Lupus in African American Women in Southern States

CHAPTER 1

Introduction

Systemic lupus erythematosus is increasingly becoming common in the United States. No other population has witnessed more steep increases in the incidence rate of this disease than African American women of child bearing age. Research indicates that it is this group that manifests with the most severe symptoms, has the highest mortality rate and has the poorest prognostic outcomes (NMA, n.d). With a population of 109,083,752 people (US Census Bureau, 2008) the southern states have a huge proportion of African American women and potentially harbour a huge percentage of persons with SLE. Research is needed to quantify the extent of the disease in this region as well as map other related aspects so that effective mitigating measures can be instituted.

This paper looks at various aspects of the disease, especially as pertains to the prevalence, incidence, aetiology and clinical manifestations among African American women in America’s southern states. The problem statement is presented in the first chapter. Thereafter, the purpose statement of this research is concisely detailed followed by the significance of the study. Here, credible reasons which succinctly explain why this study was warranted are given out. Having dispensed with this, a brief discussion about the nature of the study is offered. Next, the four research questions which underpin this study are listed and thereafter the definitions, assumptions, scope, limitations and delimitations of this study respectively given.

Chapter two gives a comprehensive review of literature. Here, the basic concepts of the disease are first given followed by a description of the different types of the disease, common signs and symptoms, and various aetiological factors commonly believed to occasion the disease. Additionally, aspects of diagnosis, treatment, prognostic outcomes, and prevalence studies in America are offered. A brief summary of the mortality due to SLE as well as a comparison of clinical manifestations across the different races is offered. Finally, existing gaps in literature are appraised and a brief rationale behind this study given.

Chapter three details the research methodology that was used to conduct the study. After a recapitulation of the problem statement, an overview of the chapter is offered followed by the research design. The appropriateness of the chosen design, research strategy, data collection techniques, description of participants, inclusion and exclusion criteria, and measures of validity and reliability are all enumerated. Additionally, techniques used in the analysis of the obtained data are detailed before a brief conclusion is made.

The next chapter, Chapter 4, presents the results obtained in the study. The findings are given and discussed. Finally, chapter 5 gives a summary of the major findings, the conclusion, limitations, implications and recommendations for future research.

Problem Statement

            Systemic lupus erythematosus or SLE – important disease, mortality, incidence in states, prognostic outcomes

            African American population – high incidence rates

            Interventions- success is primarily hinged on early diagnosis

            Literature is scanty and old therefore data

Purpose Statement

The purpose of this grounded theory research was fourfold. First, the study sought to determine the prevalence of SLE among African American women in the Southern States of America in 2007. Here, the objective was to determine how common SLE is within the population of these states. Secondly, the study set out to ascertain the incidence of SLE in African American women in America’s southern states in 2007. The principle aim was to definitively ascertain the risk that African American women in these sates stand of developing SLE.

Thirdly, the study was carried out in order to discover the factors which predispose this population to SLE. Accordingly, we sought to determine the role played by environmental, genetic, chemical and hormonal influences in the aetiology of SLE among African American women in the southern states of America. Finally, this study sought to accurately and exhaustively characterize the symptoms commonly associated with SLE among African American women in America’s Southern states and the extent to which they occur. Comparison with similar symptoms among other ethnic populations resident in these states would provide crucial information regarding susceptibility of the group of interest.

Significance of the study

This study is important in several ways. First, there is a yawning literature gap on the prevalence and incidence rates of SLE among African American women in America’s southern states. Additionally, data that could be used to extrapolate these rates is not recent. By determining the incidence and prevalence rates of SLE among African American women in this region, this study will not only fill this literature gap but will also provide recent data that will be vital for health authorities and organizations in their planning activities.

Results of this study will additionally benefit epidemiologists, insurance firms, HMOs, and the government to better plan intervention programs and strategies as may apply. The data will enable doctors and other health workers to be better able to comprehend the nature of SLE diseases among this population.

