Evaluation of Quality of Life and Treatment Satisfaction in Newly Diagnosed Cutaneous T-Cell Lymphoma Patients.

BACKGROUND: Little is known about the impact of MF on quality of life (QoL) in newly diagnosed patients. OBJECTIVES: To describe the impact of the MF diagnosis on QoL, patient expectations, and treatment satisfaction over the first 6 months after diagnosis. METHODS: Outcomes of this prospective cohort study of newly diagnosed MF patients conducted between 2020 and 2022 at the Leiden University Medical Center included the Skindex-29, RAND-12 Health Survey, degree of itch, pain, and fatigue (Visual Analogue Scale (VAS)), patient expectations, and Client Satisfaction Questionnaire-8 (CSQ-8), measured at baseline and after six months. RESULTS: A total of 28 patients with MF were included. At baseline, 66% (n = 18) "strongly-totally" expected positive effects of the treatment. At the time of diagnosis, 28% of the patients (n = 8) were moderately to severely affected. There was no statistical change in the Skindex-29 score sum score (20 [10-34] vs. 20 [9-36]; p = 0.81) or in the other three subdomains, the RAND-12 scores, and the VAS itch, pain, and fatigue over time. Treatment satisfaction was high overall. CONCLUSION: Despite that the newly diagnosed MF patients anticipate a positive treatment effect, few improvements in QoL and symptom reduction were found. These data can be used for adequate expectation management and provide a rationale for further evaluation of treatment regimens in these patients.

Unveiling the hidden struggles: Exploring the profound impact of advanced stage cutaneous T-cell lymphoma on quality of life.

Erythrodermic mycosis fungoides and Sézary syndrome are chronic, relapsing-remitting diseases that greatly impacts patients' quality of life (QoL). Mogamulizumab-kpkc (Mogamulizumab) is a novel therapeutic agent for cutaneous T-cell lymphomas with a notable impact on progression-free survival. Qualitative assessment methods allow a broader exploration and greater insight in individual patient experience than quantitative studies. However, there is limited data on the impact of mogamulizumab on health-related QoL. To investigate the impact of erythrodermic cutaneous T-cell lymphoma (E-CTCL) on QoL and the effect of mogamulizumab on the QoL. Semi-structured interview were conducted with seven patients with E-CTCL that were receiving mogamulizumab treatment. Five major themes arose: Diagnosis and the diagnostic delay and uncertainty experienced by participants; Physical functioning due to the high symptom burden; Psychological and social functioning considering the significant impact on daily life; Treatment and the effect of mogamulizumab; and Support by family, friends and health professionals. Mogamulizumab therapy resulted in a significant decrease of symptoms. The small sample size should also be taken into account although data saturation was reached. This study gives a broad insight into the large impact of E-CTCL and the major consequences on the physical functioning as well as on the emotional/psychological and social well-being. Mogamulizumab appears to have a positive effect on symptoms.

Perceived Stigmatization among Dermatological Outpatients Compared with Controls: An Observational Multicentre Study in 17 European Countries.

Perceived stigmatization places a large psychosocial burden on patients with some skin conditions. Little is known about the experience of stigmatization across a wide range of skin diseases. This observational cross-sectional study aimed to quantify perceived stigmatization and identify its predictors among patients with a broad spectrum of skin diseases across 17 European countries. Self-report questionnaires assessing perceived stigmatization and its potential predictors were completed by 5,487 dermatology outpatients and 2,808 skin-healthy controls. Dermatological diagnosis, severity, and comorbidity were clinician-assessed. Patients experienced higher levels of perceived stigmatization than controls (p < 0.001, d = 0.26); patients with psoriasis, atopic dermatitis, alopecia, and bullous disorders were particularly affected. Multivariate regression analyses showed that perceived stigmatization was related to sociodemographic (lower age, male sex, being single), general health-related (higher body mass index, lower overall health), disease-related (higher clinician-assessed disease severity, presence of itch, longer disease duration), and psychological (greater distress, presence of suicidal ideation, greater body dysmorphic concerns, lower appearance satisfaction) variables. To conclude, perceived stigmatization is common in patients with skin diseases. Factors have been identified that will help clinicians and policymakers to target vulnerable patient groups, offer adequate patient management, and to ultimately develop evidence-based interventions.

