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Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Objective

To identify the most important and relevant concepts of daily functioning from the perspective of patients with systemic lupus erythematosus (SLE).

Methods

We conducted a consensus-building, 3-round, electronic mail survey with SLE patients using the Delphi technique. The Delphi technique is a structured communication process with 4 key characteristics: anonymity, iteration with controlled feedback, statistical group response, and informed input. The concepts contained in the answers of the patients were extracted and linked to the International Classification of Functioning, Disability and Health (ICF).

Results

Of the total 225 participants, 194 (86.2%) completed the questionnaires from all 3 Delphi rounds. In total, after the third Delphi round, 307 concepts were identified. Ninety concepts (55 in the domain body functions and structures, 16 in activities and participation, and 19 in environmental factors) were considered relevant by at least 50% of the participants in the third round and linked to the ICF. Twelve concepts were considered important by at least 75% of the participants.

Conclusion

The high number of concepts resulting from this large-scale patient Delphi approach underlines the great variety of SLE patients' problems in daily functioning. The results of this patient Delphi project supplement the findings of our focus-group study in establishing a comprehensive overview of the patient perspective in SLE.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with a broad range of symptoms (1) and equally complex clinical presentation and course (2). SLE can affect almost any organ system, including joints, skin, kidneys, lungs, blood, and the central nervous systems (CNS). The disease is characterized by periods of active disease and periods of milder but chronic problems (3). The incidence and prevalence of SLE may vary considerably in different countries (4, 5). Because SLE has a significant impact on many physical, social, and psychological aspects, functioning may also be a key concept to understand the daily life hurdles experienced by patients with SLE (2, 3, 6, 7). However, identifying relevant and important problems is a particular challenge in a health condition such as SLE, because individual patient problems may vary greatly with disease severity, activity, and duration, and because of the wide variety of organ systems involved and the variety of personal activities thus affected (8).

The International Classification of Function, Disability and Health (ICF) of the World Health Organization (9) was chosen as an appropriate framework to capture all of these changes and varieties in SLE patients because the ICF is a comprehensive framework that characterizes the full array of problems that a patient faces when affected with a disease (10). One aim of the ICF is to provide a common and standardized framework for assessing functioning, disability, and health (11, 12). Within the framework of the ICF, it is possible to record and organize a wide range of information about health for both individuals and populations and it is applicable for clinical practice as well as research (13). In clinical practice, the ICF is intended for use in needs assessment, modulation of interventions for different health states, rehabilitation, and outcome evaluation (14). The ICF classification consists of 2 parts. Part 1 covers functioning and disability with the components body functions, body structures, and activities and participation. Part 2 covers contextual factors with the components environmental and personal factors (15). Within the hierarchical coding system of the ICF classification, ICF categories are denoted by the letters “b” for body functions, “s” for body structures, “d” for activity and participation, and “e” for environmental factors, followed by a numerical code that starts with the chapter number. The more numbers the code comprises, the more detailed the information the ICF category refers to (16).

To apply the ICF in medicine, it is necessary to have tools that are tailored to the needs of the user without preceding information needed for health statistics, health reporting, and comparative (clinical) research (17). For any given disease, only a small proportion of the more than 1,400 categories of the ICF may be typical and most relevant (18). Such subsets of ICF categories, called ICF Core Sets, are lists of ICF categories that are typically relevant and important for patients with a certain health condition. ICF Core Sets have been developed for several chronic and acute conditions (13, 14, 19, 20). In this way, the ICF is an important concept and ICF Core Sets are practical tools for the further development of clinical science, a major step toward a better interpretability and comparability of studies, and should help to improve communication not only between health professionals within specific settings but also between health professionals and patients and between settings (17). ICF Core Sets can serve as a reference framework when selecting instruments or when defining what needs to be covered by specific measures. The ICF and the ICF Core Sets may become the new base for the further development of such measures (8). An ICF Core Set for SLE, of which the present study is one part, is currently under development (8, 21) with the goal that it can be used as a reference framework in treatment and when selecting instruments or in clinical research.

