Patient prioritisation of impact items to develop the patient-reported impact of dermatological diseases (PRIDD) measure: European Delphi data.

BACKGROUND: The Global Research on the Impact of Dermatological Diseases (GRIDD) project is developing a patient-reported measure of the impact of dermatological disease on the patient's life called Patient Reported Impact of Dermatological Diseases (PRIDD). We developed a list of 263 potential impact items through a global qualitative interview study with 68 patients. We next conducted a Delphi study to seek consensus on which of these items to prioritize for inclusion in PRIDD. This study aims to explore patterns in demographic (e.g. country) and clinical variables (e.g. disease group) across the impacts ranked as most important to European dermatology patients. METHODS: We conducted a modified, two rounds Delphi study, testing the outcomes from the previous qualitative interview study. Adults (≥18 years) living with a dermatological disease were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) membership network. The survey consisted of a demographic questionnaire and 263 impact items and was available in six languages. Quantitative data were collected using ranking scales and analysed against a priori consensus criteria. Qualitative data were collected using free-text responses and a Framework Analysis was conducted. European data were obtained, and descriptive statistics, including multiple subgroup analyses, were performed. RESULTS: Out of 1154 participants, 441 Europeans representing 46 dermatological disease from 25 countries participated. The results produced a list of the top 20 impacts reported by European patients, with psychological impacts accounting for the greatest proportion. CONCLUSION: This study identified what patients consider to be the most important issues impacting their lives as a result of their dermatological disease. The data support previous evidence that patients experience profound psychological impacts and require psychological support. The findings can inform research, clinical practice and policy by indicating research questions and initiatives that are of most benefit to patients.

Exploring beliefs and distress in patients with facial palsies.

Evidence suggests that people with facial palsy may experience higher levels of distress, but the reasons for this are yet to be explored. This study aimed to explore people's illness beliefs, emotions, and behaviours in relation to their facial palsy and understand how distress is experienced by this group. Semi-structured individual interviews were conducted in the UK with adults with facial palsy. Interview questions were theoretically informed by the Common-Sense Self-Regulatory Model (CS-SRM). Thematic Analysis was conducted following a combined inductive and deductive approach. Twenty people with facial palsy participated (70% female; aged 29-84). Patient distress was accounted for by illness beliefs (symptoms, cause, control and treatment, timeline and consequences), and four additional themes (coping behaviours, social support, identity and health service provision). Experiences of anxiety, depression, and anger were widespread, and some participants experienced suicidal ideation. The burden of managing a long-term condition, altered self-perception, and social anxiety and isolation were key drivers of distress. There is a need for more integrated psychological support for patients with facial palsy. Within clinical consultations, patient's beliefs about facial palsy should be identified and systematically addressed. Service development should include appropriate referral to specialist psychological support via an established care pathway.

Thematic synthesis of the experiences of people with hidradenitis suppurativa: a systematic review.

BACKGROUND: Although hidradenitis suppurativa (HS) is known to affect quality of life, little summative knowledge exists on how HS impacts people living with the condition. OBJECTIVES: To synthesize experiences of people with HS within published qualitative research. METHODS: Searches on databases MEDLINE, PsycINFO, Embase and CINAHL were conducted on 17 April 2020. Two independent reviewers screened 5512 publications. Study quality was assessed using the National Institute for Health and Care Excellence quality appraisal checklist for qualitative studies. Thematic synthesis generated descriptive and analytic themes. RESULTS: Fourteen studies were included: four studies fulfilled most quality criteria, eight fulfilled some quality criteria, and two fulfilled few quality criteria. There were three final themes. (i) Putting the brakes on life. The physical, psychological and social consequences of HS resulted in people missing out on multiple life events. This could have a cumulative effect that influences the trajectory of someone's life. (ii) A stigmatized identity: concealed and revealed. People try to conceal their HS, visually and verbally, but this results in anticipation and fear of exposure. Social support and psychological acceptance helped people cope. Connecting to others with HS may have a specific role in preserving a positive self-identity. (iii) Falling through the cracks. Delayed diagnosis, misdiagnosis and lack of access to care were reported. People felt unheard and misunderstood by healthcare professionals, and healthcare interactions could enhance feelings of shame. CONCLUSIONS: There need to be improvements to clinical care to allow people with HS to live their life more fully.

