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1.
Artigo em Inglês | MEDLINE | ID: mdl-39321311

RESUMO

OBJECTIVES: To assess diagnostic delay and its associated factors globally, in a large sample of patients included in the International Map of Axial Spondyloarthritis (IMAS). METHODS: IMAS is a cross-sectional online survey (2017-2022) of 5,557 axSpA patients from 27 countries. Diagnostic delay was calculated as the difference between age at diagnosis and age at first symptom onset reported by patients. Associations between diagnostic delay and regions, sociodemographic characteristics, as well as disease-related factors were explored through univariable and multivariable linear regression analysis. RESULTS: Data from 5,327 patients who reported data on diagnostic delay in IMAS survey were analysed: 3,294 were from Europe, 752 from North America, 590 from Asia, 545 from Latin America, and 146 from Africa. Overall, patients reported a mean diagnostic delay of 7.4 years (median: 4.0) since symptom onset, with substantial variation across regions; being the highest delay in South Africa and the lowest in Asia. The variables associated with longer diagnostic delay in the final multivariable regression model were: younger age at symptom onset (b=-0.100), female gender (b = 2.274), being diagnosed by rheumatologist (b = 1.163), greater number of HCPs seen before diagnosis (b = 1.033), and history of uveitis (b = 1.286). CONCLUSION: In this global sample of axSpA patients, the mean diagnostic delay was 7.4 years, and showed significant differences across regions. Younger age at symptom onset, female gender, diagnosis made by a rheumatologist, greater number of HCPs seen before diagnosis, and the history of uveitis were the parameters associated with a longer diagnostic delay in axSpA patients.

2.
Rheumatology (Oxford) ; 63(9): 2328-2335, 2024 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-38128022

RESUMO

OBJECTIVES: To explore differences in axial spondyloarthritis (axSpA) clinical phenotype around the world in a large sample of patients included in the International Map of Axial Spondyloarthritis (IMAS). METHOD: IMAS was a cross-sectional online survey (2017-2022) of 5557 unselected axSpA patients from 27 countries. We analysed across five geographic regions the age at symptom onset, diagnostic delay, gender, HLA-B27, family history, extra-musculoskeletal manifestations, presence of comorbidities, disease activity (BASDAI), level of spinal stiffness and treatments. RESULTS: Of 5557 IMAS participants, 3493 were from Europe, 770 from North America, 600 from Asia, 548 from Latin America and 146 from South Africa. Age at symptom onset ranged between 25 and 30 years and was higher in Latin America. Diagnostic delay was longest in South Africa and lowest in Asia. The lowest HLA-B27 positivity was observed in Latin America and the highest in Asia. Extra-musculoskeletal manifestations were the lowest in Europe. Mean disease activity (BASDAI) was 5.4, with highest values in South Africa and lowest in Asia. Most of the patients had used NSAIDs for their condition and less than half had ever taken conventional synthetic DMARDS; both were more frequent in Latin America and South Africa. Almost half of the patients had ever taken biologic DMARDs, more frequent use being in the Americas. CONCLUSION: There is great heterogeneity of axSpA clinical phenotype presentation around the world. AxSpA manifests differently in different regions, so further understanding of these differences of phenotypes is needed to achieve early diagnosis and initiation of optimal disease treatment in axSpA in the different regions.


Assuntos
Espondiloartrite Axial , Diagnóstico Tardio , Fenótipo , Humanos , Masculino , Feminino , Adulto , Estudos Transversais , América Latina/epidemiologia , Espondiloartrite Axial/diagnóstico , África do Sul/epidemiologia , Europa (Continente) , Ásia/epidemiologia , Antígeno HLA-B27/genética , Pessoa de Meia-Idade , Idade de Início , América do Norte , Índice de Gravidade de Doença , Antirreumáticos/uso terapêutico
3.
Br J Dermatol ; 190(5): 718-728, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38064666

