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1.
Trials ; 20(1): 529, 2019 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-31443732

RESUMO

BACKGROUND: Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. METHODS: This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, "mentored" or "support group" controlled design, we will assess the efficacy and mechanism(s) of this intervention in self-management, disease activity, and HRQOL. DISCUSSION: This is the first study to test peer mentorship as an alternative strategy to improve outcomes in African American women with SLE. This could result in a model for other programs that aim to improve disease self-management, disease activity, and HRQOL in African American women suffering from chronic illness. The peer mentoring approach is uniquely fitted to African Americans, and this intervention has the potential to lead to health improvements for African American women with SLE that have not been attainable with other interventions. This would significantly reduce disparities and have considerable public health impact. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03734055 . Registered on 27 November 2018.


Assuntos
Afro-Americanos/psicologia , Comportamentos Relacionados com a Saúde/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Lúpus Eritematoso Sistêmico/terapia , Tutoria , Infuência dos Pares , Autogestão , Feminino , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/etnologia , Lúpus Eritematoso Sistêmico/psicologia , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Fatores Sexuais , Fatores de Tempo , Resultado do Tratamento
2.
Lupus ; 28(9): 1148-1153, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31369342

RESUMO

OBJECTIVE: Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease with treatment manifestations that can cause changes in appearance, including skin rashes, alopecia, vitiligo, and scars. SLE has been shown to adversely impact body image outcomes, and previous research has identified that greater disease activity is associated with worse body image outcomes which, in turn, are associated with greater depressive symptoms. For patients with SLE who also experience significant pain, poor body image outcomes may further compromise wellbeing and lead to greater depressive symptoms. The role of pain in body image has not been explored in SLE. Thus, the present study examined whether body image (specifically, body image-related quality of life) serves as a mediator of the relationship between pain and depressive symptoms among patients with SLE. METHODS: Multiple mediation analysis was used to examine the hypothesis that body image-related quality of life mediates the relationship between pain and depressive symptoms in a sample of patients with SLE (N = 135) from an urban region in Los Angeles, California. RESULTS: The sample was predominately female (92.6%) with a mean disease duration of approximately 17 years. Approximately one-quarter of the sample had elevated depressive symptoms. Body image-related quality of life was a significant mediator in the relationship between pain and depressive symptoms. The model accounted for 51% of the total variance in depressive symptoms (R2 = 0.51). CONCLUSION: This cross-sectional study suggested that body image-related quality of life may mediate the effects of pain on depressive symptoms among patients with SLE.


Assuntos
Imagem Corporal/psicologia , Depressão/epidemiologia , Lúpus Eritematoso Sistêmico/psicologia , Dor/epidemiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Depressão/etiologia , Feminino , Humanos , Los Angeles , Lúpus Eritematoso Sistêmico/fisiopatologia , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Qualidade de Vida , Adulto Jovem
3.
Trends Psychiatry Psychother ; 41(2): 128-135, 2019 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-31291411

RESUMO

OBJECTIVE: This study aimed to identify and analyze the interaction structures (ISs) (patterns of reciprocal interaction between the patient-therapist dyad) that characterize the process of a successful long-term psychodynamic psychotherapy (28 months) of a patient with chronic diseases (lupus and fibromyalgia) and somatic symptoms. METHODS: The 113 sessions were videotaped and analyzed alternately (n = 60) by independent judges using the Psychotherapy Process Q-Set. Inter-rater reliability ranged from 0.60 to 0.90, with a mean of r = 0.71 (Pearson's correlation). Through a principal component exploratory factor analysis, four ISs were identified. RESULT: The patterns of interaction between patient and therapist showed clinical validity (i.e., they were easily interpretable in the context of the case under study). The ISs were non-linear and more or less prominent across different treatment sessions and stages. Some ISs were similar to those in other studies, and others were probably unique to the present process. In addition, some ISs were independent, whereas others were interrelated over time. CONCLUSION: Process studies, such as the present one, seek to address questions about the characteristics of the interaction between patient and therapist as well as to identify particular patterns of interaction that are most prominent with a specific patient at a specific condition or time. Therefore, these studies can provide some support in establishing knowledge for clinical practice, assisting in the training of therapists, as well as in the elaboration of general guidelines for the technical management of patients with specific characteristics.


Assuntos
Fibromialgia/psicologia , Lúpus Eritematoso Sistêmico/psicologia , Relações Profissional-Paciente , Psicoterapia Psicodinâmica , Aliança Terapêutica , Idoso , Emoções , Feminino , Humanos
4.
Lupus ; 28(7): 878-887, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31188723

