CHAPTER I INTRODUCTION

CHAPTER I INTRODUCTION 1.1 Background of the study PSORIASIS Psoriasis, a dermatological condition is of importance to a clinician beyond treatment of the skin lesions (Nestle, Kaplan, & Barker, 2009). This skin condition characterized by red, scaly plaques, which could cover all parts of the body has a greater impact on the affected persons psychological and physical well-being than many other chronic medical ailments like diabetes or cancer. Psoriasis affects approximately 2-3% of the world population (Nestle, et al., 2009). A lifelong chronic disease, Psoriasis is independently associated with depression and also the risk of psychiatric co-morbidity increases with the severity of the disease reports the National Psoriasis Foundation (Psoriasis and Mental Health Issue Brief - Executive Summary, 2012). This capacity limiting disease is a non-contagious chronic skin condition affecting the skin cells keratinocytes. During the outbreak of the disease, proliferation of the keratinocytes is ten times more than that in normal skin. Normally skin cells mature and shed from the skin surface every 28-30 days. In psoriatic skin, keratinocytes raise to surface in 3-6 days forming scaly, white patches (Hanson, et al., 2008). Raised skin lesions that are inflamed and scaly red known as plaques are formed due to failure of fast dividing keratinocytes to mature properly. These plaques can be itchy and painful (Crow, 2012). 1

MECHANISM OF DISEASE Psoriasis was long considered mainly as an epidermal disease. The use of anti-inflammatory agents in the treatment of psoriasis and observation of a marked improvement in the disease led to exploration of the immunological background of this disease (Lebwohl, 2003). Adaptive immunity is now considered to be one of the key drivers of psoriasis. Presence of abundant T-cells and dendritic cells in psoriatic tissue and effectiveness of drugs targeting the adaptive immune system have led to this conclusion. The adaptive immune system, one of the arms of the immune system develops over a period of time. T cells and antibodies that form a component of the Adaptive Immune system are formed upon previous exposure to infectious agents, in preparation to strike upon second invasion by the infectious agents (Garber, 2012). Figure 1. Differentiation between normal skin and psoriatic skin. Excessive proliferation of keratinocytes in psoriatic skin. 2

CAUSATIVE FACTORS Several population studies have revealed that the incidence of psoriasis is greater among first and second degree relatives of patients than the general population, thus pointing to the possible involvement of genetic factors (Farber & Nall, 1974; Nestle, et al., 2009). The risk of psoriasis among mono-zygtotic twins is two-three times higher than di-zygotic twins (Farber & Nall, 1974). 36 different genetic loci have been associated with susceptibility to the disease (Garber, 2012; Tsoi, et al., 2012). The major genetic determinant of is PSORS1 which has shown to account for 35 to 50% of all hereditary psoriasis. The mode of inheritance of this disease condition is complex (Trembath, et al., 1997). Presence of immune cells in psoriatic lesions led to exploration of a possible pathogenic involvement. Though no specific infection has been associated with psoriasis, the onset of psoriasis often coincides with infection of the throat and tonsils by Streptococcus bacteria. The adaptive immune system while priming T and B cells against the infection confuses some bacterial protein for host skin protein is a suggested a theory (Garber, 2012). There are several triggering factors for this auto-immune disease psoriasis, including infection, cold weather, stress, smoking and some medications like lithium and beta-blockers (Hanson, et al., 2008). The initiating factor of psoriasis is a lively debate with the pendulum swinging between abnormalities of keratinocytes and abnormalities of the immune system (Garber, 2012). 3

The triggers of psoriasis can be genetic or environmental. The genetic triggers of psoriasis are quite complex with 36 associated loci now discovered and these may interact with environmental factors that act on the immune system (Lowes, Bowcock, & Krueger, 2007). Smoking has been found to be an independent risk factor for psoriasis. This risk has been shown to be particularly increased in heavy smokers and those who have been smoking for a long time (Li, Han, Choi, & Qureshi, 2012). Psychological stress and BMI have also found to be triggering factors for psoriasis. Both BMI and psychological stress have been shown to modulate immune function. Chronic exposure to such environmental factors may lead to the development of psoriasis (Naldi, et al., 2005; Ozden, et al., 2011). TYPES OF PSORIASIS Psoriasis is present in several different forms in the affected population. Patients tend to display any one form at a given point of time. Different forms have been found to co-exist as well. This could include manifestation of one psoriatic form after another. Around 80% of all psoriasis cases are classified as mild. Tabulated below are the different forms of psoriasis, their prevalence and clinical manifestations. In a study assessing the frequency of symptoms in patients with psoriasis, more than two-thirds of the patients were found to experience itching. 26% of the patients reported skin hurt, 46.1% reported burning or stinging, 23.9% were bothered by water, 59.7% experienced irritation, 39% of them experienced skin sensitivity and 25.4% bleeding (Sampogna, et al., 2004). The different types of psoriasis have been detailed in Table 1. 4