Nature of the Study

This study was an exploratory research that used both qualitative and quantitative approaches. Qualitative approaches were used to gather data from primary sources. In this regard structured questions employing the Delphi method was used. Quantitative data was obtained from secondary sources including standard reference works, books, the internet and medical databases, periodicals such as professional journals and government sources. Data was also scoured from commercial sources, demographic and census updates and online vendors.

Research Questions

This study sought to answer the following questions;

1. What is the prevalence rate of SLE among African American women in the Southern States of America?
2. What is the incidence rate of SLE among African American women in America’s Southern states?
3. What are the important aetiological factors underpinning SLE occurrence in America’s Southern States?
4. Which symptoms are associated with SLE among African American women in America’s Southern states and to what extent?

Definitions

The prevalence rate was defined as the “proportion of individuals in [the] population having a disease. Prevalence is a statistical concept referring to the number of cases of a disease that are present in a particular population at a given time” (MedicineNet.com, 2008)

The definition of incidence rate given by Biology Online 2008 was used. Incidence rate is defined as “the rate at which new events occur in a population. The numerator is the number of new events occurring in a defined period; the denominator is the population at risk of experiencing the event during this period”

Assumptions

In carrying out this study, the following assumptions were made:

• That the test instruments used in the study accurately and consistently measured the phenomenon in question
• That the respondents interviewed gave responses that were accurate and precise
• That the measures put in place eliminated all forms of bias
• That measures used to ensure data validity and reliability were beyond reproach

Scope, Limitations and Delimitations

The scope of this study is limited to the study of the prevalence, incidence, symptoms, and predisposing factors of SLE among African American women in the Southern States of America. Eligibility for inclusion into the study was positive diagnosis for one of the following: systemic lupus, discoid lupus (both cutaneous and subacute cutaneous), drug induced systemic lupus, lupus cerebritis, and lupus nephritis. Other inclusion criteria included sex, age, race and residency.

Only African American women between the ages of 18 to 64 and who currently reside in the following areas were included in the study: the South Atlantic States of Florida, Georgia, North Carolina, South Carolina, Virginia, West Virginia, Maryland, Washington D.C., and Delaware; the East and Central and West South Central States of Tennessee, Kentucky, Alabama, Mississippi, Arkansas, Louisiana, Texas and Oklahoma.

 Persons with non-definitive diagnoses and those with inactive disease were excluded from the study.

 Limitations facing this study included scarcity of recent and exhaustive data pertaining to SLE in the southern states, insufficient time allocated for the study, and financial constraints.  With regard to delimitations, the Delphi study was confined to experts in the fields of rheumatology and immunology. Reviewed literature was less than fifteen years old and was peer refereed. Additionally, we chose the grounded theory model as our design.

Chapter Summary

            The first chapter broadly enumerated the issues that will be dealt with in the rest of the study. It was noted that

CHAPTER 2: LITERATURE REVIEW

Chapter Summary

Systemic lupus erythematosus or SLE is a complex, recurrent and chronic autoimmune disease which commonly affects multiple organs (Medscape, 2008). The idiopathic nature of SLE is alluded to by Kristjansdottir et al, (2000) and its distinctive mark, the erratic damage of many tissues including the nervous system, blood vessels, skin, joints, and the kidney, reported in Medscape (2008).

SLE manifests itself in different forms. Systemic SLE is the commonest form of this disease and it usually affects the skin, joints and nearly all body organs and systems (NMA, n.d., Medscape, 2008). Discoid lupus manifests as a persistent skin rash which usually occurs on the neck, face and scalp and can be either cutaneous or subacute cutaneous. Drug induced systemic lupus occurs after the use of some medication (NMA, n.d.) while lupus cerebritis is the inflammation of the central nervous system.  Neonatal lupus is an uncommon disease affecting newly born children whereas lupus nephritis affects the kidney. The basic feature of all these disease forms is the characteristic loss of immunological tolerance to self antigens (Huang et al 2001)

Signs and symptoms of SLE

As will be seen shortly, the manifestations of SLE vary widely between African American and Caucasian populations. However, common signs and symptoms manifesting with SLE include inflamed organs with acute and usually prolonged fatigue, skin rashes, elevated photosensitivity, kidney damage and swollen painful joints (arthritis). Other common signs and symptoms include alopecia, unexplained fever and low blood count (Medscape, 2008, NMA, n.d.)

