Patients' Emotional Talk During Surveillance Cystoscopy for Non-muscle Invasive Bladder Cancer: Opportunities for Improving Communication.

OBJECTIVE: To examine the emotional communication that takes place between patients and health care providers during surveillance cystoscopy for non-muscle invasive bladder cancer (NMIBC). METHODS: Participants were 57 patients with a diagnosis of NMIBC attending for surveillance cystoscopy and 10 health care professionals (HCPs). Cystoscopy procedures were audio-recorded and transcribed verbatim. Two approaches to analysis of transcriptions were undertaken: (1) a template analysis and (2) Verona Coding Definitions of Emotional Sequences. RESULTS: Communication during cystoscopy generally comprised of "social/small talk," "results of the cystoscopy," and "providing instructions to the patient." Emotional talk was present in 41/57 consultations, with 129 emotional cues and concerns expressed by patients. Typically patients used hints to their emotions rather than stating explicit concerns. The majority (86%) of HCPs responses to the patient did not explicitly mention the patient's emotional concern or cue. Urology trainees were less likely than other HCPs to provide space for patients to explore their emotional concerns (t = -1.78, P <.05). CONCLUSION: Emotional communication was expressed by the majority of patients during cystoscopy. While all HCPs responded to patients' emotional communication, there were a number of missed opportunities to "pick-up" on patients' emotional cues and improve communication. Urologists need to be aware of the nuances of patients' emotional communication. Learning to identify and respond appropriately to emotional cues may improve communication with patients.

Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus.

BACKGROUND: Long-term sequelae are frequent and often disabling after epidermal necrolysis (Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN)). However, consensus on the modalities of management of these sequelae is lacking. OBJECTIVES: We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae. METHODS: Participants were sent a survey via the online tool "Survey Monkey" consisting of 54 statements organized into 8 topics: general recommendations, professionals involved, skin, oral mucosa and teeth, eyes, genital area, mental health, and allergy workup. Participants evaluated the level of appropriateness of each statement on a scale of 1 (extremely inappropriate) to 9 (extremely appropriate). Results were analyzed according to the RAND/UCLA Appropriateness Method. RESULTS: Fifty-two healthcare professionals participated. After the first round, a consensus was obtained for 100% of 54 initially proposed statements (disagreement index < 1). Among them, 50 statements were agreed upon as 'appropriate'; four statements were considered 'uncertain', and ultimately finally discarded. CONCLUSIONS: Our DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.

Healthcare Workers Beliefs about COVID-19; a Longitudinal, Mixed Methods Analysis.

The psychological impact of COVID-19 on Health Care Workers (HCWs) has been widely reported. Few studies have sought to examine HCWs personal models of COVID-19 utilising an established theoretical framework. We undertook a mixed methods study of beliefs about COVID-19 held by HCWs in the Mid-West and South of Ireland during the first and third waves of COVID-19. Template analysis was undertaken on the free text responses of 408 HCWs about their perceptions of the Cause of COVID-19 as assessed by the Brief Illness Perception Questionnaire (B-IPQ). Responses were re-examined in the same cohort for stability at 3 months follow-up (n = 100). This analytic template was subsequently examined in a new cohort (n = 253) of HCWs in the third wave. Female HCWs perceived greater emotional impact of COVID-19 than men (t = -4.31, df405, p < 0.01). Differences between occupational groups were evident in relation to Timeline (F4,401 = 3.47, p < 0.01), Treatment Control (F4,401 = 5.64, p < 0.001) and Concerns about COVID-19 (F4,401 = 3.68, p < 0.01). Administration staff believed that treatment would be significantly more helpful and that COVID-19 would last a shorter amount of time than medical/nursing staff and HSCP. However, administration staff were significantly more concerned than HSCP about COVID-19. Template analysis on 1059 responses to the Cause items of the B-IPQ identified ten higher order categories of perceived Cause of COVID-19. The top two Causes identified at both Waves were 'individual behavioural factors' and 'overseas travel'. This study has progressed our understanding of the models HCWs hold about COVID-19 over time, and has highlighted the utility of the template analysis approach in analysing free-text questionnaire data. We suggest that group and individual occupational identities of HCWs may be of importance in shaping HCWs responses to working through COVID-19.

A digital therapeutic for management of psychosocial aspects of psoriasis: A pre-post proof of concept study.