Because the ICF Core Set should be a selection of the most relevant ICF categories for people with SLE, it is essential to explore the preferences of patients with this disease in depth (15, 22–24). Patient perspective was found to be important or crucial when considering patient attitudes toward the illness, treatment, and cooperation with health professionals (25–27). However, research on the perspective of patients with SLE is scarce (21, 28). One qualitative focus-group study that explored the perspective of patients with SLE was conducted (21). While qualitative studies allow deeply individualized analyses, they only include small sample sizes. Therefore, larger-scale quantitative studies are also necessary. The Delphi study is one possible approach that provides the opportunity to include a large number of experts (18). The Delphi technique is an iterative multistage process designed to combine individual opinion to form group consensus (29) using anonymous group feedback to shape the common opinion of the experts involved. In the process of defining ICF Core Sets, such an approach is commonly used to depict the expert opinion of health professionals acquainted with a condition (12).

Because patients are experts of daily functioning with their own disease, we tried the same approach to depict the informed opinion of a large number of patients with the objective of identifying the most important and relevant concepts of daily functioning from the perspective of patients with SLE using the Delphi technique.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Design.

We conducted a consensus-building, 3-round, electronic mail survey with SLE patients using the Delphi technique (Figure 1). The Delphi technique is a structured communication process with 4 key characteristics: anonymity, iteration with controlled feedback, statistical group response, and informed input (30, 31). The survey started in October 2006 and ended in April 2007.

thumbnail image

Figure 1. The course of the patient Delphi exercise. Boxes on the left side depict working steps performed by the research group of Medical University of Vienna and the middle boxes depict patient involvement. Arrows indicate the course of the working stages. Boxes on the right side show the number of responses in the first, second, and third rounds. SLE = systemic lupus erythematosus.

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Participants.

Patients with SLE were mainly recruited with support of the German patient group (Deutsche Lupus-Selbsthilfegemeinschaft e.V.). On their Web site and in their official journal, an invitation to take part in the study was announced. Additional patients were recruited from the rheumatology outpatient clinic of the Medical University of Vienna. For this study patients had to be diagnosed with SLE and be age ≥18 years to participate. To ensure anonymity, every participant was assigned an alphanumeric code by the research assistant of the group and by the first author. All patients were fully informed about the study procedures and gave written informed consent in accordance with the 1996 Declaration of Helsinki. The study was approved by the local ethics committee.

Data collection and measures.

Patients received 3 consecutive questionnaires, usually by e-mail. Only patients who had responded in the previous round received the questionnaire of the subsequent round.

In the first round of the Delphi exercise, 4 open-ended, self-developed questions concerning problems in body functions, body structures, activities and participation, and environmental factors (Table 1), as well as additional demographic questions were e-mailed or sent by postal mail to each participant. Participants were encouraged to raise all important issues in order to maximize the uncovering of the most typical opinions and problems (29). They were asked to respond within 3 weeks and reminders were sent out 1 week before the deadline. Patients were not aware of the identity of any other participants. In a first analytical step, all returned questionnaires were read through by the first author to gain an overview of the collected data/answers. In the second step, the data/answers were divided into several concepts. A concept was defined as a specific and separate unit of text, either a few words or a sentence with a common topic (32). For example, one patient wrote, “I have problems with my joints of the hands, so that I can't play tennis,” and this answer/sentence was divided in 2 concepts named “joints of the hands” and “playing tennis.” After extracting the concepts contained in the answers of the participants in round 1, the concepts were assigned to the different ICF components (body functions, body structures, activities and participation, and environmental factors). By including all concepts from the first round, the second Delphi questionnaire was developed (BB, TS). On this questionnaire, patients were asked to mark concepts (e.g., “fatigue”) relevant to them. At the end of the questionnaire, participants had the opportunity to add more concepts they considered important. For the third Delphi round, we also added the percentage of participants who had marked each concept as relevant in the previous round. Participants were again asked on individualized questionnaires about the relevance of each concept, thus having the opportunity to make a new decision in view of both their own previous decision and the majority opinion (Table 2).

Table 1. First round of the Delphi exercise*
Four open-ended, self-developed questions, translated in English
  • *

    SLE = systemic lupus erythematosus.

