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Abstract
Psoriasis is a multisystem disorder with a significant impact on the quality of life (QoL) of the patient. QoL in psoriasis is influenced by epidemiological factors, the type and extent of the disease, and underlying comorbidities. Various tools have been developed to assess the QoL in patients with psoriasis, namely psoriasis specific, skin specific, generic QoL, and mixed measures. In this review, we present a concise overview of the different indices and the pros and cons of various tools to assess the impact of psoriasis on patients.
Keywords: Indices, psoriasis, quality of life, tools
Introduction 
Psoriasis is a chronic, inflammatory autoimmune disease that is quite common and affects around 2% of the world population.[1] Even though psoriasis does not increase mortality, but it does cause significant comorbidities. It is a disease that is not only confined to the skin and nails, but it may also affect joints (psoriatic arthritis) and eyes (uveitis) and may be associated with cardiac morbidity.[1],[2] Like other autoimmune conditions, there is no definite cure for psoriasis; moreover, the relapsing and remitting nature of the condition significantly adds to the burden of the disease.[3]
The World Health Organization defines the quality of life (QoL) as the individual's perception of their position in life as per their goals, expectations, standards, and concerns for the culture and value system they live in.[2] The QoL is a holistic approach, whereas the health-related QoL (HRQoL) takes into consideration only the physical, mental, and psychological wellbeing.[1]
Determinants of QoL in patients with psoriasis
Various factors that may affect the QoL in psoriasis are as follows:
Epidemiological factorsA study from south India showed that females and elderly individuals have a significant effect on QoL due to psoriasis.[4]
Types of psoriasisThe presence of psoriatic arthritis or guttate psoriasis lowers QoL due to the pain and debilitating symptoms associated with the former and the acute nature of the disease in the latter.[1]
Clinical parametersBody surface area (BSA)—Some authors have found lower QoL and higher stress ratings in patients with extensive psoriasis, whereas Sampogna et al. reported a poor correlation between the extent of disease and the effect on QoL.[5],[6],[7] Increased BSA and increased dermatology life quality index (DLQI) add to the financial burden of treatment and indirectly lead to lower QoL.[5]Site of lesions—Palmoplantar psoriasis and lesions on visible sites significantly decrease the QoL as they affect the daily activities of the individuals and contribute to social stigmatization, respectively.Symptoms—itching and painAssociated comorbidities—Crohn's disease, metabolic syndrome, cardiovascular disease, etc., add to the disease burden.[8]Lastly, the duration of the disease has no significant effect on the QoL showing that the burden of the disease does not decrease over time, or do the patients adapt to the disease with time?[5]
In addition to the above, the visible, relapsing, and remitting nature of the disease often leads to social stigmatization, loss of confidence, feelings of hopelessness, psychological distress, anxiety, depression, and suicidal tendencies.[3] It also leads to loss of working days, loss of wages, and adds to the financial burden which in turn affects the QoL of the patients. Lack of control over the disease, lack of cure, and unexpected relapses significantly affect the future plans of the patient. In addition, there are psychosocial difficulties faced by the patient in social situations, especially in conditions where they need to expose their body, as in swimming, sexual intercourse, and situations that do not give adequate privacy.[9] They often feel ashamed and self-conscious, frequently complaining about social difficulties and friction with their family and society at large.[9],[10]
Tools to measure QoL
Various measures have been used to measure QoL in psoriasis patients. They can be classified as psoriasis-specific measures, skin-specific measures, generic QoL measures, and mixed [Table 1]. Among these, the most sensitive is psoriasis-specific measure, whereas generic measures help in comparison with other diseases.[1],[9],[10] Most studies use a combination of these different measures.
