patients, although there is no measure to identify those who prefer this information format to standard written health materials. What does this study add? This study describes the first scale to assess preferences for visual health information. This scale could identify patients who would benefit from supplementary visual information in consultations.

The Use of a Brief, Active Visualisation Intervention to Improve Adherence to Antiretroviral Therapy in Non-adherent Patients in South Africa.

Non-adherence remains the largest cause of treatment failure to antiretroviral therapy (ART). Despite having the largest HIV pandemic, few successful adherence interventions have been conducted in South Africa. Active visualisation is a novel intervention approach that may help effectively communicate the need for consistent adherence to ART. The current study tested an active visualisation intervention in a sample of non-adherent patients. 111 patients failing on first- or second-line ART were recruited from two sites in the Western Cape, South Africa. Participants were randomly allocated to receive the intervention or standard care (including adherence counselling). The primary outcome was adherence as measured by plasma viral load (VL). There was a clinically significant difference (p = 0.06) in VL change scores between groups from baseline to follow-up, where the intervention had a greater decrease in log VL (Madj = - 1.92, CI [- 2.41, - 1.43), as compared to the control group (Madj = - 1.24, [- 1.76, - 0.73]). Participants in the intervention group were also significantly more likely to have a 0.5 log improvement in VL at follow-up ([Formula: see text] = 4.82, p = 0.028, ɸ = 0.28). This study provides initial evidence for the utility of this novel, brief intervention as an adjunct to standard adherence counselling, for improving adherence to ART.

The Impact of 3-D Models versus Animations on Perceptions of Osteoporosis and Treatment Motivation: A Randomised Trial.

BACKGROUND: Osteoporosis is a degenerative bone disorder that disproportionately affects older women worldwide. Raising awareness regarding osteoporosis within this demographic is significant for health promotion. Initial evidence suggests that visualisations of illness and treatment can improve illness perceptions, increase treatment motivations and even promote health behaviours. We are yet to understand whether different visualisation mediums vary in their impact on perceptions and motivations. PURPOSE: We investigated whether physical models or virtual animations had a greater impact on changing perceptions of osteoporosis and treatment motivation in an at-risk population of older women. METHODS: A total of 128 women aged 50 and over were randomly assigned to view a brief presentation about osteoporosis using either 3-D printed bone models or electronic tablet animations. Illness perceptions, medication beliefs and motivations were measured at baseline and post-presentation. Mixed ANOVAs were used to identify significant changes over time between groups. RESULTS: There were no significant interaction effects, revealing that neither medium had a greater impact on beliefs over time. Significant main effects of time revealed that from baseline to post-presentation, both mediums increased consequence beliefs, personal and treatment control, understanding of osteoporosis, motivations to take treatment if needed and medication necessity beliefs. Timeline beliefs and medication concerns decreased over time for both groups. CONCLUSIONS: Both 3-D models and animations of osteoporosis are equally effective in changing beliefs and treatment motivation in an at-risk population. Visualisation devices are brief, cost-effective, have high acceptability and have considerable clinical applicability to promote awareness and prevention.

I Can See Clearly Now: Using Active Visualisation to Improve Adherence to ART and PrEP.

Non-adherence remains a perplexing issue in HIV treatment. After decades of research supporting the efficacy of antiretroviral therapy, non-adherence to medication remains an important issue. For patients who are non-adherent to anti-retroviral therapy (ART), there appears to be a mismatch between their model of illness and the necessity for ART treatment. We propose that 'active visualisation' is a technique that could be utilised to improve understanding of treatment and subsequently adherence for both individuals living with HIV and those at-risk of infection. We discuss the theoretical background and highlight the initial evidence suggesting the utility of active visualisation. We then discuss how active visualisation could be utilised in a live demonstration to improve adherence to ART and pre-exposure prophylaxis medications.