Purpose
Information value is created by providing care for specific medical conditions. To assess the appropriate content and time of delivery, a research framework to examine information values at different stages of the care continuum is needed. This study identified essential information to recommend for different stages of Systemic Lupus Erythematosus (SLE) management.
Methods
Using Porter's value chain analysis, we conducted a content analysis of the research literature, clinical practice guidelines, and patient education materials in an education-enabled environment regarding patient with SLE. We also used a natural language processing technique to automatically map the essential information identified into authorized concepts in the National Library of Medicine’s Unified Medical Language Systems.
Results
The essential contents in the diagnosis stage pertained to a general understanding of disease manifestation such as SLE definition, pathophysiology, etiology, prognosis, and progress. The intervening stage highlights information about prominent spheres of therapeutic regimens and administration as well as diverse care providers with relevance to their specific roles. While screening information, such as self-awareness of SLE signs, is valued prior to a clinical visit, the monitoring information follows clinical visits to avoid flaring events. The key concepts identified were "butterfly rash" (C0277942), "anti-inflammatory drugs" (C0003211), "SLE" (C0024141), and "antinuclear antibodies" (C0151480).
Conclusion
Communication of essential information identified at appropriate care stages can increase patient knowledge and reduce anxiety levels to improve self-care.
This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-
Information value is created by providing care for specific medical conditions. To assess the appropriate content and time of delivery, a research framework to examine information values at different stages of the care continuum is needed. This study identified essential information to recommend for different stages of Systemic Lupus Erythematosus (SLE) management.
Using Porter's value chain analysis, we conducted a content analysis of the research literature, clinical practice guidelines, and patient education materials in an education-enabled environment regarding patient with SLE. We also used a natural language processing technique to automatically map the essential information identified into authorized concepts in the National Library of Medicine’s Unified Medical Language Systems.
The essential contents in the diagnosis stage pertained to a general understanding of disease manifestation such as SLE definition, pathophysiology, etiology, prognosis, and progress. The intervening stage highlights information about prominent spheres of therapeutic regimens and administration as well as diverse care providers with relevance to their specific roles. While screening information, such as self-awareness of SLE signs, is valued prior to a clinical visit, the monitoring information follows clinical visits to avoid flaring events. The key concepts identified were "butterfly rash" (C0277942), "anti-inflammatory drugs" (C0003211), "SLE" (C0024141), and "antinuclear antibodies" (C0151480).
Communication of essential information identified at appropriate care stages can increase patient knowledge and reduce anxiety levels to improve self-care.
Patient education is indispensable for the successful management of chronic conditions, such as Systemic Lupus Erythematosus (SLE)[1], however, it is currently limited to information provided during diagnosis or changes in the therapeutic course. SLE is a chronic autoimmune disease in which the immune system attacks organs. Owing to its complexity and severity, the management of SLE can change rapidly over the course of the illness. However, education regarding patient with SLE often ignores the appropriateness of information at different stages of a patient’s adjustment to their disease. Patients with SLE reported substantial educational needs, especially in the domains and timing of “self-help measures”, “disease processes”, and “feelings” [2, 3]. Thus, there is a dearth of research examining the essential components of SLE knowledge that should be included in a holistic SLE care continuum.
SLE can cause widespread inflammation and damage to multiple organs (joints, tendons, skin, heart, lungs, brain, kidneys, and blood vessels). Currently, the reported prevalence of SLE in the United States is 20~150 cases per 100,000 [4, 5]. The average 10-year survival rate exceeds 90%, and the rate drops to 80% for the 15-year survival rate [6]. Patients with SLE may experience major symptoms, including fatigue, skin rashes, fever, and joint pain. Other complications include sun sensitivity, oral ulcers, arthritis, pleuritis, serositis, kidney disease, seizures, psychosis, and blood cell and immunological abnormalities [1, 2, 3]. With a pattern of fluctuating disease activity, some patients may experience intermittent episodes of active disease (flare-ups) followed by periods of low or absent disease activity (remission) [1, 2, 3]. Due to multi-organ involvement, SLE treatment often involves a multidisciplinary team approach (i.e., rheumatology, nephrology, cardiology, and dermatology) [1, 2, 3].