Identification of Nymphal Instars of emMecidea/em emmajor/em Sailer and Mecidea minor Ruckes (Hemiptera: Heteroptera: Pentatomidae: Mecideini) from the Southwestern and Central United States.

The mecideine stink bug genus Mecidea is represented in America north of Mexico by three species: Mecidea major Sailor, Mecidea minor Ruckes, and Mecidea longula Stål. M. major and M. minor are widely distributed, occurring collectively from the Midwest to California. M. longula is known only from south Florida. The life histories of M. major and M. minor have been published including laboratory rearing from egg to adult and descriptions of the immature stages. However, no key has been developed for identification of the nymphs of these two species. Here, we present a key to the nymphs of these taxa to the species and instar levels.

Characteristics and outcomes of patients treated with apremilast in the real world: results from the APPRECIATE study.

BACKGROUND: APPRECIATE is a multinational, observational, retrospective, cross-sectional study in patients treated for psoriasis with apremilast, an oral phosphodiesterase 4 inhibitor. OBJECTIVES: To describe the characteristics of patients with psoriasis treated with apremilast in the clinical setting, to evaluate real-world outcomes of psoriasis treatment with apremilast and to better understand the perspectives of patients and physicians on treatment outcomes. METHODS: In six European countries, patients with chronic plaque psoriasis treated in clinical practice who could be contacted 6 (±1) months after apremilast initiation were enrolled. Patient characteristics, Dermatology Life Quality Index (DLQI) and Psoriasis Area and Severity Index (PASI) were obtained from medical records when available. Outcomes were evaluated using patient/physician questionnaires. RESULTS: In 480 patients at treatment initiation, mean [median; 95% confidence interval (CI)] PASI and DLQI scores were 12.5 (10.7; 11.6-13.4) and 13.4 (13.0; 11.4-14.2), respectively. At 6 (±1) months, 72.3% of patients (n = 347) continued apremilast treatment [discontinuations: lack of efficacy (13.5%), safety (11.7%), other (2.5%)]. In patients continuing treatment, 48.6% achieved a ≥75% reduction in PASI score; mean (95% CI) DLQI score was 5.7 (4.5-6.9), and mean (SD) Patient Benefit Index score was 2.8 (1.2). Physicians perceived clinical improvement in 75.6% of patients. Physicians' perspective on overall success of apremilast in meeting expectations correlated with patients' perception of treatment benefit (r = 0.691). Most commonly reported adverse events (>5% of patients) were diarrhoea, nausea and headache. CONCLUSIONS: Patients in APPRECIATE reported high disease burden despite more moderate skin involvement than those who enrolled in clinical trials of apremilast. Findings from APPRECIATE demonstrate the real-world value of apremilast for psoriasis treatment, as 7 of 10 patients continued therapy and showed notable improvement in disease severity and quality of life 6 (±1) months after apremilast initiation.

Psychological distress and coping following eye removal surgery.

Purpose: Psychological distress is reasonably well documented in people with facial disfigurement; however, in patients following eye removal surgery this has not been studied adequately. We hypothesised that lower distress levels would be associated with age and more adaptive coping strategies and that women would be more likely to report higher levels of distress and, therefore, use maladaptive coping strategies.Methods: This exploratory, cross-sectional study measured distress and coping in a sample of 56 post enucleation or evisceration patients. The Hospital Anxiety and Depression Scale and the Brief COPE measured distress and coping strategies.Results: In all, 25.5% and 10.9% of the sample had high levels of anxiety and depression, respectively. Significant associations were found between levels of distress, coping strategies and demographic variables (p < .05). There were significant differences in coping strategies between those with higher and lower levels of distress (p < .05). Females reported higher levels of anxiety (U = 202.5, p < .01) and depression (U = 229, p < .05) than males. Those who experienced enucleation or evisceration aged between 20 and 39 years reported significantly higher levels of depression compared with other age groups (U = 68.5, p < .01).Conclusions: There was a relatively low level of distress across the whole sample, but we found high levels of distress in a considerable proportion (18.18%) of participants. Participants' coping strategies and levels of distress were correlated. Females and participants aged between 20 and 39 years at time of eye removal were particularly vulnerable to distress.