RESUMO

BACKGROUND: Existing dermatology-specific Patient-Reported Outcome Measures (PROMs) do not fully capture the substantial physical, psychological and social impact of dermatological conditions on patients' lives and are not recommended for use according to the COSMIN criteria. Most were developed with insufficient patient involvement and relied on classical psychometric methods. We are developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure for use in research and clinical practice in partnership with patients. OBJECTIVES: To examine the factor structure of PRIDD, determine the definitive selection of items for each subscale, and establish structural validity and internal consistency through classical and modern psychometric methods. METHODS: Two cross-sectional online surveys were conducted. Adults (≥ 18 years) worldwide living with a dermatological condition were recruited through the membership network of the International Alliance of Dermatology Patient Organizations (GlobalSkin). They completed the PRIDD questionnaire and a demographics questionnaire via an online survey. We examined missing data and distribution of scores for each item. The factor structure was assessed using confirmatory and exploratory factor analysis (Survey 1). Internal consistency was examined using Cronbach's α. Rasch measurement theory analyses were conducted, including iterative assessment of rating scale function, fit to the Rasch model, unidimensionality, reliability, local dependence, targeting and differential item functioning (DIF) (Surveys 1 and 2). RESULTS: Participants in Surveys 1 and 2 numbered 483 and 504 people, respectively. All items had ≤ 3% missing scores and all five response options were used. A four-factor model showed the best fit. PRIDD and all four subscales were internally consistent but showed some misfit to the Rasch measurement model. Adjustments were made to rectify disordered thresholds, remove misfitting items, local dependency and DIF, and improve targeting. The resulting 16-item version and subscales fit the Rasch model, showed no local dependency or DIF at the test level, and were well targeted. CONCLUSIONS: This field test study produced the final PRIDD measure, consisting of 16 items across four domains. The data triangulated and refined the conceptual framework of impact and provide evidence of PRIDD's structural validity and internal consistency. The final step in the development and validation of the PRIDD measure is to test the remaining measurement properties.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Exame Físico , Adulto , Humanos , Estudos Transversais , Reprodutibilidade dos Testes , Psicometria/métodos , Inquéritos e Questionários
4.
Br J Dermatol ; 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38924720

RESUMO

BACKGROUND: Patient-reported outcome measures (PROMs) are crucial for assessing the impact of dermatological conditions on patients' lives, but the existing dermatology-specific PROMs are not recommended for use according to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). We developed the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure in partnership with patients. It has strong evidence of content validity, structural validity, internal consistency, acceptability, and feasibility. OBJECTIVES: To test PRIDD's remaining measurement properties and establish the interpretability of scores against the COSMIN criteria using classic and modern psychometric methods. METHODS: A global longitudinal study consisting of two online surveys administered two to four weeks apart. Adults (≥ 18 years) living with a dermatological condition were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) membership network. Participants completed PRIDD, a demographics questionnaire, and other related measures including the Dermatology Life Quality Index (DLQI). We tested PRIDD's criterion validity, construct validity and responsiveness (Spearman's ρ, independent-samples t-tests and ANOVA), test-retest reliability (interclass correlation coefficient [ICC]), measurement error (Smallest Detectable Change or Limits of Agreement [LoA], distribution-based Minimally Important Change [MIC]), floor and ceiling effects (number of minimum and maximum scores and Person-Item Location Distribution Maps), score bandings (κ coefficient of agreement) and anchor-based MIC. RESULTS: 504 patients with 35 dermatological conditions from 38 countries participated. Criterion validity (ρ = 0.79), construct validity (76% hypotheses met), test-retest validity (ICC = 0.93), and measurement error (LoA = 1.3 < MIC = 4.14) were sufficient. Floor and ceiling effects were in the acceptable range (< 15%). Score bandings were determined (κ = 0.47), however, the anchor-based MIC could not be calculated due to an insufficient anchor. CONCLUSIONS: PRIDD is a valid and reliable tool to evaluate the impact of dermatological disease on patients' lives in research and clinical practice. It is the first dermatology-specific PROM to meet the COSMIN criteria. These results support the value of developing and validating PROMs with a patient-centred approach and using classic and modern psychometric methods. Further testing of responsiveness and MIC, cross-cultural translation, linguistic validation, and global data collection are planned.