Furthermore, patients with SLE face numerous physical, psychological, and social challenges during their illness [7, 8]. Meanwhile, a considerable proportion of patients do not have sufficient knowledge of their disease, sequelae, or the therapeutic course. As a consequence, poor medication education has a negative impact on the clinical outcomes of patients [9]. Research has also shown that psycho-educational intervention programs are successful in improving self-efficacy and lowering patients’ mental burden and fatigue [8]. However, approximately 75% of patients with SLE report unfulfilled educational needs [10].
Education designed for patients with SLE is often recommended by field experts [11], however, such recommendations provide ambiguous instructions regarding essential contents and timing. The delivery of inappropriate information at improper care stages may increase anxiety levels in individual patients. If patients are given too much information too soon, the evidence suggests that the incidence of depression can increase among them [11, 12]. Patients also acknowledged that needs vary according to individuals and situations, depending on their responses to disease progression. Significantly, Brown [13] notes that SLE can lead to significant worry and distress, especially during delays in diagnosis and times of high disease activity. Thus, it is recommended that providing appropriate individualized information to people with SLE at the right care stage enables them to use self-management tools to gain control over everyday symptoms [13]. However, patient education research has rarely focused on different care stages with relevance to educational content.
Chronic care management with relevance to patient education is complex as it involves longitudinal disease progression and management. Originating from a business model, Porter and Teisberg [14] argued that patient education should be included at each stage of chronic care, ranging from prevention (or screening), diagnosis, and intervention to monitoring (or managing) [15, 16, 17]. Although not traditionally handled by clinicians, involvement in prevention and monitoring activities, such as self-screening at an early stage prior to a confirmed diagnosis, can help raise awareness. Diagnosis aids in early disease detection, which often helps in reducing the impact and severity of a disease. Successful treatment relies on patients receiving proper information in the preparational stage for specific procedures and therapies. Intervention, whether with drugs or procedures, should be performed with the most suitable specialists and technologies. Finally, patient care must be monitored and managed to continually learn and improve as well as follow-up on treatment adherence. For the abovementioned reasons, Porter’s model can support the development of a strategy for multi-stage patient education that is rarely addressed in current practices.
Porter's value chain analysis is based on the collection of operations employed by a company in a certain industry to generate market value. Applied to information-intense industries, such as healthcare, the chain starts with an interaction in which data is provided to make informed clinical decisions. Thus, the decisions influence the course of care and, in turn, patient outcomes. Therefore, information has value only if it is expected to result in changes [15]. A six-stage information value chain that connects the initial encounter with information to the ultimate effects of information is recommended in the healthcare context [15]. As changes in one stage of a value chain may or may not affect the succeeding stages, the information value chain provides a prism to examine and evaluate each stage separately. Importantly, whether the information could impact a patient's self-care process or providers’ clinical workload, the value chain can be modified in the framework. For instance, our analysis highlights the provider’s viewpoint, so the first three clinical stages (screening, diagnosing, and preparing) were emphasized, while the last stage (monitoring) can be further separated into sub-value stages such as recovering/rehabilitating, and monitoring and managing.
Using Porter’s value chain analysis as a theoretical framework, this study aimed to identify and examine the available research concerning or related to the information needs of patients with SLE focusing on four primary activities of the Chronic Disease Value Chain (CDVC): screening, diagnosing, intervening, and monitoring. This study addresses three research questions: (1) What are the essential contents and timing of delivery of education materials regarding patients with SLE identified by the literature review? (2) What are the essential contents of the education material regarding patients with SLE recognized in the clinical practice guidelines? (3) What are the key concepts extracted from education materials regarding patients with SLE?