If you think of a typical week day, which physical problems do you have because of your SLE?
If you think of a typical week day, which mental health problems do you have because of your SLE?
If you think of a typical weekend day, which physical and mental problems and difficulties do you have because of your SLE?
Do you have problems with body functions?
Table 2. Examples from the individualized third Delphi questionnaire*
Problem areaIndividual participant's answer of the second roundParticipants who considered this concept as relevant, %Answer of the third round
  • *

    The list of concepts from the component body functions consisted of 4 columns, as did the other lists (body structures, activities and participation, environmental factors, and resources). The first column showed concepts of body functions, such as joint pain. The second column showed the individual answer of the participant in the second Delphi round (only this column was different for every participant; all other columns were the same). The third column listed the percentage of each concept found relevant by all participants together, and in the last column the participants had the opportunity to mark the concept again by ticking the box.

Joint pain80.9
Pain in body parts80.9
Anxiety67.0

Cutoff for relevant and important concepts.

Initially, 2 cutoff points were predetermined to establish problems that appear relevant and important to SLE patients. One cutoff point for a concept to be considered relevant was set at >50%, in line with published literature (12, 29, 33, 34), to generate many concepts relevant to more than half of the patients. Because of the individual approach for patients living with a disease such as SLE, a second cutoff point was established at >75% to focus on concepts that appear important to most of the patients. This higher cutoff point was also selected because it would generate significantly fewer items that would concern 3 out of 4 patients. However, all concepts are listed as supplemental material.

Statistics.

Descriptive statistics were used to analyze the response rates and personal characteristics of the participants. After the second and third rounds of the Delphi exercise, the percentage of participants who considered a concept as relevant and/or typical was calculated.

Linking concepts from the Delphi exercise to the ICF.

The most relevant and important concepts were linked to the ICF after the third Delphi round. The linkage was performed separately by 2 trained health professionals (BB and TS) on the basis of 10 published linking rules (35, 36). According to these linking rules, each concept was linked to the most specific ICF category. If a concept was not contained in the ICF classification, this concept was assigned as “not covered,” such as the concept “hectic environment” in our study. According to the definition of the ICF, some concepts were named “personal factors,” which is also a component of contextual factors, but these factors were not classified in the present version of the ICF because of the large social and cultural variance associated with them. One example that could be linked to personal factors was the concept “positive attitudes towards life.” A concept related to the health condition, such as “to feel ill/sick,” was linked to “health condition.”

Consensus between the 2 linkers was used to decide which specific ICF category should be linked to each concept. Disagreement between the 2 linkers was resolved by unanimous decision after discussion.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Participants and response rates.

Descriptive statistics were used to analyze the response rates and the personal characteristics of the participants. A total of 258 patients asked for more information about the study. General information, instructions, informed consent, and the open-ended questionnaires for the first Delphi round were sent out together to all interested patients. In total, 225 participated, of whom 84% were from Germany, with the remaining patients coming from Austria (10.7%), Switzerland (4.4%), The Netherlands (0.4%), and Spain (0.4%). In line with the well-documented fact that SLE affects approximately 10 times more women than men (37), 92.9% were female. The mean ± SD duration was 10.25 ± 8.13 years. Of all 225 participants, 194 (86.2%) completed the questionnaires from all 3 Delphi rounds.

Concepts identified in the Delphi exercise.

In round 1, 294 concepts were extracted from the answers of the 4 open-ended questions. These concepts were included in the second questionnaire. Thirteen additional concepts were added by the participants of round 2. Of these 307 concepts, 139 concepts (45.3%) related to body functions, 41 (13.4%) to body structures, 71 (23.1%) to activities and participation, and 56 (18.3%) to environmental factors. In addition, among the environmental factors, facilitators (i.e., stress, having learned to live with the disease, sun, climate, and family and friends show respect for the patient) were specified as opposed to factors being a barrier for people with SLE. This resulted in 42 (13.7%) of the environmental factors perceived as barriers by patients with SLE, which restrict the individual's performance, such as “climate.” In contrast, 14 (4.6%) concepts of the environmental factors could be described as facilitators (e.g., “family and friends take care”). This would indicate that individual attitudes of family and friends are facilitators.