Systematic relationship between Piezodorus guildinii and P. hybneri (Hemiptera: Heteroptera: Pentatomidae) and diagnostic characters to separate species.

The pentatomid genus Piezodorus presently contains about 12 species, all of which, with one exception [i.e., P. guildinii (Westwood)], have been reported from the Old World; P. guildinii apparently is limited to the New World. P. guildinii and P. hybneri (Gmelin) are similar in appearance and have been considered by some as sister species. The following characteristics we consider valid as diagnostic to separate the two species: for males, the shape and length of the vesica, differences in the anatomy of the conjunctival appendages and penial plate, and shape of the pygophore and parameres; and for females, differences in the anatomy of the first and second gonocoxae, ninth paratergites, and spermathecae.

Understanding the experience of sleep disturbance in psoriasis: a qualitative exploration using the Common-Sense Model of Self-Regulation.

BACKGROUND: Psoriasis is associated with significant morbidity, which negatively impacts upon quality of life. Sleep disturbance is reported to be common in patients with psoriasis and is associated with physical and psychological variables, although there is little published work in this area. Understanding sleep and the factors involved in its disturbance in psoriasis is a potentially important clinical area given the role of sleep in health and disease processes. OBJECTIVES: To explore the experience of sleep and sleep disturbance in psoriasis using the Common-Sense Model of Self-Regulation (CS-SRM). METHODS: Semistructured interviews were conducted with adults diagnosed with psoriasis. Interview questions were informed by the CS-SRM and previous research. Framework analysis was applied, including coding data into the CS-SRM dimensions and allowing additional inductive themes to emerge. RESULTS: Seventeen people with psoriasis (nine women, eight men; aged 19-86 years) were interviewed about sleep and sleep disturbance. Seven themes emerged, with six accounted for by the CS-SRM: characteristics of sleep disturbance, change in sleep patterns, thoughts about and symptoms of disease disturbing sleep, impact of poor sleep on daily life, attempts to improve sleep, a daily battle for control and a seventh relating to metacognitive processes. A reciprocal relationship between sleep and psoriasis was evident across themes with interactions between key sleep-related thoughts, emotions and behaviours. CONCLUSIONS: This study showed that sleep disturbance is a persistent concern for people with psoriasis; it has a 24-h impact, and interacts with the psychological and physical aspects of psoriasis. The distress and frustration felt when managing sleep disturbance perpetuated problematic sleep. Addressing this with currently available sleep treatments may therefore confer sleep and psoriasis-related benefits for people living with this condition.

Life history of Mecideamajor with descriptions of nymphal instars (Hemiptera, Heteroptera, Pentatomidae).

The life history of the stink bug Mecideamajor Sailer was studied in the southern half of New Mexico primarily from January 2005 through December 2007, and the nymphal instars were described. This species was active throughout the year as adults and nymphs, including the winter months. It occurred on various species of grasses during this time but primarily on Lehmann lovegrass, Eragrostislehmanniana Nees; grama grasses, Bouteloua spp.; and tobosagrass, Pleuraphismutica Buckley. The times of occurrence and abundance of the eggs, nymphs, and adults suggest this species is bivoltine with the possibility of a third generation. Instars can be distinguished by several morphological features including body size and presence and relative development of wing pads.

Does message framing affect changes in behavioural intentions in people with psoriasis? A randomized exploratory study examining health risk communication.

