Atopic Dermatitis: A Qualitative Study on the Burdens of Living with Itchiness.

Objective: We sought to understand the consequences itchiness has on daily life that may not be immediately obvious in clinical assessments for patients with atopic dermatitis (AD). Methods: Focus groups and interviews involving 21 patients with AD and 12 family members examined aspects of the effects of itchiness on health-related quality of life (HRQL). Investigators conducted a thematic analysis where two researchers independently coded the narratives and arrived at a consensus on major themes. Results: Five themes emerged from our discussions. 1) Miserable experience: Itchiness was difficult to control and cease. 2) Physical damage: Damage to skin and hair occurred from scratching to alleviate the itchiness. 3) Effects on daily activities: Itchiness could affect everything participants did, including how they dressed, used make-up, and slept. 4) Effects on social activities and relationships: The discomfort and embarrassment from scratching in public and others' reactions hindered participants' social lives. 5) Emotional consequences: Various emotional responses to itchiness were reported, including embarrassment, depression, and irritation. Limitations: Though qualitative research provides a level of detail not often found in quantitative analyses, this study design is limited by small sample size and generalizability. Conclusion: Understanding these challenges can help clinicians open deeper conversations with their patients to learn more about what patients need from their dermatologic care. While itchiness from AD is well-known, this study shows that its effects on HRQL are not minimal and that patients may need further care for the consequences of this symptom.

Quality of Life Among Family of Patients with Atopic Dermatitis and Psoriasis.

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.

The Role of Pain in the Lives of Patients with Psoriasis: A Qualitative Study on an Inadequately Addressed Symptom.

Background: Patients with psoriasis commonly report experiencing severe sensory symptoms, and the burden of these symptoms can extend beyond unpleasant experiences to impair patients' health-related quality of life (HRQL). However, the symptom of pain and its consequences are still poorly understood in psoriasis patients. Objective: To understand the quality and intensity of pain associated with psoriasis as well as its interference with daily function in patients with psoriasis. Methods: Three focus groups and four interviews with psoriasis patients were conducted (n = 25). A trained facilitator used a semi-structured interview guide based on a literature review and a theory-driven approach. Two researchers independently coded the narratives and reached a consensus on the major themes using NVivo 12 software. Results: Our analysis produced five main themes regarding pain. (1) Perception of pain was illustrated through intense descriptors. (2) Patients identified pain triggers, including self-inflicted triggers. (3) Patients found coping strategies to deal with pain, including suppression of sensory experience. (4) Emotional suffering was linked primarily to the compulsion to continue scratching despite repeated efforts to stop and the failure of physicians to acknowledge the burden of the pain, which led to inadequate pain management. (5) Pain led to an overt impact on HRQL in these patients through interference with daily activity, intimate relationships, and sleep. Conclusions: Pain can be a significant hardship for patients with psoriasis. We encourage clinicians to inquire about pain separate from pruritus and to consider HRQL impacts of their patients' pain when determining treatments.

Why so Blue? (Or Should I Say Red?) Recognizing the Emotional Impact of Psoriasis on Patients and Family Members: A Qualitative Study.

Background: Psoriasis is a chronic skin condition with significant effects on quality of life, including impacts on emotional health. However, these experiences are not always addressed in clinic visits, despite their potential for significant effects on daily life. This study is part of a larger project on the effects of psoriasis on quality of life. The current information was analyzed separately because the amount of information on emotional impacts mentioned by participants was so significant that it warranted a separate analysis to thoroughly assess these experiences. Objective: To describe emotional consequences of psoriasis for patients and their family members. Methods: This project was conducted at an academic medical center in Utah. Experiences were discussed in interviews and focus groups with 25 patients and 11 family members. Thematic analysis was used to determine themes and subthemes. Results: This study sheds light on the damaging effects of psoriasis on emotional well-being, illustrating the challenges patients face from internal conflict, consequences for family members trying to cope with psoriasis in a loved one, and judgment from others who do not understand psoriasis and its challenges. Conclusion: Living with psoriasis leads to emotional consequences that may be left unaddressed in clinic visits, yet these experiences contribute significantly to quality of life. The stories told through this study can help clinicians understand how to identify and address emotional concerns to improve care for psoriasis patients and, as a result, improve quality of life for both patients and their families.

The Disruptiveness of Itchiness from Psoriasis: A Qualitative Study of the Impact of a Single Symptom on Quality of Life.

