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1.
Qual Life Res ; 33(2): 373-385, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37889386

RESUMO

PURPOSE: This qualitative study (GSK study: 213635) was designed to better understand sleep disturbance as experienced by individuals with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA), and the relationship between sleep disturbance and pain and other aspects of the disease and disease activity. METHODS: Sixty-minute, one-on-one, concept elicitation interviews were conducted with 30 participants (15 with RA and 15 with axSpA) from the US. Interviews were audio-recorded and transcribed verbatim. Interview transcripts were coded and analyzed to explore themes related to pain and sleep disturbance, and relationships among those themes. RESULTS: Pain was a prominent driver of sleep disturbance; 12 participants with RA (80%) and 14 with axSpA (93%) reported that pain impacted their ability to fall asleep, while all 15 with RA (100%) and 14 with axSpA (93%) reported that pain impacted their ability to stay asleep. Two-thirds of participants with RA (67%) or axSpA (60%) described a bi-directional relationship, whereby pain worsened sleep disturbance and sleep disturbance further aggravated pain. Factors other than pain, such as fatigue and emotional health, were also reported as important contributors to sleep disturbance (RA: n = 12/15, 80%; axSpA: n = 14/15, 93%). Participants with RA or axSpA described complex interconnections between fatigue, emotional health, pain, and sleep, often labeling these relationships as "vicious cycles". Notably, half of all participants reported sleep disturbance occurring without pain or other understood causes. CONCLUSION: These perspectives collected from people with RA or axSpA suggest that reducing sleep disruption directly may offer clinically relevant benefits.


Assuntos
Artrite Reumatoide , Espondiloartrite Axial , Transtornos do Sono-Vigília , Espondilite Anquilosante , Humanos , Qualidade de Vida/psicologia , Espondilite Anquilosante/psicologia , Dor , Fadiga
2.
Clin Exp Rheumatol ; 41(9): 1856-1861, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37083177

RESUMO

OBJECTIVES: Psychosocial factors are recognised as important determinants of pain experience in patients with inflammatory arthritides. Among them, pain catastrophising, a maladaptive cognitive style, observed in patients with anxiety and depressive disorders, garnered specific attention. Here, we evaluated pain catastrophising (PC) and its related domains (Rumination, Magnification, and Helplessness), in psoriatic arthritis (PsA) and axial spondyloarhtiritis (axSpA) participants, to assess its impact on disease activity. Furthermore, we analysed possible correlations of PC-Scale (PCS) with those psychometric domains which have been already related to catastrophisation in patients with chronic pain. Lastly, we aimed to define the relationship between PCS and the different variables included in the composite indices of disease activity. METHODS: A multi-centre, cross-sectional, observational study has been conducted on 135 PsA (age 56 (47-64) years, males/females 40.74/59.26%; Disease Activity in Psoriasic Arthritis (DAPSA) 13.34 (5.21-22.22)) and 71 axSpA (age 49 (37-58) years, males/females 56.34/43.66%; Bath Ankylosing Spondylitis Arthritis Activity (BASDAI) 4.17 (2.1-6.3)) participants. Multivariable regressions and correlations were performed to evaluate the relationship between pain catastrophising and both disease activity and patient-reported outcomes. RESULTS: The adjusted linear regression model showed a positive association between PCS and DAPSA as well as between PCS and BASDAI; PCS negative impacts on the subjective domains of disease activity scores. CONCLUSIONS: This study suggests the role of PC, independently of inflammation, in disease perception and achievement of remission or low disease activity in chronic arthritides.


Assuntos
Artrite Psoriásica , Espondilite Anquilosante , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Artrite Psoriásica/complicações , Artrite Psoriásica/diagnóstico , Estudos Transversais , Espondilite Anquilosante/psicologia , Dor , Medidas de Resultados Relatados pelo Paciente , Índice de Gravidade de Doença
3.
Rheumatol Int ; 42(4): 659-668, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34453579

RESUMO

This article aims to evaluate the possible effect of obesity on quality of life, psychological status, and other clinical variables in Psoriatic arthritis (PsA). PsA patients have been recruited by the Turkish League Against Rheumatism-Network from various centers in Turkey in this cross-sectional study. Patients with a body mass index (BMI) ≥ of 30 kg/m2 were considered obese. Differences among patients with regard to obesity status were assessed with health-related quality of life measures (PsA Quality of Life Questionnaire [PsAQoL]), psychological status (Hospital Anxiety and Depression Scale [HADS]), and disease activity parameters (the Disease Activity index for PSoriatic Arthritis [DAPSA], Disease Activity Score 28-C-reactive protein [DAS28-CRP], Bath Ankylosing Spondylitis Disease Activity Index [BASDAI], Psoriasis Area and Severity Index [PASI]), physical functions (Ankylosing Spondylitis Functional Index [BASFI], Health Assessment Questionnaire [HAQ], and Health Assessment Questionnaire for the spondyloarthropathies [HAQ-S]). Pain was assessed using visual analog scale of pain (VAS-P), and fatigue was evaluated using visual analog scale of fatigue (VAS-F) and Functional Assessment of Chronic Illness Therapy (FACIT). A total of 1033 patients with PsA, 650 (62.9%) non-obese and 383 (37.1%) obese were included in the study. The PsAQoL, HADS-Anxiety, HADS-Depression, DAPSA, DAS28-CRP, BASDAI, BASFI, HAQ and HAQ-S scores of the obese group were higher than the non-obese group (p < 0.05). VAS-P and PASI scores were similar between group of patients with and without obesity. Obese patients had higher median scores of VAS-F and FACIT than non-obese patients (p < 0.05). Linear regression analysis showed that BMI affects the quality of life, depression, and disease activity. Consequently, obesity has significant associations with higher disease activity, lower QoL, risk of anxiety, depression, and fatigue. Therefore, obesity should also be taken into account in the management of PsA patients.


