Evaluating Access to Prescription Medications in the Atopic Dermatitis Patient Population in the USA.

INTRODUCTION: Despite advances in atopic dermatitis (AD) treatments, many patients face challenges obtaining medications. This study aimed to determine the frequency and causes of insurance coverage delays and denials for AD prescriptions and characterize the associated wait times and extent to which patients understand what to do when faced with a coverage issue. METHODS: This was a cross-sectional, observational study in which adult U.S. residents (aged 18+ years) with AD or caregivers of pediatric U.S. patients with AD (aged 0-17 years) completed an online survey (3 June-16 July 2021). RESULTS: Respondents (N = 978) were primarily adults with AD (81.8%), female (67.7%), and white (70.2%). There were 645 insurance delays or denials for AD prescriptions, with 48.1% (470/978) of respondents experiencing at least one delay/denial in the past year. Most delays/denials were for topical steroids (39.2%, 253/645), the most highly used prescription treatment class (83.9%, 821/978). However, the highest rate of delay/denials was for biologics, of which 43.6% (109/250) of all prescriptions faced a delay or denial. Denials were caused primarily by step therapy (27.6%) and delays by prior authorization (55.1%). Only 56.0% of respondents said they would know what to do if they faced an issue with AD prescription coverage. CONCLUSIONS: Patients with AD frequently experience insurance-related barriers to obtaining recommended therapies, and many do not know how to respond when these barriers arise. Strategies to improve timely therapeutic access are needed.

Towards a patient-centred definition for atopic dermatitis flare: a qualitative study of adults with atopic dermatitis.

BACKGROUND: The term 'flare' is used across multiple diseases, including atopic dermatitis (AD), to describe increased disease activity. While several definitions of an AD flare have been proposed, no single definition of AD flare is widely accepted and it is unclear what the term 'AD flare' means from the patient perspective. OBJECTIVES: To understand AD flares from the adult patient perspective and to explore how adults with AD define an AD flare. METHODS: Participants were adults with AD recruited from the National Eczema Association Ambassadors programme, a volunteer patient-engagement programme. They participated in online focus groups to discuss how they describe AD flares from their perspective, how they define its start and stop, and how they relate to existing definitions of flare. Using a grounded theory approach, transcripts were analysed and coded using an iterative process to identify concepts to support a patient-centred conceptual framework of 'flare'. RESULTS: Six 90-min focus groups of 3-8 participants each were conducted with 29 US adults (≥ 18 years of age) with AD who had at least one self-reported AD flare in the past year. When participants were presented with examples of previously published definitions of AD flare, participants found them problematic and unrelatable. Specifically, they felt that flare is hard to quantify or put on a numerical scale, definitions cannot solely be about skin symptoms and clinical verbiage does not resonate with patients' lived experiences. Concepts identified by patients as important to a definition of flare were changes from patient's baseline/patient's normal, mental/emotional/social consequences, physical changes in skin, attention needed/all-consuming focus, itch-scratch-burn cycle and control/loss of control/quality of life. Figuring out the trigger that initiated a flare was an underlying concept of the experience of flare but was not considered a contributor to the definition. CONCLUSIONS: The results highlight the complexity and diversity of AD flare experiences from the adult patient perspective. Previously published definitions of AD flares did not resonate with patients, suggesting a need for a patient-centred flare definition to support care conversations and AD management.

Atopic dermatitis (AD) is a skin disease that affects 10% of children and 7% of adults living in the USA. People living with AD experience inflamed, itchy skin with periods of worsening called 'flares'. To date, there have been many proposed definitions of flare; however, no definition describes the significant features of a flare as identified by those who have experienced flares first hand. The goal of this study was to create a new patient-informed definition of an AD flare. This patient-centred study was done by an international team of authors from the USA and Canada, including two authors from a patient advocacy organization and a person living with AD. We virtually interviewed groups of US adults with AD to discuss what flares meant to them. Themes that people living with AD felt were important to a flare definition included experiencing a change from a subjective baseline, physical changes of the skin, increased demand/focus on management of the skin, loss of control/quality of life, undergoing psychological/social consequences and the itch­scratch cycle. Flares were also associated with trying to figure out the cause of the flare. People with AD felt existing flare definitions did not reflect their experiences due to difficulty applying a numerical scale to their multidimensional experiences, definitions being exclusively about skin, and wording being too clinical and not relevant to their lived experience. The results of our study reveal important concepts of an AD flare from the patient perspective and highlight the diversity of features that define a flare. This patient-informed definition of flare can assist healthcare professionals in their delivery of care.