5.
Exp Physiol ; 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39106091

RESUMO

Fatigue is prevalent amongst people with long COVID, but is poorly understood. The sensory attenuation framework proposes that impairments in sensory processing lead to heightened perception of effort, driving fatigue. This study aims to investigate the role of somatosensory processing impairments in long COVID fatigue and quantify how sensory processing relates to other prominent symptoms of long COVID including autonomic dysfunction, mood and illness beliefs in driving the experience of fatigue. We will recruit 44 individuals with long COVID fatigue and 44 individuals with neither long COVID nor fatigue (controls). Our primary objective is to compare baseline somatosensory processing between individuals with long COVID fatigue and controls. Additionally, we will explore the associations between somatosensory processing, fatigability and the level of fatigue induced by cognitive and physical exertion. Due to the complex nature of fatigue, we will also investigate how long COVID, state fatigue, perceived effort, mood, illness beliefs, autonomic symptoms and autonomic nervous system function interact to predict trait fatigue. This comprehensive investigation aims to elucidate how sensory processing and other prominent symptoms interact to impact the experience of fatigue.

6.
Acta Derm Venereol ; 104: adv40657, 2024 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-39175451

RESUMO

Skin conditions carry a significant physical, psychological, and social burden. People with skin conditions often engage in health-threatening behaviours that can worsen symptoms and increase cardiovascular disease risk. However, access to dedicated psychological and behaviour-change support is limited. The impact, management, and existing psychological support available to adults living with skin conditions was qualitatively explored to inform the development of a psychologically supportive digital intervention. Qualitative research involving a hybrid inductive- deductive approach was performed. Data collection and analysis were theoretically informed by the Common-Sense Model of Self-Regulation. Eight synchronous online group interviews with 43 English-speaking adults (≥ 18 years) with a range of skin conditions were conducted. Data were analysed using Reflexive Thematic Analysis. Three superordinate themes are outlined: (i) visibility underpinning life course impairment, (ii) seeking control amid uncertainty, and (iii) existing support for people with skin conditions. Skin conditions carry a substantial psychological burden, yet dermatology service provision is sub-optimal and patients often resort to seeking support from unreliable sources. Psychological support can have benefits, but barriers exist. This study reinforces the need for high-quality psychological support, and that patients wanted digital means to support effective self- management.


Assuntos
Pesquisa Qualitativa , Dermatopatias , Humanos , Adulto , Feminino , Masculino , Dermatopatias/psicologia , Dermatopatias/terapia , Pessoa de Meia-Idade , Idoso , Efeitos Psicossociais da Doença , Adulto Jovem , Apoio Social , Entrevistas como Assunto
7.
Rheumatology (Oxford) ; 61(2): 705-712, 2022 02 02.
Artigo em Inglês | MEDLINE | ID: mdl-33909885

RESUMO

OBJECTIVE: To identify the parameters associated with self-reported diagnostic delay (DD) in axial spondyloarthritis (axSpA) patients across Europe. METHODS: Data from 2652 patients from 13 countries who participated in the European Map of Axial Spondyloarthritis (EMAS) were collected through an online survey (2017-2018). DD was calculated as the difference between age at diagnosis and age at symptom onset reported by participants. Associations between DD and sociodemographic characteristics, as well as disease-related factors were explored through univariable and multivariable linear regression analysis. RESULTS: Average DD was 7.4 (8.4) years with a variation between countries. The variables associated with longer DD in the final multivariable regression model were: younger age at symptom onset (b = -0.26; 95% CI: -0.28, -0.23), female gender (b = 1.34; 95% CI: 0.73, 1.96) and higher number of health-care professionals (HCPs) seen before diagnosis (b = 1.19; 95% CI: 0.95, 1.43). There was a significant interaction between the female gender and the number of HCPs seen before diagnosis. A substantial variation of the DD across European countries was observed. CONCLUSION: In this sample of axSpA patients, average DD was greater than 7 years. Younger age at symptom onset, female gender, higher number of HCPs seen before diagnosis, and being diagnosed by rheumatologist were the parameters associated with a longer DD in axSpA. These findings indicate a need for continuing efforts dedicated to recognition of patients with a high probability of axSpA on the level of non-rheumatology specialists and facilitating referral to a rheumatologist for timely diagnosis.


