CHAPTER 1
PROBLEM AND ITS BACKGROUND
BACKGROUND OF THE STUDY
One of the problems encountered in the different parts of the world is the health of each and every individual. Medical study shows that there are many diseases that affect the life and the quality of living of every individual having these diseases. One of the known diseases that can be considered to have a significant effect on the quality of life of people is the prevalence of skin disease among patients. It has been found out that patients with these common skin diseases are mostly irritable, restless, and shy. These patients were treated for their skin problems only. The nurses were instructed by the Physician/ Dermatologist how to take care of the patient’s skin lesions and rashes but their emotional and psychological problem were not taken into consideration. With this, we were wondering whether the stress of having the skin disease affect their quality of life.
The concept of quality of life was developed to interpret data obtained about the impact of diseases on patients well being. This was fostered by the World Health Organizations (WHO) view of health as not merely the absence of disease or infirmity, but the ability of the person to lead a productive and enjoyable life. The World Health Organization (1994) has defined quality of life as:
“An individual’s perception of his or her position in life in the context of the culture and value systems in which he or she lives, and in relation to his or her goals, expectation, standards and concerns. It is a broad ranging concept, incorporating in a complex way the person’s heath, psychological state and level of independence, social relationships and their relationships to salient features of their environment.”
It usually utilizes a patient- administered questionnaire with items evaluating the effect of a disease and its treatment on patient’s symptoms, feelings and daily activities. (called domain) over a well-defined period of time. [3] The response options are arbitrary and employ a scoring system for interpretation. [4] Primarily, the main aim of this study is to determine how common skin diseases affect the quality of life of the patients in the local setting. By studying the impact of skin diseases on the quality of life of patients with skin diseases, the researcher hope to be able to modestly contribute to the enhancement of not only the nursing profession but also the medical profession and as well as the improvement of patient care quality to uplift their quality of life.
Objective of the Study
For this dissertation, the primary objective is to examine the effect of skin disease to quality of life of the patients. Specifically, this dissertation aims to achieve the following objectives:
Ø To conduct literature review on the fundamental concepts of quality of life.
Ø To explore how skin disease affects the quality of life of the patient.
Ø To identify the extent of the effect of the skin diseases among patients.
Ø To recommend a sound conclusion based on the findings and literature review gathered.
STATEMENT OF THE PROBLEM
Due to the increasing rate of people who are afflicted with the common skin disease, this study will be conducted. In this regard, the study aims to focus on the following questions:
THEORETICAL & CONCEPTUAL FRAMEWORK:
We theorize that skin diseases affect patients’ well-being and their ability to perform activities of daily living just like any other medical problem in the local setting. The concept of quality of life was developed to interpret data obtained about the impact of disease on the patient’s well being. This was fostered by the World Health Organization (WHO) view of health as not merely the absence of disease or infirmity, but the ability of the person to lead a productive and enjoyable life.
We conceptualize that quality of life can be measured by asking patients to answer a questionnaire which measures the effect of skin disease and its treatment on a patient symptoms, feelings and daily activities over a specified time.
The theoretical framework guiding this research is the concept that skin disease has an adverse impact on the quality of life of the patient.
HYPOTHESIS
This study will work on the following hypothesis:
“Skin disease has a significant effect on the quality of life of the patient.”
SIGNIFICANCE OF THE STUDY
Research is the best way to find solutions to nursing problems and to set standards for nursing practice. The problem that we have observed during our stints in hospitals and clinics led as to conceptualize a study that will answer our curiosity. The results of this study will therefore, benefit the following sectors;
NURSES- Expertise will increase as additional knowledge will be gain when educators will formulate effective psychological and emotional counseling which will be incorporated in nursing curriculum because of the output of this study.
NURSING EDUCATION- Nursing schools will be able to incorporate the results of this study into their nursing psychiatry curriculum.