Factors Associated with Eczema Clinical Trial Awareness, Interest, and Participation in Adults.

Despite the need for improved eczema therapies and a rapid increase in available eczema clinical trials, participation remains low. The aim of this study was to identify factors associated with clinical trial awareness, interest, and barriers to enrolment and participation. An online survey, administered 1 May to 6 June 2020 to adults (≥ 18 years) with eczema in the USA, was analysed. Among 800 patients included, mean age was 49.4 years, most respondents were female (78.1%), White (75.4%), non-Hispanic (91.4%), and geographically living in an urban/suburban area (Rural-Urban Continuum Codes (RUCC) 1-3, 90.8%). Only 9.7% of respondents reported previous participation in clinical trials, while 57.1% had considered participation and 33.2% never considered participation. Higher satisfaction with current eczema therapy, clinical trial literacy, and confidence in finding eczema trial information were all associated with clinical trial awareness, interest, and successful participation. Younger age and having atopic dermatitis were associated with increased awareness, while female gender was a barrier to interest and successful participation.

Factors related to eczema clinical trial participation among adult patients and caregivers.

Background: Eczema can be difficult to treat due to its chronic, heterogeneous nature. Effective long-term treatments for adults and children are needed. Little is known about what considerations influence eczema patient and caregiver decision-making regarding clinical trial participation (CTP). This study identifies factors that adult patients and caregivers consider important for CTP and determines if differences exist between these groups. Methods: A 46-question survey was administered May 1-June 6, 2020, to adults and caregivers of children with eczema. Respondents were asked to rate the importance of a series of factors when considering CTP; adults and caregivers were compared. Results: Out of 31 total factors queried, eleven factors differed significantly in importance ratings between adults (n = 470) and caregivers (n = 134). The route of therapy (p = 0.030), side effects (p = 0.014), washout period (p = 0.028), receiving a placebo (p = 0.027), rescue therapy option (p = 0.033), access to test drug after trial (p = 0.027), sticking with the clinical trial regimen (p = 0.025), fit with work/school (p = 0.005), impact on overall health (p = 0.008), and satisfaction with current treatment (p = 0.033) were all more likely to be rated as important by caregivers than by adult patients. Only altruism was rated more highly by adult patients than caregivers (p = 0.027). Conclusions: Caregivers are more likely than adults to attribute high importance to factors that may affect their child's eczema or well-being when considering CTP. Patient-centered CTP education materials and decision aids may support patients and caregivers in CTP decision-making.

Factors facilitating shared decision making in eczema: Met and unmet needs from the patient perspective.

Background: Research has shown that eczema patients prefer some degree of shared control over treatment decisions, but little is known about factors perceived to be important to facilitate shared decision making (SDM). Objective: To determine factors eczema patients and caregivers consider to be important for SDM, and how often they experience them with their eczema healthcare provider (HCP). Methods: A cross-sectional survey study (64 questions) was conducted, which included factors related to SDM rated by respondents on a Likert scale for importance, and how often these factors were true with their current eczema HCP. Results: Respondents (840, response rate 62.4%) most frequently rated their health literacy and communication skills as important for SDM. Factors which indicated a strong provider-patient relationship, and HCPs who initiate treatment conversations were also deemed beneficial. Low importance was placed on concordant HCP race/ethnicity, however, of those who did rate it as important, 53/91 identified as Black (half of all Black respondents). Limitations: A high proportion of respondents were aware of the term SDM prior to the survey. Conclusions: SDM is more likely to be facilitated when patient education and empowerment are coupled with HCPs who initiate treatment discussions, maintain compassion resilience, and listen to patient perspectives.

Atopic Dermatitis Polypharmacy and Out-Of-Pocket Healthcare Expenses.