Assuntos
Artrite Psoriásica , Psoríase , Espondilite Anquilosante , Artrite Psoriásica/complicações , Artrite Psoriásica/diagnóstico , Proteína C-Reativa/análise , Estudos Transversais , Fadiga , Humanos , Obesidade/complicações , Dor , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Espondilite Anquilosante/psicologia , Inquéritos e Questionários
4.
Rheumatology (Oxford) ; 60(2): 888-895, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33063096

RESUMO

OBJECTIVE: To evaluate the impact of a nurse-led program of self-management and self-assessment of disease activity in axial spondyloarthritis. METHODS: Prospective, randomized, controlled, open, 12-month trial (NCT02374749). Participants were consecutive axial spondyloarthritis patients (according to the rheumatologist) and nurses having participated in a 1-day training meeting. The program included self-management: educational video and specific video of graduated, home-based exercises for patients; and self-assessment: video presenting the rationale of tight monitoring of disease activity with composite scores (Ankylosing Spondylitis Disease activity Score, ASDAS/Bath Ankyslosing Spondylitis Disease Activity Index, BASDAI). The nurse trained patients to collect, calculate and report (monthly) ASDAS/BASDAI. Treatment allocation was by random allocation to this program or a comorbidities assessment (not presented here and considered here as the control group). RESULTS: A total of 502 patients (250 and 252 in the active and control groups, respectively) were enrolled (age: 46.7 (12.2) years, male gender: 62.7%, disease duration: 13.7 (11.0) years). After the one-year follow-up period, the adherence to the self-assessment program was considered good (i.e. 79% reported scores >6 times). Despite a lack of statistical significance in the primary outcome (e.g. coping) there was a statistically significant difference in favor of this program for the following variables: change in BASDAI, number and duration of the home exercises in the active group, and physical activity (international physical activity score, IPAQ). CONCLUSION: This study suggests a short-term benefit of a nurse-led program on self-management and self-assessment for disease activity in a young axial spondyloarthritis population in terms of disease activity, exercises and physical activity.


Assuntos
Autoavaliação Diagnóstica , Terapia por Exercício/métodos , Qualidade de Vida , Autogestão , Espondilite Anquilosante , Feminino , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa em Avaliação de Enfermagem , Avaliação de Processos e Resultados em Cuidados de Saúde , Gravidade do Paciente , Padrões de Prática em Enfermagem , Autogestão/métodos , Autogestão/psicologia , Espondilite Anquilosante/fisiopatologia , Espondilite Anquilosante/psicologia , Espondilite Anquilosante/terapia
5.
Rheumatology (Oxford) ; 60(12): 5743-5752, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-33725088

RESUMO

OBJECTIVES: The choice of second-line biologics for AS patients previously treated with a TNF inhibitor (TNFi) remains unclear. Here, we compared drug retention and clinical efficacy between AS patients who switched biologics to secukinumab and those who switched to a different TNFi. METHODS: AS patients enrolled in the Korean College of Rheumatology BIOlogics registry were included, and patients with non-radiographic axial spondyloarthritis were excluded. Patients with previous TNFi exposure were divided into the secukinumab group and the TNFi switching group. Drug retention and clinical efficacy [BASDAI50, Assessment of Spondylo-Arthritis International Society (ASAS)20, ASAS40, AS disease activity score (ASDAS) <2.1, ASDAS clinically important improvement and ASDAS major improvement] were assessed at the 1 year follow-up. Propensity score (PS)-matched and covariate-adjusted logistic regression analyses were performed. RESULTS: Two hundred and forty-six had available 1 year follow-up data. Secukinumab as third- or later-line biologic was more frequent than alternative TNFi (54% vs 14%). PS-matched and multiple covariate-adjusted analyses showed that the odds ratio (OR) for drug discontinuation was comparable between the secukinumab and TNFi switching groups [OR 1.136 (95% CI 0.843, 1.531) and 1.000 (95% CI 0.433-2.308), respectively]. The proportion of patients who achieved BASDAI50 was also comparable between the two groups [OR 0.833 (95% CI 0.481, 1.441) in PS-matched analysis]. Other clinical efficacy parameters were also comparable. In the subgroup analysis of AS patients with previous TNFi discontinuation due to ineffectiveness, all clinical efficacy parameters were comparable between the two groups. CONCLUSION: In AS patients with previous exposure to a TNFi, switching biologics to secukinumab and switching to an alternative TNFi resulted in comparable drug retention and clinical efficacy.