BACKGROUND: Pruritus is the most common symptom of psoriasis, with a significant impact on patient quality of life. In spite of this, the severity, persistence, and overall impact of itchiness has only been rarely formally assessed during standard psoriasis clinic visits. Objectives: We sought to understand the far-reaching impacts of itchiness on the lives of those with psoriasis and their families. METHODS: We conducted a qualitative study with five focus groups and 10 semi-structured interviews from August 2018 to January 2019. We enrolled 25 individuals with a diagnosis of at least moderate plaque psoriasis and 11 family members (primarily significant others). Views and experiences were analyzed thematically via content analysis. RESULTS: Itchiness considerably impacts those with plaque psoriasis and their families. Our narrative analysis produced three main themes relating to itchiness: the triggers of itchiness, including climate, emotions, and behaviors; the physical consequences of itchiness, including disruption of emotional well-being, sleep disturbance, and daily activities; and the prevention and treatment strategies used to alleviate itchiness. CONCLUSION: Itchiness impacts the quality of life in those with psoriasis and their family members. We strongly urge clinicians to inquire about and monitor the severity and impact of itchiness in psoriasis patients.

Quality of Life in Patients With Heart Failure With Recovered Ejection Fraction.

Importance: Heart failure with recovered ejection fraction (HFrecEF) is a recently recognized phenotype of patients with a history of reduced left ventricular ejection fraction (LVEF) that has subsequently normalized. It is unknown whether such LVEF improvement is associated with improvements in health status. Objective: To examine changes in health-related quality of life in patients with heart failure with reduced ejection fraction (HFrEF) whose LVEF normalized, compared with those whose LVEF remains reduced and those with HF with preserved EF (HFpEF). Design, Setting, and Participants: This prospective cohort study was conducted at a tertiary care hospital from November 2016 to December 2018. Consecutive patients seen in a heart failure clinic who completed patient-reported outcome assessments were included. Clinical data were abstracted from the electronic health record. Data analysis was completed from February to December 2020. Main Outcomes and Measures: Changes in Kansas City Cardiomyopathy Questionnaire overall summary score, Visual Analog Scale score, and Patient-Reported Outcomes Measurement Information System domain scores on physical function, fatigue, depression, and satisfaction with social roles over 1-year follow-up. Results: The study group included 319 patients (mean [SD] age, 60.4 [15.5] years; 120 women [37.6%]). At baseline, 212 patients (66.5%) had HFrEF and 107 (33.5%) had HFpEF. At a median follow-up of 366 (interquartile range, 310-421) days, LVEF had increased to 50% or more in 35 patients with HFrEF (16.5%). Recovery of systolic function was associated with heart failure-associated quality-of-life improvement, such that for each 10% increase in LVEF, the Kansas City Cardiomyopathy Questionnaire score improved by an mean (SD) of 4.8 (1.6) points (P = .003). Recovery of LVEF was also associated with improvement of physical function, satisfaction with social roles, and a reduction in fatigue. Conclusions and Relevance: Among patients with HFrEF in this study, normalization of left ventricular systolic function was associated with a significant improvement in health-related quality of life.

Effects of Pain From Atopic Dermatitis: Interview and Focus Group Study With Patients and Their Families.

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.

Quality of Life Assessed Using Skindex-16 Scores Among Patients With Acne Receiving Isotretinoin Treatment.

Importance: Acne is a common dermatologic condition and significantly affects psychosocial health and quality of life. An international task force recommended routine use of quality-of-life measures for clinic visits associated with acne management, but this has yet to translate into clinical practice. Objective: To assess mean Skindex-16 scores over time among patients with moderate to severe acne receiving isotretinoin treatment. Design, Setting, and Participants: A longitudinal, retrospective case series study of Skindex-16 data collected at monthly visits from 57 consecutive patients with acne receiving isotretinoin; data were collected and evaluated between November 23, 2016, and January 22, 2019. Continuous variables were compared using quantile regression. Multivariable linear mixed models evaluated mean (95% CI) score trajectory over time. Main Outcomes and Measure: Skindex-16 scores, including normalized scores for the emotional, symptomatic, and functional aspects of having skin disease as well as an overall score. Results: Fifty-seven patients (31 [54.4 %] males, with median [interquartile range] age of 17.2 [15.9-18.1] years) in this case series study completed the Skindex-16 at baseline and at least once during follow-up. Baseline Skindex-16 scores were similar by sex but worse with increasing age. Emotional impact was more bothersome to patients with acne requiring isotretinoin treatment than either symptoms or functioning. Improvements of greater than 50% in overall and Emotional domain scores were seen by month 2 of receiving isotretinoin treatment (eg, overall scores decreased from 39.4 to 17.5 by month 2; a decrease of 22.0; P < .001). Qualitatively, Skindex-16 scores reached their nadir between months 3 and 5; at month 4, overall Skindex-16 scores showed a 4.4-fold improvement (from 39.4 at baseline to 8.9; P < .001) and Emotional domain scores showed a 4.8-fold improvement (from 57.7 at baseline to 11.9; P < .001). Conclusions and Relevance: The findings of this case series suggest that patients receiving isotretinoin treatment achieve greater than a 50% improvement in quality of life by month 2 and can expect approximately 4-fold to 5-fold improvements from baseline with a full course of isotretinoin. This study shows the potential of routine administration of quality of life measures to assess patient care in dermatology.