Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. USA (2012)2424 Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk ME. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus (SLE) from the patients' perspective. Lupus. 2012;21:934-43.
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The study illustrates the great impact that the symptoms cause in the patient's life and the potential of treatment in improving symptoms of the disease. |
Symptoms of the disease represent a large part in patients’ lives, which hinders their day-to-day routine. |
Mattson M, Möller B, Stamm T, Gard G, Boström C. Sweden (2011)2121 Mattson M, Möller B, Stamm T, Gard G, Boström C. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculosketal Care. 2012;10:1-12.
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It was found that SLE patients live among uncertainties and the new opportunities provided by the disease. |
In general, patients perceive the future as something uncertain, reporting that their therapeutic contact with professionals helps in the treatment. |
Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. UK (2011)2020 Waldon N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It's more scary not to know: a qualitative study exploring the information needs patients with systemic lupus erythematosus at the time diagnosis. Musculoskeletal Care. 2011;9:228-38.
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It was found that patients requested better clarification in the post-diagnosis, in addition to professional help. |
In general, participants stated that the support provided at the time of the diagnostic information was insufficient for their needs. They would like to obtain more detailed information, by various means, provided that basically backed up by professionals and available at any time of the patient's trajectory. The challenge for health professionals is to meet those needs in the most beneficial and effective way. |
Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. UK (2011)1919 Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. It's like taking poison to kill poison, but I have to get better: a qualitative study of beliefs about medicines in rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) patients of South Asian Origin. Lupus. 2011;20:837-44.
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There was a request for further information about drugs, longitudinal effects on the medication and the individuality of each patient. |
The influence of spiritual beliefs, concerns about side effects of medications, religious beliefs about the incidence of disease and barriers to communication with professionals regarding medication were found. In general, a negative way to understand the importance of the medication can be perceived, which reveals a need for educational intervention for medication adherence. |
Berckerman NL. USA (2011)1616 Berckerman NL. Living with lupus: a qualitative report. Soc Work Health Care. 2011;50:330-43.
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Relevant topics presented by patients: depression, uncertainties about the disease, emotional fatigue and physical and financial hardships. |
Emerging themes indicated high vulnerability to depressive states. Manifestations of depression and anxiety are related to the management of the uncertainty of the disease and to physical and emotional stress arising from the experience of a chronic disease, as well as to the associated financial aspects. Such psychosocial aspects must be considered, from the screening to the evaluation and planning of psychosocial treatment with this population. |
McElbhone K, Abbott J, Gray J, Williams A, Teh LS. UK (2010)1515 McElbhone K, Abbott J, Gray J, Williams A, Teh LS. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study. Lupus. 2010;19:1640-7.
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Relevant themes were: prognosis and course of the disease, body image, effects of treatment, fatigue/pain, losses, specific care, cognition and pregnancy |
It has been found through research that the majority of respondents perceive a negative impact of SLE on their lives. The results presented in this study identified important issues that can inform physicians about SLE patients’ outlook, enabling these professionals to undertake a new management with respect to symptoms presented during the course of the disease |
Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Sweden (2010)2222 Pettersson S, Möller S, Svenungsson E, Gunnarsson I, Welin Henriksson E. Women's experiences of SLE related fatigue: a focus group interview study. Rheumatology (Oxford). 2010;49:1935-42.
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The report of the patients suggests that they can control fatigue in their lives in various situations, but in most cases, its occurrence severely limits the daily life routine. |
Health professionals are encouraged to take a more active role to empower people with SLE to meet their own balance, as a way to achieve a situation of “being in control”. |
Woods-Giscombe C L. USA (2010)1818 Woods-Giscombe CL. Superwoman schema: African-American women's view on stress and health. Qual Health Res. 2010;20:668-83.
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Interests in the role of patients for family/community preservation, as well as interests of self-preservation. |
The results of this study indicate that the role of “Wonder Woman” is a multidimensional phenomenon that encompasses features such as the obligation to express strength, emotional suppression, demonstrate resistance to vulnerability and dependency, determination to succeed and obligation to help others. According to the women in this study, the role of “Wonder Woman” involves socio-historical and personal contextual factors as well as themes of survival and health status. |
Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R et al. USA (2010)1717 Robinson D, Aguilar D, Schoenwetter M, Dubois R, Russak S, Ramsey-Goldman R. Impact of systemic lupus erythematosus on health, family and work: the patient perspective. Arthritis Care Res. (Roboken). 2010;62:266-73.