Assuntos
Anticorpos Monoclonais Humanizados/uso terapêutico , Sistema de Registros , Retenção Psicológica/efeitos dos fármacos , Espondilite Anquilosante/tratamento farmacológico , Inibidores do Fator de Necrose Tumoral/uso terapêutico , Adulto , Feminino , Seguimentos , Humanos , Interleucina-17 , Masculino , Índice de Gravidade de Doença , Espondilite Anquilosante/diagnóstico , Espondilite Anquilosante/psicologia , Fatores de Tempo , Resultado do Tratamento
6.
Rheumatol Int ; 41(10): 1763-1772, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34297180

RESUMO

The aim of this study was to investigate the effects of lockdown on the mental health (anxiety and depression) and quality of life (QOL) of people with rheumatoid arthritis (RA) and ankylosing spondylitis (AS) in the context of the COVID-19 pandemic and public health measures instituted at a national level by the New Zealand Government. The present cohort was 104 individuals with RA (73.1%) and AS (26.9%) who had previously completed surveys for the Patient Opinion Real-Time Anonymous Liaison (PORTAL) project in 2018. Participants completed an online survey between July and September 2020 assessing their experiences over the first national COVID-19 lockdown in New Zealand (March-May, 2020). Fear of SARS-CoV-2 infection, baseline anxiety, and being younger in age were all predictors of participants' current anxiety levels. Current QOL scores were significantly lower than prior to lockdown and were predicted by baseline QOL and current depression. No variables predicted current depression other than baseline levels. The COVID-19 pandemic appears to have had an impact on QOL and anxiety levels, but not depression for people with RA and AS in New Zealand. These novel findings imply that appropriate screening of mental health issues should be included in planning within the ongoing COVID-19 pandemic and for future pandemics to optimise the wellbeing of people with RA and AS.


Assuntos
Ansiedade/psicologia , Artrite Reumatoide/psicologia , Depressão/psicologia , Qualidade de Vida , Espondilite Anquilosante/psicologia , Adulto , Idoso , Ansiedade/epidemiologia , Artrite Reumatoide/epidemiologia , COVID-19/epidemiologia , COVID-19/psicologia , Controle de Doenças Transmissíveis/legislação & jurisprudência , Depressão/epidemiologia , Medo/psicologia , Feminino , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Nova Zelândia , Pandemias , SARS-CoV-2 , Espondilite Anquilosante/epidemiologia , Inquéritos e Questionários
7.
Psychol Health Med ; 26(8): 1023-1030, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-32779482

RESUMO

The poor sleep of young people with ankylosing spondylitis (AS) has not attracted enough attention of clinicians and experts. This study aimed to evaluate the sleep quality and associations with health locus of control (HLC) and coping styles in young people with AS. A total of 133 patients completed the measures of demographics, disease characteristics, HLC, coping styles, and Pittsburgh sleep quality index (PSQI). The patients were worse than general population in PSQI global score and multiple domains. Among patients, the poor sleep was positively related to chance HLC (CHLC) and resignation. Resignation completely mediated the association between CHLC and sleep. There were severe sleep problems in young people with AS, and strategies to change the resignation coping style should be implemented.


Assuntos
Adaptação Psicológica , Controle Interno-Externo , Sono , Espondilite Anquilosante , Adolescente , Humanos , Espondilite Anquilosante/psicologia , Espondilite Anquilosante/terapia
8.
Turk J Med Sci ; 51(4): 1631-1639, 2021 08 30.
Artigo em Inglês | MEDLINE | ID: mdl-33773523

RESUMO

Background/aim: The COVID-19 outbreak is known to increase stress levels of most patients with chronic diseases. Patients with ankylosing spondylitis (AS) and rheumatoid arthritis (RA) are highly susceptible to environmental stress. In the current study, we aimed to determine how the COVID-19 pandemic psychologically affected patients with chronic progressive diseases such as AS and RA and the effects of these psychological factors on disease activity. Materials and methods: Age and sex-matched patients with AS (n = 80), RA (n = 80), and healthy controls (n = 80) were included in the study. All participants were evaluated with the "Perceived COVID-19 Threat Form (PCTF)", "Suicide-Ideation Scale (SIS)", "Hospital Anxiety and Depression Scale (HADS)", "The Ability to Cope with Trauma (PACT)", and "Psychological General Well-Being Index (PGWB)" scales. BASDAI was used in patients with AS, and DAS28 was used in patients with RA to assess disease severity. Results: Compared to healthy individuals, patients with RA and AS had lower PGWB scores and higher HADS depression and anxiety subscale scores. Almost all psychometric assessment test scores were worse in AS patients with high-disease activity compared to those in low-disease activity. PACT scores were higher in patients with moderate RA compared to patients with mild RA (p = 0.006). While a positive correlation was identified between BASDAI and most of the psychometric assessment test scores (r = 0 .36 for PCTF, r = 0.53 for depressive scores, r = 0.54 for anxiety scores, r = 0.57 for suicidal ideation), DAS28 scores were found to be associated only with PACT total and PACT perceived forward-focused subscale scores (r = ­.26 and r = .33, respectively). Conclusion: Psychologically, AS and RA patients were found to be worse off compared to healthy controls. The perceived COVID threat and psychological status were associated with disease activity in AS, but not RA patients. Patients with chronic illnesses may be more vulnerable to the psychological effects of the pandemic, which can worsen disease activity.