Background: Despite the psychosocial challenges of living with psoriasis many patients may not be able to access appropriate services to manage these challenges. Mobile health interventions may be helpful as a means to support patients in managing the impact of their condition. Objective: To conduct a preliminary examination of the feasibility and acceptability of a bespoke psoriasis-specific digital therapeutic solution (hereafter termed Allay), and to provide initial data on psychological changes pre-post. Methods: Phase one proof of concept pre-post study. Eligible patients were provided with Allay on their smartphone and assessed at baseline and at 12 weeks on a range of indices of well-being. Participants experiences on usability were collected by telephone interview at 4 weeks, 8 and 12 weeks. Results: Out of 66 participants recruited, 59 persisted in using Allay after the familiarisation phase, and 34 participants completed the 12 weeks programme. Participants showed a statistically significant improvement between induction and the end of the 12 weeks programme on Quality of life, Resilience, Perceptions of 'Overall impact' of psoriasis, and 'Emotional impact'. There was a significant change over the course of using Allay for symptoms of depression but not anxiety. While there was an interaction effect of changes in severity of psoriasis symptoms over the course of the study for dermatology-specific measures, there was no interaction between such changes in psoriasis symptoms and changes in depression, resilience or beliefs in emotional impact. Conclusions: Study results suggest that the use of Allay as an adjunct to medical management of psoriasis may help patients improve resilience, mood, beliefs about their condition and enhance their quality of life. Given that this is a phase one proof of concept study, and our rates of attrition further research is necessary to examine comparative effectiveness and stability of these findings.

Evidence of high levels of anxiety and depression in polymorphic light eruption and their association with clinical and demographic variables.

BACKGROUND: Polymorphic light eruption (PLE) is a prevalent photosensitivity condition associated with psychological distress. Objective To examine patients with PLE for evidence of anxiety and depression, the influence of demographic and clinical variables, and the coping strategies used. METHODS: In a cross-sectional design, patients with PLE (n = 145) who had attended a hospital dermatology department completed validated questionnaires assessing anxiety, depression, social anxiety, and coping strategies. Clinical variables examined were: (i) number of months of the year affected by PLE; (ii) facial involvement; (iii) time taken for the rash to resolve; and (iv) whether the patient ever used steroids for their condition. RESULTS: Participants ranged in age from 16-78 (mean 44 years, SD 11.9), 81% female, with a mean age at onset of PLE of 28 years. Evidence of high levels of anxiety and depression was found in PLE, with 22% and 8% of patients scoring as probable cases for anxiety and depression, respectively. Higher levels of anxiety were associated with younger age of onset of PLE (r = -0.25, P < 0.01) and facial involvement (t = 2.84, P < 0.01), and depression was also associated with facial involvement (t = 3.60, P < 0.01). Furthermore, higher levels of depression and anxiety were associated with the use of maladaptive coping strategies, and depression was found to be the principal predictor of quality of life. CONCLUSIONS: High levels of anxiety and depression occur in PLE. Clinicians should be alert to the potential need for psychological management, particularly in patients with facial involvement and a younger age of onset of PLE.

Alcohol consumption and psychological distress in patients with psoriasis.

BACKGROUND: Psoriasis has been associated with excessive alcohol consumption and psychological distress. OBJECTIVES: To investigate the level of alcohol use in a psoriasis population and to determine whether alcohol consumption is linked to psychological distress in patients with psoriasis. METHODS: Ninety-five patients with chronic plaque psoriasis completed validated questionnaires designed to assess psychological distress, current and past alcohol consumption and self-reported physical severity of psoriasis. RESULTS: Using different measures of alcohol consumption, between 17% and 30% of patients were classified as having difficulties with alcohol. Thirteen per cent and 18% of patients with psoriasis believed that they had a current or past drinking problem, respectively. There was a modest but significant association between levels of anxiety and depression and weekly alcohol consumption (r = 0.29, P < 0.01 and r = 0.24, P = 0.03, respectively). Those patients who believed that they had an alcohol problem had higher levels of anxiety (P = 0.03), depression (P < 0.01) and psoriasis-associated disability (P = 0.04). There was a modest but significant association between physical severity of psoriasis and weekly alcohol consumption (r = 0.27, P = 0.02). CONCLUSIONS: A significant minority of patients with psoriasis consumes excessive alcohol. Patients with psoriasis should be assessed for excessive alcohol use and appropriate interventions initiated. Further studies are required to investigate whether such interventions are effective in combating alcohol abuse and in improving the psychological and physical aspects of psoriasis.

Adherence to treatment in patients with psoriasis.