Results of the third round of the Delphi exercise.

Ninety concepts (55 in body functions and structures, 16 in activities and participation, and 19 in environmental factors) were considered relevant by at least 50% of the participants in the third round, as shown in Tables 3, 4, and 5. Twelve concepts were considered important by at least 75% of the participants. The concept “fatigue” was the most frequently named concept, with an agreement of 98%.

Table 3. Body functions and structures*
Concepts named by the patients%ICF code
  • *

    ICF = International Classification of Function, Disability and Health; hc = health condition; nc = not covered.

  • Considered important by at least 75% of the participants.

Fatigue97.9b130, b4552
More breaks are necessary81.7b130, b4552
Joint pain80.6b28016
Pain in body parts79.6b780
Mental/psychic and physical exhaustion77.5b130, b4552
Problems with blood circulation (cold fingers and legs)75.4b415
Joints (fingers)74.3s73021, b710
Pain in neck and shoulder73.3b28010
Emotional vulnerability72.3b1800
Weak concentration, imperception71.7b140
Anxiety70.7b152
Pain in the back70.2b28013
Photosensitivity of the eyes69.6b210
Joints of the hands69.6s73021, b710
Uneasiness, imbalance (impatient, nervous, irritable, undecided, no evenness, overreactive, distracted, stressed)69.1b1263
Pain68.8b280
Need more time for doing, retarded working68.6b130, b4552
Memory problems (forgetfulness, limited retentiveness, limited memory)68.6b144
Loss of confidence in physical and mental skills68.1b1800
Photosensitivity of the skin67.5b810
To feel ill/sick67.5hc
Other problems of the skin (including those caused by medication)67.0b810, s810
Spine (neck)66.5s76000, b7
Pruritus, dry skin66.0b840
Joint (knee)65.4s75011, b710
Joints (arms, hands)64.4s7201, s73021, s73001, s73011, b710
Sensations related to the skin (numb, prickle) of fingers, arms, and legs64.4b840, b780
Uncertainty of course of disease63.4nc
Muscles62.3s7702, b730, b735, b740
Eyes62.3s220, s230, b210, b215
Dryness (sicca) of the eyes61.8b215, b220, s230
Mood swings61.3b152
Headache61.3b28010
Joints of legs and feet61.3s75001, s75011, s75021, b710
Breathlessness60.7b455
Immunocompromised (infection, allergy, risk of infection)60.2b435
Joint stiffness59.7b710
Guilty conscience59.7nc
Skin rash, eczema, skin inflammation, psoriasis, spottiness, skin irritation, butterfly rash59.2b810, s810
Shoulder58.6s7201, b710
Athymia, listlessness, apathy, lack of interest, no motivation, anergy, boredom, apathy57.6b126, b130
Low and high body temperature (sweating, night sweat, shivers)57.1b550
Limited mobility57.1b710
Inflammation of the mouth (stomatitis, gingival inflammation, gum bleeding, vesicles)56.0b510, s320
Muscle weakness54.5b730
Spine (back)53.9s76002, b7
Inflammation of the eyes (pruritus, swollen eyes, watery eyes)53.9b215, s220, s230
Feeling of dependence (from drugs or people)52.9b1800
Vision problems (decreasing vision, cataract, impaired vision)52.4b210
Spine (loin)51.8s76002, b7
Flatulence, winds51.8b5254
Digestion problems (obstipation, dysentery)51.3b515
Hypotension51.3b420
Depressive mood, unhappiness50.3b152
Weight gain50.3b530
Table 4. Activities and participation*
Concepts of the patients%ICF code
  • *

    ICF = International Classification of Function, Disability and Health; nd = not definable; nc = not covered.

  • Considered important by at least 75% of the participants.