RESUMO

BACKGROUND: Depressive and anxiety symptoms are common in children and youth and may impact outcomes for individuals with childhood-onset systemic lupus erythematosus. Research into the prevalence of depressive and anxiety symptoms and childhood-onset systemic lupus erythematosus comorbidity has reported conflicting results. OBJECTIVE: To synthesize current knowledge regarding the prevalence of depressive and anxiety symptoms in childhood-onset systemic lupus erythematosus. METHODS: Studies were identified through a comprehensive search of MEDLINE, EMBASE, PsychINFO, LILACS and Web of Science (from database inception to July 2018) using MESH headings and keywords for 'lupus erythematosus', and 'depression' or 'anxiety'. Included studies measured depressive and/or anxiety symptoms prospectively among children and youth aged 8 to 21 years with a diagnosis of childhood-onset systemic lupus erythematosus. Neuropsychiatric systemic lupus erythematosus was included. Studies without use of validated screening tools for major depressive disorder or anxiety disorders were excluded, as were studies where diagnosis was by retrospective analysis of patient charts. Data were extracted by two independent coders and where discrepancies occurred, agreement was reached by consensus. RESULTS: In total, 70 studies met the criteria for full text review and of these, 14 were included in the final analysis. The majority (70%) of studies were of cross-sectional design, with sample sizes ranging from 20 to 100 (mean = 48) participants. The mean age of participants was 15.9 years and participants were predominantly female. Prevalence rates for depressive symptoms ranged from 6.7% to 59%. Anxiety symptom prevalence was 34% to 37%. All studies employed self-report instruments to assess depressive and anxiety symptoms; none of the studies utilized a semi-structured diagnostic interview to make psychiatric diagnoses. Significant heterogeneity precluded meta-analysis of the data. CONCLUSIONS: Depressive and anxiety symptoms may be common comorbidities of childhood-onset systemic lupus erythematosus; however, current research is limited by a paucity of studies, small sample sizes and an inability to confirm psychiatric diagnoses. Future research addressing these limitations is needed.


Assuntos
Ansiedade/complicações , Depressão/complicações , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/psicologia , Adolescente , Idade de Início , Criança , Comorbidade , Humanos , Prevalência , Escalas de Graduação Psiquiátrica , Adulto Jovem
5.
Lupus ; 28(8): 937-944, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31166867

RESUMO

OBJECTIVE: The Peer Approaches to Lupus Self-management (PALS) program was developed as a peer mentoring tool to improve health behaviors, beliefs, and outcomes in African American women with systemic lupus erythematosus (SLE). This study aims to assess the cost of the PALS intervention and determine its effectiveness when compared to existing treatments. METHODS: Peer mentors and mentees were paired on shared criteria such as life stage, marital status, or whether they were mothers. This 12-week program consisted of a weekly peer mentoring session by telephone. Cost of healthcare utilization was evaluated by assessing the healthcare costs pre- and post-intervention. Validated measures of quality of life, self-management, disease activity, depression, and anxiety were collected. Total direct program costs per participant were totaled and used to determine average per unit improvement in outcome measures. The benefit-cost ratio and pre- versus post-intervention hospital charges were examined. RESULTS: A total of 20 mentees and 7 mentors were enrolled in the PALS program. All PALS pairs completed 12 sessions lasting an average of 54 minutes. Mentees reported statistically significant decreases in patient-reported disease activity, depression, and anxiety, with improved trends in patient activation or patient engagement in their disease and management. The total cost per patient was $1291.50, which was $107.62 per patient per week. There was a savings of $23,417 per individual receiving the intervention with a benefit-cost ratio of 18.13 per patient. CONCLUSION: These findings suggest that the PALS intervention was effective in improving patient-level factors and was cost-effective. Future research will need to validate these findings in a larger sample.


Assuntos
Afro-Americanos , Lúpus Eritematoso Sistêmico/economia , Lúpus Eritematoso Sistêmico/psicologia , Tutoria , Grupo Associado , Autogestão , Adulto , Idoso , Análise Custo-Benefício , Feminino , Humanos , Lúpus Eritematoso Sistêmico/reabilitação , Pessoa de Meia-Idade , Participação do Paciente , Projetos Piloto , Qualidade de Vida , Autoeficácia , Adulto Jovem
6.
Health Qual Life Outcomes ; 17(1): 99, 2019 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-31174541

RESUMO

BACKGROUND/PURPOSE: The LFA REAL™ is a measurement system for evaluating lupus disease activity from both clinician and patient perspectives. Patients' viewpoints are captured using a patient-reported outcome (PRO) questionnaire. A series of visual analog scales are designed to rate disease severity and progress over the past 4 weeks. Brief instructions guide the patient to distinguish between active, potentially reversible symptoms and chronic pain or discomfort that are more likely due to damage. Beyond its simplicity and efficiency, the PRO can provide versatile assessments from a global, organ-based, and symptom-specific level. This paper describes the patient-centered approach used to evaluate the content validity of the LFA-REAL PRO. METHODS: The PRO was developed in accordance with FDA guidance. A two-phase qualitative study was performed with 25 lupus patients, 10 who participated in concept elicitation (Phase 1) and 15 in cognitive debriefing interviews (Phase 2). Qualitative data were analyzed using ATLAS.ti software v7.5. Upon completion of the interviews, participants completed the draft PRO and additional measures to characterize the sample. RESULTS: The mean age of participants was 45.6 and 88% were female, as expected in a lupus population. The mean SF-36 physical component score was 29.8 and the mean mental component score was 46.4. Phase 1 elicited symptom saturation and mapping of the draft PRO. Fatigue was reported by 100% of patients, highlighting its importance as a measurable domain. Additionally, 100% of patients spontaneously mentioned arthritis, which may be more important to this group than previously estimated, substantiating the approach of this PRO to break down components of arthritis into joint pain, stiffness, and swelling. Shortness of breath and fever were reported more frequently than expected. Phase 2 data demonstrated that participants found the instrument easy to use and offered recommendations to improve clarity, leading to adjustments in wording and formatting. CONCLUSIONS: Results suggest that the LFA-REAL PRO has content validity and, with some modifications suggested by participants, is ready for quantitative validation, including tests of reliability, validity, responsiveness to change, and performance relative to other PROs used in lupus trials. After validation, the LFA-REAL system is intended for use in clinical practice and research.