PATIENTS or CLIENTS- there will be increased patients care quality. This in turn, will create increased patient satisfaction and will reflect a positive view of the hospital or clinic by the community.
MEDICAL EDUCATION- Medical schools will be able to incorporate results of this study into their medical psychiatry curriculum.
MEDICAL PROFESSION- Dermatologist will now be more aware and sensitive about their patient emotional and psychological problem brought about by their skin condition.
SCOPE AND DELIMITATION OF THE STUDY
As mentioned, the main objective of this study is to determine the effect of skin disease to the quality of life of patients in local setting. In this regard, the study was conducted among 263 patients with skin disease in Lucian Skin Center Clinic. A private dermatology clinic in Lucian City with a board certified dermatologist.
A primary limitation of the study is posed by the source of the sample population which is from one local clinic only.
DEFINITION OF TERMS:
· Quality of Life- it refers to the satisfaction derived by the respondents in terms of their performance in the activities of daily living namely; shopping/ marketing, the way they dress, socializing, participation in sports activities, going to work and school and performing sexual activity and cognitive functioning.
· Cognitive functioning- In some forms of psychometrics, particularly those related to the Myers-Briggs Type Indicator, the cognitive functions (sometimes known as mental functions) are defined as different ways of experiencing and thinking about the world. They are defined as “thinking”, “feeling”, “sensing” and “intuition”.
· Demographic profile- refers to the gender and age of the patient
CHAPTER 2
REVIEW OF RELATED LITERATURE
Quality of Life
Quality of Life is regarded as a multifaceted notion which is difficult to measure or defined. Nowadays, quality of life (SOL) is known to be the term commonly used by different individuals to specify how a happy or comfortable the life of a person is compared with other people. Conceptual and operational definitions have been used in independent quality of life studies, An appropriate conceptual definition for SOL covers all the important aspect of a client’s life such as their physical, psychological, spiritual and social being; their connection to the environment and their aspiration to what they will or can become.
Quality of Life is the degree of enjoyment or satisfaction experienced in everyday life. [5] In biblical times lepers had to live outside of society. In medieval times they had to ring a bell and call “unclean” wherever they went. Catching leprosy requires living in close contact for a long time and many labeled as lepers probably had diseases like eczema or psoriasis that are not infectious. The stigmatization of lepers was not a public health measure to control the spread but a reflection on how people view those with skin disease. Simply having skin disease is bad enough but the social response of others makes it much more difficult. [6]
As early as 1985, Quality of life has been employed as a major endpoint to evaluate and compare therapies along with clinical outcome measures such as efficacy and survival. [7] In cancer therapy, for instance, the emphasis is on the side-effect and quality of life. [8]
In dermatology where most patients are seen in the ambulatory, care setting survival is not a major end point [9] and because the therapeutic modalities here have comparable efficacies, the use of quality of life became even more important. Several well-validated dermatology-specific questionnaires have been developed, the first being Finlay’s Dermatology Life Quality Index in 1983.
RELATED STUDIES:
The effect of skin diseases on quality of life in patients from different social and ethnic groups in Cape Town, South Africa. Skin diseases can greatly affect the quality of life (Sol). Little is known, however, of their impact on Sol in the developing world. This study was designed to assess the effect of skin diseases in such a setting.
A questionnaire survey of patients using the Dermatology Life Quality Index (DELI) modified to the cultural needs of the population. The adapted instrument was translated into Afrikaans and Xhosa. Six hundred and seven patients attending general dermatology clinics at Groote Schurz Hospital and 53 controls were recruited. Influences on Sol of clinical severity, employment, education, age, sex, and home language were examined.