BACKGROUND: Atopic dermatitis (AD) out-of-pocket (OOP) expenses are substantial and impact household finances. Prescription polypharmacy and its association with OOP expenses in AD is poorly understood. OBJECTIVE: To characterize prescription polypharmacy and its association with OOP healthcare expenses among individuals with AD. METHODS: An online survey was administered to National Eczema Association members (N=113,502). Inclusion criteria (US resident, age ≥18, self-reported or caregiver of individual with AD) was met by 77.3% (1,118/1,447) of respondents. RESULTS: Polypharmacy (≥5 prescription treatments for AD in the past year) was associated with increased AD severity, poorer control, increased flares, increased healthcare provider visits, and comorbid asthma, allergic rhinitis, food allergy, and skin infections (P≤0.01). Polypharmacy noted with all prescription therapies was most associated with biologic (dupilumab), oral immunosuppressant (azathioprine, cyclosporine, methotrexate, corticosteroids), oral antimicrobial, and topical calcineurin inhibitor (P≤0.0005) use. Respondents with polypharmacy had increased OOP expenditures across numerous categories, including office visit co-pays, prescription medications both covered and not covered by insurance, hospitalization, emergency room visits, mental health services, non-prescription health products such as sleep aids, analgesics, and supplements, and alternative medications (P<0.005). Individuals with polypharmacy had elevated yearly OOP expenses (median [range]: $1200 [$0-$200,000]), higher monthly OOP costs than average, and more harmful household financial impact (P<0.0001 for all). CONCLUSION: Individuals with AD report considerable polypharmacy, which is associated with increased OOP expenses and harmful financial impact. Strategies are needed to reduce polypharmacy, minimize OOP costs, and optimize clinical outcomes. J Drugs Dermatol. 2023;22(2): doi:10.36849/JDD.7038.

The financial burden of out-of-pocket healthcare expenses on caregivers of children with atopic dermatitis in the United States.

Background: Atopic dermatitis (AD) is associated with elevated financial costs, including out-of-pocket (OOP) expenses. Yet, the full burden of OOP expenses in children with AD is poorly understood. Objectives: We sought to characterise categories, impact, and associations of caregiver-reported OOP AD healthcare expenses for US children. Methods: An online survey was administered to National Eczema Association members (N = 113 502). Inclusion criteria (US resident; respondent age ≥18; self or caregiver report of AD diagnosis) was met by 77.3% (1118/1447) of those who completed the questionnaire. Results: Caregivers of children (<18 years) with AD reported increased healthcare provider (HCP) visits, comorbid food allergy, cutaneous infections, and topical antimicrobial use (p < 0.005 for all), and increased OOP expenses for hospitalisation, emergency room visits, emollients, hygiene/bathing products, childcare, and specialised cleaning products, and clothing/bedding (p < 0.05 for all) compared to adults with AD. Children with AD had increased median total yearly OOP expenditures ($860 vs. $500, p = 0.002) and were more likely to spend ≥$1000 OOP per year (48.9% vs. 40.0%, p = 0.03). In children, yearly OOP expenses ≥$1000 were associated with increased AD severity, flares, HCP visits, prescription polypharmacy, and step-up therapy use (p < 0.005 for all) compared with adults. Predictors of harmful financial impact among children included black race (adjusted OR [95% confidence interval]: 3.86 [1.66-8.98] p = 0.002) and ≥$1000 annual OOP expenditures (6.98 [3.46-14.08], p < 0.0001). Conclusion: Children with AD have unique and increased OOP expenses that are associated with significant disease burden. Strategies are needed to reduce OOP costs and improve clinical outcomes in children with AD.

Past, Present, and Future Shared Decision-making Behavior Among Patients With Eczema and Caregivers.