Table 1. Types of psoriasis (crow, 2012) Type of Psoriasis Prevalence (% of all psoriasis cases) Clinical Manifestation Pictorial Representation Chronic Plaque Psoriasis/ Psoriasis Vulgaris 80-90% Red, scaly plaques seen in discrete plaques. The area of body covered with plaques varies widely from patient to patient. Guttate Psoriasis <10% Multiple small, red spots, usually seen on the trunk and limbs 5

Type of Psoriasis Prevalence (% of all psoriasis cases) Clinical Manifestation Pictorial Representation Inverse/flexural Psoriasis <5% Scale free lesions that appear in the folds of skin. These lesions appear very red Pustular Psoriasis <5% This form manifests as white blisters surrounded by red skin. This may be localized to a particular area or cover the entire body Erythrodermic Psoriasis <2% This is a rare and dangerous form of psoriasis that causes patients to lose excessive amounts of heat through the skin. The body is found to be covered with severe 6

Type of Psoriasis Prevalence (% of all psoriasis cases) Clinical Manifestation Pictorial Representation red inflammation and skin shedding 7

EPIDEMIOLOGY OF PSORIASIS With a global prevalence of 2-3% the highest prevalence percentage is seen in Italy (2.90%), Denmark (2.84%), Sweden (2.00%) and Germany (2.00%) (Crow, 2012). In Table 2 are documented epidemiological studies on psoriasis from India. Table 2. Studies reporting about epidemiology of psoriasis in India (yadav & dogra, 2010) Study Prevalence (% of total dermatology patients) Total number of patients (Okhandiar & Banerjee, 1963) (Bedi, 1977) (Kumar, Kaur, Sharma, & Kaur, 1986) (Bedi, 1995) (Kaur, Handa, & Kumar, 1997) 1.02 0.8 1.4 2.8 2.3 3573 162 782 530 1220 Henseler & Christophers (1985) identified two different types of patient cohorts of psoriasis vulgaris patients who were recognized in a study based on a database of 2147 patients. Of these two cohorts that were identified, one cohort had an early onset (Type I) of psoriasis typically in the second decade of their lives and one cohort had a late onset (Type II) in the fifth decade of their lives. More widespread and recurrent disease was seen in the late onset cohort and higher number of patients in this cohort had affected 8

parents when compared to the late onset cohort (Henseler & Christophers, 1985; Yadav & Dogra, 2010). The dermatology department of PGIMER in Chandigarh, India reveals that 2.3% of dermatology outpatients in India suffer from Psoriasis. A steady increase in prevalence and morbidity of psoriasis is being seen in India. News report from PGIMER also reveals that plaque type psoriasis is seen in 93% of cases. The scalp was found to be the site of onset of psoriasis in 25.2% of patients. Joint and nail involvement was seen in 4.4% and 55.7% of cases. A study of pediatric psoriasis revealed that the age of onset may vary from 4 days to 14 years of age ("Prevalence, morbidity of psoriasis increasing in India: PGI doc," 2012). There are very few psoriasis studies based on a large population type from South India. One particular study by Asokan et al., (2011) on 275 psoriasis patients in Thrissur Medical College, Kerala, showed 89.5% of recorded cases to have had Chronic Plaque type psoriasis (Asokan, Prathap, Ajithkumar, Betsy, & Binesh, 2011). Such strong epidemiological data for the high rate of prevalence of this type of psoriasis and the baseline studies that were done by the researcher are the key factors for having choosing a study population of Chronic Plaque Psoriasis patients. World-wide incidence and prevalence of psoriasis is poorly documented and there is a lack of uniformity in documenting of data. There is also a dearth of nation-wide psoriasis prevalence data from India. Most of the data available 9