Participants included 313 (52%) English-speaking, 215 (35%) Afrikaans-speaking, and 79 (13%) Xhosa-speaking dermatology patients. Independent risk factors for having a high disability score were dermatologists’ assessment of severity, younger age, unemployment, and language (odds ratio, 0.13; 95% confidence interval (CI) of 0.03–0.5 for Xhosa speakers compared to Afrikaans speakers). Gender was not associated with a high score, but females were more likely to report effects of skin disease on self-esteem, clothing choice, treatment problems, and
In this multicultural setting, social class and language group, but not gender, influenced the impact of skin disease on overall Sol. Xhosa speakers were apparently less affected than other patients. This could be due to cultural differences in the experience of skin disease and in the perception of disability, or to biases in questionnaire responses. Anxiety and depression were relevant dimensions of Sol in this study and should be considered for inclusion in future research. The adapted and translated DELI was valid and reliable. [10]
Eczema impairs quality of life in children to same extent as kidney disease. Children with serious skin conditions feel their quality of life is impaired to the same extent as those with chronic illnesses such as epilepsy, renal disease and diabetes, according to research published in the July issue of British Journal of Dermatology.
A team of Scottish researchers surveyed 379 five to 16 year-olds, who had been suffering from skin diseases like acne, eczema and psoriasis for more than six months, together with their parents.
They asked the children and their parents how much the condition impaired the child’s quality of life when it came to factors such as pain, loss of sleep, dietary restrictions, interference with school and play, friendships, teasing and bullying and medical treatment.
They then compared the quality of life scores given by the parents of 161 children with chronic diseases in the same age group. Only six of the 546 parents approached by staff at Nine wells Hospital in Dundee and Perth Royal Infirmary preferred not to take part in the research. All the children included were attending outpatient clinics at the two hospitals.
Key findings included:
· The children in the study said that psoriasis (red scaly patches) and eczema were the two skin conditions that caused them the greatest distress. Both resulted in 31 per cent impairment in their quality of life score. This was followed by urinary (itchy allergic skin rash) at 20 per cent impairment and acne at 18 per cent impairment.
· From the parent’s perspective, eczema was the biggest skin problem at 33 per cent, followed by urinary at 28 per cent, psoriasis at 27 per cent and hair loss at 19 per cent.
· When they compared the overall results for the children with skin diseases and chronic illnesses, the researchers found that the condition that had the worst affect on quality of life was cerebral palsy at 38%. Generalized eczema and kidney disease both scored 33%t.
· Cystic fibrosis also made the top five (32%t), followed by urinary and asthma (28%), psoriasis (27%), epilepsy and bed wetting (24 %), diabetes, hair loss and localized eczema (19%) and acne (16%).
· When children with psoriasis, and their parents, were asked to chose the things that affected the child’s quality of life most, parents rated bullying third and children rated bullying fourth.
· Teasing or bullying was also a key concern for the 11 children with hair loss, with six of the children and nine of the parents putting it first on their list.
· The biggest concern for children with eczema, psoriasis and tiara was itching or pain, while children with acne or warts said that embarrassment was their main worry.
“Our study shows that children with chronic skin diseases – and their parents – reported the same level of quality of life impairment as the parents of children with many other chronic illnesses” says lead author Dr Paula Beattie from the Royal Hospital for Sick Children in Glasgow.
“Skin diseases are often more obvious to other children than chronic diseases such as asthma or diabetes and are more likely to lead to alienation, name calling, teasing and bullying.
“Some skin conditions can also disturb children’s sleep and cause lack of self-confidence, embarrassment and poor self-esteem, especially as they get older.
“Although skin diseases may not shorten life in the same way as serious conditions like cystic fibrosis, they can cause children as much, if not more, distress in their everyday lives.”
According to co-author Dr Sue Lewis-Jones, Consultant Dermatologist at Nine wells Hospital, Dundee and British Skin Foundation spokesperson, measuring quality of life can be a powerful political tool as it provides the patient’s perspective on the health impact of different diseases.
“This is particularly important when arguing for vital resources, especially in dermatology, as skin diseases are not considered to have as much of an impact on people’s lives as other illnesses.