Causes/ aetiology of SLE

As stated before, the aetiology of SLE remains unclear. Nevertheless, it is believed that environmental factors, genetics, hormonal influences, and a dysfunctional immune system are the principal aetiological forces behind SLE (NMA, n.d.)

Environmental factors implicated in the pathogenesis of SLE include stress, viruses, chemicals and the sun. Several studies have found a correlation between the severity of SLE symptoms and levels of stress (NMA, n.d.). Traynor et al (2000) and Judith et al (1997) have described the role of UV light in accumulating some cellular products which interact with auto-antibodies that have been implicated in the initiation of SLE. Important also is the reported role of the Epstein-Barr virus in the causation of SLE (Sestak, 2008)

Familial and twin studies strongly suggest the importance of heredity as an aetiological agent of SLE (NMA, n.d.). As Sestak (2008) reports, monozygotic twin pairs have a 40 percent concordance as opposed to a paltry 4 percent observed in dizygotic twin pairs. Additionally, it has been variously observed that with SLE inheritance, the Mendelian pattern is not observed. This observation has been attributed to the presence of a distinct variety of genes, the so-called ‘lupus genes’. Linkage and association studies make use of micro satellite markers and SNPs respectively have vastly contributed to the knowledge about the role of genetics in SLE and promise to definitively determine the SLE genes (Sestak 2008). Petri et al (1995) report that there is a correlation between class II alleles DRB1*1501/15.3 and DQB1*0602 and SLE in African Americans.

Hormonal influences have also been described as playing a pivotal role in the initiation of SLE especially among women. Statistics indicate that eight out of every ten cases of SLE occur among women of a childbearing age (15 to 45 years}.only ten percent of men in this age category are diagnosed with the disease. Conversely, the M;F ratio for persons aged over 50 years is nearly co-equal, suggesting that hormonal influences are important in instigating SLE in women falling in this age bracket. This view has been reinforced by the observation that the symptoms of SLE markedly increase in pregnancy states and before menstruation, suggesting also the possible role of oestrogen in SLE initiation (Essig, 2003; Petri, n.d. and Seppa, 2002).

Besides genetics, hormonal influences and environmental factors, irregularities in the immune system have often been cited as a prime aetiological basis for onset of SLE. Cell mediated immune responses, destruction by auto-antibodies as well as deposition of immune complexes are all processes underpinning the manifestation of SLE symptoms. Antinuclear antibodies are present in large amounts in SLE patients and destroy cells once they get attached to the cell membrane. Genetic predisposition leads to inefficiencies in destruction of immune complexes leading to their accumulation in disparate body tissues hence instigating inflammatory processes (Graciella, Brooks, Reveille, and Risse, 1999)

Diagnosis of SLE

SLE is not easily diagnosed as it has no definite diagnostic marker. However, a host of clinical and laboratory criteria has been defined by the American College of Rheumatology (ACR) and is used to diagnose the disease (Tan et al, 1982; Hochberg, 1997) (see table 1, appendix). Though reportedly inaccurate in subjects with less severe disease forms, the ACR criteria has been variously reported to have high sensitivity and specificity (Ferraz et al, 1994; Stahl-Hallengren, JONSEN, Nived and Starfelt, 2000; Gilboe & Husby, 1999).

An antibody titre of 1:40 in subjects presenting with multi-organ system involvement is indicative of SLE Subjects with this titre but who fail to meet the other diagnostic criteria  are required to undergo a battery  of other tests among them anti dsDNA and anti Sm antibody tests (Gill, Quisel, Rocca & Walters, 2003).