Assuntos
Lúpus Eritematoso Sistêmico/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adulto , Feminino , Humanos , Lúpus Eritematoso Sistêmico/fisiopatologia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Inquéritos e Questionários , Escala Visual Analógica
7.
Lupus ; 28(7): 854-861, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31159651

RESUMO

INTRODUCTION: Cognitive impairment is a common neuropsychiatric manifestation of systemic lupus erythematosus (SLE). However, it is not routinely assessed for despite its high prevalence and significant disease burden. AIMS: This study aimed to determine the prevalence of mild cognitive impairment (MCI) using the Montreal Cognitive Assessment (MoCA) and its associated factors among patients diagnosed with SLE in Malaysia. METHODS: A total of 200 SLE patients were recruited prospectively from the outpatient clinics of two tertiary hospitals in Malaysia. Standardized clinical interview was utilized to obtain information on socio-demographic characteristics. All patients were then assessed using the MoCA questionnaire for presence of cognitive impairment; the Patient Health Questionnaire 9 (PHQ-9) for presence of depressive symptoms; and the Wong-Baker Faces Pain Scale (WBFPS) for severity of pain. The evaluation of disease activity and severity were performed by the treating rheumatologists and nephrologists using the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and Systemic Lupus International Collaborating Clinics Damage Index (SLICC DI). RESULTS: The prevalence of MCI was 35%. The significant associated factors from the bivariate analysis were male gender (p = 0.04), educational level (p = 0.00), WBFPS score (p = 0.035) and anticardiolipin IgM (p = 0.01). Further analysis using logistic regression model found that male gender (OR = 7.43, 95% confidence interval 1.06-52.06, p = 0.04), lower educational level (OR = 4.4, 95% confidence interval 1.47-13.21, p = 0.01) and presence of anticardiolipin IgM (OR = 6.81, 95% confidence interval 1.45-32.01, p = 0.031) were associated with impaired MoCA scores. Also, increasing pain scores increased the risk of patients being affected by cognitive impairment. CONCLUSION: Over one-third of patients with SLE in our cohort were found to have MCI. Risk factors included male gender, lower educational level, higher pain score and presence of anticardiolipin IgM. Physicians are encouraged to perform routine screening to detect cognitive dysfunction in patients with SLE in their clinical practice as part of a more comprehensive management.


Assuntos
Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/epidemiologia , Lúpus Eritematoso Sistêmico/psicologia , Adulto , Estudos Transversais , Feminino , Humanos , Modelos Logísticos , Lúpus Eritematoso Sistêmico/complicações , Malásia/epidemiologia , Masculino , Testes de Estado Mental e Demência , Pessoa de Meia-Idade , Prevalência , Estudos Prospectivos , Inquéritos e Questionários
8.
Arthritis Rheumatol ; 71(9): 1413-1425, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31102496

RESUMO

Cognitive dysfunction (CD) is an insidious and underdiagnosed manifestation of systemic lupus erythematosus (SLE) that has a considerable impact on quality of life, which can be devastating. Given the inconsistencies in the modes of assessment and the difficulties in attribution to SLE, the reported prevalence of CD ranges from 5% to 80%. Although clinical studies of SLE-related CD have been hampered by heterogeneous subject populations and a lack of sensitive and standardized cognitive tests or other validated objective biomarkers for CD, there are, nonetheless, strong data from mouse models and from the clinical arena that show CD is related to known disease mechanisms. Several cytokines, inflammatory molecules, and antibodies have been associated with CD. Proposed mechanisms for antibody- and cytokine-mediated neuronal injury include the abrogation of blood-brain barrier integrity with direct access of soluble molecules in the circulation to the brain and ensuing neurotoxicity and microglial activation. No treatments for SLE-mediated CD exist, but potential candidates include agents that inhibit microglial activation, such as angiotensin-converting enzyme inhibitors, or that protect blood-brain barrier integrity, such as C5a receptor blockers. Structural and functional neuroimaging data have shown a range of regional abnormalities in metabolism and white matter microstructural integrity in SLE patients that correlate with CD and could in the future become diagnostic tools and outcome measures in clinical trials aimed at preserving cognitive function in SLE.