This study employed a content analysis of research literature, clinical practice guidelines, and patient education materials in an education setting regarding patients with SLE. We also used a natural language processing technique to automatically map the essential identified information into authorized concepts in the National Library of Medicine’s Unified Medical Language Systems.
Our study samples consisted of three analytic sources: (1) scientific journal articles extracted from the PubMed database, (2) clinical practice guidelines based on the 2019 European League Against Rheumatism (EULAR) and British Society for Rheumatology Standards for SLE, and (3) online patient education materials for SLE [18, 19]. First, a PubMed literature database search was performed using a combination of Medical Subject Headings (MeSH): "patient education as topic" [MeSH terms] OR "patient education" [MeSH terms] AND "lupus erythematosus, systemic" [MeSH major topic]. This initial search yielded 115 papers in English, and manual reviews were performed to include only relevant articles pertaining to the essential components of SLE knowledge in the patient education context. After removing non-relevant papers (i.e., clinician target, medical education, editorial, and opinion), we identified 14 papers for valid analysis. Figure 1 shows the details of the literature selection in a flow diagram.
Figure 1
Flow diagram of PubMed article selection process.
Second, we carefully reviewed the clinical practice guidelines recommended by one of the leading professional rheumatology associations designated for SLE, EULAR. According to the Institute of Medicine, clinical practice guidelines are not only for clinicians but also for patients to assist in their decisions toward appropriate healthcare for specific clinical circumstances [20]. EULAR [18] was used to identify essential content using four value stages: screening, diagnosing, intervening, and monitoring. Primary and secondary information for use in education regarding patients with SLE was identified in each value chain. These guidelines are intended to offer concise instructions on how to provide healthcare services. Therefore, we adopted these to extract patient education content according to the four value stages.
Third, we extracted key concepts from 10 major patient education resources: the American College of Rheumatology, National Institute of Arthritis and Musculoskeletal and Skin Diseases, Center for Disease Control and Prevention, WebMD, MedlinePlus, UpToDate, Mayo Clinic, Merck, Wikipedia, and Medscape. Only public access data were used in this study; therefore, the study did not require IRB review.
We operationalized two analytic measures: essential content and key concepts. The essential content refers to what was recommended or indicated as essential SLE knowledge in the medical literature and clinical practice guidelines within the education context regarding patients with SLE. Waldron et al. [11] reported that patients in their study indicated that they needed scientific explanations to overview SLE in general at the time of diagnosis, whereas they expressed the need for symptom control and treatment management information as their therapeutic course was determined. In this example, we identified “general disease information”, “therapeutic management”, and “symptom control” as essential contents, and “at the time of diagnosis” and “during the course of therapy” as delivery timing. As regards, Essential content was used to build an information typology for use in education about patients with SLE.
Additionally, essential content refers to the education that is imparted in different stages of the information value chain. Modified from Porter’s framework, we first identified the information recommended by clinical practice guidelines and grouped them into four value chains: “screening, diagnosing, intervening, and monitoring”. Screening is the stage in which information is valued prior to a clinical visit. In this category, we focused on identifying patients’ awareness of SLE-specific symptoms for further pursuant to clinic visits. Diagnosis is performed by clinicians, and patients are clearly informed about their apparent signs and symptoms, which are linked to tests for the final decision. In this context, essential content is used to educate patients about the diagnostic process. Intervening refers to any therapeutic regimens and course-related context involving efficacy, side effects, and compliance. Monitoring follows the management or adherence to a planned therapeutic course.
In this study, the essential content identified from both medical literature and clinical practice guidelines was mapped with patient education materials. A collection of online patient education materials (n=10) was manually annotated by three authors (JK, SK, and MR), identifying the key concepts and value chain stage each belonged to. Once key phrases or words were identified (and agreed to by the three authors), we ran a clinical natural language processing software, “Clinical Language Annotation, Modeling, and Processing Toolkit,” developed by the University of Texas. This process is essential for identifying clinical concepts, rather than simple keywords. We used the unified medical language system’s concept unique identifier, which uniquely represents a single meaning, and the concept name was chosen as a word to represent the whole concept. To be considered “key,” a concept, as identified by the concept unique identifier, needed to appear more than three times across all patient education materials. As a concept could appear in more than one stage of the value chain depending on the context, concepts needed to meet the threshold per value chain stage for inclusion as a key concept. For instance, a concept identified as screening four times but diagnosing only once in all patient education materials would only be considered a key concept for the screening stage of care. For follow-up studies by others, the following concepts and keywords extracted in tables could be used to populate what to highlight in each stage of SLE care management.