are limited to specific geographical locations in India particularly in the North. This dearth adds even more significance for this study to attempt to alleviate the knowledge dearth of psoriasis prevalence in South India. 1.2 Need for the Study BURDEN OF PSORIASIS Disability adjusted life years (DALY) is a measure of overall disease burden, expressed as the cumulative number of years lost due to ill-health, disability or early death. DALY is an objective way of representing disease burden. All age DALYs for psoriasis increased by 42% from 1990 to 2010 (742X1000 to 1059X1000). DALY per 100,000 for psoriasis has increased from 14 to 15 by 9.8% (from 1990 to 2010). (Murray et al, 2010). Perhaps the most difficult thing to deal with when you have psoriasis is the emotional impact of having visibly disabled skin. People stare, or they ask What did you do to your skin? I have had hairdressers who were visibly uncomfortable while working on my hair and scalp. Public misunderstanding of the disease is tremendous. Well-meaning colleagues have asked if there was something in my diet that I could change to get rid of it as if perhaps some bad eating habits of mine are to blame. A common expression I hear is Isn't there just some cream or lotion you can use for that? People do not understand that psoriasis is a chronic, often difficult-to-treat skin condition, and it is not for a lack of effort or diligence on my part that I cannot always control it well. Sadly, many people judge us on our outward appearance, and this fact has me always made me feel ashamed of my skin. I go to great lengths to hide it. Psoriatic arthritis comes with its own set of painful experiences. I have had colleagues make snide remarks when I take the elevator up one floor. When my arthritis is bad, I feel in the mornings as if I had run a marathon the previous day. My mind is alert and active, but 10

Figure 2. Disability adjusted life year. (wikipedia) 11

Psoriasis does not affect the survival of the patient generally, but has major negative effect on patients. This is demonstrated by significant decline in quality of life (Langley, Krueger, & Griffiths, 2005). Patients suffering from psoriasis suffer a detriment in quality of life similar to or worse than patients with other chronic diseases like heart disease or diabetes (Finlay & Kelly, 1987). Those suffering from psoriasis feel stigmatized by the conditions. This stigma leads to depression and suicidal intentions in more than 5% of the patients (Gupta, Schork, Gupta, Kirkby, & Ellis, 1993). Social and psychological burden Prevalence of depression and anxiety among patients with psoriasis range between 10% and 48% based on the data from several studies (Raho, Koleva, Garattini, & Naldi, 2012). Prevalence and anxiety were found to increase with increasing severity of the disease in psoriasis patients (Langley, et al., 2005). Patients commonly suffer stigmatization due to the potential lack of cure for psoriasis and the distinct psycho social reaction to the disease. Public have been found to react with disinterest and stigmatization rather than empathy and understanding to skin disease (Jobling & Naldi, 2006). It has been documented in a 1-year prospective study that women did not feel less stigmatized with improvement in disease condition (Schmid-Ott, et al., 2005). This strongly points out to the emotional scarring in patients suffering from psoriasis. 12

Economic burden This emotional scarring often leads to embarrassment and lack of selfconfidence. Those affected in such a way have been found to public places or situations where their skin would have to be exposed. This retraction from the society affects relationships, social health and often even one s employment (Raho, et al., 2012). A study based on data from the National Psoriasis Foundation database showed that the probability of low income was significantly greater among patients with severe psoriasis than those with mild psoriasis (Horn, et al., 2007). Psoriasis being a life-long disease, contributes in various ways towards increasing the economic burden of patients. Treatment costs are not just limited to medication and hospitalization. It is also necessary to account for the selfcare products, productivity loss due to absence from work due to sick leave for treatments like phototherapy (Raho, et al., 2012). Quality of life Having discussed the social, psychological and economic burden of psoriasis, its effect of Quality of Life is not surprising. Impact of Psoriasis on the quality of life of patients has been found to be just as pronounced as the impact of other chronic and life-threatening diseases like heart attack or chronic pulmonary diseases (Rapp, Feldman, Exum, Fleischer, & Reboussin, 1999). In a study of over 6000 psoriasis patients, men were found to consume more alcohol and there was a correlation between number of beers 13