Guided internet-based cognitive-behavioral therapy for patients with chronic pain: A meta-analytic review.

Background: Chronic pain has a large individual and societal burden. Previous reviews have shown that internet-based cognitive-behavioral therapy (iCBT) can support patients' pain coping. However, factors related to participant experience of iCBT and effective and safe iCBT delivery for chronic pain have not recently been summarized. Objective: The aim of this review was to give an overview of the efficacy of guided iCBT for chronic pain on psychological, physical, and impact on daily life outcomes, including factors that inform optimal delivery. Methods: Cochrane, Emcare, Web of Science, PubMed, PsycINFO, and Embase were systematically searched from inception to 11 February 2022. Randomized controlled trials on guided iCBTs for adults with chronic pain were included with a broad range of outcomes. Results: The search yielded 7406 studies of which 33 studies were included totaling 5133 participants. ICBT was more effective than passive control conditions for psychological (ES = 0.34-0.47), physical (ES = 0.26-0.29), and impact outcomes (ES = 0.38-0.41). ICBT was more effective than active control conditions for distress (ES = 0.40), pain acceptance (ES = 0.15), and pain interference after outlier removal (ES = 0.30). Longer treatments were associated with larger effects for anxiety and quality of life than shorter treatments. Mode of therapist contact (synchronous, asynchronous or a mix of both) was not related to differences in effect sizes in most outcomes. However, studies with mixed and synchronous contact modes had higher effects on pain self-efficacy than studies with asynchronous contact modes. Treatment satisfaction was high and adverse events were minor. Dropout was related to time, health, technical issues, and lack of computer skills. Conclusions: Guided iCBT is an effective and potentially safe treatment for chronic pain. Future research should more consistently report on iCBT safety and detail the effectiveness of individual treatment components to optimize iCBT in clinical practice.

Itch in patients with cutaneous T-cell lymphoma as a quality of life indicator.

Background: Cutaneous T-cell lymphoma (CTCL) is a chronic and progressive disease that has a major impact on quality of life (QoL). Objectives: To describe the impact of the different stages of disease in patients with classical mycosis fungoides, folliculotropic mycosis fungoides, and Sézary syndrome on generic- and dermatology-specific QoL and the relation with itch. Methods: A cross-sectional cohort study of patients with classical mycosis fungoides, folliculotropic mycosis fungoides, and Sézary syndrome was performed. Outcomes were the Skindex-29 score, Impact of Chronic Skin Disease on Daily Life which includes a visual analogue scale itch, and RAND-12. Results: One hundred six patients with CTCL were included. Compared to the total mycosis fungoides group, patients with Sézary syndrome had significantly worse Skindex-29 scores. Patients with advanced disease had statistically higher scores for the symptom (P = .007), functioning (P = .002), and total score (P = .012). The degree of itching was strongly correlated with the total Skindex-29 score (R = 0.713, P < .001). Conclusion: The different stages of CTCL can have a significant effect on multiple domains of generic- and dermatology-specific QoL. Itch was strongly correlated with QoL and therefore can be used as an overall QoL indicator. The effect on QoL, even in patients with early-stage disease, should not be underestimated.

Quality of Life in Cutaneous T-cell Lymphoma Patients Receiving Mogamulizumab: Important Factors to Consider.

BACKGROUND: Erythrodermic cutaneous T-cell lymphoma (E-CTCL) is associated with a poor prognosis and severe symptoms. OBJECTIVE: To establish insights into the quality of life (QoL), expectations, and treatment satisfaction of E-CTCL patients receiving mogamulizumab. METHODS: Outcomes of this prospective cohort study conducted between September 2020 and August 2021 at the Leiden University Medical Center included the dermatology-specific QoL (Skindex-29), health-related QoL (RAND-12), degree of itch, pain, and fatigue (Visual Analogue Scale), patient's expectations, and treatment satisfaction (Client Satisfaction Questionnaire-8 (CSQ-8)), measured at baseline and after six months. RESULTS: 13 patients with E-CTCL were included. Most patients anticipated a positive treatment effect on symptoms. Five patients (46%) improved one or more clinical categories regarding the symptoms domain, six (55%) regarding emotions, four (36%) regarding functioning, and four (36%) regarding the overall Skindex-29 score compared to baseline. The Mental Component Score clinically improved from 31 (IQR 29-51) at baseline to 38 (IQR 25-51). The median VAS itch improved significantly from baseline (8 (IQR 7-10) vs. 3 (IQR 1-8), p = 0.024). Most patients (n = 7) were "very satisfied" with their treatment. LIMITATIONS: There was a limited number of patients due to the rarity of the disease. CONCLUSION: In general, mogamulizumab has a favorable effect on biochemical- and dermatology-specific QoL and physical functioning in some patients, with high treatment satisfaction. Itch especially improved over time in most patients. The treatment satisfaction was generally high. Mogamulizumab seems to be an effective treatment that improves the QoL in patients with E-CTCL.

