Joshua E. Biber

Background Chronic inflammatory skin diseases like atopic dermatitis (AD) and psoriasis can severely impact patients’ quality of life (QOL). However, the effect of these diseases can diminish the QOL of patients’ family members as well. The objective of this study was to understand the impact on QOL for family members of patients diagnosed with AD or psoriasis. Methods We conducted focus groups and interviews with 23 individuals; 12 had a family member with AD, and 11 had a family member with psoriasis. After investigators independently coded the transcripts, thematic analysis was conducted. Results Three major themes emerged: (1) lifestyle consequences—many daily activities for family members, including but not limited to leisure activities, sleep, and cleaning, were affected by AD or psoriasis; (2) emotional consequences—family members felt frustrated, worried, or embarrassed, among other concerns, because of their loved ones’ AD or psoriasis; (3) relationships—relationships between family members and their loved ones with AD or psoriasis could become strained, and though family members might try to be sympathetic, doing so could be difficult because of their lack of understanding of how these diseases feel and personally affect their loved ones. Conclusions This study highlights the impacts of AD and psoriasis on the whole family. Clinicians should be mindful of the effects on QOL not only for patients but also for family members who live with and care about these patients. Especially when family members assist with treatments, it is important to understand family members’ experiences when making treatment decisions.

Background: Pain is an underappreciated symptom of atopic dermatitis that can affect the health-related quality of life (HRQL) of patients. Objective: The aim of this study is to understand the effect of pain on patients with atopic dermatitis and their family members and to recognize how this symptom affects HRQL. Methods: We conducted focus groups and interviews with patients with atopic dermatitis and their family members. Researchers independently coded the transcripts and reached a consensus on the major themes. Results: A total of 33 adult participants, consisting of 21 patients with atopic dermatitis (median age 47 years, range 22-77) and 12 family members (median age 50, range 22-72), attended either focus groups (23/33, 70%) or interviews (10/33, 30%), where we assessed their experiences of pain. Four themes emerged in our study. Itchiness and pain can be intertwined: pain was often caused by or otherwise associated with itchiness and could result from open sores and excoriated skin. Characteristics of pain: pain was most often described as burning. Other descriptors included mild, persistent discomfort; stinging; and stabbing. Effects of pain: pain negatively affected various aspects of daily life, including choice of clothing, sleep, social activities, and relationships. The location of painful areas could also limit physical activity, including sex. Pain management: pain from atopic dermatitis could be managed to varying degrees with different over-the-counter and prescription treatments. Systemic agents that cleared the skin also resolved the pain associated with atopic dermatitis. Conclusions: Pain can be a significant factor in the HRQL of patients with atopic dermatitis and should be considered by clinicians when caring for patients with atopic dermatitis.

BACKGROUND Pain is an underappreciated symptom of atopic dermatitis that can affect the health-related quality of life (HRQL) of patients. OBJECTIVE The aim of this study is to understand the effect of pain on patients with atopic dermatitis and their family members and to recognize how this symptom affects HRQL. METHODS We conducted focus groups and interviews with patients with atopic dermatitis and their family members. Researchers independently coded the transcripts and reached a consensus on the major themes. RESULTS A total of 33 adult participants, consisting of 21 patients with atopic dermatitis (median age 47 years, range 22-77) and 12 family members (median age 50, range 22-72), attended either focus groups (23/33, 70%) or interviews (10/33, 30%), where we assessed their experiences of pain. Four themes emerged in our study. Itchiness and pain can be intertwined: pain was often caused by or otherwise associated with itchiness and could result from open sores and excoriated skin. Characteristics of pain: pain was most often described as burning. Other descriptors included mild, persistent discomfort; stinging; and stabbing. Effects of pain: pain negatively affected various aspects of daily life, including choice of clothing, sleep, social activities, and relationships. The location of painful areas could also limit physical activity, including sex. Pain management: pain from atopic dermatitis could be managed to varying degrees with different over-the-counter and prescription treatments. Systemic agents that cleared the skin also resolved the pain associated with atopic dermatitis. CONCLUSIONS Pain can be a significant factor in the HRQL of patients with atopic dermatitis and should be considered by clinicians when caring for patients with atopic dermatitis.

Patient-reported outcomes (PROs) have traditionally been implemented through a manual process of paper and pencil with little standardization throughout a Healthcare System. Each practice has asked patients specific questions to understand the patient’s health as it pertains to their specialty. These data were rarely shared and there has not been a comparison of patient’s health across different specialty domains. We sought to leverage interoperable electronic systems to provide a standardization of PRO assessments across sites of care. University of Utah Health is comprised of four hospitals, 12 community clinics, over 400,000 unique annual patients, and more than 5000 providers. The enterprise wide implementation of PROs started in November of 2015. Patients can complete an assessment at home via email, or within the clinic on a tablet. Each specialty has the opportunity to add additional specialty-specific instruments. We customized the interval with which the patient answers the assessments based on specialty preference in order to minimize patient burden, while maximizing relevant data for clinicians. Barriers and facilitators were identified in three phases: Pre-implementation, Implementation, and Post-implementation. Each phase was further broken down into technical challenges, content inclusion and exclusion, and organizational strategy. These phases are unique and require collaboration between several groups throughout the organization with support from executive leadership. We are deploying system-wide standard and customized PRO collection with the goals of providing better patient care, improving physician-patient communication, and ultimately improving the value of the care given. Standardized assessment provides any clinician with information to quickly evaluate the overall, physical and mental health of a patient. This information is available real time to aid in patient communication for the clinician.