Assuntos
Espondiloartrite Axial/diagnóstico , Adulto , Idade de Início , Espondiloartrite Axial/patologia , Estudos Transversais , Diagnóstico Tardio , Europa (Continente) , Feminino , Humanos , Masculino , Fatores de Risco , Fatores Sexuais , Inquéritos e Questionários , Fatores de Tempo
8.
Rheumatology (Oxford) ; 60(1): 125-131, 2021 01 05.
Artigo em Inglês | MEDLINE | ID: mdl-32596718

RESUMO

OBJECTIVE: MTX remains the cornerstone for therapy for RA, yet research shows that non-adherence is significant and correlates with response to therapy. This study aimed to halve self-reported non-adherence to MTX at the Kellgren Centre for Rheumatology. METHODS: An anonymous self-report adherence questionnaire was developed and data collected for 3 months prior to the introduction of interventions, and then regularly for the subsequent 2.5 years. A series of interventions were implemented, including motivational interviewing training, consistent information about MTX and development of a summary bookmark. Information on clinic times was collected for consultations with and without motivational interviewing. Surveys were conducted to ascertain consistency of messages about MTX. A biochemical assay was used to test MTX serum levels in patients at two time points: before and 2.8 years following introduction of the changes. Remission rates at 6 and 12 months post-MTX initiation were retrieved from patient notes and cost savings estimated by comparing actual numbers of new biologic starters compared with expected numbers based on the numbers of consultants employed at the two time points. RESULTS: Between June and August 2016, self-reported non-adherence to MTX was 24.7%. Following introduction of the interventions, self-reported non-adherence rates reduced to an average of 7.4% between April 2018 and August 2019. Clinic times were not significantly increased when motivational interviewing was employed. Consistency of messages by staff across three key areas (benefits of MTX, alcohol guidance and importance of adherence) improved from 64% in September 2016 to 94% in January 2018. Biochemical non-adherence reduced from 56% (September 2016) to 17% (June 2019), whilst remission rates 6 months post-initiation of MTX improved from 13% in 2014/15 to 37% in 2017/18, resulting is estimated cost savings of £30 000 per year. CONCLUSION: Non-adherence to MTX can be improved using simple measures including focussing on the adherence and the benefits of treatment, and providing consistent information across departments.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Adesão à Medicação/estatística & dados numéricos , Metotrexato/uso terapêutico , Entrevista Motivacional , Melhoria de Qualidade , Antirreumáticos/sangue , Artrite Reumatoide/sangue , Produtos Biológicos/uso terapêutico , Consultores/estatística & dados numéricos , Redução de Custos , Humanos , Metotrexato/sangue , Educação de Pacientes como Assunto , Indução de Remissão , Autorrelato/estatística & dados numéricos , Inquéritos e Questionários/estatística & dados numéricos , Fatores de Tempo
9.
Curr Rheumatol Rep ; 21(5): 19, 2019 03 12.
Artigo em Inglês | MEDLINE | ID: mdl-30868287

RESUMO

PURPOSE OF REVIEW: Scientific research in axial spondyloarthritis (axSpA) has grown significantly. Nevertheless, the patient perspective remains insufficiently explored. Using a cross-sectional survey, the European Map of Axial Spondyloarthritis (EMAS) describes how patients living with self-reported axSpA experience their disease physically, psychologically, and socially. RECENT FINDINGS: 2846 patients participated: mean age 43.9 ± 12.3 years, 61.3% female, mean disease duration was 17.2 ± 12.4 years, and 71.3% were HLA-B27 positive. Mean diagnostic delay was 7.4 ± 8.4 years. Mean BASDAI score was 5.5 ± 2.0 and 75.7% reported moderate/severe spinal stiffness throughout the day. Daily life was substantially impaired: 74.1% reported difficulties finding a job due to the disease, and 61.5% reported psychological distress. EMAS results showed long diagnostic delay and substantial physical and psychological burden, indicating important unmet needs for patients. Furthermore, axSpA restricted patients' ability to participate in their daily routine and lead a productive work life. Understanding the patient's perspective can improve both health outcomes and shared decision-making between patient and rheumatologist.