Table 1: Summary of tools to measure quality of life in psoriasis[1],[9]Psoriasis-specific measures
Psoriasis index of quality of life: This has been developed based on a “needs-based” approach. It assesses the capability of the individuals to satisfy their needs. It was developed by interviewing patients in three countries of Europe.[10] Later, an American version of the questionnaire was also developed. It comprises 25 questions. Its main advantage is that it assesses the impact of the disease rather than the impairment or disability. Moreover, it works in uniformly across different patient samples irrespective of the age or sex of the patients.[9],[10]Psoriasis Disability Index It is a 15-item scale that takes into consideration self-reported disability pertaining to factors like daily activity, personal relationships, employment, leisure activities, and the effect of treatment.[9] It focuses on the effect of the disease on the everyday life of the patient.Psoriasis life stress inventory: This is a 15-item questionnaire with scores ranging from 0 to 45.[1] It measures the psychosocial stress associated with coping with everyday events due to psoriasis. It is assessed by asking the patient to grade the questions from 0 to 3 based on the absolute frequency with which the particular parameter has been experienced by them in the last four weeks. It helps to classify patients into two categories[9]:Score less than 10—not significantly affected by psoriasis-related stress
Score greater than 10—significantly affected by psoriasis-related stress.
Psoriasis area and severity index (PASI) & Simplified PASI (SAPASI): It measures the clinical severity of psoriasis and takes into consideration the BSA and three parameters: erythema, scaling, and induration. Each parameter is graded from 0 to 4. The head, the trunk, the upper extremities, and lower extremities, corresponding to 10%, 20%, 30%, and 40% of the total body area, respectively are used for the calculation of PASI. The maximum score for PASI is 72 and the minimum is 0. It is one of the most widely used indices, for psoriasis both in research and in the clinical setting. It is based on the severity of disease and indirectly measures the impact of psoriasis on QoL.[9]SAPASI is also scored from 0 to 72, but it is a self-assessment index, making it quicker and simpler than PASI.[9],[11] In SAPASI, the body is divided into ten unequal areas, and those areas are chosen which are more likely to affect the self-esteem and normal functioning of an individual.[11]
A study in pediatric patients with psoriasis reported in a real-world setting found that the greatest improvements in QOL were associated with PASI 90 or greater, a decrease in BSA involvement of 90% or greater, and systemic treatments to reach optimal QOL.[12]
Skin-specific measures
DLQI: This is a skin-specific, self-reporting questionnaire used to measure QoL in various skin diseases. It comprises ten items. Items 1 and 2 address symptoms and feelings, 3 and 4 address daily activities, 5 and 6 on leisure, item 7 addresses work and school, items 8 and 9 are about personal relationships and item 10 addresses treatment of the skin condition.[9],[13] Each item is scored on a four-point scale over the previous week. Higher scores indicate greater impairment of HRQoL.[13]Questionnaire on experience with skin complaints: It helps to measure the social and psychological burden of psoriasis. It is a 23-item questionnaire that addresses four factors of stigmatization self-esteem and retreat, concealment of disease, composure, and experienced refusal.[1],[9]Dermatology quality of life scale: This scale mainly concentrates on the daily activities and psychosocial aspects of the patient. It has 17 psychosocial items and 12 activity items with each assigned a five-point scale. It helps to compare skin disorders in different populations irrespective of age, sex, socioeconomic status, and ethnicity.[14]Skindex 29: It has 29 questions pertaining to symptoms, functioning, and emotional domain. The higher the skindex 29, the worse the QoL.[14]Generic QoL measures
Short form 36 (SF 36): This is a self-reporting, generic questionnaire widely used by individuals who are aged 18 years and above.[14] It has 36 items assessing eight8 domains of health status, i.e., physical activities, social activities, usual physical role activities, body pain, general mental health, usual emotional role activities, vitality, and general health perceptions. A score of 0–100 is used for each subscale with higher scores denoting better HRQoL. It is commonly used to compare the impact of various diseases on QoL.[9],[14]Subject well-being scale: This is a five-item scale and it helps to measure global life satisfaction. It measures satisfaction as a whole without assessing satisfaction associated with a specific life event.EuroQoL 5D: It is an easy, quick, self-reported, generic, preference-based questionnaire which can be used in clinics, face-to-face interviews as well as for distant evaluation over email.[14] it takes into consideration parameters like mobility, usual activity, pain/discomfort, self-care, and anxiety/depression. It can be used across countries. Its major disadvantage in psoriasis is that it is not specific, and it measures the general health status instead of the HRQoL.[9],[14]Mixed measures of QoL
Salford Psoriasis index: It helps to measure the severity of psoriasis holistically by taking into consideration the psychosocial aspect.[9],[14] It measures the following three categories[14]:Signs (using PASI score)Psychosocial disability (using a visual analog scale to assess the impact of psoriasis on everyday life)Intervention.It has high reliability, validity, and is sensitive to change.[14]
The Koo-Menter Psoriasis Instrument (KMPI): This QoL instrument is divided into two parts, one to be filled by the patient and the other by the doctor. The questions are easy to understand but are exhaustive and quite thorough in content, containing HRQoL, psoriasis LQI and others.[14] The questions have to be answered concerning the previous month.[14]KMPI serves as an important instrument for therapeutic decision-making both for the physician and the patient. It helps to identify patients with a significant effect on QoL who need systemic therapy.