Treatment of SLE

No cure for SLE currently exists. Instead, therapeutic approaches are primarily geared at lessening the pain experienced in the joints as well as reducing the swelling. Most commonly used medications in this regard are the non-steroidal anti-inflammatory drugs or NSAIDs and hydroxychloroquine. The latter is of utility in reducing the characteristic swelling witnessed in these patients. However, NSAIDs have been reported to induce stomach ulcers and nephrological damage with prolonged usage. Hydroxychloroquine is also known to lead to destruction of the retina. Corticosteroids are more powerful agents and are resorted to in the event of failure of NSAIDs and hydroxychloroquine. However, their potent side effects are well documented and possibly life threatening. These side effects include hypertension, cataracts, arterial destruction and osteologic changes (NMA, n.d)

Stem cell transplants, antibody infusions, and chemotherapy are some of the other therapeutic approaches available for patients in whom internal organs are affected by SLE. Cyclophosphamaide has been demonstrated to offer better prognosis for such patients when administered at a high dose. However, infertility coupled with destruction of bone marrow cells has been reported as an undesired effect of this treatment. Current practices therefore incorporate infusion of premature stem cells as a mitigating measure (NMA, n.d.)

            Reports form the 2008 EULAR Congress in Paris additionally details other treatment approaches together with their relative efficacies. As Kay (2008) reports, B-cell-directed therapies offer a lot of promise for SLE patients. Rituximab (RTX), belimumab, and epratuzumab are some of the drugs which have been assessed for their potential to offer SLE patients relief. Eparatuzumab is a monoclonal antibody which attaches onto CD 22 present on B cell surfaces. Using British Isles Lupus Assessment Group (BILAG) scores, Petri et al (cited in Kay, 2008) found that epratuzumab-treated groups displayed greater reduction in disease compared to the control groups. Jónsdóttir et al (cited in Kay, 2008) have shown RTX to result in better outcomes than intravenous CYC.

Besides the three compounds, induction therapy has been suggested for treatment of patients with lupus nephritis. Several studies have demonstrated the efficacy of this technique. Ginzler et al (cited in Kay, 2008) found non-induction therapy using mycophenolate mofetil MMF to provide better outcomes than monthly IV CYC. Similarly, the Aspreva Lupus Management Study (ALMS) (cited in Kay, 2008 ) demonstrated that oral MMF produced consistently better prognoses than oral azathioprine and IV CYC. Isenberg et al (cited in Kay, 2008) also found induction therapy using MMF to produce better outcomes. Additionally, MMF has been found to preserve ovarian function better than IV CYC (Laskari et al cited in Kay, 2008).

Outcomes/prognosis

            SLE leads to disability in every one out of five people with the disease. Additionally, 20 per cent of afflicted persons succumb to the disease. Among African Americans, persons with SLE have on average lower quality of life (qol) as compared to their Caucasian counterparts (NMA n.d.)

Prevalence of SLE in the U.S.A

According to the NWHIC, 1.4 million people are currently afflicted by lupus in the USA. NMA n.d. puts this figure at 2 million, with 16,000 new diagnoses annually. This represents a prevalence rate of 0.51% or an estimated 1 in 194 people (WD, 2008).

In a population-based screening study, Johnson, Gordon, Hobbs and Bacon (1996) estimated the prevalence of 0.2% among women aged between 18-65 years in the U.K.  Lawrence et al (1998) found the prevalence of SLE in the U.S to be stand at between 0.04 and 0.05%. This study considered all the cases of SLE including the incomplete SLE type. Lehman (2003) estimated that between 5,000 and 10,000 children in the U.S. have SLE. Crude incidence rate for SLE in Allegheny County in Pennsylvania was estimated at 0.4 percent, 3.5 percent, 0.7 percent and 9.2 percent for white men, white women, African American men, and African American women respectively (McCarty et al, 1995).

SLE infection in African American Women

It is generally recognized that SLE affects women more than it affects men. Studies indicate that on average, women are ninety percent likelier to contract lupus than men (F: M ratio 9:1) (Lawrence et al, 1998; McCarty et al, 1995; NMA, n.d). Statistics also indicate that SLE is more common among women between the ages of 15 and 45. SLE has also been reported to afflict African American women three times more than it does Caucasian women (National Women’s Health Resource Canter, 2006).