Assuntos
Artrite Reumatoide/complicações , Artrite Reumatoide/psicologia , COVID-19/psicologia , Transtornos Mentais/complicações , Transtornos Mentais/psicologia , Espondilite Anquilosante/complicações , Espondilite Anquilosante/psicologia , Adulto , Transtornos de Ansiedade/complicações , Transtornos de Ansiedade/psicologia , Transtorno Depressivo/complicações , Transtorno Depressivo/psicologia , Feminino , Humanos , Masculino , Pandemias , Qualidade de Vida/psicologia , SARS-CoV-2 , Índice de Gravidade de Doença , Estresse Psicológico/complicações , Estresse Psicológico/psicologia
9.
Rheumatology (Oxford) ; 59(9): 2481-2490, 2020 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-31990352

RESUMO

OBJECTIVES: While many axSpA patients, eligible to receive anti-TNFα therapy, derive benefit when prescribed them, some patients do not. The current study aims to identify modifiable targets to improve outcome as well as non-modifiable targets that identify groups less likely to derive benefit. METHODS: The BSRBR-AS is a prospective cohort study of axSpA patients who, at recruitment, were naïve to biologic therapy. Those in the 'biologic' sub-cohort commenced their first anti-TNFα therapy at recruitment or during follow-up. Prior to commencement, information was collected on socio-economic, clinical and patient-reported factors. Outcome was assessed according to ASAS20, ASAS40, ASDAS reduction and achieving a moderate/inactive ASDAS disease state. RESULTS: 335 participants commenced their first anti-TNFα therapy and were followed up at a median of 14 (inter-quartile range 12-17) weeks. Response varied between 33% and 52% according to criteria used. Adverse socio-economic factors, fewer years in education predicted lower likelihood of response across outcome measures as did not working full-time. Co-morbidities and poor mental health were clinical and patient-reported factors, respectively, associated with lack of response. The models, particularly those using ASDAS, were good at predicting those who did not respond (negative predictive value (NPV) 77%). CONCLUSION: Some factors predicting non-response (such as mental health) are modifiable but many (such as social/economic factors) are not modifiable in clinic. They do, however, identify patients who are unlikely to benefit from biologic therapy alone. Priority should focus on how these patients receive the benefits that many derive from such therapies.


Assuntos
Terapia Biológica , Espondilite Anquilosante , Inibidores do Fator de Necrose Tumoral , Adulto , Terapia Biológica/economia , Terapia Biológica/métodos , Terapia Biológica/psicologia , Terapia Biológica/estatística & dados numéricos , Estudos de Coortes , Comorbidade , Modificador do Efeito Epidemiológico , Feminino , Humanos , Masculino , Saúde Mental/estatística & dados numéricos , Gravidade do Paciente , Medidas de Resultados Relatados pelo Paciente , Seleção de Pacientes , Medição de Risco/métodos , Fatores Socioeconômicos , Espondilite Anquilosante/epidemiologia , Espondilite Anquilosante/psicologia , Espondilite Anquilosante/terapia , Resultado do Tratamento , Inibidores do Fator de Necrose Tumoral/administração & dosagem , Inibidores do Fator de Necrose Tumoral/efeitos adversos , Reino Unido/epidemiologia
10.
Clin Exp Rheumatol ; 38(2): 282-288, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31365330

RESUMO

OBJECTIVES: To assess the educational needs of people with ankylosing spondylitis (AS) and psoriatic arthritis (PsA), test differences across patient subgroups and identify factors independently associated with their educational needs. METHODS: This was a cross-sectional analytic study. Patients with AS and PsA completed the Portuguese version of the Educational Needs Assessment Tool (PortENAT). Data were Rasch-transformed before descriptive and inferential analyses were undertaken. Univariable and multivariable analyses were used to determine differences between patient subgroups and factors independently associated with their educational needs. RESULTS: The study included 121 patients with AS and 132 with PsA. The level of educational needs varied by diagnostic group, but higher needs for both subgroups were reported regarding the "Disease process", "Feelings" and "Managing pain" domains. Overall, patients with AS had a higher level of educational needs than those with PsA. In both diagnostic groups, female gender was independently associated with higher educational needs. In the PsA group, a shorter disease duration was independently associated with higher educational needs in the following domains: "Managing pain", "Movement" and "Feelings". CONCLUSIONS: Educational needs vary by diagnostic group, gender and disease duration. These differences merit consideration in the design of patient education interventions.