Assuntos
Disfunção Cognitiva/etiologia , Lúpus Eritematoso Sistêmico/psicologia , Anticorpos/sangue , Anticorpos/imunologia , Barreira Hematoencefálica , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/epidemiologia , Citocinas/sangue , Citocinas/imunologia , Humanos , Lúpus Eritematoso Sistêmico/sangue , Lúpus Eritematoso Sistêmico/imunologia , Testes Neuropsicológicos , Prevalência
9.
Bull Hosp Jt Dis (2013) ; 77(2): 92-98, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31128578

RESUMO

INTRODUCTION: Patients with systemic lupus erythematosus (SLE) face lifelong challenges from chronic and disabling symptoms. The toolkit for assessing patient progress lacks a simple, scalable index that includes both physician assessments and patient experiences. Clinician and patient reported outcomes (ClinROs and PROs) were developed in isolation and discrepancies in their results promote confusion. The Lupus Foundation of America-Rapid Evaluation of Activity in Lupus (LFA-REAL™) was designed as a simple, versatile instrument of simple additive scales. Dual physician and patient components allow for a complete evaluation of disease activity. This report presents the early development of the LFA-REAL™ PRO. METHODS: An initial focus group was conducted consisting of 10 SLE patients who ranked 32 areas of health and identified additional domains that are important to people with lupus. Subsequently, 19 domains were ranked by 100 consecutive patients with SLE from New York and Oklahoma City. RESULTS: The 10 focus group participants were female and had a mean age of 38.6. The dimensions they identified were generally in two categories: symptoms and impacts. The main symptoms were fatigue, joint and muscle pain, and general pain. The main impacts were sleep, drug side effects, and physical well-being. The 100 patients with SLE (90% female, mean age 37.5 years) ranked the 19 fields of health in order of importance. The top eight domains ranked were joint and muscle pain, fatigue, experience of quality of life, general pain, physical well-being, emotional well-being, organ involvement, and family life. Clinicians reviewed the data and decided on an instrument that would differentiate between lupus related symptoms and impact on quality of life as well as differentiate active symptoms from chronic damage. The disease activity instrument draft included all the identified symptoms: rash, joint symptoms (pains, stiffness, and swelling), muscle pain, fatigue, organ involvement symptoms (fever, chest pain, shortness of breath, leg swelling, and other), and hair loss. DISCUSSION: The PRO derived here is a composite disease activity instrument to accompany the physician reported assessment. The ClinRO and the PRO will provide the spectrum of lupus disease activity and bring the patient's experience and provide essential quantitative data to the evaluation of lupus in routine clinical care and clinical research.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Fadiga , Lúpus Eritematoso Sistêmico , Dor , Qualidade de Vida , Transtornos do Sono-Vigília , Atividades Cotidianas/psicologia , Adulto , Avaliação da Deficiência , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/diagnóstico , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/etiologia , Fadiga/diagnóstico , Fadiga/etiologia , Feminino , Nível de Saúde , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/fisiopatologia , Lúpus Eritematoso Sistêmico/psicologia , Masculino , Dor/diagnóstico , Dor/etiologia , Gravidade do Paciente , Medidas de Resultados Relatados pelo Paciente , Índice de Gravidade de Doença , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/etiologia
10.
Health Qual Life Outcomes ; 17(1): 65, 2019 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-30992020

RESUMO

BACKGROUND: Systemic lupus erythematosus (SLE) often has a profound negative impact on health-related quality of life (HRQoL). In the absence of any qualitative studies in sub-Saharan Africa, we undertook a study to explore living experiences, perceptions and unmet needs of South African patients with SLE. METHODS: Twenty-five women with SLE consented to participate in the study. They underwent individual in-depth interviews exploring their physical concerns, emotional health, sexual well-being and fertility. NVivo software was used for analysis. RESULTS: Participants were either of black ancestry or mixed racial ancestry, mainly indigent with only a quarter gainfully employed. Living with pain was the most common complaint, negatively impacting on activities of daily living (ADL), family expectations, social life, sleep and intimacy. Most participants expressed challenges of living with fatigue, and many felt their fatigue was misconstrued as being 'simply lazy'. This pernicious fatigue had negative consequences on many facets of ADL, including caring for dependants, job sustainability and sexual well-being. All participants experienced low emotional states, often associated with suicidal ideations. Many experienced difficulties with fertility and childbearing and these were exacerbated in many instances by the pessimism of health care providers, resulting in confusion and depression. Physical disfigurements resulting from lupus-associated alopecia and rashes and corticosteroid-induced weight fluctuations were a major concern. These changes often affected self-image and libido, leading to strained personal relationships. Coping mechanisms that participants adopted included intense spiritual beliefs, 'pushing through the difficult times' and use of alternative therapies to relief symptoms was common. A poor understanding of SLE on the part of participant's family and the community, coupled with the unpredictable course of the disease, exacerbated frustration and social exclusion. For most, limited income, lack of basic services, family dependencies, and comorbid diseases, such as human immune deficiency virus (HIV), exacerbated the daily negative SLE experiences. CONCLUSION: In this study of mainly indigent South African women, SLE is associated with complex, chronic and challenging life experiences. The chronic relapsing and unpredictable nature of the disease, poor understanding and acceptance of SLE, compounded by a background of poverty, inadequate social support structures, negatively impact on a range of personal, social and vocational daily life experiences. Improved access to psychosocial services and SLE education might result in better outcomes. TRIAL REGISTRATION: (Ethics Project identification code: 275/2016 and M160633 registered 10 & 29 August 2016).