Impact of therapeutics on QoL in a patient with psoriasis
There is a wide range of therapeutic modalities available in a dermatologist's armamentarium to treat psoriasis, but unfortunately none of them are curative. The choice of therapy depends on the extent, the severity of lesions, associated comorbidities, financial constraints, patient preference, and clinical response to treatment. The choice of treatment is not very simple as often various drugs may negatively impact the QoL of the patient, which in turn leads to poor adherence.[15],[16]
Various topical drugs like corticosteroids, calcineurin inhibitors, vitamin D analogs, retinoids, coal tar, anthralin are used in mild to moderate psoriasis either individually or in combination with other topical and systemic agents. Using them in combination therapy helps improve the QoL, but their drawbacks like side effects on prolonged use, long duration of treatment, messy application, etc. may contribute to decreased QoL in certain patients. Phototherapy is one of the most effective therapies for psoriasis and is widely used nowadays. It can provide long-term remission and has a good safety profile. The PLUTO study showed that the improvement in QoL was similar in clinic-based and home-based phototherapy.[15] But clinic-based phototherapy may be inconvenient, time-consuming, and unaffordable for certain patients.
Systemic agents like methotrexate, cyclosporine, and retinoids have been widely used in psoriasis. They do help in decreasing the disease severity, but they come with their limitations, like an added cost, side effects, frequent monitoring, regular hospital visits, etc. which have a grave impact on the QoL of the patient. A study compared the effect of methotrexate versus cyclosporine on QoL of psoriasis patients using PASI and physician global assessment, and no statistically significant difference was noted.[17]
Biologics have been a game changer in the management of psoriasis. They have the added advantage of long-term remissions, better disease control, and have shown significant improvement in the QoL of patients with psoriasis despite the added cost and side effects.[9],[15],[16]
Factors to be considered before choosing a tool to measure QoL in patients with psoriasis
There is no perfect single tool to measure QoL. The tool for measurement has to be chosen based on various factors as enumerated:
Purpose: The tool has to be chosen based on the application and expectations. If one wants to compare psoriasis with other skin diseases, then a skin-specific tool should be used, whereas if one wants to compare it with a non-dermatological condition then a generic QoL measuring tool may be considered.Time/duration under consideration: Some tools assess the QoL based on the last week and some based on the last four weeks.Setting: Whether the assessment is done in a clinic, in a face-to-face interview or over email.Validity and reliability: Reliability refers to the accuracy of a measure, whereas validity refers to the extent the tool is actually measuring what it intends to measure.[9]Language and culture. Conclusion Psoriasis is a severely debilitating disorder that gravely distresses a person's mental and physical well-being, and it affects the personal, professional, and married life of the individual.[18] Measuring QoL of psoriasis patients helps in better understanding its impact on the psychosocial well-being of the patient, offers psychological help on time, assesses disease severity, prognosis and also helps with the management. It highlights the importance of patient counseling and education as an integral part of psoriasis management. Counselling helps in better disease acceptance by the patients, which indirectly contributes to a better QoL.[19] In future more head-to-head comparison of the effect of QoL on various drugs is required to conclusively establish superiority of one therapeutic agent over other.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
References 
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