Of the 14 studies, six were based in the USA and one each in Finland, Germany, Iran, the Netherlands, Sweden, Taiwan, and the United Kingdom. The objective of the studies was to examine the effectiveness of the intervention in providing information about specific topics related to SLE. Specific topics included an ethnic-specific cholesterol-lowering diet [21], self-management behavior [22], body image management [23], steroid pulse therapy [24], and immunosuppressive drugs [25, 26]. Four studies examined the effectiveness of an intervention to provide comprehensive SLE information regarding patients’ knowledge [3, 8, 27, 28]. Furthermore, one study described patients’ educational needs for SLE [2], and another study surveyed the efficacy of the information policy given to patients with SLE [29]. Additionally, psychoeducational interventions, such as basic cognitive strategies, have been evaluated for cognitive dysfunction in patients [30]. Table 1 presents the conclusions of the medical literature analysis.
Table 1
Essential Components of Systemic Lupus Erythematosus Patient Education in Medical Literature
We further analyzed the essential content using the four value chain stages. First, five of the selected studies provided information regarding SLE screening. These include a general understanding of disease manifestations such as SLE definition, pathophysiology, etiology, prognosis, and progress [2, 8, 24, 28], signs and symptoms [8, 27, 31], risk factors [8, 27], and exacerbating factors [8]. Second, the diagnosis value chain includes three studies highlighting SLE information from laboratory tests [3, 24] and assessments [28]. Third, SLE information related to the intervening value stage contains drug therapy options [2, 24, 25, 26, 27, 29], compliance and drug administration [8, 22], side effects [24, 25, 26, 28], pain management [2], and efficacy and safety of pharmacological substances [28].
In the end, the monitoring value chain contains a wealth of behavioral adjustments and recommendations. This value chain highlights SLE information about the prevention and management of disease complications [3, 8, 22, 24, 27, 28], patient support systems [2, 3, 27, 28], psychosocial support [2, 8, 28, 30], diet restrictions [3, 8, 21, 24], daily activities [8, 24, 28, 29], pregnancy related care, including breastfeeding and fertility [3, 25, 26, 27], skin care and cosmetics [3, 8, 23], regular check-ups [8, 22], smoking cessation [29], sun protection behavior [29], and use of complementary and alternative medicine [29]. In our analysis, the monitoring stage included most of the information recommended by the medical literature in Table 1.
The information included in the guidelines is based on the criteria of the American College of Rheumatology or Systemic Lupus International Collaborating Clinics, most often used by health providers [18]. In the screening stage, the guidelines imply that patients with SLE or primary care physicians may need to know the initial signs and symptoms, risk factors, and triggers, so that they can promptly seek professional help or be referred to rheumatologists. Signs and symptoms include fatigue, weight loss, fever without focal infection, arthralgia, myalgia, malar rash, photosensitivity, pleuritic chest pain, new-onset Raynaud’s phenomenon, and mouth sores. Risk factors also include being a woman of African, South Asian, or Chinese descent [19]. SLE can also be triggered by sunlight, concurrent or recurrent infections, hormonal changes, and the timing of previous disease-related therapeutic changes.