Non-adherence to medication is a chronic problem that impacts on healthcare professionals and patients alike. In psoriasis, a condition that presents patients with frequent and disabling physical, psychological and social effects, studies consistently suggest that up to 40% of patients do not use their medication as directed. Thus it is probable that poor adherence contaminates the clinical picture of response effectiveness in everyday practice. This educational paper reviews research that investigates adherence to medication in patients with psoriasis. It provides an overview of contributing factors and mediating variables. It is proposed that three specific facets appear to optimize patient adherence: an effective doctor-patient relationship; optimism with the treatment prescribed; and a limited 'nuisance' value of treatment in terms of side-effects and hassle of use. Various strategies to address adherence are suggested and it is argued that in order to enhance our understanding of adherence in patients with psoriasis, there needs to be an increasing focus on patients' beliefs about their condition and its management.

Response of the hypothalamic-pituitary-adrenal axis to psychological stress in patients with psoriasis.

BACKGROUND: Psoriasis may, in some patients, be triggered and/or exacerbated by stress. OBJECTIVES: As activation of the hypothalamic-pituitary-adrenal (HPA) axis is critical to a successful stress response we investigated this in patients with psoriasis. METHODS: Forty patients with chronic plaque psoriasis and 40 age-matched normal controls experienced three randomly presented acute psychological stressors (cognitive, emotional and social). Serial serum cortisol, pulse rate and blood pressure assessments were undertaken at baseline and following each of the stressors. Salivary cortisol samples were collected at 09.00 h on the day of testing. RESULTS: In control subjects there was a significant (r = 0.38; P < 0.05) correlation between pulse rate and serum cortisol level following the social performance stressor; this was not evident in the psoriasis group (r = 0.07; not significant). Patients who believed that their psoriasis was highly stress responsive had significantly lower salivary cortisol levels at baseline (P < 0.01) and lower serum cortisol levels following the social performance stressor (P = 0.016) than patients with nonstress-responsive disease who believed that stress had no impact. In contrast, there was no difference between the groups for change in pulse rate poststressor. CONCLUSIONS: This study shows that patients with psoriasis, and in particular those whose disease appears to be stress responsive, exhibit an altered HPA response to acute social stress. The implication is that such patients may perhaps be primed to flares of their psoriasis. Whether this is genetically predetermined and/or a consequence of the distress of living with psoriasis remains to be determined.

Successful treatment of psoriasis improves psoriasis-specific but not more general aspects of patients' well-being.

BACKGROUND: Psoriasis has a detrimental effect on patients' quality of life. However, there is a relative dearth of information on which aspects of a patient's well-being are affected by successful treatment. OBJECTIVES: To investigate whether, and to what extent, improvement in the clinical severity of psoriasis induced by photochemotherapy with psoralen plus ultraviolet A (PUVA) translates into meaningful changes in beliefs about psoriasis, coping, stress, distress or disability. METHODS: In a prospective study, 72 patients were assessed before PUVA therapy and again when they had achieved clearance of their psoriasis. RESULTS: Patients demonstrated significant reductions in psoriasis-related disability, psoriasis-related stress or daily hassles and in the frequency of psoriasis-related symptoms. By comparison, there were no significant differences in levels of anxiety, depression or worrying. Similarly, patients' perceptions about cure, potential chronicity, causes, consequences and coping also remained unchanged. CONCLUSIONS: These results suggest that while clearance of psoriasis produces a significant reduction in factors specific to psoriasis (disability and stress), it does not impact upon psychological distress, on patients' beliefs about psoriasis or on coping. This observation highlights the complex features of patients' psychological experience of psoriasis and may provide further impetus for integration of psychological interventions into standard care protocols.

Detection of psychological distress in patients with psoriasis: low consensus between dermatologist and patient.

BACKGROUND: Researchers have indicated that 30-40% of patients with psoriasis suffer significant psychological distress. For the appropriate clinical management of the patient with psoriasis it is important that dermatologists are able to recognize this distress. OBJECTIVES: To examine the level of agreement between dermatologists and patients with psoriasis as to the presence of clinically significant psychological distress. METHODS: Forty-three consultations between dermatologists and patients with psoriasis were assessed. Following the consultation two assessments were undertaken: the patients completed measures of anxiety and depression, and the consulting dermatologists recorded whether they believed the patient to be psychologically distressed and, if so, their subsequent action. At the end of the study, all dermatologists who participated completed the Jefferson Scale of Physician Empathy. RESULTS: Self-report questionnaires indicated that 37% and 12% of patients were identified as probable clinical cases for anxiety and depression, respectively. In general, the level of agreement between patient rating and dermatologist rating as to the presence of anxiety or depression was low (kappa statistic 0.24 and 0.26, respectively). Dermatologist empathy level did not appear to influence identification of distress. In only 39% of cases were the psychological difficulties of significantly distressed patients raised by dermatologists during the consultation. CONCLUSIONS: Agreement between dermatologists and patients with psoriasis regarding the presence of clinically significant psychological distress was low. When dermatologists did identify patients as being anxious and/or depressed, in the majority of cases no further action was taken following the consultation. This study highlights a number of areas for improvement in the psychological management of patients with psoriasis.