Message framing is important in health communication research to encourage behaviour change. Psoriasis, a long-term inflammatory skin condition, has additional comorbidities including high levels of anxiety and cardiovascular disease (CVD), making message framing particularly important. This experimental study aimed to: (1) identify whether health messages about psoriasis presented as either gain- or loss-framed were more effective for prompting changes in behavioural intentions (BI), (2) examine whether BI were driven by a desire to improve psoriasis or reduce CVD risk; (3) examine emotional reactions to message frame; and (4) examine predictors of BI. A two by two experiment examined the effects on BI of message frame (loss vs. gain) and message focus (psoriasis symptom reduction vs. CVD risk reduction). Participants with psoriasis (n = 217) were randomly allocated to one of four evidence-based health messages related to either smoking, alcohol, diet or physical activity, using an online questionnaire. BI was the primary outcome. Analysis of variance tests and hierarchical multiple regression analyses were conducted. A significant frame by focus interaction was found for BI to reduce alcohol intake (p = .023); loss-framed messages were more effective for CVD risk reduction information, whilst gain-framed messages were more effective for psoriasis symptom reduction information. Message framing effects were not found for BI for increased physical activity and improving diet. High CVD risk was a significant predictor  of increased BI for both alcohol reduction (ß = .290, p < .01) and increased physical activity (ß = -.231, p < .001). Message framing may be an important factor to consider depending on the health benefit emphasised (disease symptom reduction or CVD risk reduction) and patient-stated priorities. Condition-specific health messages in psoriasis populations may increase the likelihood of message effectiveness for alcohol reduction.

Developing a protocol to identify and prioritize research questions for psoriasis: a James Lind Alliance Priority Setting Partnership.

BACKGROUND: Psoriasis affects over two million people in the U.K. It has a significant psychological and social impact on individuals and an associated high economic cost to the U.K. National Health Service. There are many unanswered questions about psoriasis. OBJECTIVES: To develop a protocol in order to work with patients, families, carers and healthcare professionals to identify psoriasis uncertainties; to agree by consensus a top-10 list of psoriasis uncertainties; and to disseminate prioritized unanswered questions to researchers and funders so as to promote work that will focus on answering the uncertainties considered most important by stakeholders. METHODS: A Psoriasis Priority Setting Partnership has been established to gather psoriasis uncertainties following the transparent methodology advocated by the James Lind Alliance. A steering group composed of stakeholders has disseminated an initial survey to patients, families, carers and healthcare professionals to collect information on important psoriasis questions. After removing duplications, uncertainties will be collated and checked against existing evidence to determine whether any have already been resolved. 'True uncertainties' will be circulated to stakeholders in a second survey where they will be ranked by importance. At a final workshop, information will be distilled to generate a top-10 list of uncertainties. RESULTS: By following the protocol outlined in this paper a prioritized list of uncertainties will be identified that will be used to inform the psoriasis research agenda. CONCLUSIONS: Research targeted to address priorities identified by a range of stakeholders is imperative. This project will inform policy makers and research funding bodies about what really matters to these groups.

'New to me': changing patient understanding of psoriasis and identifying mechanisms of change. The Pso Well® patient materials mixed-methods feasibility study.

BACKGROUND: Psoriasis is an inflammatory long-term condition involving comorbidities, unhealthy lifestyle and significant life impact. Patients' understanding of psoriasis is limited and support lacking. The Common-Sense Model of Self-Regulation of Health and Illness emphasizes the role of illness and treatment beliefs on coping and self-management. New 'Pso Well® ' patient materials informed by the model, addressed psoriasis as a long-term condition, medication management and lifestyle behaviours. OBJECTIVES: To investigate whether Pso Well® materials (i) broaden understanding of psoriasis without increasing anxiety; (ii) are acceptable; and (iii) comprise features that appear to effect change. METHODS: The Revised Illness Perceptions Questionnaire (IPQ-R modified) and the Hospital Anxiety and Depression Scale (HADS) were administered in patients before and after intervention. Numerical rating scales assessed perceptions of change in understanding and anxiety resulting from engagement with the materials. Qualitative interviews explored acceptability and perceived 'active ingredients'. RESULTS: Fifty-five patients completed pre- and postintervention questionnaires (56% female; median age 59 years). Postintervention, a large effect size was indicated in two IPQ-R domains - illness coherence [t(55) = -3·48, P = 0·001 (two-tailed), η2  = 0·19] and personal control [t(55) = -2·98, P = 0·004 (two-tailed), η2  = 0·14] - and a medium effect in one, treatment control [t(55) = -2·08, P = 0·042 (two-tailed), η2  = 0·08]. HADS scores did not change. For numerical rating scales, 80% of participants reported increased understanding of psoriasis and none reported increased anxiety. Interviews with 19 patients indicated the materials were acceptable and usable. Factors reported to broaden understanding and promote engagement with self-management included linking of related disease aspects, personally relevant content and high-quality design. CONCLUSIONS: High-quality, theory-based psoriasis materials are acceptable to patients and can improve understanding and sense of control without increasing anxiety.