Assuntos
Artrite Psoriásica , Educação de Pacientes como Assunto , Espondilite Anquilosante , Artrite Psoriásica/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Avaliação das Necessidades , Manejo da Dor , Espondilite Anquilosante/psicologia
11.
Health Qual Life Outcomes ; 18(1): 4, 2020 Jan 03.
Artigo em Inglês | MEDLINE | ID: mdl-31900174

RESUMO

BACKGROUND: We assessed the external validity of composite indices Ankylosing Spondylitis Disease Activity Score (ASDAS), Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), and Assessment in SpondyloArthritis international Society (ASAS) 40 response (ASAS40) by evaluating the correlations between the changes in some patient reported outcomes (PROs) for patients with non-radiographic axial spondyloarthritis (nr-axSpA) and the changes in the scores of the composite indices. METHODS: This was a post-hoc analysis of data from the EMBARK study in patients with nr-axSpA treated with etanercept. PROs were grouped according to ASDAS status (inactive [< 1.3], low [≥ 1.3 to < 2.1], high [≥ 2.1 to ≤3.5], and very high [> 3.5]), patient achievement of > 50% improvement in BASDAI (BASDAI50 responders), and > 40% improvement in ASAS (ASAS40 responders) at 104 weeks. Analyses were conducted on observed cases available at Week 104. Changes in PROs from Baseline to Week 104 were assessed using analysis of covariance with adjustment for baseline with linear contrast. RESULTS: Higher ASDAS disease activity at 104 weeks was associated with lower long-term improvement from baseline in PROs (e.g., total back pain [visual analog scale, cm (95% confidence interval): - 4.58 (- 4.95, - 4.21), - 3.86 (- 4.28, - 3.43), - 2.15 (- 2.68, - 1.61), and 1.30 (- 0.51, 3.12) for inactive, low, high, and very high ASDAS disease activity, respectively; Multidimensional Fatigue Inventory (MFI) general fatigue: - 4.77 (- 5.70, - 3.84), - 2.96 (- 4.04, - 1.87), - 1.00 (- 2.32, 0.31), and 2.14 (- 2.10, 6.38); all p < 0.001)]. BASDAI50 non-responders had less improvement in PROs from Baseline to Week 104 vs. responders (e.g., total back pain: - 1.61 (- 2.05, - 1.18) vs. -4.43 (- 4.69, - 4.18); MFI general fatigue: - 0.01 (- 1.12, 1.09) vs. -4.30 (- 4.98, - 3.62); all p < 0.001). ASAS40 non-responders also had less improvement in PROs from Baseline to Week 104 vs. responders (e.g., total back pain: - 1.91 (- 2.30, - 1.52) vs. -4.75 (- 5.05, - 4.46); MFI general fatigue: - 0.63 (- 1.56, 0.30) vs. -4.64 (- 5.37, - 3.91); all p < 0.001). CONCLUSION: Composite indices are valid for monitoring treatment response and adequately reflect treatment-related changes experienced by patients with nr-axSpA. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01258738. Registered 9 December 2010.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Espondilite Anquilosante/psicologia , Adulto , Antirreumáticos/uso terapêutico , Progressão da Doença , Etanercepte/uso terapêutico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Espondilite Anquilosante/tratamento farmacológico , Resultado do Tratamento
12.
Qual Life Res ; 29(11): 3155-3166, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32607793

RESUMO

PURPOSE: The ankylosing spondylitis quality of life (ASQoL) instrument is widely used to assess health-related quality of life in patients with ankylosing spondylitis (AS). We assessed the relevance of the ASQoL items in patients with non-radiographic axial spondyloarthritis (nr-axSpA), a distinct subgroup within the axSpA disease spectrum. METHODS: This observational, cross-sectional, qualitative interview study recruited patients from clinic settings. Interviews from patients with axSpA who participated in a prior qualitative study were also used. Patients initially underwent a concept elicitation interview using open-ended questions to evaluate relevance of the concepts measured by the ASQoL. They then completed the ASQoL and underwent a cognitive interview to assess their understanding of the items, instructions and response options. Transcripts from patients who participated in the previous qualitative study (who did not complete the ASQoL or undergo cognitive interview) were evaluated to identify expressions of the concepts in the ASQoL. RESULTS: A total of 18 patients with nr-axSpA participated. The concept elicitation interview findings supported the relevance of the ASQoL items. Cognitive interviews determined that the ASQoL was easily understood; the 13 new patients chose a response for each item that matched their experience with nr-axSpA. Transcripts for the five previously interviewed patients confirmed the concepts presented in the ASQoL items were relevant and important to their experience of living with nr-axSpA. CONCLUSIONS: Our results represent an important first step in confirming the relevance of the concepts in the ASQoL to patients with nr-axSpA, supporting quantitative assessment of ASQoL validity in this population.


Assuntos
Qualidade de Vida/psicologia , Espondilite Anquilosante/psicologia , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
13.
Qual Life Res ; 29(1): 99-107, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31559519