Tailored, Therapist-Guided Internet-Based Cognitive Behavioral Therapy Compared to Care as Usual for Patients With Rheumatoid Arthritis: Economic Evaluation of a Randomized Controlled Trial.

BACKGROUND: Internet-based cognitive behavioral therapy can aid patients with rheumatoid arthritis with elevated levels of distress to enhance their quality of life. However, implementation is currently lacking and there is little evidence available on the (cost-) effectiveness of different treatment strategies. OBJECTIVE: Cost-benefit ratios are necessary for informing stakeholders and motivating them to implement effective treatment strategies for improving health-related quality of life (HRQoL) of patients with rheumatoid arthritis. A cost-effectiveness study from a societal perspective was conducted alongside a randomized controlled trial on a tailored, therapist-guided internet-based cognitive behavioral therapy (ICBT) intervention for patients with rheumatoid arthritis with elevated levels of distress as an addition to care as usual (CAU). METHODS: Data were collected at baseline or preintervention, 6 months or postintervention, and every 3 months thereafter during the 1-year follow-up. Effects were measured in terms of quality-adjusted life years (QALYs) and costs from a societal perspective, including health care sector costs (health care use, medication, and intervention costs), patient travel costs for health care use, and costs associated with loss of labor. RESULTS: The intervention improved the quality of life compared with only CAU (Δ QALYs=0.059), but at a higher cost (Δ=€4211). However, this increased cost substantially reduced when medication costs were left out of the equation (Δ=€1863). Of all, 93% (930/1000) of the simulated incremental cost-effectiveness ratios were in the north-east quadrant, indicating a high probability that the intervention was effective in improving HRQoL, but at a greater monetary cost for society compared with only CAU. CONCLUSIONS: A tailored and guided ICBT intervention as an addition to CAU for patients with rheumatoid arthritis with elevated levels of distress was effective in improving quality of life. Consequently, implementation of ICBT into standard health care for patients with rheumatoid arthritis is recommended. However, further studies on cost reductions in this population are warranted. TRIAL REGISTRATION: Nederlands Trial Register NTR2100; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2100 (Archived by WebCite at http://www.webcitation.org/724t9pvr2).

Tailored Therapist-guided Internet-based Cognitive-behavioural Treatment for Psoriasis and Rheumatoid Arthritis: Two Case Reports.

Chronic somatic conditions, such as psoriasis, arthritis psoriatica and rheumatoid arthritis, have a large impact on patients' lives. Tailored therapist-guided internet-based cognitive-behavioural therapy (ICBT) has been shown to be effective in improving physical and psychological well-being in these patients. Two cases are presented here, in order to provide an in-depth illustration of the course and content of this novel treatment and to investigate the therapeutic alliance in an online treatment. After face-to-face intakes, both patients received therapist-guided ICBT tailored to their specific problems and treatment goals. The treatment resulted in improved physical and psychological well-being and these clinically significant improvements were maintained at 6-month follow-up. In addition, the therapeutic relationship was evaluated positively by both patients and increased further during treatment, indicating an adequate therapeutic working alliance in this online treatment. These case reports show that tailored ICBT may contribute to improved care for patients with chronic somatic conditions.

A tailored-guided internet-based cognitive-behavioral intervention for patients with rheumatoid arthritis as an adjunct to standard rheumatological care: results of a randomized controlled trial.