A cross-sectional survey of the nature and correlates of sleep disturbance in people with psoriasis.

BACKGROUND: Research suggests that sleep disturbance is common in psoriasis. While several sleep investigations have been conducted in psoriasis populations, many have methodological shortcomings, and no study has examined multiple dimensions of sleep-wake functioning. Moreover, research has yet to be performed comprehensively examining the range of physical and psychological factors that may affect sleep in people with psoriasis. OBJECTIVES: To characterize sleep disturbance using validated measures and to identify physical and psychological predictors of sleep quality in people with psoriasis. METHODS: An online survey was conducted (186 respondents; mean age 39·2 years) comprising validated measures assessing sleep [Pittsburgh Sleep; Quality Index (PSQI), Berlin Questionnaire, Pre-Sleep Arousal Scale]; chronotype (Morningness-Eveningness Questionnaire); mood (Hospital Anxiety and Depression Scale); itch (5-D Itch Scale); and psoriasis severity (Simplified Psoriasis Index). Group comparisons and regression analyses were used to examine predictors of poor sleep. RESULTS: The mean PSQI score was 9·2 ± 4·3, with 76·3% scoring above the threshold for poor sleep (≥ 6 on the PSQI) and 32·5% scoring 'positive' for probable obstructive sleep apnoea (OSA). Poor sleep and high likelihood of OSA were associated with more severe psoriasis (P < 0·05; η = 0·07; η2 = 0·005). Cognitive arousal (ß = 0·26, P = 0·001), itch (ß = 0·26, P < 0·001) and depression (ß = 0·24, P = 0·001) were the most robust predictors of poor sleep quality, which, together with somatic arousal (ß = 0·17, P = 0·022), accounted for 43% of variance in PSQI scores. CONCLUSIONS: Poor sleep is common in psoriasis and associated with psychological and physical factors. Rates of probable OSA are also high. Given the importance of restorative sleep for health, sleep complaints should receive greater clinical attention in the management of psoriasis.

Motivational interviewing-based training enhances clinicians' skills and knowledge in psoriasis: findings from the Pso Well® study.

BACKGROUND: Psoriasis is a common long-term, immune-mediated skin condition associated with behavioural factors (e.g. smoking, excess alcohol, obesity), which increase the risk of psoriasis onset, flares and comorbidities. Motivational interviewing (MI) is an evidence-based approach to health-related behaviour change that has been used successfully for patients with long-term conditions. This study assessed change in clinicians' MI skills and psoriasis knowledge following Psoriasis and Wellbeing (Pso Well® ) training. OBJECTIVES: To investigate whether the Pso Well training intervention improves clinicians' MI skills and knowledge about psoriasis-related comorbidities and risk factors; and to explore the acceptability and feasibility of the Pso Well training content, delivery and evaluation. METHODS: Clinicians attended the 1-day training programme focused on MI skills development in the context of psoriasis. MI skills were assessed pre- and post-training using the Behaviour Change Counselling Index. Knowledge about psoriasis-related comorbidity and risk factors was assessed with a novel 22-point measure developed for the study. Interviews with clinicians were analysed qualitatively to identify perceptions about the feasibility and acceptability of the training. RESULTS: Sixty-one clinicians completed the training (35 dermatology nurses, 23 dermatologists and three primary-care clinicians). Clinicians' MI skills (P < 0·001) and knowledge (P < 0·001) increased significantly post-training. Clinicians found the training valuable and relevant to psoriasis management. CONCLUSIONS: Attendance at the Pso Well training resulted in improvements in clinicians' knowledge and skills to manage psoriasis holistically. Clinicians deemed the training itself and the assessment procedures used both feasible and acceptable. Future research should investigate how this training may influence patient outcomes.