Besides, the disease is more serious in this population and occurs earlier than in Caucasian women (Kelly, Moser and Harley, 2002). A review of medical records by McCarty et al (1995) reported that African American women are 23 times more likely to be diagnosed with lupus than white men. Asides from affecting more African American women than whites, the former group manifests more severe symptoms and steep incidence rates. (Lawrence et al, 1998; McCarty et al, 1995; NMA, n.d)

SLE Mortality

            SLE is characterized by increasingly high mortality rates most notably among African American women. (CDC 2002) reports that between 1979 and 1998, deaths attributable to the disease increased by 37 %. Similarly, there was a rise in the crude death rate from 39 to 52 per 10 million population. Over the same period also, a total of 22,861 deaths arising from SLE were reported among African Americans, with an all time high increment of 70 percent in deaths of African American women with SLE and between the ages of 45 and 64 years. (Table 2 and figure 1, appendix)

            Close to 40 percent of all SLE deaths over the period stated occurred among middle aged persons and an annualized trend where crude death rates rose was observed. Additionally, these rates rose more than five times among women than men. For every three crude deaths, two occurred among African Americans. African American women between the ages of 45 and 64 had the highest death rates compared with other groups (CDC, 2002)

Comparison of SLE Symptoms across Races

            African Americans have been noted to display more severe disease forms than Caucasians. On average, African Americans are more likely to have kidney problems with higher likelihoods that these will result in nephritic syndromes, kidney failure and or insufficiency.

            The Lupus Cohort Study was able to characterize the clinical manifestations of SLE by race. In this prospective longitudinal study, results obtained indicate that more African Americans with SLE typically manifest with alopecia, avascular necrosis (AVN), discoid lupus, hematuria, and lymphadenopathy than whites. 62%, 14%, 14%, 38%, 41%, and 42% respectively of African Americans manifest with these conditions compared to 49%, 7%, 19%, 27%, and 29% of whites with SLE respectively (Petri, 1998).

            On the other hand, malar rash, mouth ulcers, photosensitivity, and sjogren’s disease are common among whites than African Americans. Occurrence of these manifestations among the two populations are found to stand at 63%, 46%, 69%, and 19% respectively for whites as compared to 52%, 30%, 47% and 12% respectively for African Americans (Petri, 1998).

Gaps in research

LUMINA study

Population in the southern states

Why does SLE affect African Americans more than it does whites?

Southern states no definite literature

CHAPTER 3; RESEARCH METHODOLOGY

Purpose Statement

The purpose of this grounded theory research was fourfold. First, the study sought to determine the prevalence of SLE among African American women in the Southern States of America in 2007. Here, the objective was to determine how common SLE is within the population of these states. Secondly, the study set out to ascertain the incidence of SLE in African American women in America’s southern states in 2007. The principle aim was to definitively ascertain the risk that African American women in these sates stand of being developing SLE.

Thirdly, the study was carried out in order to discover the factors which predispose this population to SLE. Accordingly, we sought to determine the role played by environmental, genetic, chemical and hormonal influences in the aetiology of SLE among African American women in the southern states of America. Finally, this study sought to accurately and exhaustively characterize the symptoms commonly associated with SLE among African American women in America’s Southern states and the extent to which they occur. Comparison with similar symptoms among other ethnic populations resident in these states would provide crucial information regarding susceptibility of the group of interest.

Chapter Overview

This chapter will begin with an outline of the research design adopted in this study. We will thereafter state reasons that explain the suitability of the selected design for this particular study. This will be followed by an outline of the strategy that was followed when conducting the study and a delineation of the research methodology used given. In the research methodology, various tools used to collect the data will be given, the accessible population defined, sample size stated and the sampling techniques used. Additionally, the measures used to ensure the validity and reliability of the collected data will be clearly enumerated and techniques used in data analysis and presentation stated.

Research methodology

Research Design

    A Research design is an outline detailing the techniques and processes to be used in the collection and study of data (Zikmund, 2003 p.65). It enables researchers be certain that the data obtained will enable them answer the research question as clearly as possible (David de Vaus, 2001).