For patients with chronic pain conditions such as rheumatoid arthritis (RA), who experience elevated levels of distress, tailored-guided internet-based cognitive-behavioral treatment may be effective in improving psychological and physical functioning, and reducing the impact of RA on daily life. A multicenter, randomized controlled trial was conducted for RA patients with elevated levels of distress as assessed by a disease-specific measure. The control group (n = 71) received standard care and the intervention group (n = 62) additionally received an internet-based tailored cognitive-behavioral intervention. Main analyses were performed using a linear mixed model estimating differences between the intervention and control groups in scores of psychological functioning, physical functioning, and impact of RA on daily life at preassesment and postassessment, and at 3, 6, 9, and 12 months. Patients who received the internet-based intervention reported a larger improvement in psychological functioning compared with the control group, indicating less depressed mood (P < 0.001, d = 0.54), negative mood (P = 0.01, d = 0.38), and anxiety (P < 0.001, d = 0.48) during the course of the 1-year follow-up period. Regarding physical functioning, a trend was found for the intervention group reporting less fatigue than the control group (P = 0.06, d = 0.24), whereas no effect was found on pain. No effects were found for the impact of RA on daily life, except for the intervention group experiencing fewer role limitations due to emotional problems (P < 0.001, d = 0.53). Offering guided internet-based cognitive-behavioral therapy is a promising development to aid patients with psychological distress particularly in improving psychological functioning. Further research on adherence and specific intervention ingredients is warranted.

Itch Management: Psychotherapeutic Approach.

A relationship between the intensity of itch and psychological factors like stress, coping, anxiety, and depression has often been shown in patients with skin diseases. Moreover, the biopsychosocial model of chronic itch nicely summarizes how psychological factors can contribute to a worsening or improvement of chronic itch. Thus, it is reasonable to consider psychological interventions in the treatment of chronic itch. In this chapter we focus on itch-scratch problems as well as stress and anxiety/depression as itch-increasing factors. We summarize the evidence of psychological interventions which can reduce these triggering factors. Hereby, we differentiate between unimodal and multimodal interventions, and emphasize that not every single intervention might help for all patients, but that a comprehensive anamnesis is needed in order to determine whether one or several psychological factors trigger itch in the particular patient.

Implicit stigmatization-related biases in individuals with skin conditions and their significant others.

OBJECTIVE: Stigmatization is common in people with chronic skin conditions and may also affect their significant others (SOs). The fast and implicit processing of stigmatization-related stimuli has received little attention in these populations; however, such knowledge may offer indications for new treatment methods. This study aimed to investigate implicit processing of stigmatization-related stimuli in people with skin conditions and their SOs. METHOD: A modified Stroop task and 2 approach-avoidance tasks were administered to participants with chronic skin conditions (alopecia: n = 50 and psoriasis: n = 50); their significant others (alopecia SOs: n = 47 and psoriasis SOs: n = 50); and controls (n = 50). The aim was to examine attentional and behavioral biases toward disease-related and social threat-related stigmatization stimuli. RESULTS: An attentional bias to disease-related stimuli was found in participants with alopecia and their SOs, compared with controls (p < .001). This effect was not found for participants with psoriasis and their SOs. Increased behavioral avoidance of disgusted faces was found in participants with psoriasis and their SOs, compared with controls (p = .047). This effect was not found in participants with alopecia and their SOs. CONCLUSIONS: These results provide support for the idea that individuals with skin conditions and their SOs are characterized by a stigmatization-related stimulus bias regarding implicit cognitive and behavioral reactions, in comparison to healthy individuals. Furthermore, preliminary results suggest that these processes may differ across skin conditions, with people with psoriasis being more affected by social reactions (i.e., disgusted faces) and people with alopecia by disease-related cues possibly related to internalized self-stigma. (PsycINFO Database Record

Tailored Therapist-Guided Internet-Based Cognitive Behavioral Treatment for Psoriasis: A Randomized Controlled Trial.