Assuntos
Efeitos Psicossociais da Doença , Qualidade de Vida/psicologia , Espondilartrite/diagnóstico , Adulto , Diagnóstico Tardio , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Espondilartrite/psicologia
10.
Rheumatology (Oxford) ; 55(6): 1047-1052, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26961743

RESUMO

OBJECTIVE: PsA is associated with significant distress and can be life-ruining. Reducing distress can improve quality of life and disease outcomes. Quality of life measures broadly identify the extent to which PsA impacts on people's lives but do not enable clinicians to address PsA-specific distress in the setting of the clinic. The aim of this study was to explore people's illness beliefs, emotions and behaviours that relate to living with PsA and account for the distress experienced by those living with this condition. METHODS: Semi-structured individual interviews were conducted in the UK with adults with PsA. Interview questions were theoretically informed by the Common-Sense Self-Regulation Model (CS-SRM). Two stages of data analysis, in line with thematic and framework analysis principles, involved coding pre-determined CS-SRM components and identifying any additional emergent themes. Constant comparison techniques allowed for patterns across CS-SRM components to emerge inductively from the data. RESULTS: Twenty-four people with PsA participated (54% male; aged 27-71; time since onset ranged between 4 months and 29 years). Four core themes comprising clusters of illness beliefs, emotions and related behaviours emerged accounting for patient distress: restrictions, role of others, resentment and resignation. Suicidal ideation in the sample was commonly expressed and patients feared exponential degeneration of their condition. Patients reported the condition being dismissed or belittled by others and therefore hiding their distress from people around them. CONCLUSION: People with PsA experience significant disease-related distress, including suicidal ideation. Misperceptions, ineffective coping styles (e.g. avoidance/blocking) and negative emotions should be actively identified and addressed with people with PsA.

11.
Med Educ ; 49(2): 174-85, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25626748

RESUMO

CONTEXT: There is little room in clerkship curricula for students to express emotions, particularly those associated with the development of a caring identity. Yet it is recognised that competence, alone, does not make a good doctor. We therefore set out to explore the relationship between emotions and identity in clerkship education. Our exploration was conceptually oriented towards Figured Worlds theory, which is linked to Bakhtin's theory of dialogism. METHODS: Nine female and one male member of a mixed student cohort kept audio-diaries and participated in both semi-structured and cognitive individual interviews. The researchers identified 43 emotionally salient utterances in the dataset and subjected them to critical discourse analysis. They applied Figured Worlds constructs to within-case and cross-case analyses, supporting one another's reflexivity and openness to different interpretations, and constantly comparing their evolving interpretation against the complete set of transcripts. RESULTS: Students' emotions were closely related to their identity development in the world of medicine. Patients were disempowered by their illnesses. Doctors were powerful because they could treat those illnesses. Students expressed positive emotions when they were granted positions in the world of medicine and were able to identify with the figures of doctors or other health professionals. They identified with doctors who behaved in caring and professionally appropriate ways towards patients and supportively towards students. Students expressed negative emotions when they were unable to develop their identities. CONCLUSIONS: Critical discourse analysis has uncovered a link between students' emotions and their identity development in the powerful world of becoming and being a doctor. At present, identity development, emotions and power are mostly tacit in undergraduate clinical curricula. We speculate that helping students to express emotions and exercise power in the most effective ways might help them to develop caring identities.