Importance: Engaging in shared decision-making (SDM) can help patients understand and choose treatments according to their values and has been shown to improve patient satisfaction and adherence with treatment. It is well suited for conditions like eczema for which several medically appropriate treatment options exist. However, little is known about the use and experience of SDM in eczema. Objective: To understand experiences, preferences, and expectations for SDM in eczema care settings from the patient and caregiver perspective. Design, Setting, and Participants: The National Eczema Association conducted an online survey in January 2021 among self-selected patients and caregivers. Inclusion criteria (US resident, patient with eczema or caregiver of a patient with eczema aged ≤17 years, respondent age ≥18 years) were met by 1313 of 1387 respondents (94.7%). Data analysis was performed from May 2021 to November 2021. Main Outcomes and Measures: Outcomes were past SDM (using a 9-item SDM questionnaire [SDMQ9]; score ranges transformed to 0-100), present SDM (Control Preferences Scale), and future SDM (self-reported confidence and motivation to engage in SDM) behavior. Results: Among the 1313 respondents included in the study, most were female (1046 of 1313 [79.7%]) adult (1086 of 1313 [82.7%]) patients with a mean (SD) patient Recap of Atopic Eczema score of 11.7 (7.2), mean (SD) patient age of 39.5 (22.2) years, and mean (SD) SDMQ9 score of 65.1 (27.4). For present SDM, 479 of 966 (49.6%) reported "I prefer to make the final decision after seriously considering my doctor's opinion," and 655 of 955 (69.4%) reported being very or extremely confident to engage in SDM in the future. Those who reported feeling "very well informed" about the causes of eczema had a 14.7-point higher (95% CI, 9.2-20.2; P < .001, multiple linear regression) SDMQ9 score than those "not adequately informed" and were 3.4 times more likely (95% CI, 2.1-5.7; P < .001, multiple logistic regression) to be confident to engage in future SDM. Respondents reported that they would be motivated to engage in SDM if the clinician initiated SDM, valued input from the patient, and acknowledged that patients are experts on their own bodies or if a treatment is no longer working. Conclusions and Relevance: Results of this survey study suggest that a majority of patients with eczema and caregivers prefer a large role in decision-making for their care and that clinicians can initiate and facilitate SDM to improve patient satisfaction with care.

Financial burden and impact of atopic dermatitis out-of-pocket healthcare expenses among black individuals in the United States.

Black race is associated with increased atopic dermatitis (AD) severity and healthcare resource utilization. However, the burden of out-of-pocket (OOP) expenses among black individuals with AD is not well understood. We sought to characterize the categories and impact of OOP healthcare expenses associated with AD management among black individuals. A 25-question voluntary online survey was administered to National Eczema Association members (N = 113,502). Inclusion criteria (US residents age ≥ 18 years; self-report of AD or primary caregivers of individuals with AD) was met by 77.3% (1118/1447) of respondents. Black individuals with AD were younger, had lower household income, Medicaid, urban residence, poor AD control and frequent skin infections (P ≤ 0.02). Blacks vs. non-blacks reported more OOP costs for prescription medications covered (74.2% vs. 63.6%, P = 0.04) and not covered (65.1% vs. 46.5%, P = 0.0004) by insurance, emergency room visits (22.1% vs. 11.8%, P = 0.005), and outpatient laboratory testing (33.3% vs. 21.8%, P = 0.01). Black race was associated with increased household financial impact from OOP expenses (P = 0.0009), and predictors of financial impact included minimally controlled AD (adjusted OR [95% CI] 13.88 [1.63-117.96], P = 0.02), systemic therapy (4.34 [1.63-11.54], 0.003), > $200 monthly OOP expenses (14.28 [3.42-59.60], P = 0.0003), and Medicaid (4.02 [1.15-14.07], P = 0.03). Blacks with Medicaid had higher odds of harmful financial impact (3.32 [1.77-6.24], P = 0.0002) than those of black race (1.81 [1.04-3.15], P = 0.04) or with Medicaid (1.39 [1.02-1.88], P = 0.04) alone. Black race is associated with increased OOP costs for AD and significant household financial impact. Targeted interventions are needed to address financial disparities in AD.

Impact and Associations of Atopic Dermatitis Out-of-Pocket Health Care Expenses in the United States.