In the diagnosis stage, clinical or laboratory findings regarding activities such as specifying, ordering, and testing based on the American College of Rheumatology criteria were noted as information to be discussed with the patients. This process includes clinician assessment of malar rash, discoid rash, photosensitivity, oral ulcers, arthritis, serositis, renal disorders (protein urea, cellular case, red cell, hemoglobin, etc.), neurological disorders (seizures, psychosis), hematologic disorders (hemolytic anemia with reticulosis, leukopenia <4,000, lymphopenia <1,500, thrombopenia <100,000), immunological disorders (anti-dsDNA, anti-Smith antibody, antiphospholipid antibodies, abnormal serum levels of immunoglobulin g, immunoglobulin m), and results of tests for Antinuclear Antibodies (ANA). Systemic Lupus International Collaborating Clinics [19] criteria were also described, including clinical and immunologic criteria, besides biopsy-proven nephritis compatible with SLE in the presence of ANA or anti-dsDNA antibody. Although the initial screening and diagnosis stages refer to similar assessments of early signs of clinical symptoms, they are slightly different in utilizing either providers or patients’ viewpoints, so they are somewhat repetitively stated. While screening is more focused on non-rheumatic specialists, such as general practitioners or potential patients with SLE, the later diagnosis stage includes laboratory confirmation procedures that require a rheumatologist’s specialty.
In the intervention stage, patients are supposed to be apprised of the aims of the treatment, options for drug therapy, and side effects of drug therapy. These include major medications such as hydroxychloroquine, glucocorticoids, immunosuppressive therapy (i.e., methotrexate, mycophenolate mofetil, azathioprine, and cyclophosphamide), biologics (i.e., belimumab, rituximab), and nonsteroidal anti-inflammatory drugs. They must also be informed of the side effects of individual drugs such as myelosuppression, hepatotoxicity, lymphoproliferative disorders due to azathioprine, and serious infections and malignancies due to belimumab. Notably, the intervening stage highlights information about care providers, including primary care providers who do not usually treat major organ systems; rheumatologists for assessing disease activity, complications, and adverse effects; and family physicians to monitor medication effects with relevance to disease activity.
In the monitoring stage, patients must manage SLE to avoid disease flares, drug complications, and comorbidity management with relevance to lifestyle modifications. At this stage, information is necessary regarding complications, the meaning of clinical and laboratory deterioration, ways of promoting appropriate risk reduction strategies, and additional community and social services, if needed. The details are presented in Table 2.
Table 2
Systemic Lupus Erythematosus Essential Contents Identified from Clinical Practice Guideline
The natural language processing model created for this study identified 1,144 unique concept identifiers in the patient education materials. The most commonly occurring concepts were “butterfly rash”(C0277942) and “anti-inflammatory drugs”(C0003211), each extracted 20 times. Interestingly, these appeared more frequently than “SLE” (C0024141), the concept for the disease itself, which was extracted 19 times. This was closely followed by “antinuclear antibodies”(C0151480), which was extracted 18 times.
The model classified each concept according to the value stage for which the information provided would be the most appropriate. Concepts were most frequently classified as screening (n=646). Monitoring had far fewer concepts (n=459), while diagnosing (n=379) and intervening (n=377) showed the least. Although a concept could be included in more than one stage, depending on the context, the model was consistent in allocating key concepts. For example, the concept of "Alopecia (hair loss)" (C0002170) has been identified 14 times in patient education materials. It was classified as screening for all but one, where it was mentioned in diagnosis. Hair loss, clinically known as alopecia, is one of the diagnostic criteria for SLE. However, in patient education materials, it is commonly referred to as a sign of the disease that patients should be aware of, thus making the model’s classifications accurate.
After filtering the results to concepts that appeared more than three times in a value stage, the 66 concepts shown in Table 3 were identified as key concepts across the four stages of the value chain. Screening retained the most concepts and highlighted the common signs and symptoms believed to be indicative of SLE along with demographic risk factors. Of the last three stages, diagnosis retained the most concepts. The refined intervening concepts emphasized the drugs used for the treatment of SLE and their beneficial effects. Monitoring resulted in the largest reduction in concepts. This reflects the lack of consistent information presented in the educational materials at this stage. This stage produced the most generic concepts. While the identified key concepts are still ambiguous, they represent some of the most specific advice given for long-term disease management (i.e., healthy diet and avoiding sun exposure).
