Atopic Dermatitis QoL Report

Atopic dermatitis, or eczema, a condition that causes itching, redness, and inflammation, affects approximately 11% of children and 7% of adults in the United States. The Eczema Society of Canada released a report on the effect that the disease has on quality of life. We summarize its findings and what it means for patients and health care workers.

Background

Atopic dermatitis, better known as eczema, is one of the most common chronic skin conditions next to acne. It commonly affects children, and often wanes with age, adults are affected as well. It impacts a patient's quality of life (QoL) in significant ways; it's certainly more than just a rash, as anyone who has atopic dermatitis will tell you. Atopic dermatitis is a chronic condition, and one with frequent flare-ups where symptoms suddenly and quickly worsen, which makes management extremely challenging. This study focuses on the quality of life issues surrounding patients and caretakers, which can sometimes be underappreciated by people in the medical community.

Methodology

This survey was conducted in 2016 and 2017 by the Eczema Society of Canada, a charity organization that is dedicated to improving the lives of Canadians with eczema. A total of 1035 Canadians with moderate or severe eczema were surveyed online. 377 of those respondents were adults living with eczema, and 658 were children and their caregivers. Online surveys allow for much larger samples, and more comprehensive questions due to the lack of time constraints, and fits well with quality of life surveys, as they are naturally qualitative questions.

Key Concerns:

In-person interviews were conducted to determine the most critical concerns among patients1:

  • Pain and itching
  • Lack of health care provider knowledge in management and treatment
  • Difficulty/long wait times in obtaining dermatologist referrals
  • Geographical challenges and accessibility
  • Lack of effective treatments to address itch and other physical symptoms

Has your atopic dermatitis contributed to any of the following for you in the past 2 years?2

  • Interrupted/loss of sleep: 79%
  • Anxiety: 64%
  • Avoid social activities: 48%
  • Avoid exercise/physical activities: 47%
  • Depression: 44%
  • Avoid intimacy: 40%
  • Miss work or important life events: 32%
  • Need to change careers/Give up certain activities: 30%

What's clear is that atopic dermatitis has a significant effect on patients on many levels including their social and professional lives, intimacy, to the basic ability to sleep. The Atopic Dermatitis Quality of Life Report lists out themes that present challenges and for patients and caretakers of those with atopic dermatitis. At the same time, these present opportunities of improvement for medical staff.

Theme: Access to Care and Treatment

42% of respondents with moderate to severe atopic dermatitis are managed by dermatologists3. This makes access to a specialist, a critical factor for proper patient care. For many Canadians, access to a specialist like a dermatologist can be limited, or time-consuming.

  • 69% of survey respondents have waited 3 months or longer to see a dermatologist.
  • 27% of survey respondents have waited 6 months or longer to see a dermatologist.

This is a long time to wait for any condition, but it's especially problematic for atopic dermatitis sufferers that are going through flare-ups. Symptoms can worsen very quickly during atopic dermatitis flare-ups, and patients are seeking relief.

Theme: Symptom Management and Specific Impacts

91% of respondents say that their symptoms are not well controlled4. 78% report that they have lived without adequate treatment for a year or longer. 81% of respondents say that their daily lives are negatively impacted by atopic dermatitis.

Atopic dermatitis impact in the past 2 years:

  • Loss of sleep: 79%
  • Anxiety: 64%
  • Avoid social activities: 48%
  • Avoid physical activities: 47%
  • Depression: 44%
  • Avoid intimacy: 40%
  • Miss important events: 32%
  • Need to change careers or lifestyle: 30%

Sleep loss clocks in as number one. 50% of respondents experience loss of sleep 8 nights or more per month5. In the area of mental health, 64% experience anxiety, and 44% experience depression. It's clear that atopic dermatitis affects patients on many dimensions - economically, functionally, and emotionally.

Theme: Treatments

While mild atopic dermatitis can often be managed by moisturizers, moderate and severe cases require medication. Even for mild disease, flare-ups, where symptoms worsen very quickly (often within hours) can necessitate medical treatments.

The most commonly used treatments are:

  • Corticosteroids (98%)
  • Bathing and moisturizing techniques (89%)
  • Oral antihistamines (69%)
  • Topical calcineurin inhibitors (51%)
  • Phototherapy (30%)

Most patients have tried, failed, and moved on to several different treatments.

  • 43% of respondents have used 10 or more different treatments to manage their atopic dermatitis.
  • 29% of respondents have used 15 or more different treatments to manage their atopic dermatitis.

In children under the age of 18 that have moderate and severe atopic dermatitis, 85% of children in the survey are living with atopic dermatitis that is not well controlled6. Long wait times are also a serious concern among children as well:

  • 46% of children waited 3 months or longer to see a dermatologist
  • 25% of children waited 6 months or longer to see a dermatologist

The most commonly used treatments for children are a little different:

  • Topical corticosteroid: 96%
  • Bathing and moisturizing techniques: 95%
  • Oral antihistamines: 59%
  • Topical calcineurin inhibitors: 31%
  • Systemic steroids (prednisone): 18%
  • Other immunosuppressants: 5%
  • Phototherapy: 5%

Theme: Children and Caretakers

Atopic dermatitis disproportionately affects infants and children. This means that the bulk of the responsibility will fall on the parent or caretaker. To understand the full scope of the impact, we need to delve into how atopic dermatitis affects caretakers of children who suffer from this condition.

The most common:

  • Anxiety related to child's eczema: 69%
  • Physical, mental, emotional stress: 63%
  • Disruption to time management: 62%
  • Loss of sleep due to child's AD: 55%
  • Lack of support from health care provider: 36%
  • Financial challenges caused by child's AD: 30%
  • Loss of time for other activities: 20-30%

For those who have or had moderate to severe atopic dermatitis, these findings are probably not surprising. It's important to note that atopic dermatitis can vary considerably in severity even among those with moderate to severe disease. As is true of many skin conditions, the effect that disease can have on quality of life, and to the quality of life of the caretakers, is often underestimated. This may be partly to do with lack of personal experience, and partly due to preconceived notions of skin problems being or largely being "merely" a cosmetic issue.


1These were asked in person to person interviews.
2This was a poll question.
3The majority of atopic dermatitis patients have mild disease, and their condition is managed primarily by their family or primary care physician. For those with more severe atopic dermatitis, like the population surveyed here, accessibility to specialists like dermatologists is very important.
4Page 5 of the report: https://eczemahelp.ca/wp-content/uploads/2017/09/ESC_QUALITY_OF_LIFE_REPORT_2017.pdf
5Page 6 of the report: https://eczemahelp.ca/wp-content/uploads/2017/09/ESC_QUALITY_OF_LIFE_REPORT_2017.pdf
6Page 7 of the report: https://eczemahelp.ca/wp-content/uploads/2017/09/ESC_QUALITY_OF_LIFE_REPORT_2017.pdf