Assuntos
Adaptação Psicológica , Lúpus Eritematoso Sistêmico/psicologia , Qualidade de Vida , Atividades Cotidianas , Adulto , Grupo com Ancestrais do Continente Africano/estatística & dados numéricos , Depressão/etiologia , Depressão/psicologia , Fadiga/etiologia , Fadiga/psicologia , Feminino , Humanos , Lúpus Eritematoso Sistêmico/complicações , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Dor/psicologia , Pesquisa Qualitativa , Fatores Socioeconômicos , África do Sul , Adulto Jovem
11.
Int J Rheum Dis ; 22(6): 1002-1007, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30968556

RESUMO

AIM: To determine the prevalence of work disability (WD) among patients with systemic lupus erythematosus (SLE) and its associated factors. METHOD: This was a cross-sectional study involving SLE patients aged 18-56 years from Universiti Kebangsaan Malaysia Medical Centre (UKMMC). Employment history was obtained from clinical interviews. WD was defined as unemployment, interruption of employment or premature cessation of employment due to SLE at any time after the diagnosis. SLE disease characteristics, presence of organ damage and Safety of Estrogens in Lupus Erythematosus National Assessment-SLE Disease Activity Index (SLEDAI) flare index were determined from the medical records. Self-reported quality of life (QoL) was performed using the Medical Outcomes Study Short Form-36 (SF-36). Demographic factors, disease characteristics, and QoL were compared between patients with and without WD using statistical analyses. RESULTS: A total of 215 patients were recruited and the majority were Malay (60.5%), followed by Chinese (33.5%), Indian (4.5%) and others (n = 4, 1.9%). The prevalence of WD was 43.2% (n = 93) with 22.3% (n = 48) patients were unemployed at the time of study. Over half the patients with WD (n = 51, 54.8%) had onset of disability at <5 years from diagnosis. Patients with WD had significantly lower health-related QoL. The independent factors associated with WD were SLEDAI score at diagnosis, frequency of flare, Systemic Lupus International Collaborating Clinics score, being married, had lower education and lupus nephritis. CONCLUSION: We found a high rate of WD in patients with SLE and it was significantly associated with SLE-related factors, in particular higher disease activity, presence of renal involvement and organ damage.


Assuntos
Avaliação da Deficiência , Lúpus Eritematoso Sistêmico/diagnóstico , Avaliação da Capacidade de Trabalho , Desempenho Profissional , Adolescente , Adulto , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Lúpus Eritematoso Sistêmico/epidemiologia , Lúpus Eritematoso Sistêmico/fisiopatologia , Lúpus Eritematoso Sistêmico/psicologia , Malásia/epidemiologia , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Prevalência , Prognóstico , Qualidade de Vida , Fatores de Risco , Adulto Jovem
12.
Complement Ther Clin Pract ; 35: 18-21, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-31003655

RESUMO

BACKGROUND: and purpose: The stress and systemic lupus erythematosus (SLE) are intertwined and affecting each other. This pilot study evaluated the mindfulness-based cognitive therapy (MBCT) in Korean patients with SLE. MATERIALS AND METHODS: The Korean version of the Beck Depression Inventory-II (BDI-II), Beck Anxiety Inventory (BAI), Satisfaction with Life Scale (SWLS), and Perceived Stress Scale (PSS) were evaluated for the effect of the MBCT in 25 patients. RESULTS: The BDI-II, BAI, SWLS, and PSS before the MBCT were 24.2 ±â€¯10.6, 19.1 ±â€¯9.7, 14.7 ±â€¯6.5, and 20.4 ±â€¯3.8, respectively. Eighteen patients completed the MBCT. After the MBCT, BDI-II, BAI, and PSS improved to 17.4 ±â€¯13.0 (p < 0.01), 13.4 ±â€¯7.7 (p = 0.04), and 17.9 ±â€¯4.6 (p = 0.04), respectively. However, SWLS and SLE disease activity did not. CONCLUSION: The MBCT could reduce the anxiety, depression, and stress but not SLE disease activity.


Assuntos
Ansiedade/terapia , Depressão/terapia , Lúpus Eritematoso Sistêmico/psicologia , Atenção Plena/métodos , Estresse Psicológico/terapia , Adulto , Ansiedade/complicações , Transtornos de Ansiedade/complicações , Transtornos de Ansiedade/terapia , Terapia Cognitivo-Comportamental , Depressão/complicações , Transtorno Depressivo/complicações , Transtorno Depressivo/terapia , Feminino , Humanos , Lúpus Eritematoso Sistêmico/complicações , Masculino , Pessoa de Meia-Idade , Projetos Piloto , República da Coreia , Estresse Psicológico/complicações
13.
Lupus ; 28(6): 703-712, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30961418