consumed and psoriasis-related disability (PDI). Also a weak but positive correlation was found between the number of cigarettes smoked, use of tranquilizers, sleep medication as well as anti-depressants and psoriasis quality of life measurements (Gupta & Gupta, 1995). Further in a study using Dermatology Life Quality Index (DQLI) the impact of psoriasis was found to be greater for patients with severe psoriasis when compared to those with mild psoriasis. Patients with severe psoriasis experienced a major impact in their domestic life and professional life. Patients with severe psoriasis reported that they felt a need to clean the house more often, experienced greater need for external assistance and a loss of productivity at work place (Meyer, et al., 2010). It has also been identified recently that pathological worry and anxiety occuedr in at least one-third of the patients with psoriasis (Richards, Fortune, Griffiths, & Main, 2001). Important of Sleep Sleep is a subjective feeling and every day is running towards night. Sleep is essential for wear and tear of tissues, energy conservation, rest and smooth functioning of the organs. We need 7-8 hours of night sleep everyday. The sleep disturbance affects the work productivity, impairs the ADL. Sleep disturbances causes, irritation, tiredness, weakness, lack of concentration and control and day time sleepiness. Many sleepless night causes, dark circle around the eye and changes the entire personality. An eight hours of good night sleep help the person to get up fresh in the morning and aids to smooth 14

functioning in the day time. Depression, worries, anxiety may cause sleeplessness and sleeplessness may lead to suicidal ideation. Body image disturbance is one of the major cause for sleep disturbance among patients with psoriasis. The environment, clothing food and the amount of day time work may influence the sleep quality. Sleep quality Although there is limited literature, sleep quality has been incorporated into quality-of-life measurements and is now being widely used to measure the impact of psoriasis (Gowda, Goldblum, McCall, & Feldman, 2010). In a study conducted by National Psoriasis Foundation in 2005, 49.5% of the respondents to a survey reported that psoriasis negatively impacted their sleep at least once per month (Callis Duffin, Wong, Horn, & Krueger, 2009). A case-control study in 2008 demonstrated that psoriasis is significantly associated with sleep disorders and insomnia (Wu, Mills, & Bala, 2008). ( Tabulated below) 15

Table 3 is a summary of various research publications studying psoriasis and sleep quality. 16

Table 3. Studies investigating sleep and psoriasis (Gowda, et al 2010) Study (Sharma, Koranne, & Singh, 2001) (Evers, et al., 2005) (Callis Duffin, et al., 2009) (Zachariae, Zachariae, Lei, & Pedersen, 2008) (Yosipovitch, Goon, Wee, Chan, & Goh, 2000) Association with sleep Sleep disturbance is the most common psychiatric symptom in patients with psoriasis. Fatigue is a consequence of sleep disturbance caused by active disease and pruritus Itch and pain of psoriatic lesions and impact of emotional well-being are also significant predictors of sleep interference Impaired sleep quality partially mediates the association between affective pruritus severity and depressive symptoms Pruritus is associated with difficulty in falling asleep and frequent wakening Sleep ameliorates itching Reduction of sleep time seems to affect the composition and integrity of various systems like the skin. Sleep deprivation may cause an increased production of glucocorticoids, which may alter the integrity of lamellar bodies, thus impairing the integrity of the skin. Also sleep deprivation also affects the 17

immune system which may affect the integrity of collagen fibers. These effects in the skin integrity may aggravate psoriasis symptoms like pruritus (Kahan, Andersen, Tomimori, & Tufik, 2010). BACKGROUND RESEARCH The investigator conducted some background research studies in the same setting as the doctoral thesis. These studies not only support the need for the study but also help define the statement of the problem clearly. In an assessment of disability level among patients with psoriasis 33% of the male patients were found to experience mild disability and 17% of male patients were found to experience moderate disability. Among female patients, 23% experienced mild disability and 27% experienced moderate disability. There was a significant association between the duration of illness and disability level. The longer the duration of illness, the greater the effect on the quality of life and the functional capacity of patients this disables them (R.Revathi, 2009). In a study on the quality of life of patients with skin disease and spouses of the patients, 90% of the psoriasis patients and 50% of the spouses were found to have poor quality of life. The burden of disease of psoriasis patients was found to be higher than those with other diseases and these patients were found to be in need of special counseling. It was found from this study that efforts to improve quality of life of patients should address the quality of life of their family as well (Revathi, Victoria, & E.Sujitha, 2012). 18