BACKGROUND: Atopic dermatitis (AD) is associated with substantial financial cost, including increased out-of-pocket (OOP) expenses. Associations and impact of OOP costs are poorly understood. OBJECTIVE: The aim of the study was to characterize the impact and associations of OOP health care expenses for AD. METHODS: A 25-question online survey was administered to National Eczema Association members (N = 113,502). Inclusion criteria (US residents aged ≥18 years; self-reported AD or primary caregiver of individual with AD) were met by 77.3% (1118 of 1447). RESULTS: Respondents with monthly OOP expenses greater than $200 were more likely to have increased AD severity, flares, health care provider visits, prescription polypharmacy, use of step-up therapy, frequent skin infections, and poorer disease control ( P < 0.005 for all). Respondents with OOP yearly expenditures greater than $1000 had similar associations and additionally increased rates of comorbid asthma, allergic rhinitis, and anxiety/depression ( P < 0.005 for all). A total of 64.6% (n = 624) reported harmful household financial impact of OOP expenses. Predictors of harmful impact included severe AD (adjusted odds ratio [95% confidence interval], 2.62 [1.11-6.19], P = 0.04), comorbid asthma (1.42 [1.07-1.87], P = 0.03), 5 health care provider visits or more in a year (2.80 [1.62-4.82], P = 0.0007), greater than $200 OOP monthly expenditures (2.16 [1.45-3.22], 0.0006), and $1000 annual OOP expenditures or more (4.56 [3.31-6.27], P < 0.0001). CONCLUSIONS: Out-of-pocket expenses for AD significantly impact household finances. Clinical interventions are needed to minimize OOP expenses while optimizing care outcomes.Capsule Summary:• Atopic dermatitis (AD) is associated with significant financial cost, including increased out-of-pocket (OOP) expenses, although the impact and associations of OOP health care expenses for AD management are not well understood.• The OOP health care expenses related to AD are associated with increased disease severity and health care utilization and significantly impact the household finances of patients and caregivers.• Health care providers should be mindful of the OOP financial burden related to AD management and engage in shared decision making to create a treatment plan that is practical and effective and minimizes household financial impact.

Financial Burden of Atopic Dermatitis Out-of-Pocket Health Care Expenses in the United States.

BACKGROUND: Atopic dermatitis (AD) is associated with considerable financial cost. However, the full burden of out-of-pocket (OOP) expenses is not well understood. OBJECTIVE: We sought to characterize the OOP health care expenses associated with AD management. METHODS: A 25-question voluntary online survey was administered to National Eczema Association members worldwide (n = 113,502). Inclusion criteria (US residents age ≥18 years who either self-reported had AD or were primary caregivers of individuals with AD) were met by 77.3% (1118/1447) of respondents. RESULTS: Respondents reported OOP expenses in 3 categories: (1) health care providers and prescriptions, including health care provider visit deductibles (68.7% [686]), prescription co-pays (64.3% [635]), and prescriptions not covered by insurance (48.6% [468]); (2) nonprescription health care products, including moisturizers (94.3% [934]), hygiene products (85.0% [824], allergy medications (75.1% [715]), itch relievers (68.25% [647]), dietary supplements (52.2% [491]), and sleep aids (37.0% [336]); and (3) complementary approaches, including cleaning products (74.7% [732]), clothing/bedding (44.8% [430]), alternative medications (19.0% [180]), and adjunctive therapies (15.9% [150]). The median annual AD OOP expense was US $600 (range, US $0-$200,000), with 41.9% (364) reporting expenditures US $1000 or greater. CONCLUSIONS: Out-of-pocket expenses place a significant financial burden on individuals with AD. Additional studies are needed to better understand associations and impact of OOP costs.

Copper(I) thiocyanate-amine networks: synthesis, structure, and luminescence behavior.

A series of metal-organic networks of CuSCN were prepared by direct reactions with substituted pyridine and aliphatic amine ligands, L. Thiocyanate bridging is seen in all but 1 of 11 new X-ray structures. Structures are reported for (CuSCN)L sheets (L = 3-chloro- and 3-bromopyridine, N-methylmorpholine), ladders (L = 2-ethylpyridine, N-methylpiperidine), and chains (L = 2,4,6-collidine). X-ray structures of (CuSCN)L(2) are chains (L = 4-ethyl- and 4-t-butylpyridine, piperidine, and morpholine). A unique N-thiocyanato monomer structure, (CuSCN)(3-ethylpyridine)(3), is also reported. In most cases, amine ligands are thermally released at temperatures <100 °C. Strong yellow-to-green luminescence at ambient temperature is observed for the substituted pyridine complexes. High solid state quantum efficiencies are seen for many of the CuSCN-L complexes. Microsecond phosphorescence lifetimes seen for CuSCN-L are in direct contrast to the nanosecond-lifetime emission of CuSCN. MLCT associated with pyridine π* orbitals is proposed as the excitation mechanism.