RESUMO

BACKGROUND: Non-pharmacologic therapies have been deemed as potentially beneficial for patients with systemic lupus erythematosus. We conducted an updated review to determine the effects of these therapies to inform practice. METHODS: A literature search was performed using PubMed (MEDLINE), EMBASE, Cochrane, PsychINFO, the Cumulative Index to Nursing and Allied Health Literature, Web of Science, and Google Scholar from inception until August 2018. We included randomized controlled trials of non-pharmacologic therapies in systemic lupus erythematosus patients with sample size ≥10. Systemic lupus erythematosus was defined by 1982 or 1997 American College of Rheumatology criteria. Studies were synthesized separately by patient-reported outcomes and disease activity. Due to the heterogeneity of interventions and comparisons, a meta-analysis was not performed. RESULTS: A total of 15 randomized controlled trials involving 846 participants met the inclusion criteria. Of the 15 trials, eight used exercise interventions, six used psychological interventions (one group psychotherapy, three cognitive behavioral therapies, one psychoeducation, one mindfulness-based cognitive therapy) and one used electro-acupuncture. Five of 15 studies utilized control groups consisting of usual medical care. Other studies included control interventions of relaxation, attention placebo, symptom monitoring support, education, minimal needling, isotonic and resistance exercise. Compared with the control conditions, non-pharmacological interventions were associated with a significant improvement in fatigue in three out of six studies. Three out of eight studies reported improved anxiety and depression, and one study reported improved pain after interventions. Seven out of 11 studies reported improvement in overall quality of life in at least one domain of the Short-Form Health Survey. Of note, no studies demonstrated an improvement in disease activity after 5-52 weeks of non-pharmacological therapies. CONCLUSION: This review showed promising results for physical exercise and psychological interventions as adjuncts to traditional medical therapy for improvement in fatigue, depression, pain and quality of life for systemic lupus erythematosus. Further high-quality randomized controlled trials with longer follow-up periods are warranted.


Assuntos
Depressão/terapia , Fadiga/terapia , Lúpus Eritematoso Sistêmico/terapia , Terapia Cognitivo-Comportamental , Terapia por Exercício , Fadiga/psicologia , Humanos , Lúpus Eritematoso Sistêmico/psicologia , Manejo da Dor , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do Tratamento
14.
Lupus ; 28(3): 371-382, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30813871

RESUMO

OBJECTIVE: To evaluate the impact of systemic lupus erythematosus (SLE) on health-related quality of life (HRQoL) assessed with SF-36 and explore factors associated with HRQoL in SLE patients. METHODS: A random-effect meta-analysis was performed to calculate extracted data. Sensitivity and subgroup analyses were performed to distinguish sources of heterogeneity. RESULTS: A total of 36 articles were finally included in this meta-analysis, including 6510 patients. The pooled mean scores of SF-36 physical component summary and mental component summary were 46.10 (95% confidence interval (CI): 43.09-49.10) and 50.37 (95% CI: 47.78-52.87), respectively. Spearman's correlation analysis found that mean age, proportion of female participants, and publication decades were negatively associated with some of the SF-36 domains. Sample size and SLEDAI were positively associated with some of the SF-36 domains. Patients with SLE have lower HRQoL in comparison to the general population. CONCLUSIONS: SLE has a significant impact on HRQoL, which proves that the necessity of improving HRQoL in SLE patients cannot be ignored. Measuring HRQoL should be considered as an indispensable part of the overall evaluation of health conditions of SLE patients.


Assuntos
Lúpus Eritematoso Sistêmico/psicologia , Qualidade de Vida , Inquéritos e Questionários , Estudos de Casos e Controles , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Masculino , Índice de Gravidade de Doença
15.
Lupus ; 28(5): 642-650, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30907294

RESUMO

OBJECTIVES: The aims of this study are (1) to characterize factors influencing self-management behaviors and quality of life in adolescent and young adult (AYA) patients with childhood-onset systemic lupus erythematosus (cSLE) and (2) to identify barriers and facilitators of treatment adherence via focus groups. METHODS: AYAs with cSLE ages 12-24 years and primary caregivers of the adolescents participated in this study. Recruitment occurred during pediatric rheumatology clinic visits at a Midwestern children's hospital or the hospital's cSLE active clinic registry. Information about disease severity was obtained from patient health records. Pain and fatigue questionnaires were administered. Descriptive statistics were used to analyze data. RESULTS: Thirty-one AYA patients and caregivers participated in six focus groups. Ten major themes emerged from sessions; four were expressed both by the AYA and caregiver groups: knowledge deficits about cSLE, symptoms limiting daily function, specifically mood and cognition/learning, barriers and facilitators of adherence, and worry about the future. Themes unique to AYA participants included symptoms limiting daily functioning-pain/fatigue, self-care and management, impact on personal relationships, and health care provider communication/relationship. For caregiver groups unique themes included need for school advocacy, disruption of family schedule, and sense of normalcy for their adolescent. CONCLUSION: AYAs with cSLE face a lifelong disease characterized by pervasive pain, fatigue, organ damage, isolation-social and/or physical-and psycho-socioeducational challenges. This study confirmed that continued psychosocial support, health information education, adherence interventions, and personalized treatment plans are necessary to increase self-management and autonomy in AYAs with cSLE.