Assuntos
Estágio Clínico , Emoções , Identificação Psicológica , Relações Médico-Paciente , Estudantes de Medicina/psicologia , Atitude do Pessoal de Saúde , Educação de Graduação em Medicina , Feminino , Humanos , Masculino , Modelos Teóricos , Médicos/psicologia , Pesquisa Qualitativa , Reino Unido
12.
BMC Fam Pract ; 16: 58, 2015 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-25958196

RESUMO

BACKGROUND: British South Asians have a higher incidence of diabetes and poorer health outcomes compared to the general UK population. Beliefs about diabetes are known to play an important role in self-management, yet little is known about the sociocultural context in shaping beliefs. This study aimed to explore the influence of sociocultural context on illness beliefs and diabetes self-management in British South Asians. METHODS: A mixed methods approach was used. 67 participants recruited using random and purposive sampling, completed a questionnaire measuring illness beliefs, fatalism, health outcomes and demographics; 37 participants completed a social network survey interview and semi-structured interviews. Results were analysed using SPSS and thematic analysis. RESULTS: Quantitative data found certain social network characteristics (emotional and illness work) were related to perceived concern, emotional distress and health outcomes (p < 0.05). After multivariate analysis, emotional work remained a significant predictor of perceived concern and emotional distress related to diabetes (p < 0.05). Analysis of the qualitative data suggest that fatalistic attitudes and beliefs influences self-management practices and alternative food 'therapies' are used which are often recommended by social networks. CONCLUSIONS: Diabetes-related illness beliefs and self-management appear to be shaped by the sociocultural context. Better understanding of the contextual determinants of behaviour could facilitate the development of culturally appropriate interventions to modify beliefs and support self-management in this population.


Assuntos
Cultura , Diabetes Mellitus , Autocuidado/psicologia , Adulto , Povo Asiático/psicologia , Comparação Transcultural , Diabetes Mellitus/etnologia , Diabetes Mellitus/psicologia , Diabetes Mellitus/terapia , Etnicidade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Apoio Social , Inquéritos e Questionários , Reino Unido/epidemiologia
13.
JBI Evid Synth ; 22(3): 481-488, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38112241

RESUMO

OBJECTIVE: The aim of this scoping review is to investigate how fatigue is defined and measured in adults with long COVID. INTRODUCTION: Following COVID-19 infection, 10% to 20% of individuals experience persisting symptoms for a minimum of 3 months; this is commonly known as long COVID. Fatigue is one of the most prevalent symptoms of long COVID, but there is currently no consistently applied definition of long COVID fatigue. To advance our understanding of long COVID fatigue, we must first identify the current definitions and measures being used to describe and mesure this condition. INCLUSION CRITERIA: This review will consider published and unpublished studies involving adults (≥18 years) that define and/or measure long COVID fatigue. Papers using quantitative or qualitative designs will be included. Conference abstracts, editorials, and opinion papers will be excluded. METHODS: Published studies from January 2020 onwards will be searched for across MEDLINE (Ovid), CINAHL (EBSCOhost), Embase (Ovid), Scopus, PsycINFO (Ovid), Web of Science Core Collection, Epistemonikos, and Cochrane Central Register of Controlled Trials (CENTRAL). Dimensions, Overton, and ProQuest Dissertations and Theses will be searched for unpublished literature. Eligible records will be de-duplicated, and 2 independent reviewers will carry out title, abstract, and full-text screening. A data extraction tool will be pilot tested on a small number of papers, then modified as necessary, with any modifications detailed in the scoping review. Findings will be presented in tables and charts, supported by a narrative summary. REVIEW REGISTRATION: Open Science Framework https://osf.io/hnf8z.