In this study, data was obtained through the survey method and archival analysis of secondary data. In the survey method, data was obtained through the use of questionnaires which utilized the Delphi method. A purposive (or judgemental) sampling technique was utilized to select the respondents for the Delphi based on the expertise they possess.  Such a non-probability sampling technique allowed an objective observation of the important events from all angles.  As Neuman, (2000 cited in Saunders et al., 2003, p. 175) asserts, this technique is best suited and “often used when working with a very small sample and when the researcher wishes to select cases that are particularly informative”

Secondary data is information originating from a source other than the researcher (Sabic, 2007a/2007b; Sipchem, 2006).Sources of secondary data used included government statistics, case studies, peer reviewed and refereed journals and other forms of quantified data on SLE

            Both qualitative and quantitative data will be studies – primary and secondary data. Quantitative – number of African American women with SLE in the southern states – compute prevalence and incidence

Database – study

Delphi study – experts discuss – give their views on RQ 3, together with clinical data

Appropriateness of the Design

Research Strategy

Archival analysis of secondary data was first carried out. Thereafter, surveys were conducted on the accessible population. Questionnaires were next administered to the selected respondents. Logging of collected data was done concurrently with all the above activities. Once these were accomplished, data verification, transformation, and database creation were conducted. Subsequent efforts focused on analysis and interpretation of the collected data.

Research Method

Procedure for Data Collection

Primary data was gathered using questionnaires. Secondary data was obtained from books, internet sources, case studies, government statistics, and other forms of quantified data on SLE.

Structured Interview Questions

            The Delphi method was used in constructing effective structured interview questions. As Adler and Ziglio (1996) assert, the Delphi method is the use of group communication among a panel of geographically scattered experts. The primary objective behind the use of the Delphi Method is the collection and distillation of information from these experts using questionnaires mixed with controlled opinion feedback. As an exploration technique used in forecasting, the Delphi method is mono-variable in nature (Helmer 1977 cited in IIT) and allows discussion among the selected experts to take place without the attendant social interactive behaviours that characterise conventional group discussions and which curtail opinion formation (Helmer, 1975 cited in IIT).

            The Delphi method, in its elementary form, consists of a string of questionnaires dispatched to a selected panel of experts using mail or the internet. These questions are meant to provoke   answers from each of the experts. Additionally, the questions make it possible for the experts to perfect their opinions. Used in this way, the Delphi method is able to surmount the encumbrances which bog down the usual discussion groups. A key attribute of the Delphi method is anonymity. In this regard, comments, forecasts and other opinions expressed are not credited to the person who expressed them; rather, they are submitted to the group without any identifying information other characteristics associated with the method include controlled feedback and statistical response. (Fowles 1978 cited in IIT).

            In this study, the procedure outlined by Fowles (cited in IIT) was adopted. Briefly, this method involves:

1. Establishment of a team to carry out and oversee the method.
2. Selection of panels of experts in the petrochemical industry in Saudi Arabia to take part in the survey

• Preparation of questionnaires to be used in the primary stage of the Delphi

1. Examination of the prepared questionnaire to ensure correct wording– in this regard, simple conversational language will be used and leading and loaded questions avoided. Concomitant with this, double-barrelled items, assumptions and taxing questions will be avoided (Zikmund, 2003 p.361).
2. Conveying of the questionnaire to the experts
3. Scrutiny of responses received from the experts

• Development of questionnaires for the second stage of the Delphi
• Conveying of the second stage questionnaires to the experts

1. Scrutiny of the responses obtained from the second stage of the questionnaires
2. Report writing by the oversight team on the findings

Steps VII through IX can be repeated over and over again as needed.

Brockhoff (1975 cited in IIT) asserts that a small group of about four panellists can carry out the task effectively.

To make certain that the wording of the questionnaire was appropriate, care was taken in the ordering of questions in order to eliminate any forms of order bias. Back translation was undertaken in order to make the questionnaire more culturally sensitive and to eliminate inconsistencies that may be noticed by foreign experts.  In back translation, a questionnaire that has been translated from one language is translated back into the initial language by a second independent translator (Zikmund, 2003 p.361).  Only questions deemed to be accurate and relevant were included in the survey and open-ended questions were used primarily because this was an exploratory research. Finally, ambiguities and vagueness in the questions asked were eliminated through use of concise and precise language.