RESUMO

BACKGROUND: Axial spondyloarthritis (ax-SpA) causes pain, fatigue, stiffness, loss of physical function and impaired health-related quality of life (HRQOL). AIMS: The study aimed to explore the changes in HRQOL over 5 years in patients with ax-SpA and to identify baseline predictors associated with changes in HRQOL assessed using three HRQOL measures. METHODS: Demographic, disease, medication and HRQOL data were collected at baseline and at 5-year follow-up. HRQOL was assessed using SF-6D, 15D and SF-36. Analyses involved McNemar, independent paired t tests and multiple regression. RESULTS: In the 240 (women 31%, men 69%) ax-SpA patients assessed (mean age 46 years), measures reflecting disease activity decreased and co-morbidities increased, and more patients were treated with biologic drugs during follow-up. No deterioration in HRQOL was observed between baseline and 5-year follow-up; indeed, there was a significant increase in SF-6D and SF-36 PCS scores. Improvement in HRQOL measured by SF-6D was associated with younger age, higher education, low Bath Ankylosing Spondylitis (BAS) Activity Index (BASDAI), high BAS Patient Global Score and high C-reactive protein; improvement in SF-36 PCS was associated with younger age, higher education, low BASDAI and no use of biological treatment at baseline. CONCLUSION: Our ax-SpA outpatient clinic patients, with more patients treated with biologic drugs during the 5-year follow-up, did not deteriorate in HRQOL. In fact, the physical dimension in HRQOL improved over the years, as did measures reflecting disease activity. Our study adds evidence to the importance of suppressing inflammation to maintain and improve HRQOL in ax-SpA patients.


Assuntos
Qualidade de Vida/psicologia , Espondilite Anquilosante/terapia , Instituições de Assistência Ambulatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor , Espondilite Anquilosante/psicologia
14.
Rheumatol Int ; 40(9): 1493-1499, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32430806

RESUMO

Social media usage by back pain patients is a new and developing area. Analysing patterns of this online activity offers a new way to understand our patients' concerns and behaviour around disease. Large volume data can be evaluated on a scale not feasible through alternative methods. A cross sectional review of specific terms relating to 'back pain' (BP) and 'ankylosing spondylitis' (AS) were tracked internationally on popular websites, blogs and boards over two 3 month periods, in 2016 and 2019. Relevant co-terms were also tracked in these discussions, such as 'exercise', 'medication' and 'doctor'. The size of the current online BP conversation is significant; there were over 100,000 mentions/month across each study period, particularly 'low-' BP. Discussions about AS increased threefold between 2016 and 2019. More discussions took place online at the start of the week, and in the afternoons. Pregnancy, baby and mens' health resources were the most popular sites for BP chats. People posting about AS were mainly female (80%) and predominantly had an established diagnosis, with health forums hosting more of these discussions than for BP. Exercise was more commonly mentioned in the context of BP, whereas medications were more common in the AS conversations. Analysing online discussions about BP and AS helps to identify themes amongst patients. Some are seeking a diagnosis, support, or treatment information. Understanding the massive scale of online conversations could help clinicians adopt targeted approaches to increase patient identification, meet patient concerns better, and optimise engagement.


Assuntos
Dor nas Costas/psicologia , Comportamento de Busca de Informação , Mídias Sociais/estatística & dados numéricos , Espondilite Anquilosante/psicologia , Dor nas Costas/etiologia , Estudos Transversais , Feminino , Humanos , Internet , Masculino , Espondilite Anquilosante/complicações
15.
Rheumatol Int ; 40(12): 2085-2095, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32862307

RESUMO

To develop and validate a self-administered questionnaire to identify in people with Inflammatory arthritis (IA) Facilitators And Barriers to Physical activity (PA): the IFAB questionnaire. The development of the questionnaire included a systematic review of barriers and facilitators to PA to identify key themes, face validity assessment by 11 experts, and cognitive debriefing with 14 patients. The psychometric properties of the questionnaire were assessed by convergent validity (Spearman correlation) against the modified Health Assessment Questionnaire (mHAQ), the Fear-Avoidance Beliefs Questionnaire subscale for PA and the Tampa Scale for Kinesiophobia, internal consistency (Cronbach α) in 63 IA patients with rheumatoid arthritis (RA), axial spondyloarthritis (axSpA) or psoriatic arthritis (PsA). Reliability and feasibility were assessed in 32 IA patients. The questionnaire comprises 10 items: 4 assessing either barriers or facilitators, 3 assessing barriers, and 3 assessing facilitators. The items are related to psychological status (N = 6), social support (N = 2), disease (N = 1), environmental factors (N = 1). The validation study included 63 patients: 26 RA, 24 axSpA, 13 PsA; with mean age 52.8 (standard deviation 16.5) years, mean disease duration 12.5 (12.3) years, and 53% of women. The questionnaire was correlated (rho = 0.24) with mHAQ. Internal consistency (Cronbach α 0.69) and reliability (interclass coefficient 0.79 [95% confidence interval 0.59; 0.88]) were satisfactory, as was feasibility (missing data 12%, mean completion time < 5 min). The questionnaire allows the assessment of barriers and facilitators to PA in patients with IA. This questionnaire may guide targeted interventions to increase levels of PA in these patients.