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Patients reported their clinical doubts with respect to pain, fatigue, withdrawal from work/school and skin problems |
In general, SLE patients report symptoms that could significantly affect their daily life functioning. Treatments that substantially improve disease manifestations will offer considerable benefits for patients, medical treatment and society. |
Wittmann L, Sensky T. Meder L, Michel B, Stoll T, Büchi S. Switzerland (2009)1111 Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S. Suffering and posttraumatic growth in women with systemic lupus erythematosus (SLE): a qualitative/quantitative case study. Psychosomatics. 2009;50:362-74.
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Various forms of suffering alleviated with personal reorganization when facing disease. |
The results were consistent with the concept of suffering as a psychological process triggered and sustained by a threat of assessment, to the self or “personality”. The results suggest that the various types of pain have to be differentiated. Thus, recognizing personal growth, in response to the experience of illness, is something that can reduce suffering. |
Chambers SA, Raine R, Rahman A, Isenberg D. UK (2009)1313 Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford). 2009;48:266-71.
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The main reason suggested is the prolonged use of medications, and their side effects. |
The reasons for patients to take (or not take) their drugs are largely related to previous experiences with the disease. However, an improvement in communication between doctors and patients may promote better adherence in SLE patients. |
Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. UK (2008)1414 Chambers S, Rine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17:761-9.
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Noncompliance presented, as factors: cost and difficulty of obtaining the medication, in addition to side effects. |
Conclusion: Socio-economic constraints and limited availability of drugs are particularly important influences on the low adhesion in Jamaican SLE patients. Religious beliefs and the use of herbal remedies do not seem to adversely affect adherence, but are used when the medication can not be obtained. |
Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. (2007)99 Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to person with systemic lupus erytehematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57:1287-95.
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Overall, one can verify similarities between the evaluation instruments and concepts stemmed from patients: body, emotional factors, environmental factors and personal factors. |
Disease activity affects personal, social and interactional factors. |
Araújo AD, Traverso-Yepez M. Brazil (2007)2323 Araújo AD, Traverso-Yepez M. Expressões e sentidos do lúpus eritematoso sistêmico (LES). Est Psicol. 2007;12:119-27.
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Various forms of significance were found in the patients, changing with the progression of the disease. |
One needs an interdisciplinary approach to disease complexity, considering the biopsychosocial dimension involved in the process, given the many meanings attributed by respondents. |
Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. USA (2007)1010 Costernbaden KH, Brome D, Blanch D, Gall V, Karlson E, Liang MH. Factors determing participation in prevention trials among systemic lupus erithematosus patients: a qualitative study. Arthritis Rheum.. 2007;57:49-55.
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Demographic factors were important in decisions on prevention: study, personal benefit, physical impairment. |
The purpose in determining what are the factors considered by patients with SLE, while participating in trials of disease prevention, as well as if the disease correlates with the study design, was answered concluding that similar factors have different weights between participants and nonparticipants. Thus, the results suggest that processes of health education, physician recruitment and limiting the time required, may increase the recruitment of patients with SLE for clinical prevention trials. |
Meldson C. USA (2006)1212 Meldson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16:982-97.
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The main factor reported by patients was the cognitive impairment after diagnosis. |
The complexity of a life with lupus is multidimensional, with regards to overlapping issues. Life with lupus is identified as an life of uncertainty, with a sense of identity change and the need to deal with the financial burden arising from the disease. |
Mattje GD, Turato ER. Brazil (2006)88 Mattje GD, Turato ER. Life with systemic lupus erythematosus as reported in outpatient's perspective: a clinical-qualitative study in Brazil. Rev Latino-Am Enfermagem. 2006;14:475-82.
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Change in life routine for patients and the concepts they construct about their illness were observed. |
The reactions of the patients included an attempt to rebuild their relationships relying on their own strengths. Family and interpersonal conflicts of these patients appear to be associated with the idea that family and friends do not understand the nature of the disease. |
Hale ED, Trehame GJ, et al. Reino Unido (2006)66 Hale ED, Trehame GJ, et al. "Joining the dots" for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study. Ann Rheum Dis. 2006;65:585-9.
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Patients do not understand the precautions to be taken. Further information from professionals on the subject are suggested. |
SLE patients do not feel that are understood by health professionals or by the people close to them. The support of trained volunteers and patients with SLE can ensure a better information, because these are individuals with personal experience. These services can improve communication and help minimize the isolation of patients with SLE. |
Goodmamn D, Morrissey S, Graham D, Bossingham D. Australia (2005)77 Goodmamn D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Helth Research.. 2005;15:606-19.
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The results point to different forms of perception of the disease, which are modified with the sickening process. |
Professionals should be prepared for the likelihood of changes in the representations of the disease throughout its evolution, as this can be useful in interventions in patients with SLE. |