Assuntos
Cuidadores/psicologia , Lúpus Eritematoso Sistêmico/fisiopatologia , Lúpus Eritematoso Sistêmico/psicologia , Autogestão , Adolescente , Idade de Início , Criança , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Lúpus Eritematoso Sistêmico/terapia , Masculino , Ohio , Cooperação do Paciente , Qualidade de Vida , Sistema de Registros , Inquéritos e Questionários , Adulto Jovem
16.
PLoS One ; 14(2): e0211313, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30789919

RESUMO

OBJECTIVE: To analyze the relationships between illness uncertainty, social support, and coping mode in hospitalized patients with systematic lupus erythematosus (SLE). METHODS: The General Health Questionnaire, Mishel Uncertainty in Illness Scale, Social Support Rating Scale, and Medical Coping Modes Questionnaire were to the hospitalized patients with SLE (N = 200) in a tertiary hospital in Shaanxi. RESULTS: The hospitalized patients with SLE showed a moderate level of illness uncertainty. Furthermore, illness uncertainty was negatively correlated with support availability (r = -0.161, P = 0.023) and facing coping mode (r = -0.231, P = 0.001), and was positively correlated with the yielding coping mode (r = 0.249, P < 0.001). CONCLUSION: These findings suggest that support availability and coping modes were associated with moderate level of illness uncertainty, indicating that support availability support should be strengthened in hospitalized patients to actively face their disease. This subsequently improves their treatment compliance and quality of life.


Assuntos
Adaptação Psicológica , Lúpus Eritematoso Sistêmico/psicologia , Apoio Social , Incerteza , Adolescente , Adulto , Idoso , China , Feminino , Hospitalização , Hospitais , Humanos , Lúpus Eritematoso Sistêmico/patologia , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
17.
Clin Rheumatol ; 38(6): 1561-1570, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30693395

RESUMO

OBJECTIVES: To investigate how the different components of sleep dysfunction described in SLE patients combine together in sleep clusters. METHODS: We conducted a cross-sectional study on a perspective cohort of 79 SLE patients (mean age 8.2 ± 14.3 years). Sleep was evaluated using Pittsburgh Sleep Quality Index (PSQI). Clusters were defined using the single components of PSQI in a hierarchical clustering model. We used Beck Depression Inventory, Hamilton Anxiety Rating Scale, and Medical Outcomes Study Short Form 36 (SF36) to measure depressive symptoms, anxiety, and quality of life, respectively. RESULTS: Three sleep clusters were identified. The cluster 1 (N = 47) is characterized by the lowest values of PSQI total score. The cluster 2 (N = 21) presents higher values of sleep latency, but sleep duration similar to cluster 1. In cluster 3 (N = 11), we found sleep latency increased as in cluster 2, but the highest values of PSQI total score and reduced sleep duration. Scores of anxiety and sedentary time were higher in clusters 2 and 3 than in cluster 1. Cluster 3 presented the highest scores of depression and reduced mental and physical components of SF36. CONCLUSIONS: The combination of different sleep components in SLE patients allowed us to identify three patterns of dysfunction: a first cluster with better sleep latency and duration, a second with increased sleep latency but conserved duration, and a third with impairment of both latency and duration. The stratification of sleep disorders in clusters might be useful for the personalization of therapy in relation to sleep cluster membership.


Assuntos
Depressão/complicações , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/psicologia , Distúrbios do Início e da Manutenção do Sono/complicações , Adulto , Ansiedade/complicações , Análise por Conglomerados , Estudos Transversais , Feminino , Humanos , Itália , Modelos Logísticos , Lúpus Eritematoso Sistêmico/tratamento farmacológico , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Qualidade de Vida , Inquéritos e Questionários
18.
AJOB Empir Bioeth ; 10(1): 36-43, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30596341

RESUMO

BACKGROUND: Guidelines for breaking bad news are largely directed at and validated in oncology patients, based on expert opinion, and neglect those with other diagnoses. We sought to determine whether existing guidelines for breaking bad news, particularly SPIKES, are consistent with patient preferences across patient populations. METHODS: Patients from an online community responded to 5 open-ended and 11 Likert-scale questions identifying their preferences in having bad news delivered. Patient participants received a diagnosis of cancer, lupus, amyotrophic lateral sclerosis, multiple sclerosis, HIV/AIDS, or Parkinson's disease. Additionally, we surveyed all 14 English-curriculum Canadian medical schools regarding resources used to teach breaking bad news. RESULTS: Ten of 12 responding schools used the SPIKES model. Preferences of 1337 patients were consistent with the recommendations of SPIKES. There was one exception: Most patients disagree that empathetic physical touch is important and some described apprehension. Responses were consistent across disease states. Content analysis of 220 open-ended patient responses revealed 16 patient-important themes. Themes were largely addressed by the SPIKES guidelines, but five were not: ensuring timely follow-up is planned; offering informational sheets about the diagnosis; offering contact information of support organizations, with some patients preferring patient support groups while others preferring counselors; and conveying a sense of determination to aid the patient through the diagnosis. The four most patient-important components of SPIKES were physicians conveying empathy, taking their time, explaining the diagnosis and its implications, and asking the patient if they understand. CONCLUSION: SPIKES is the most commonly taught framework for breaking bad news in Canadian medical schools. This is the first work to demonstrate that the existing guidelines in breaking bad news such as SPIKES largely reflect the perspectives of many patient groups, as assessed by quantitative and qualitative measures. We highlight the most important components of SPIKES to patients and identify five additional suggestions to aid clinicians in breaking bad news.