Limited productivity91.1d850
Drag out of bed (need more time to get on with the day)67.0d410
Physical/somatic activity67.0nd
Mountain climbing65.4d9201, d455
Going uphill62.3d4551
Doing sports/sporting60.7d9201
Many things stay unfinished60.2nc
Gardening57.1d920, d6505
Bearing and lifting bags56.5d430
Trekking56.0d920, d450
Going upstairs54.5d4551
Running53.4d450, nd
Lack of spontaneity52.9d230, nc
Skiing52.4d9201, d460
Packing bags (for holidays)51.3d430
Playing tennis50.3d9201
Table 5. Environmental factors*
Concepts of the patients%ICF code
  • *

    Among the environmental factors, facilitators (marked with + in the table) were specified, while factors not marked were barriers for people with systemic lupus erythematosus. ICF = International Classification of Function, Disability and Health; nc = not covered; pf = personal factor.

  • Considered important by at least 75% of the participants.

Stress85.9d2401
Having learned to live with the disease84.8+b1800, nc
Sun80.1e225
Climate75.9e225
Family and friends show respect (for the patient)75.4+e410, e415, e420
Noise73.8e250
To consciously watch the environment72.3+b1800, nc
Positive attitude toward life71.2+pf
Hectic environment71.1nc
Low temperatures68.1e225
Being self-centered in a positive sense67.5+b1800
Recreation on holidays61.3+d920
Crowds (places with a lot of people)60.2e2
Sympathy and acceptance for the disease by other people57.6e4
Appointments to see the doctor (for medical help)55.5e355
Side effects of medication53.4e1101
No encouragement and clarification of the disease by medical doctors52.9e355
Pharmaceuticals, drugs52.9e1101
Destination for holidays50.8e2

Linking of the concepts to the ICF.

The 90 concepts considered relevant by at least 50% of the patients were linked to 67 categories (32 body functions, 14 body structures, 12 activities and participation, and 9 environmental factors) in the 4 ICF components. The ICF categories are presented in Tables 3, 4, and 5.

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

This patient Delphi study was embedded in the process of developing an ICF Core Set for SLE. It was the first Delphi exercise to explore the perspective of patients with SLE and may be the largest patient Delphi study so far performed across diseases. The drop out rate during the study was less than 15%, thus patient-participant commitment can be considered very high.

The patients in our study named an amazingly high number of concepts belonging to the ICF domain body functions and structures. This finding agrees with the needs assessment by Moses et al (38), where essentially all but one unmet need of patients with SLE could be linked to body functions and structures. A similar observation was made in our recently conducted focus-group study (21) in which patients with SLE named a high number of concepts belonging to body functions and structures. These findings clearly reflect that body functions and structures are a central focus of SLE patients. This is not surprising given that SLE is a chronic disease with several physical impairments and many involved organs and that it is the chronic disease problems that have a long-term impact on functioning and quality of life (1).

The highest consensus (97.9%) between the participants throughout the 4 ICF components was reached in concepts related to fatigue, such as “limited productivity,” “more breaks are necessary,” and “mental and physican exhaustion.” These results are similar to other studies (4, 39, 40) and support the notion that fatigue in SLE is multidimensional with important physical and mental aspects. In addition, the origin of fatigue is often multifactorial and could be mediated through disease-related factors (disease activity, treatment), comorbid conditions (depression, sleep disorder, fibromyalgia), or behavioral factors (physical inactivity). Among comorbid conditions, depression has been consistently demonstrated to be associated with fatigue in patients with SLE (41). Our findings of relatively high agreement between SLE patients and concepts related to fatigue may argue for its systematic assessment in clinical studies and in clinical practice.

Over all, the ICF is a framework for categorizing concepts important to patients. However, in this Delphi exercise, some patient responses could not be adequately linked to an ICF category. Personal factors are currently not categorized in the current version of the ICF. For the future, this may be an important improvement of the ICF classification. Personal factors relate to attitudes toward living with a disease, including coping styles, rehabilitation, and prevention. The particular background of an individual's life and living, past and current experience, behavior pattern, and character style may play a role in handling and living with a disease such as SLE. In our Delphi study, for example, the concept “positive attitude towards life” had a high agreement of 71.2%. Therefore, we think that patients' functioning in daily life could be better captured and understood if personal factors were represented in the ICF. In contrast, other domains of the ICF lack certain concepts important for patients with SLE. In particular, the concept “uncertainty of course of disease,” which proved meaningful to 63.4% of SLE patients, was found not to be covered by the ICF.