Table 3
Systemic Lupus Erythematosus Key Concepts Mapped from Patient Education Materials
This study aimed to construct an information value chain framework for education regarding patients with SLE. The information value chain framework is not only useful to identify what is highlighted in education regarding patients with SLE but can also foster an emphasis on when to deliver the sensitive information among the four SLE care stages. Our findings contribute to answering the three research questions posed, and the following section discusses how and why the present study agrees or disagrees with the previous research.
A multimodal approach was used to build an SLE information value-chain framework. To identify SLE knowledge of patients, we studied three data sources: medical literature, clinical practice guidelines, and patient education materials. These three sources are inclusive of both SLE providers' and patients' perspectives. Medical literature often consists of professional perspectives to educate patients, rather than exploring what is currently distributed to patients with SLE in rheumatology clinics. Thus, the essential content identified in the medical literature for the purpose of education regarding patients with SLE highlights information about screening and monitoring values. Rather than highlighting diagnostic and/or therapeutic details, the medical literature seems to focus on the importance of self-awareness and care management.
Findings from the SLE information value chain framework suggest that the primary activity should be highlighted in each value stage. For instance, patients can screen for probable SLE signs and symptoms such as 1) fatigue, weight loss, fever without a focal infection, 2) arthralgia, myalgia, 3) malar rash, photosensitivity, pleuritic chest pain, Raynaud’s phenomenon, and mouth sores. In this self-awareness stage, patients can identify such early symptoms for further clinical evaluation which may lead to a definitive diagnosis. This initial stage is mainly attributed to patients or primary caregivers who can suspect or recognize the symptoms, so they can be referred to rheumatologists.
According to Waldron et al. [11], patients have little previous knowledge of SLE at the time of diagnosis. Differentiating SLE from similar disorders can be difficult because many early symptoms are common and non-specific. Consequently, patients may experience several years of delay before receiving a definitive diagnosis. During this period of uncertainty, they may feel isolated and unsupported by health professionals, and the point at which they finally receive their diagnosis can be both emotional and stressful [11]. Therefore, it is vital that patients provide information about their signs, symptoms, and risk factors to seek health services that confirm their disease.
In diagnosis, patients are not the main drivers of ordering and interpreting diagnostic tests. Instead, they can understand the presented diagnostic results. At this stage, patients may not need to know complex diagnostic details; rather, they may find it beneficial to know how the results are linked to their confirmed SLE diagnosis. The diagnosis stage of the value chain may be knowledge-intensive, and clinicians should pay close attention to the patients’ understanding of SLE diagnosis. Generally, in this kind of chronic disease, it is beneficial for patients to obtain as much scientifically valid and comprehensive information as possible [27]. Moreover, the diagnosis of a disease requires a combination of clinical features and presence of at least one relevant immunological abnormality. However, SLE is a multi-system autoimmune disorder with considerable heterogeneity. This makes the diagnosis, assessment, and monitoring challenging. Delays in diagnosis are well-recognized and remain a concern. It is important to ensure that the diagnosis of SLE is correct before considering treatment [19].
From a clinical perspective, this stage involves delivering drug therapy to improve efficacy and reduce side effects by monitoring therapeutic compliance. Owing to the complexity and multiplicity of SLE management, therapeutic regimens include multiple therapeutic stages and drug branches. These include hydroxychloroquine, glucocorticoids, immunosuppressive therapy (methotrexate, mycophenolate mofetil, azathioprine, and cyclophosphamide), biologics (belimumab and rituximab), and nonsteroidal anti-inflammatory drugs. These drugs should be carefully monitored based on remission and flare status. The side effects of the major SLE drugs are listed in Table 2. Care providers, such as primary care providers, are involved with mild levels of treatment that do not involve major organ systems, while specialists, such as rheumatologists, closely monitor SLE disease activity, complications, or adverse effects. In a chronic management context, patients with SLE are most often treated by a family physician who monitors the intervening stage disease activity and therapeutic regimens with support from rheumatologists. Nevertheless, the intervening stage is the most beneficial for highlighting interactive provider communication among practitioners. Thus, the chronic care model should facilitate provider-to-provider communication between general practitioners who monitor the side effects and rheumatologists who prescribe the SLE drugs.