“Our study clearly shows the profound effect skin diseases can have on children’s quality of life and we hope that our findings will raise awareness of the problems they face and encourage greater sensitivity towards them.”
Nina Goad of the British Skin Foundation agrees: “All too often, people think of skin diseases like eczema as nothing more than a mere annoyance. Sadly, this simply is not the case.
“We frequently hear of children who cry all night because of their itchy, flaky skin. This in turn leads to a lack of sleep and extreme emotional upset for their parents too.
“The psychological impact of visible skin diseases can be massive, with children facing bullying because of the way their skin looks. We even hear of children not wanting to swim or take part in sports because they don’t want to have to reveal their skin in the changing rooms. Of course, this can lead to enormous stress for the patient’s family also.
“This is why as a charity we are dedicated to raising money for research to end the diseases that blight millions of people’s lives in the UK.” [11]
CHAPTER 3
RESEARCH METHODOLOGY
RESEARCH DESIGN
This study uses the descriptive approach. This descriptive type of research will utilize observations in the study. To illustrate the descriptive type of research, Creswell (1994) will guide the researcher when he stated: “Descriptive method of research is to gather information about the present existing condition. The purpose of employing this method is to describe the nature of a situation, as it exists at the time of the study and to explore the cause/s of particular phenomena.”
The research described in this document is based on qualitative and quantitative method. The qualitative method permits a flexible and iterative approach, while the quantitative research method permits specification of dependent and independent variables and allows for longitudinal measures of subsequent performance of the research subject. During data gathering the choice and design of methods are constantly modified, based on ongoing analysis. This allows investigation of important new issues and questions as they arise, and allows the investigators to drop unproductive areas of research from the original research plan.
For this study, the research also uses correlation approach. The correlation kind of research method is use due to ethical problems with experiments. Moreover, it is also used due to practical problems with experiments. Moreover, inferring causality from correlation not actually impossible, but very difficult. This mode of study is widely applicable, cheap, and usually ethical. Nonetheless, there exist some “third variable” issues and measurement problems. The correlation research refers to studies in which the purpose is to discover relationships between variables through the use of correlation statistics (r). The square of a correlation coefficient yields the explained variance (r-squared). A correlation relationship between two variables is occasionally the result of an outside source, so we have to be careful and remember that correlation does not necessarily tell us about cause and effect.
RESPONDENTS OF THE STUDY
To ensure that only pertinent data will be gathered, the researcher opted to have respondents who were consecutive patients at Lucian Skin Center Clinic. A private dermatology clinic in Lucian City with a board certified dermatologist. These patients must be 15 years old and above, whether old or new and has consulted the clinic because of their skin diseases. For this study, 263 patients have been considered.
RESEARCH INSTRUMENT:
For this study, we decided to use a survey-questionnaire approach. Herein, we reviewed 3 different well validated dermatology-specific quality of life tools for possible translation. Both developed in the US, the Dermatology Specific Quality of Life (DS8QL) [12] had 52 items for acne and contact dermatitis cohorts while the revised SKINNED [13] had 29 item tests for patients with any skin disease. The revised Skinned Categorized domain/scale into emotion, symptom, and functioning, and had 5 responses choices. Dermatology Life Quality Index [14] [15] [16] (DELI), a tool developed in UK, was similar to Skinned in terms of generic coverage, domains, and responses choices but consisted only of 10 items which fit on a single sheet of paper, and was those chose for translation. Quality of Life research measures the effect of a disease and its treatment on a patient’s symptoms, feelings and daily activities over a specified time. The Dermatology Life Quality Index (DELI) questionnaire is a non-skin disease specific Quality of Life tool developed by Dr. Finlay. It consist of 10 questions and can be analyzed under the following headings: Symptoms and feelings (items 1 and 2), daily activities (items 3 and 4), leisure (items 5 and 6), work and school (item 7), personal relationships (item 8 and 9), and treatment (item 10). It is calculated by summing the score of each question (scored from 0 to 3) resulting in a maximum of 30 for the 10 items and a minimum of 0. The higher the score, the more quality of life is impaired.
