World Psoriasis Happiness Report
Although all skin problems impact a patient's quality of life, psoriasis is known to have a uniquely negative effect on patient quality of life. We review the World Psoriasis Happiness Report for 2017, produced by LEO Innovation Lab, The Happiness Research Institute, and World Psoriasis Happiness Report where over 100,000 people reported their experiences with psoriasis.
Background: Psoriasis is an autoimmune disease characterized by the formation of scaly pink patches on the skin that are called plaques1. It is generally understood to be a genetic disease that is triggered by environmental factors, and unfortunately there is currently no cure at this time. Psoriasis is associated with depression and suicidal ideation2, and is known to significantly impact quality of life. Many patients feel that physicians underestimate or under-appreciate the disease's impact on quality of life.
Methodology: This study focuses on self-reported subjective well being, an area of research that has typically been lacking in the medical community. Over 120,000 people from 184 countries have respondedonline3 , making it one of the most comprehensive and large scale studies to date. Online survey and polling has allowed huge sample sizes that are orders of magnitude larger and can include more diverse populations than lab controlled testing. At the same time, the researchers acknowledge two major limitations: First, it is an online poll. This has many benefits but it also means that respondents are all patients who have access to the Internet or are technology savvy, a skew that does accurately represent psoriasis patients across the globe. The second is that it is a subjective self-assessment of happiness. Although most organizations have expanded to be inclusive of self-reported happiness4, it is, by definition, subjective and the data set will be open to interpretation.
- Stress is the biggest predictor of psychological unhappiness, followed by loneliness5.
- Women with psoriasis report significantly higher levels of stress and loneliness and lower levels of happiness compared to men with psoriasis. This contrasts with data of non-psoriasis patients win which women report higher levels of happiness overall, suggesting that psoriasis specifically impacts women more.
- Happiness gaps for regular population and psoriasis patients are significantly larger than that of comparing the highest and lower income groups. (28% vs 16% in the UK; 31% vs 10% for Denmark). Overall, the impact on happiness that psoriasis has is three times higher than the difference between people of high and low income levels6.
- Severity and symptoms affect people to varying degrees. Severe psoriasis is more impactful than mild psoriasis. High impact symptoms include trouble sleeping and trouble walking. Lower impact symptoms include scaling and itching.
- Emotional life is the area most impacted by psoriasis. Other areas, from most to least impacted are: Physical Function, Social Life, Professional Life, Family Life, Educational Life.
- There are deep trust-related issues with health care providers among psoriasis patients. Only 38% of patients believe that their health care provider takes their psoriasis seriously enough. 38% think that their health care provider doesn't adequately explain treatment information. 30% don't always follow the advice of their health care provider. This is a serious concern, given that trusting your health care provider is critical in maintaining a successful regimen, adherence, and various other reasons. At the same time, this also presents an opportunity for health care providers to improve their impact on patients.
Impact of Psoriasis:
Some of the more specific quality of life responses from psoriasis patients were harrowing in ways that a traditional study that focuses on visible symptoms can never quite capture:
- 20% never or almost never felt loved in the past 2 weeks
- 34% never or almost never feel things go their way
- 33% never or almost never felt on top of things within the last month
- 24% never or almost never felt confident about themselves within the last 2 weeks
- 54% very or fairly often feel nervous and stressed
- Most felt that connecting with someone else that has psoriasis is crucial to their well being
Symptoms/affected area have different impacts on happiness
Top 3 highest impact symptoms:
- Trouble walking: 22%
- Trouble sleeping: 18%
- Joint pain: 17.5%
Top 3 highest impact areas affected:
- Genitals: 12.9%
- Thighs: 12.8%
- Knees: 11.9%
Loneliness is widespread
There is a wide gap in reported loneliness between countries, but even in the least affected countries, there was psoriasis played a significant role.
- Lowest: Portugal (21%)
- Highest: United Kingdom (48%)
- The median falls at around 30%, a disturbingly high number.
There are major gaps in the impact of psoriasis by country
Top 3 Least Impacted:
- Portugal (7.31%)
- Greece (8.63%)
- Colombia (8.99%)
Top 3 Most Impacted:
- Canada (35.51%)
- Australia (37.41%)
- Germany (37.95%)
This finding is interesting in that countries that traditionally have higher happiness indices have larger gaps, and are more impacted by psoriasis. People may find that having a debilitating condition in an otherwise happy country make it tougher. This corroborates with the seemingly paradoxical finding that higher mental health issues and suicide rates in wealthier and happier countries7. That is, people may find happiness or satisfaction as "relative to others you can see." The other factor at play may be cultural. Collectivist cultures have a smaller happiness gap in the general population as well as in the psoriasis population.
Gert Jan Hofstede - Associate Professor at Wageningen University - explains further:
In a collectivistic society, being able to fulfil one's role in that society or in the family /tribe/organisation is the main source of fulfilment, and psoriasis would not stand in its way. In an individualistic society, ‘the brand me' is the main source of happiness, and psoriasis lessens brand value since you may see yourself as less beautiful and attractive8.
Happiness gaps may be reduced by understanding better how psoriasis impacts happiness, and how health care providers can make a difference:
- Up to 35.6% of people with psoriasis can be lifted out of misery by reducing extreme stress.
- Up to 12.9% of people with psoriasis can be lifted out of misery by reducing extreme loneliness
A visible condition like psoriasis will always have a social component to it. Traditional studies that have focused on the measurable, and have eschewed patient's subjective reporting may be lacking in an important component of the disease's true impact. A combination approach of taking both patient experiences and measurable data like PASI may lead to more efficacious and human interventions with high compliance.
The full report of the 2017 Psoriasis Happiness Report can be downloaded here:
1This describes the main symptom of psoriasis vulgaris or plaque psoriasis, which accounts for over 90% of psoriasis. There are 4 other main types of psoriasis: Guttate, Inverse, Pustular, and Erythrodermic.
3There is a growing movement to support subjective well-being measures as valid data that can and should inform policy from the OECD and the United Nations.
4The OECD (Organization for Economic Cooperation) has started measured life satisfaction as a data point for the development of countries.
5Measured using UCLA Loneliness scale, considered the gold standard for this measurement:http://fetzer.org/sites/default/files/images/stories/pdf/selfmeasures/Self_Measures_for_Loneliness_and_Interpersonal_Problems_UCLA_LONELINESS.pdf
6https://psoriasishappiness.report/ Page 3.
7This may seem paradoxical but there has been similar studies that suggest that people process happiness, sufficiency, or even wealth, relative to those around them. https://www.sciencedaily.com/releases/2011/04/110421082641.htm
8https://psoriasishappiness.report/static/documents/world-psoriasis-happiness-report-2017.pdf Page 64.