MOTIVATION FOR THE STUDY As mentioned earlier there is a limited data available from the Indian sub-continent on quality of life, disability and impairment of activities of daily living of patients with psoriasis. This limitation is more pronounced in South- India. This underlines the need for this study setting to be based in Sri Ramachandra Hospital in Chennai. In a survey conducted by the investigator of patients attending the Dermatology OPD Psoriasis Clinic in Sri Ramachandra Hospital, 96% of psoriasis patients were found to suffer from the Psoriasis Vulgaris, the most common kind of psoriasis. Based on available literature and background research this investigator decided to look into the quality of sleep of patient with Psoriasis Vulgaris using the Pittsburgh Sleep Quality Index (PSQI). It is not just aimed to investigate the quality of sleep but poor sleep has been found to affect skin integrity in various ways. This investigator also postulated that based on the available literature that poor sleep could possibly be worsening psoriasis symptoms and affecting activities of daily living of patients with psoriasis. For the same reason Psoriasis Severity and Activities of Daily Living were also quantified in the study and control group participants. 1.3 Statement of the problem A study to assess the effectiveness of sleep hygiene practices on quality of sleep, psoriasis severity and activities of daily living among patients with psoriasis at a selected hospital in Chennai. 19

1.4 Objectives of the study The Objectives of the study are to, 1. evaluate the effectiveness of sleep hygiene practices on quality of sleep among patients with psoriasis 2. determine the effectiveness of sleep hygiene practices on psoriasis severity among patients with psoriasis 3. assess the effectiveness of sleep hygiene practices on activities of daily living among patients with psoriasis 4. correlate the quality of sleep, psoriasis severity and activities of daily living 5. associate the selected background variables with quality of sleep, psoriasis severity and activities of daily living. 1.5 Research hypotheses 1. There will be a significant difference in the sleep quality among patients who practice the sleep hygiene practices than those who do not. 2. There will be a significant difference in psoriasis severity among patients who practice the sleep hygiene practices than those who do not. 3. There will be a significant difference in activities of daily living among patients who practice sleep hygiene practices than those who do not. 20

1.6 Operational definitions SLEEP HYGIENE PRACTICES The conceptual definition is, these are a set of practices to be followed by every patient enrolled in the study to promote the quality of their sleep. Patients were given guidelines about importance of sleep, food selection, outfit selection, environment, napping tips, physical hygiene, and regular exercise, follow-up of medications, habit formation, and bed time rituals and seeking help. Operationally, sleep hygiene practices consisted of a package of structured teaching on sleep hygiene for 20 minutes to a study group of 3-4 participants followed by demonstration of relaxation technique and return demonstration for 10 minutes to the study group. Pamphlets were issued on guidelines mentioned above along with sleep diary to assess compliance to taught package. The practices were reinforced during first posttest and participants were motivated during second posttest. SLEEP QUALITY It is the subjective expression of participants who had quality night sleep without any disturbances and full day time alertness as rated on Pittsburgh sleep quality index (PSQI). Operationally, a score of 5 or <5 is on PSQI considered good sleep quality. 21

PSORIASIS SEVERITY The intensity of psoriasis was assessed using simplified psoriasis area severity index (SPASI) for erythema, plaque, scaling and pruritus. Operationally, a score of 0 6 on SPASI is considered healthy and without condition of interest or very mild severity. ACTIVITIES OF DAILY LIVING Performance of certain needed activities which are carried out by study participants for feeding, bathing, grooming, toileting, locomotion, medication, home management, housekeeping and handling finance without help as measured by Katz and Lawton ADL scale. PATIENTS WITH PSORIASIS They are patients with plaque type of psoriasis (vulgaris) attending dermatology OPD of Sri Ramachandra Hospital. 1.7 Assumptions Good quality of sleep influences healing. Motivation improves the sleep practice. Patient is responsive. Need-for-help is based on the individual s perception of his own situation. 1.8 De - limitations Study and control group participants are from the same setting. Expression of sleep intensity was subjective. Age 21 to 70 years a wide range. 22