To improve lasting treatment results, management should aim for remission of disease symptoms and signs, prevention of damage accrual, minimization of drug side effects, and improvement in quality of life. Accordingly, treatment of SLE should aim for remission or, if this state cannot be achieved, low disease activity in all affected organ systems. Prevention of disease flares is an additional milestone in SLE treatment. The consistently reported risk factors for a higher disease flare rate include younger age at disease onset, no use of antimalarials, persistent generalized disease activity, and serological activity [18]. Assessment of adherence to drug treatment, close monitoring, and optimization of disease control in these patients may reduce the risk of flares [19].
Monitoring is closely related to intervention, which requires careful adjustment of the therapy to control flares. In this study, SLE flares and remission were scrutinized in patient monitoring plans. It is acknowledged that regular monitoring of clinical and laboratory features of active disease should take place to assess and monitor changes in disease activity, the development of chronic damage, and to detect the presence of (and changes in) comorbid conditions that may be confused with active SLEs (such as fibromyalgia, hypothyroidism, and infection) and medication side effects. Furthermore, it is important to monitor patients with SLE regularly to assess and monitor changes in disease activity, chronic damage, drug-induced and co-morbid conditions that may be confused with active SLE and are associated with an increased risk of death [19]. Owing to this, there is a wide range of specificity and vagueness across the value chain stages. As the methods of the study focus on information available from various patient education sources, the results do not reflect important information that is missing in the materials.
The SLE information value chain was developed using a collection of research concerning the information requirements of patients with SLE and best practices for treatment and self-management. For several reasons, healthcare providers do not always implement best practices. The repetition of topics throughout the value chain indicates that information might best be given multiple times in the care cycle. It is likely that patients might need slightly different information about the same topic depending on the care stage. However, patients are usually given only one worksheet of basic SLE information when first diagnosed with the condition. Research routinely shows that patients do not recall receiving educational information, and our study demonstrates that many concepts related to necessary information are not readily available in Patient Education Materials (PEMs) or patient notes. This study highlights key SLE concepts that contribute to the reinforcement of SLE patient education at different stages.
Some of the information identified in the SLE value chain is not included in the PEMs or clinical practice guidelines that we studied, nor are the patients told the information by anyone on their healthcare team. However, we limited our analysis to only two major clinical practice guidelines (European and North American), which might misrepresent some important details of the SLE practices and guidelines in Asian or other countries. Future studies should include guidelines that can add value to diverse racial and ethnic population-based clinical findings.
Porter’s value chain analysis provides a framework that can support education regarding patients with SLE with relevance to clinical challenges. SLE poses particular challenges to its diagnosis, management, and progression. The current diagnostic criteria are imperfect and can delay the confirmation of diagnosis when paired with the great variability in patient symptoms [4, 6, 7]. This, coupled with the fact that SLE affects a wide variety of systems in the body, has led to SLE having one of the largest disparities in health outcomes of rheumatic diseases. Patients must often receive care from multiple specialties with great uncertainty regarding how the disease and their healthcare needs will progress over time [5, 6, 7]. Given this fragmentation of health care, it is imperative to use a framework capable of comprehensively examining the components of SLE care. This study highlights the importance of patient education in different care stages as well as the care stages in SLE management.
CONFLICTS OF INTEREST:The authors declared no conflict of interest.
AUTHORSHIP:
Study conception and design acquisition - KJW, RM and KS.
Data collection - KJW.
Analysis and interpretation of the data - KJW, RM, LA, and KS.
Drafting and critical revision of the manuscript - RM and KS.
University of Kentucky College of Medicine' internal faculty research fund was partially used in this research.
E-SUBMISSION