            Once all this was done, the first questionnaire was forwarded to the Delphi group experts. Responses obtained from this questionnaire were subsequently analyzed and thereafter a second set of questions prepared. In preparing these questions, the considerations previously outlined were factored in so that an appropriate and accurate response could be obtained.  This questionnaire was then forwarded to the experts and analysis of the second set of responses carried out once feedback was obtained. The final step comprised the preparation of a report based on the opinions of the experts (Fowles 1978 cited in IIT).

Participants

            The population of interest in this study was African American women with SLE in the Southern States of the US including the South Atlantic States of Florida, Georgia, North Carolina, South Carolina, Virginia, West Virginia, Maryland, Washington D.C., and Delaware. Others were African American women with SLE in the East and Central and West South Central States of Tennessee, Kentucky, Alabama, Mississippi, Arkansas, Louisiana, Texas and Oklahoma.

Participants in the Delphi study were medical experts in the field of immunology and rheumatology

Sample size

We studied a total of 120 African American women with SLE. For the Delphi, a total of 8 experts grouped into two groups of four each were given the questionnaire.

Sample Description

Respondents chosen for the Delphi were experts and opinion leaders in the fields of immunology and rheumatology.

SLE patients

Inclusion and Exclusion Criteria

            Eligibility for inclusion into the study was positive diagnosis for Systemic lupus, discoid lupus (both cutaneous and subacute cutaneous), drug induced systemic lupus, lupus cerebritis, and lupus nephritis. Other inclusion criteria included sex, age, race and residency. As such, only African American women between the ages of 18 to 64 and who currently reside in the areas mentioned were included in the study. Persons with non-definitive diagnoses and those with inactive disease were excluded from the study.

Sampling

Sampling is defined as the process where entities from the population of interest are picked. Here, the primary objective is to evaluate the sample picked so that generalizations can be made about the population from which the samples were picked (Trochim, 2006). Non-probability sampling, specifically purposive (or judgemental) technique was used to select the respondents based on the expertise they possess. Non probability sampling does not involve random selection and therefore is not dependent on the probability theory rationale (Trochim, 2006).

In purposive sampling, subjects are selected based on some unique characteristics which they have (Patton, 1990). Such a technique allows an objective observation of the important events from all angles.  This technique is best suited and “often used when working with a very small sample and when the researcher wishes to select cases that are particularly informative” (Neuman, 2000 cited in Saunders et al., 2003, p. 175). Additionally, it is a valuable technique where the desired population is very rare or extremely difficult to locate (Wadsworth, 2005). Purposive sampling is equally useful when the desired sample needs to be reached quickly and sampling for proportionality is not a concern (Trochim, 2006). Zikmund (2003 p. 382) asserts the value of purposive sampling in forecasting, a key objective of this study.

Since the views from a wide cross section of players in the petrochemical industry will be sought, this study will utilize the heterogeneity technique of purposive sampling. In heterogeneity sampling, a broad spectrum of opinions is sought including the outlier ones (Trochim, 2006).

Validity and reliability

Zikmund (2003 p. 303) defines validity as “the capacity of a measure to measure what it is supposed to measure.” Stated differently, validity points out the degree to which collected data gives a true measurement of social reality (Livesey, 2008).  On the other hand, reliability refers to the extent to which measures are free from imperfections and thus give consistent results (Peter, 1979).  Livesey (2008) attributes three characteristics to reliability: consistency, precision, and repeatability of the collected data.

Several methods were used to ensure the validity of the data obtained. Secondary data collected from reports of government agencies as well as reputable organizations and agencies were deemed valid. Articles from refereed and peer-reviewed journals relevant to the study were also deemed to be reliable and valid.  However, these data was scrutinized to ensure that they are a true barometer of social reality. As such, definitions used in such works must be current, taking into account any semiotic mutations that may have occurred over the years.