Patients' strategies for coping with psoriasis.

There is a paucity of research on the types of strategies that patients with psoriasis use to cope with the impact of their condition. By contrast there are a number of studies assessing coping by patients with nondermatological disease. The purpose of the present study was to examine strategies for coping in patients with psoriasis and investigate whether they differ as compared with normal controls and patients with other major medical diseases. Two hundred and fifty patients with a definite dermatologist-confirmed diagnosis of psoriasis participated in this cross-sectional study. Patients were assessed by psoriasis area severity index and all patients completed the COPE questionnaire and psoriasis disability index. Sixty healthy, control participants completed the COPE questionnaire for comparison purposes. Mean COPE scores from patients with psoriasis were also compared with published COPE scores from other medical diseases. The coping strategies most frequently used by patients with psoriasis were acceptance, planning, active coping and positive reinterpretation. The least frequently used were alcohol and nonprescription drugs, religion, and denial of their condition. Despite reporting greater disability, patients with severe psoriasis did not significantly differ from those with mild/moderate disease in their use of particular forms of coping strategies. Patients with psoriasis as a whole tended to use significantly less active coping strategies, planning, positive reinterpretation and humour when compared with normal controls. There was marked similarity in the frequency of use of particular coping strategies between patients with psoriasis and patients with other medical conditions. Similar types of coping strategies are utilized by patients regardless of whether their illness is visible (psoriasis) invisible (chronic fatigue syndrome, atrial fibrillation), has significant physical impairment (spinal cord injury), or is life-threatening (cancer, and myocardial infarction). It appears that illness brings with it a generic form of coping that may require shaping to fit the individual demands of diseases such as psoriasis.

A cognitive-behavioural symptom management programme as an adjunct in psoriasis therapy.

BACKGROUND: Patients with psoriasis may experience significant psychological and social disabilities. Stress or distress are proposed aggravators of the disease process in psoriasis. Preliminary studies to date have suggested that adjunctive psychological therapies may be effective in the clinical management of psoriasis. OBJECTIVES: To examine whether a 6-week multidisciplinary management approach, the Psoriasis Symptom Management Programme (PSMP) for patients with psoriasis improves clinical severity of psoriasis and its associated psychological distress and disability. METHODS: In a case-control study, patients with psoriasis attending an out-patient psoriasis specialty clinic chose to receive standard psoriasis treatment alone (n = 53) or to enter the PSMP as an adjunct to standard therapy (n = 40). They were assessed at baseline, at the end of the 6-week PSMP and after 6 months follow-up. RESULTS: As compared with standard treatment alone, analysis of covariance indicated that participation in the PSMP resulted in a greater reduction in clinical severity of psoriasis (P = 0.001), anxiety (P = 0.001), depression (P = 0.001), psoriasis-related stress (P = 0.001) and disability (P = 0.04) at 6 weeks and 6 months follow-up. CONCLUSIONS: The management of the physical aspects of psoriasis and its psychological effects are significantly improved for patients who opt for a 6-week integrated multidisciplinary approach. Furthermore, the techniques learnt by participation in the PSMP facilitate continued control of psoriasis for at least 6 months.

The contribution of perceptions of stigmatisation to disability in patients with psoriasis.

OBJECTIVE: The aim of the present study was to assess the significance of general and psoriasis specific psychological variables in patients with psoriasis and to examine the relative importance of disease status and these psychological variables in predicting psoriasis-related disability. METHOD: A total of 115 patients with psoriasis underwent clinical assessment and completed a number of psychological and psoriasis specific questionnaires. RESULTS: High levels of self-reported distress were identified with 43% and 10% of patients scoring as probable cases on the Hospital Anxiety and Depression Scale (HADS) subscales of anxiety (mean 9.3+/-4.9) and depression (mean 4.8+/-3.7), respectively. Multiple regression analysis indicated that clinical severity of psoriasis and anatomical area of involvement had no impact on psychological distress and disability. Perceptions of stigmatisation were significantly related to both psychological distress and degree of disability (P's<.001) and accounted for a significant amount of the variance in disability over and above general psychological distress (F change=11.03; P<.001). CONCLUSION: Psychological factors were much stronger determinants of disability in patients with psoriasis than disease severity, location or duration. This has important implications in relation to the clinical management of psoriasis.