OBJECTIVE: Patients with somatic conditions, such as psoriasis, frequently suffer from high burden of their disease in daily life and might benefit from internet-based cognitive behavioral therapy (ICBT) tailored to their adjustment problems. The aim of this multicenter randomized controlled trial was to examine the effects of therapist-guided, individually tailored ICBT in a clinical sample of patients with psoriasis. METHODS: A total of 131 patients with psoriasis, who were screened for a psychological risk profile, were randomized to either care as usual (CAU, n = 66) or ICBT in addition to CAU (n = 65). Participants filled out standardized self-report questionnaires assessing physical and psychological functioning and impact on daily activities at baseline, posttreatment assessment, and 6-month follow-up. RESULTS: In covariate-controlled linear mixed-model analyses, significantly larger improvements in ICBT compared to CAU were found in the primary outcomes physical functioning (p = 0.03, d = 0.36) and impact on daily activities (p = 0.04, d = 0.35), but not in psychological functioning (p = 0.32), up to 6 months after treatment compared to baseline. In explorative analyses, the working alliance measured at the beginning of ICBT treatment predicted improved physical (p = 0.02) and psychological (p < 0.001) outcomes. CONCLUSIONS: Results underline the promise of therapist-guided, individually tailored ICBT to improve physical functioning and reduce the impact of psoriasis on daily activities in patients with a psychological risk profile. Establishing a good therapeutic relationship early on may be an important factor that influences treatment outcomes in personalized ICBT interventions. Further research is needed to evaluate ICBT effectiveness in additional samples and to explore its underlying mechanisms.

Prevalence and relevance of Type D personality in fibromyalgia.

OBJECTIVE: Distressed (Type D) personality, combining high negative affectivity and social inhibition, is linked to poor health in various populations. Because patients with fibromyalgia experience high negative affect and show signs of social inhibition, this study aimed to examine the prevalence of Type D's components and their associations with health in an additive (worse health with both components present) or synergistic way (components amplifying each other's effects). METHOD: Type D personality and physical and mental health were assessed online by 558 patients with self-reported fibromyalgia (94% women, age 47 ± 11 (21-77)years) by the Type D Scale-14 and RAND-36 Health Status Inventory. RESULTS: Using the standard cutscores, Type D personality was present in 56.5% of patients. Negative affectivity alone and combined with social inhibition was associated with worse mental and, more limited, physical health, but no interactive (synergistic) associations were found. CONCLUSIONS: Type D personality in fibromyalgia exceeds prevalence estimates in general, cardiovascular and chronic pain populations. Some indication of an additive but not of a synergistic effect was found, particularly for mental health, with clearly the largest associations for negative affectivity. The high prevalence of Type D's components may have specific treatment implications.

Body attention, ignorance and awareness scale: assessing relevant concepts for physical and psychological functioning in psoriasis.

A certain level of attention to bodily signals may be adaptive in the management of chronic skin conditions, as a lack of attention may lead to inadequate self-care behaviour and, consequently, may affect functioning and treatment outcomes. The purpose of this study was to develop a body awareness questionnaire and to investigate its psychometric properties and physical and psychological correlates in a cross-sectional study in patients with psoriasis (n = 475). The 16-item Body Attention, Ignorance and Awareness Scale demonstrated a 3-factor structure that could be interpreted as body ignorance, body attention, and body awareness (Cronbach's α of 0.73, 0.74, and 0.68, respectively). Higher body ignorance was significantly related to more physical symptoms and worse psychological functioning. Body attention and body awareness showed small significant correlations with coping and personality. Given the negative influence of impaired psychological functioning on treatment outcomes, it may be clinically important to screen for theses constructs of body awareness in chronic skin conditions.

Internet-based cognitive behavioral therapy for patients with chronic somatic conditions: a meta-analytic review.