TRANSLATION:
The original questionnaire was sent to 4 independent bilingual (English and Filipino) translators and their output were later “translated-back” by a bilingual lay panel consisting of 2 persons. The first item refers to the Symptoms (itchiness, pain, discomforts) while the second item on “hay”, which loosely translates in English as “embarrassments”. Item 3 evaluates the effect on shopping or household chores while item 4 in the way of dressing. The fifth item is on social and leisure and the sixth item on sports and exercise. Items 7, 8, 9 and 10 concerns on work, school, relationships, Sexual difficulty, and treatment respectively. The following modifications were noted: (1) the tool was renamed IKEAS (Index nag Kalidad ng Pamumuhay ng may sakit sa balat), (2) the general patient data was omitted on the questionnaire except age, sex, and diagnosis to save on space, (3) a confidentiality clause was inserted on the introductory statement and includes the aim of the study. (4) 2 Filipino words (“Gaanos” and “Paano”) were used to encompass “How much” in the original, (5) and although the attempt was to do a literal translation without any loss of the concept, for item on household chores of house keeping, buying at the market (“Pamamalengke”) was included; for item on leisure activities, watching movie (“Panunuod ng Sine”) was given as an example; For the item on sports, the word “Ehersisyo” (Exercise) was included; “Sex” was used in the context of sexual difficulties in the original; and on the item relationship, “Asawa” (Spouse) was used for “Partner”. Response choices scales were structured similar to the original and used the same scoring system (Likert scale system): “Sobra-sobra” (score=3), “Sobra” (score=2), “Medyo/Oo” (score=1), “Wala/Hindi” (score=0), “Walang kinalaman” (score=0), and no answer (score=0). A higher score (total=30) indicated a lower unfavorable quality of life.
DATA COLLECTION:
The researchers collected the data from Lucian Skin Centers Clinic’s patients who are suffering from skin disease. Both the inclusion and exclusion criteria for patient selection were adopted from the source. As mentioned, consecutive patients, age 15 and above, whether old or new, consulting for any skin disease were included in the study. For this research, the paramedical staffs were recruited as control subjects.
The time needed to complete the questionnaire ranged from 1 to 36 minutes with the mean at 5.23 minutes. However, it is significant to note that 205 respondents (78%) took less than 5 minutes and another 39 (15%) took between 5 and 10 minutes to answer the questionnaire. This leaves only 19 (7%) who took more than 10 minutes to answer the questionnaire.
DATA PROCESSING AND ANALYSIS
Consecutive patients who passed the entire inclusion and exclusion criterion were politely asked to answer the IKEAS (translated questionnaire) after giving their permission.
When all the data were at hand, we computed the reliability of our translated questionnaire using the Cranach’s alpha Coefficient and then we analyze our findings on the effect of the skin disease on the quality of life of patients with skin disease and compare the findings with those without skin diseases. There was a significant difference between scores of the patients (6.89, SD: 4.55) and controls (0.89, SD: 1.8) (p=0.000), demonstrating construct validity.
RELIABILITY TEST TOOL:
When analyzing the reliability of your instrument, the best is to retest the subjects using the same instrument to see if the subjects are consistent with their answer. But researchers have devised a formula to compute the reliability of a survey instrument. The reliability test is called Cranach’s alpha coefficient. Its formula is:
= n1 + n2 = N (total number of patients)
= Pearson Correlation
Validity test total:
To test for validity of the instrument that we uses, we compared the score of patients with that of the healthy controls and test for its validity using Mann Whitney U-test . Its formula is:
= total number of males
= total number of females
= total rank of males
Test formula:
= is the number of observation in group g
= is the rank (among all observations) of observation j from group i
= is the total number of observation across all groups
= is the average of all the equal no (+ 1) /2
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