Assuntos
Artrite Psoriásica/psicologia , Artrite Reumatoide/psicologia , Exercício Físico , Espondilite Anquilosante/psicologia , Inquéritos e Questionários/normas , Adulto , Idoso , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Estudos Prospectivos , Reprodutibilidade dos Testes
16.
Rheumatol Int ; 40(7): 1053-1061, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32166439

RESUMO

OBJECTIVES: Although cross-sectional studies have shown that ankylosing spondylitis-specific factors correlate with depressive symptom severity, the association of these factors over time is unresolved. We examined the demographic and clinical factors associated with longitudinal depressive symptom severity in AS patients. METHODS: We analyzed sociodemographic, clinical, behavioral and medication data from 991 patients from the Prospective Study of Outcomes in Ankylosing spondylitis cohort, and measured depression severity with the Center for Epidemiological Studies Depression (CES-D) Scale administered at approximately 6-month visit intervals. Multivariable longitudinal negative binomial regression models were conducted using generalized estimating equation modeling to assess the demographic, clinical, and medication-related factors associated with depression severity by CES-D scores over time. RESULTS: The median baseline CES-D score (possible range 0-60) was 10.0 (interquartile range = 5, 17). In longitudinal multivariable analyses, higher CES-D scores were associated with longitudinal smoking, greater functional impairment, greater disease activity, self-reported depression, and poor global health scores. Marital status (e.g., being married) was associated with lower CES-D. Adjusted mean CES-D scores in our model decreased over time, with a significant interaction between time and gender observed. CONCLUSION: This study identified longitudinal clinical factors such as greater disease activity, greater functional impairment, and poor global health to be associated with longitudinal depression severity. These factors are potentially modifiable and may help manage depressive symptoms in AS.


Assuntos
Depressão/psicologia , Espondilite Anquilosante/psicologia , Atividades Cotidianas , Adulto , Analgésicos Opioides/uso terapêutico , Anti-Inflamatórios não Esteroides/uso terapêutico , Antidepressivos/uso terapêutico , Estudos de Coortes , Depressão/tratamento farmacológico , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Fármacos Neuromusculares/uso terapêutico , Índice de Gravidade de Doença , Espondilite Anquilosante/tratamento farmacológico , Espondilite Anquilosante/fisiopatologia , Inibidores do Fator de Necrose Tumoral/uso terapêutico
17.
Mod Rheumatol ; 30(1): 149-154, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30561239

RESUMO

Objectives: The aim of this study is to assess the current situations of standard exercise treatment and predictors of non-standard exercise in Chinese patients with ankylosing spondylitis (AS). An analysis of the effect of standard exercise on health-related quality of life (HR-QoL) was also conducted.Methods: In the cross-sectional study, a total of 259 AS patients were constantly invited to participate in this study and complete the questionnaire under the researchers' supervision in a clinical setting including sociodemographic variables, clinical variables, psychological variables, and HR-QoL. Data were analyzed by Mann-Whitney U test, Chi-square test as well as multivariable analysis of Binary Stepwise Logistic Regression.Results: The data showed that just 20.5% of them could complete the standard exercise. Exercise adherence was associated with employment, educational level, marital status, place of residence, treatment of Tumor Necrosis Factor-α inhibitor, knowledge about exercise, disease duration, clinical variables, and anxiety. The HR-QoL in the group of standard exercise was better than that in the non-standard exercise group. Logistic Regression Analysis showed that lower educational level, less knowledge about benefits of exercise treatment and higher score of Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) were the independent risk factors of exercise treatment non-adherence.Conclusion: AS patients educated less than 9 years or with higher BASDAI score were more likely not to adhere to standard exercise treatment. Non-adherence to exercise treatment among AS patients is exceedingly common, particularly in patients without knowledge about benefits of exercise treatment. Standard exercise treatment can also improve HR-QoL of AS patients.


Assuntos
Terapia por Exercício/métodos , Exercício Físico/fisiologia , Cooperação do Paciente , Qualidade de Vida , Espondilite Anquilosante/reabilitação , Adulto , China , Estudos Transversais , Feminino , Humanos , Masculino , Fatores de Risco , Espondilite Anquilosante/fisiopatologia , Espondilite Anquilosante/psicologia , Inquéritos e Questionários
18.
Psychiatr Danub ; 32(3-4): 403-410, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33370739

RESUMO

BACKGROUND: This study aims to investigate the influence of traditional Chinese music on the physical and psychological functions of hospitalized patients with ankylosing spondylitis (AS). SUBJECTS AND METHODS: A total of 120 patients with AS admitted to the People's Hospital of Anhui Province between March 2018 and March 2019 were randomly divided into experiment and control groups. The experiment group was a traditional music group composed of 56 patients, namely, 50 males and 6 females. The control group was further divided into a painting group and a routine treatment group with a total of 64 patients, namely, 48 males and 16 females. The physical and psychological functions of each group of patients before and after the intervention were assessed in terms of physical and psychological function dimensions obtained before and after the intervention. RESULTS: After 8 weeks of treatment, the score in terms of physical functions is the highest in the music group (P<0.05), and the difference in eating functions is statistically significant (P<0.001). This finding suggests that the music group is better than the painting group and the routine treatment group (P<0.05). In terms of the score in sexual functions, the following trend is observed: music group>painting group>routine treatment group. The difference in their psychological functions is statistically significant (P<0.001). In terms of the score in psychological functions, the following trend is obtained: music group>painting group>routine treatment group. The three groups significantly differ in their scores in mental tension, negative emotion, positive emotion, cognitive functions, and self-esteem. All of these dimensions show the following pattern: music group>painting group>routine treatment group. Cross-group comparisons between the three groups are also statistically significant (P<0.05). CONCLUSIONS: Traditional Chinese music therapy and painting therapy can promote the recovery of patients' physical and psychological functions. Traditional Chinese music intervention therapy is better than painting therapy and routine hospitalization in promoting the recovery of physical and psychological functions of hospitalized patients.