BACKGROUND: Patients with chronic somatic conditions face unique challenges accessing mental health care outside of their homes due to symptoms and physical limitations. Internet-based cognitive behavioral therapy (ICBT) has shown to be effective for various psychological conditions. The increasing number of recent trials need to be systematically evaluated and quantitatively analyzed to determine whether ICBT is also effective for chronic somatic conditions and to gain insight into the types of problems that could be targeted. OBJECTIVE: Our goal was to describe and evaluate the effectiveness of guided ICBT interventions for chronic somatic conditions on general psychological outcomes, disease-related physical outcomes, and disease-related impact on daily life outcomes. The role of treatment length was also examined. METHODS: PubMed, PsycINFO, and Embase were searched from inception until February 2012, by combining search terms indicative of effect studies, Internet, and cognitive behavioral therapy. Studies were included if they fulfilled the following six criteria: (1) randomized controlled trial, (2) Internet-based interventions, (3) based on cognitive behavioral therapy, (4) therapist-guided, (5) adult (≥18 years old) patients with an existing chronic somatic condition, and (6) published in English. 23 randomized controlled trials of guided ICBT were selected by 2 independent raters after reviewing 4848 abstracts. Demographic, clinical, and methodological variables were extracted. Standardized mean differences were calculated between intervention and control conditions for each outcome and pooled using random effects models when appropriate. RESULTS: Guided ICBT was shown to improve all outcome categories with small effect sizes for generic psychological outcomes (effect size range 0.17-0.21) and occasionally larger effects for disease-specific physical outcomes (effect size range 0.07 to 1.19) and disease-related impact outcomes (effect size range 0.17-1.11). Interventions with a longer treatment duration (>6 weeks) led to more consistent effects on depression. CONCLUSIONS: Guided ICBT appears to be a promising and effective treatment for chronic somatic conditions to improve psychological and physical functioning and disease-related impact. The most consistent improvements were found for disease-specific outcomes, which supports the possible relevance of tailoring interventions to specific patient groups. Explorative analyses revealed that longer treatment length holds the promise of larger treatment effects for the specific outcome of depression. While the current meta-analysis focused on several chronic somatic conditions, future meta-analyses for separate chronic somatic conditions can further consolidate these results, also in terms of cost-effectiveness.

Mindfulness-based stress reduction and physiological activity during acute stress: a randomized controlled trial.

OBJECTIVE: The aim was to examine the effects of a Mindfulness-Based Stress Reduction (MBSR) intervention on cardiovascular and cortisol activity during acute stress. METHOD: Eighty-eight healthy community-dwelling individuals reporting elevated stress levels were randomly assigned to the MBSR protocol or a waitlist control group. Before and after the intervention period they participated in a laboratory stress protocol consisting of mental arithmetic and speech tasks. Laboratory measurements included continuous cardiovascular parameters (heart period, heart rate variability, and systolic and diastolic blood pressure [SBP and DBP]), and salivary cortisol. RESULTS: Compared to the control group and controlling for age, sex, body mass index, and beta-blockers, the MBSR group showed larger pre- to postintervention decreases in overall SBP (F(1, 58) = 4.99, p = .029, partial η² = .08) and DBP (F(1, 58) = 11.09, p = .002, partial η² = .16). In addition, the MBSR group exhibited smaller SBP and DBP stress-related changes from pre- to postintervention (F(2, 116) = 4.89, p = .012, partial η² = .08; F(2, 116) = 6.07, p = .007, partial η² = .10, respectively). No effects were obtained on other physiological measures. CONCLUSION: MBSR may help reducing blood pressure levels and blood pressure reactivity to stress.

What patients think about E-health: patients' perspective on internet-based cognitive behavioral treatment for patients with rheumatoid arthritis and psoriasis.

In the past decade, the use of internet-based cognitive behavioral treatments (internet-based CBT) for a wide range of patients has grown intensively. Incorporating the patients' opinions and perspective into new health care innovations might improve the quality and applicability of these innovations, as high dropout rates and low attrition are the often-reported concerns in E-health research. Most studies to date have examined patient perspectives on specific internet-based interventions that patients had participated in, and not the views of the general public. The current paper explores the perspective of patients with rheumatoid arthritis and psoriasis on internet-based CBT for these patient groups. In total, 100 patients (55 % male) participated in a semi-structured telephone interview about internet-based CBT, including questions about possible advantages and disadvantages and the readiness to participate in this kind of treatment. Most patients (78 %) were prepared to participate in internet-based CBT. Patients endorsed the advantages (57 %) more often than the disadvantages (34 %). The ease of internet-based CBT and the time saved were especially appealing to patients. Main disadvantages according to patients are that not all patients will be reached due to computer illiteracy and the lack of face-to-face interaction with the therapist. The results suggest that, from the patients' perspective, internet-based CBT is a promising health care development. Further research into aspects such as therapist interaction and enhancing computer literacy might contribute to an effective way of E-health care delivery in the future.