In addition to capturing physical impairment, consideration of activities and participation and environmental factors in exploring the life of patients with greater clarity and precision may lead to a deeper understanding of their problems in daily life. In total, 16 concepts of the ICF component activities and participation were found relevant by more than 50% of the participants. A total of 91.1% of patients agreed that “limited productivity” was an important issue. This supports the notion that limited productivity is a key problem for SLE patients and could affect both life and work productivity. This is a relevant social problem and an important psychological problem, particularly because most people identify themselves with their occupation and hours worked. Limitations of daily activities and restrictions in participation covered many areas and could be found in several chapters in the ICF, such as “to drag out of bed” (67%), “carrying and lifting bags” (56.5%), “going upstairs” (54.5%), and “uphill” (62.3%), and limitations in leisure activities such as “sports” (60.7%) or “mountain climbing” (65.4%).

The ICF component environmental factors includes both negative environmental factors, called barriers, and helpful environmental factors, termed facilitators (marked with a “+” in Table 5). The results show that many of the named barriers are coherent with 4 key issues, namely, “stress” (85.9%; e.g., “noise,” “hectic environment,” “crowds”), “climate” (75.9%; e.g., “sun,” “low temperatures,” “holiday destinations”), “medical doctors” (appointments, no encouragement, and clarification of the disease by medical doctors), and “drugs” (52.9%; e.g., “side effects of medication”). These may make it a particular challenge, for example, to find suitable vacation destinations with mild climate and available/appropriate medical help.

In contrast, only 6 concepts of positive resources reached consensus above 50% (facilitators in Table 3). A chronic disease may prompt patients to see things/life from a different angle. One possible explanation could be the “sense of coherence” construct (7), which points out a global orientation to one's inner and outer environment and significantly establishes the chaining between stressors, coping with disease and health.

In our study, many patients named “anxiety” (70.7%), “emotional vulnerability” (72%), and “mood swings” (61.3%), and more than half of the participants highlighted “depressive mood, unhappiness” (50.3%). Both the unpredictability and uncertainty of SLE and direct influence of autoantibodies and consequences of autoantibody-induced CNS damage may lead to emotional problems such as anxiety, mood swings, and depression. Our findings are consistent with those of Shortall et al (42), who demonstrated a significant impact of SLE on mood and mood disorders. Their study found that anxiety was more common than depression, as was found in our study.

Our study has some limitations. Most importantly, only German-speaking patients participated, essentially all of whom were from Germany and Austria. Given different environmental factors, differing medical systems, and ethnic factors (4, 5), these outcomes may not be generalizable and thus will need validation in other regions. In addition, the e-mail approach may have skewed the population toward younger, active patients. Finally, the present attempt is unable to account for any additional symptoms a subpopulation with a specific form of organ involvement may have. Nevertheless, our study has sampled essentially all concepts important to the majority of patients in German-speaking Europe, which likely are similar to those concerning most patients in Europe.

In conclusion, the high number of concepts resulting from this large-scale patient Delphi approach underlines the great variety of SLE patients' problems in daily functioning. The resulting list of body functions, body structures, activities and participation, and environmental factors of importance to SLE patients is one important step in the development of an ICF Core Set for SLE (8). The results of this patient Delphi project supplement the findings of a focus-group study (21) in establishing a comprehensive overview of the patient perspective in SLE.

AUTHOR CONTRIBUTIONS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

Ms Bauernfeind had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study design. Bauernfeind, Aringer, Stamm.

Acquisition of data. Bauernfeind.

Analysis and interpretation of data. Bauernfeind, Stamm.

Manuscript preparation. Bauernfeind, Aringer, Prodinger, Kirchberger, Machold, Smolen, Stamm.

Statistical analysis. Bauernfeind, Stamm.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES

We want to thank all participants for their effort, openness, and enthusiasm in our study. In addition, we thank Ms Borgi Winkler Rohlfing and Ms Anette Müller from the Lupus Erythematodes Selbsthilfegemeinschaft e.V., Germany, for their amazing support in realization of the present study.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. AUTHOR CONTRIBUTIONS
  8. Acknowledgements
  9. REFERENCES
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