Assuntos
Saúde Mental , Musicoterapia , Música/psicologia , Espondilite Anquilosante/psicologia , Espondilite Anquilosante/terapia , Adolescente , Adulto , Cognição , Emoções , Feminino , Humanos , Masculino , Autoimagem , Espondilite Anquilosante/fisiopatologia , Adulto Jovem
19.
Clin Exp Rheumatol ; 37(2): 199-207, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30148434

RESUMO

OBJECTIVES: The QUO VADIS study evaluated disease activity and health-related quality-of-life (HRQoL) in ankylosing spondylitis (AS) patients treated with golimumab (GLM) or infliximab (IFX, originator) during routine clinical care. METHODS: This prospective observational study followed biologics-naïve AS patients newly treated with GLM or IFX for 6 months. Disease activity (BASDAI, BASFI, ASAS, and ASDAS) and HRQoL improvement (≥5 points of SF-36 Physical Component Summary [PCS] score; PCS response) were measured. A Classification and Regression Trees (CART) analysis evaluated association of baseline parameters with PCS response at 6 months. RESULTS: 963 patients (mean age 43 years, 61% male, 64% HLA-B27 positive) received ≥1 dose of medication (78% GLM; 22% IFX). Disease activity was reduced; mean (SD) changes from baseline at month 6 of -2.7 (BASDAI) and -2.1 (BASFI) and 40% and 35% achievement of BASDAI50 and ASAS40 response, respectively, were observed. PCS response was achieved at month 6 in 52% of patients. Using CART analysis, baseline parameters (cut-off values) associated with HRQoL improvement were ASDAS (≥3.48), C-reactive protein (≥8.55 mg/L), age (≤35.5 years), and BASFI (≥1.15). This algorithm correctly identified 57.5% (sensitivity) of PCS responders (≥5 points) and 61.0% (specificity) of PCS non-responders (<5points) with ROC-AUC=0.61. Serious adverse events (AEs) occurred in 1.8% of patients; the most common AEs were infections (7.7%). CONCLUSIONS: We demonstrated clinical and HRQoL improvements over 6 months in a large, real-world population of AS patients newly treated with GLM or IFX; higher ASDAS, elevated CRP, and younger age were associated with improvements in HRQoL and an overall more robust response.


Assuntos
Anticorpos Monoclonais/uso terapêutico , Infliximab/uso terapêutico , Qualidade de Vida , Espondilite Anquilosante , Adulto , Feminino , Humanos , Masculino , Estudos Prospectivos , Índice de Gravidade de Doença , Espondilite Anquilosante/tratamento farmacológico , Espondilite Anquilosante/psicologia
20.
Clin Exp Rheumatol ; 37(5): 748-755, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30943145

RESUMO

OBJECTIVES: To describe the baseline characteristics of the patients enrolled in the QUality of life in patients with Axial SpondyloARthritis (QUASAR) study in terms of quality of life (QoL), disease activity, therapy adherence, and work ability in a real-world setting. METHODS: QUASAR is an Italian multicentre, prospective 12-month observational study, including consecutive adult patients classified as axial spondyloarthritis (axSpA) according to the Assessment of SpondyloArthritis international Society criteria for axSpA. RESULTS: Of 512 patients enrolled in 23 rheumatology centres, 80.7% had ankylosing spondylitis (AS) and 19.3% had non-radiographic axSpA (nr-axSpA). Mean ages were 34.1±13.3 years at axSpA symptoms onset and 39.5±13.0 years at diagnosis. Of the patients, 51.4% presented with ≥1 extra articular manifestation (EAM); the most common were psoriasis (17.8%) and uveitis (16.4%). Patients with nr-axSpA and AS had similar EAM rates, disease activity, and QoL. Biologic disease-modifying anti-rheumatic drugs (bDMARDs; 83.2%) were the most commonly received medication, followed by conventional synthetic DMARDs (22.9%) and non-steroidal anti-inflammatory drugs (NSAIDs; 16.6%). At baseline, higher treatment satisfaction was reported with bDMARDs which, together with NSAIDs, were associated with the best overall scores for disease activity, function, and QoL in the overall population and AS subgroup. CONCLUSIONS: QUASAR is the first Italian prospective study that comprehensively evaluated a large axSpA patient sample in a real-world setting. This interim analysis at baseline confirmed that i) patients with AS and nr-axSpA have similar QoL and disease burden, ii) nearly all axSpA patients receive treatment, and iii) bDMARDs and NSAIDs, overall, yield better disease activity and QoL.


Assuntos
Antirreumáticos , Qualidade de Vida , Espondilartrite , Espondilite Anquilosante , Adulto , Anti-Inflamatórios não Esteroides/uso terapêutico , Antirreumáticos/uso terapêutico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Espondilartrite/fisiopatologia , Espondilartrite/psicologia , Espondilite Anquilosante/fisiopatologia , Espondilite Anquilosante/psicologia , Adulto Jovem
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