Data reliability was assured in the following ways: precision of the data collected was attained by administering the questionnaires to the right people. Standardization was achieved by use of similar questions asked in a similar fashion to all the respondents. Bias was reduced through use of unambiguous and precise questions, simple and short questions, avoiding jargon and technical language and use of common words. Other measures to reduce bias included avoiding use of vague language in the questionnaires, use of complete data, use of sensitive measures and reliable scales, use of consistent language, avoiding leading questions, avoidance of intrusiveness by using less direct and less forthright language especially for sensitive matters (Choi & Anita, 2005).

To eliminate bias in the questionnaire design, use was made of appropriate formatting. Here, the primary concern is to ensure that the answers ticked were circled appropriately and that no confusion was presented when choices were being indicated on the paper. Because bias in the questionnaire can also result from open questions and response fatigue, the questionnaire was made in such a way that it was not too lengthy. Redundant questions were eliminated. Only precise and relevant questions which address the issues at hand were considered. Care was also taken not to design a flawed questionnaire structure. Here, no questions were skipped.

The order of questions administered was randomized so as to eliminate the possibility of learner bias into the study. Respondents were not asked to answer attitudinal, knowledge or behaviour questions for others. Questions will be worded carefully to minimize cultural bias (Choi & Anita, 2005).

Ethical considerations

            In line with HIPAA regulations, access was granted to the patients’ medical records. Where needed, informed consent was sought and obtained.

Data Analysis

Data Entry and Management

Here, data gathered was logged in, verified for accuracy, entered into the computer, transformed, and a database structure incorporating the different computations built. Information gathered will be logged in using standard computerized software (Ms Access) prior to analysis. Original data was preserved using standard record-keeping procedures.   Information gathered in the study was immediately verified for accuracy so that clarification could be sought from the sample sources in the event of errors. In verification of the data, attention was paid on the legibility and completeness of the responses given.

 Focus was also on whether all important questions have been answered and all pertinent background information such as time, place, and date included. Illegible and incomplete responses were rectified through clarification from the sample sources. These sources were also contacted to help correct data where some important questions were not answered and/or where omission of relevant background information was noticed.

Trochim (2006) asserts that database programmes provide greater flexibility in the analysis of data than statistical programmes.  Ms Access was, as such, used to store the data with a different structure from the one used in logging in. A codebook was developed in line with good research practices (Trochim, 2006). This code book described the data and specified how it could be retrieved. It also contained the variable name, description, and format. Additionally, the code book indicated the methods of data collection used, the date on which the information was gathered, as well as the respondents in the study. The variable location in the database and notes were also included in the code book.

Entry of data into the computer was through typing. Data entered thus was checked for accuracy using the double entry procedure. In this method, special software was used to key in data a second time and each second entry subsequently checked against the first entry. The program identified disparities and alerted the user so that correct entries could be made.

Data transformation, also called data conversion, denotes the practice of altering data from their raw form into a format which better supports its analysis (Zikmund, 2003 p. 480). This was conducted to ensure usability of the data in the analysis.

Data Analysis

            Descriptive statistics were used to analyze the quantitative data obtained in this study.  Univariate analysis techniques were utilized, with computations of the measures of distribution, central tendencies, and dispersions of the different variables. Using inferential statistics, correlation was made between prevalence levels of SLE among African American women in the Southern States and environmental factors. The student’s t-test was used to compute the significance level.

Conclusion

Chapter Summary

CHAPTER FOUR

Purpose statement

Research Questions

1. What is the prevalence rate of SLE among African American women in the Southern States of America?
2. What is the incidence rate of SLE among African American women in America’s Southern states?
3. What are the important aetiological factors underpinning SLE occurrence in America’s Southern States?
4. Which symptoms are associated with SLE among African American women in America’s Southern states and to what extent?

Findings and Discussions

Research question 1;

            What is the prevalence of SLE among African American women in the Southern States of America?

Findings

Research Question 2

            What is the incidence of SLE among African American women in the Southern States of America?

Findings

Research Question 3;

            What are the important aetiological factors underpinning SLE occurrence in America’s Southern States?

Findings

Research Question 4

            Which symptoms are associated with SLE among African American women in America’s Southern states and to what extent?

Findings

CHAPTER 5

Purpose Statement

Summary of Major Findings, Conclusions, Limitations and Implications

Recommendations for future research

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