The Salford Psoriasis Index: an holistic measure of psoriasis severity.

We have developed, tested and validated a new scoring system for psoriasis: the Salford Psoriasis Index (SPI). The SPI incorporates the current clinical extent of psoriasis based on the Psoriasis Area and Severity Index (PASI), a score indicating psychosocial disability, and past severity based on treatment history. The resultant three-figure SPI (signs, psychosocial disability, interventions) is a similar paradigm to the TNM (tumour, nodes, metastasis) classification used for cancer staging. The first figure transforms the PASI into a number from 0 to 10 reflecting extent of psoriasis. The second assesses the psychosocial impact of psoriasis on each patient using a 0-10 visual analogue scale. The third figure reflects historical severity of disease as judged by the need for systemic treatment, admission to hospital and number of episodes of erythroderma. The SPI was prospectively employed in assessing 150 consecutive patients with psoriasis. Furthermore, in a separate cohort of 100 patients we tested the Psychosocial Impact Score against a recognized self-report psoriasis-specific measure, the Psoriasis Disability Index. There was a strong correlation between the two (r = 0.59, P < 0.001). However, the Psychosocial Impact Score correlated poorly with clinical extent scores such as the PASI (r = 0.28, P < 0.05) and the Self-administered PASI in 72 patients tested (r = 0.19, P = 0.1). There was a high correlation between all six observers in 20 patients for both PASI (r = 0.71; 95% confidence interval, CI 0.51-0.86) and the Extent Score (r = 0.70; 95% CI 0. 56-0.89). We believe that the SPI will be more relevant to real-life categorization of psoriasis severity in that it takes an holistic approach based not only on physician assessment but also psychological disability and treatment resistance.

Patients with psoriasis and their compliance with medication.

BACKGROUND: Poor compliance with treatment advice in chronic conditions, such as psoriasis, represents a major challenge to health care professionals. Previous research suggests that the rate of noncompliance in chronic conditions may be as high as 40%. OBJECTIVE: This study was designed to examine self-reported compliance in patients with psoriasis. METHODS: We undertook an anonymous postal survey sent to consecutive patients with psoriasis attending a tertiary psoriasis specialty clinic. RESULTS: Thirty-nine percent of participants reported that they did not comply with the treatment regimen recommended. The noncompliant group had a higher self-rated severity of psoriasis (t = -2.16, P =. 03), were younger (t = 3.28, P =.001), and had a younger age at onset (t = 2.35, P =.02) than those who were compliant. The noncompliant group reported that psoriasis had a greater impact on daily life (t = -2.23, P =.028), but general well-being was not significantly different from those who complied (t =.47, P = not significant). CONCLUSION: Patients who reported intentional noncompliance with treatment advice were more likely to believe that both psoriasis and its treatment interfered with their quality of life but not overall well-being. The impact of treatment on daily life highlights the importance of joint decision making in planning treatment.

Pain drawings in the assessment of nerve root compression: a comparative study with lumbar spine magnetic resonance imaging.

STUDY DESIGN: Prospective comparative study of pain drawings with findings on lumbar spine magnetic resonance imaging. OBJECTIVES: To assess the ability of the pain drawing to predict the presence of nerve root compression. SUMMARY OF BACKGROUND DATA: Most research work has concentrated on the ability of the pain drawing to act as a screening method for psychological distress with less work directed at the influence the anatomic abnormality has on the pain drawing. METHODS: One hundred thirty-four consecutive outpatients attending for lumbar magnetic resonance imaging in the investigation of back and leg pain completed pain drawings and psychological testing immediately before the examination. The pain drawing was analyzed by previously reported criteria, and the magnetic resonance imaging was assessed independently for the presence of nerve compression by three radiologists. Multivariate stepwise discriminant analysis was used to identify patients with nerve compression on the basis of their pain drawing. RESULTS: Nerve compression was predicted by numbness in the anterolateral aspect of the foot. There was considerable overlap in the appearances of the pain drawings between patients with and without nerve compression, and the pain drawing correctly classified only 58% of patients with nerve compression. CONCLUSIONS: The pain drawing is not a good predictor of nerve compression on magnetic resonance imaging in a group of patients investigated for back and leg pain. It should be interpreted with caution and in light of the full clinical picture.