Nonadherence to psoriasis medication as an outcome of limited coping resources and conflicting goals: findings from a qualitative interview study with people with psoriasis.

BACKGROUND: Medication nonadherence is known to limit the effectiveness of available therapies; however, little is known specifically about medication adherence in people with psoriasis. Medicines self-management can feel onerous to those with dermatological conditions due to the nature of therapies prescribed and many individuals with psoriasis experience additional challenges such as physical and psychological comorbidities that place significant additional demands on individuals and may undermine adherence. Viewing nonadherence to medication as an outcome of limited personal coping resources and conflicting goals may help to explain medication nonadherence. OBJECTIVES: To explore individuals' perspectives of their psoriasis, medication and its management. METHODS: Twenty people with psoriasis were recruited from community samples in England and interviewed in-depth about their perceptions of their psoriasis, medication, and adherence to medication and self-management advice. Data were analysed using Framework Analysis. RESULTS: Participants reported that adhering to recommended treatment regimens conflicted with the management of the physical and psychological demands of living with psoriasis. Medication usage was viewed as a source of unresolved emotional distress and, for some, resulted in poor self-reported adherence, which included medication overuse, underuse and rejection of prescribed therapies. Perceived lack of engagement by clinicians with participants' self-management difficulties was viewed as an additional source of stress and distress. CONCLUSIONS: Adhering to medication in psoriasis can be an additional source of considerable emotional distress. We interpreted some episodes of nonadherence to psoriasis medication as rational attempts by individuals to minimize distress and to gain control over their life.

Early- and late-onset psoriasis: a cross-sectional clinical and immunocytochemical investigation.

BACKGROUND: There is accumulating evidence that early-onset psoriasis (EOP; presenting at or before 40 years of age) and late-onset psoriasis (LOP; presenting after 40 years of age) are different diseases. OBJECTIVES: We aimed to identify potential clinical and immunocytochemical differences between EOP and LOP. METHODS: We assessed immunocytochemistry in involved (PP) skin and uninvolved skin (n = 31) and demographics, psoriasis phenotype and psychological parameters (n = 340) in a cross-sectional study. RESULTS: Immunocytochemistry revealed (17 EOP, 14 LOP) a greater lymphocytic infiltrate in PP skin of EOP compared with LOP (P = 0·03), with a higher epidermal CD4+ : CD8+ ratio in LOP (1·3) compared with EOP (0·5) (P = 0·002). In 340 patients with psoriasis (278 EOP, 62 LOP), we found an association with a positive first or second degree family history of psoriasis [62·0% vs. 35·6%, adjusted odds ratio (OR) 8·32, 95% confidence interval (CI) 1·90-36·52] and a higher likelihood of having parents with EOP (adjusted OR 10·34, 95% CI 1·32-81·83) in the EOP group. Patients with EOP were more likely to have received biological therapy (13·3% EOP vs. 3·5% LOP, P = 0·042), while patients with LOP had a higher likelihood of having type 2 diabetes (adjusted OR 3·43, 95% CI 1·004-11·691) and autoimmune thyroiditis (adjusted OR 5·05, 95% CI 1·62-15·7). Patients with LOP also had greater anxiety than patients with EOP (mean Hospital Anxiety and Depression Scale-A score LOP 8 ± 5, EOP 5 ± 5; P = 0·006). CONCLUSIONS: Our findings provide further evidence for the difference between EOP and LOP.