Assuntos
Adaptação Psicológica , Diagnóstico , Acontecimentos que Mudam a Vida , Preferência do Paciente , Guias de Prática Clínica como Assunto , Revelação da Verdade , Síndrome de Imunodeficiência Adquirida/diagnóstico , Síndrome de Imunodeficiência Adquirida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Esclerose Amiotrófica Lateral/diagnóstico , Esclerose Amiotrófica Lateral/psicologia , Canadá , Comunicação , Feminino , Infecções por HIV/diagnóstico , Infecções por HIV/psicologia , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/psicologia , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/psicologia , Neoplasias/diagnóstico , Neoplasias/psicologia , Doença de Parkinson/diagnóstico , Doença de Parkinson/psicologia , Relações Médico-Paciente , Faculdades de Medicina , Inquéritos e Questionários , Adulto Jovem
19.
Rehabil Nurs ; 44(1): 2-10, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30601796

RESUMO

PURPOSE: The aim of this study was to explore relationships among health status, uncertainty, and health-related quality of life (HRQOL) in adults with systemic lupus erythematosus (SLE). DESIGN: The study was a Web-based quantitative study using a predictive correlational design, with nonprobability, convenience sampling. SAMPLE: Adults (n = 196) with SLE living in 31 U.S. states and Puerto Rico participated in the study. METHODS: Online data were collected from three regional and one national lupus organization. A correlational design determined relationships among uncertainty, health status, and HRQOL. Regression analysis was completed to identify variations in HRQOL. Demographics were described. RESULTS: As predicted, inverse relationships occurred between HRQOL and uncertainty, and between mental health and uncertainty. Mental health correlated positively with HRQOL. Physical health correlated with lower HRQOL and higher uncertainty level. Health status plus uncertainty predicted variation in HRQOL. CONCLUSIONS: Findings support use of Mishel's Uncertainty in Illness Theory for exploring factors related to HRQOL in adults with SLE and for designing theory-based interventions such as support groups and coping strategies. CLINICAL RELEVANCE: Decreasing uncertainty through education, social support, improvement in health status, and health literacy can positively impact HRQOL in adults with SLE.


Assuntos
Lúpus Eritematoso Sistêmico/complicações , Qualidade de Vida/psicologia , Incerteza , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Lúpus Eritematoso Sistêmico/psicologia , Masculino , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Porto Rico , Inquéritos e Questionários , Estados Unidos
20.
Arthritis Care Res (Hoboken) ; 71(3): 406-412, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-29726637

RESUMO

OBJECTIVE: To determine whether sleep disturbance and symptoms of depression mediate the relationship between pain and cognitive dysfunction (CD) in a sample of 115 patients with systemic lupus erythematosus (SLE). METHODS: A total of 115 patients with SLE completed questionnaires regarding pain, perceived stress, depression, sleep, and CD. Relationships among pain, sleep, depression, and CD were assessed using bootstrap mediation models, controlling for race/ethnicity, fibromyalgia diagnosis, current corticosteroid use, disease activity and damage, and perceived stress. RESULTS: Mediation analyses indicated that the effect of pain on CD was mediated by sleep disturbance (ß = 0.30) and depression symptoms (ß = 0.33). These effects were maintained even after controlling for the aforementioned covariates, of which only disease activity (ß = 0.20) and stress (ß = 0.22) remained significantly linked to CD (overall model R2 = 0.53; all P < 0.05). CONCLUSION: After controlling for disease activity and perceived stress, the relationship between pain and CD was explained by sleep disturbance and depression symptoms. Although these relationships need validation in longitudinal studies with additional measurement modalities, our findings may indicate promising, nonpharmacologic intervention avenues for SLE patients with pain and CD. Specifically, cognitive behavioral therapies for depression and sleep are known to reduce distress and enhance functioning across various psychosocial domains. Given the symptom burden of SLE, interventions that maximize potential benefits without the use of additional pharmacologic treatments may be of particular utility.


Assuntos
Disfunção Cognitiva/epidemiologia , Depressão/epidemiologia , Lúpus Eritematoso Sistêmico/epidemiologia , Medição da Dor/métodos , Dor/epidemiologia , Transtornos do Sono-Vigília/epidemiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/psicologia , Estudos Transversais , Depressão/diagnóstico , Depressão/psicologia , Feminino , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/psicologia , Masculino , Pessoa de Meia-Idade , Dor/diagnóstico , Dor/psicologia , Medição da Dor/psicologia , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/psicologia
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