Assuntos
COVID-19 , Síndrome de COVID-19 Pós-Aguda , Adulto , Humanos , Fadiga , Literatura de Revisão como Assunto
14.
RMD Open ; 10(2)2024 Jun 08.
Artigo em Inglês | MEDLINE | ID: mdl-38851236

RESUMO

BACKGROUND: The International Map of Axial Spondyloarthritis (IMAS) is a global initiative aimed to assess the impact and burden of axial spondyloarthritis (axSpA) and identify the unmet needs from the patient's perspective. METHOD: IMAS is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville, Novartis Pharma AG and steered by a scientific committee. IMAS collected information through an online cross-sectional survey (2017-2022) from unselected patients with axSpA from Europe, Asia, North America, Latin America and Africa who completed a comprehensive questionnaire containing over 120 items. RESULTS: 5557 patients with axSpA participated in IMAS. Mean age was 43.9 ±12.8 years, 55.4% were female, 46.2% had a university education and 51.0% were employed. The mean diagnostic delay was 7.4 ±9.0 years (median: 4.0), and the mean symptom duration was 17.1 ±13.3 years. 75.0% of patients had active disease (Bath Ankylosing Spondylitis Disease Activity Index ≥4), and 59.4% reported poor mental health (12-item General Health Questionnaire ≥3). In the year before the survey, patients had visited primary care physicians 4.6 times and the rheumatologist 3.6 times. 78.6% had taken non-steroidal anti-inflammatory drug ever, 48.8% biological disease-modifying antirheumatic drugs and 43.6% conventional synthetic disease-modifying antirheumatic drugs. Patients's greatest fear was disease progression (55.9%), while the greatest hope was to be able to relieve pain (54.2%). CONCLUSIONS: IMAS shows the global profile of patients with axSpA, highlighting unmet needs, lengthy delays in diagnosis and high burden of disease in patients with axSpA worldwide. This global information will enable more detailed investigations to obtain evidence on the critical issues that matter to patients around the world to improve their care and quality of life.


Assuntos
Espondiloartrite Axial , Qualidade de Vida , Humanos , Masculino , Feminino , Adulto , Estudos Transversais , Pessoa de Meia-Idade , Espondiloartrite Axial/diagnóstico , Espondiloartrite Axial/epidemiologia , Inquéritos e Questionários , Efeitos Psicossociais da Doença , Saúde Global , Índice de Gravidade de Doença
15.
RMD Open ; 10(2)2024 Jun 12.
Artigo em Inglês | MEDLINE | ID: mdl-38866592

RESUMO

BACKGROUND: This study aims to assess the prevalence of poor mental health in axial spondyloarthritis (axSpA) and its associated factors in a large sample of patients from the International Map of Axial Spondyloarthritis (IMAS) study from around the globe. METHODS: IMAS is a cross-sectional online survey (2017-2022) that includes 5557 unselected patients with axSpA worldwide. Mental health was evaluated by the 12-item General Health Questionnaire (GHQ-12) and the cut-off point for poor mental health was set at 3. Logistic regression analysis was used to evaluate relationships between the investigated factors and poor mental health (GHQ-12≥3) in patients with axSpA (n=4335). RESULTS: Of 5351 patients, the mean of GHQ-12 was 4.7 and 59.4% were having poor mental health, being 69.9% in South Africa, 63.7% in Latin America, 60.8% in Europe, 54.3% in North America and 51.8% in Asia. Overall, 40.5% and 37.2% of patients experienced anxiety and depression. The factors associated with poor mental health were younger age (OR=0.99), female gender (OR=1.16), being on sick leave or unemployed (OR=1.63), non-physical activity (OR=1.22), smoking (OR=1.20), higher Bath Ankylosing Spondylitis Disease Activity Index [BASDAI] (OR=1.42), functional limitation (OR=1.02) and shorter symptoms duration (OR=0.98). CONCLUSIONS: Globally, 6 in 10 patients with axSpA had poor mental health, with a higher proportion in South Africa and lower in Asia. The factors associated with poor mental health include domains such as younger age, female gender, employment difficulties, harmful habits, disease burden and symptom duration. A holistic management approach to axSpA should encompass both physical and mental health.


Assuntos
Espondiloartrite Axial , Saúde Mental , Humanos , Masculino , Feminino , Adulto , Estudos Transversais , Espondiloartrite Axial/epidemiologia , Espondiloartrite Axial/etiologia , Pessoa de Meia-Idade , Prevalência , Depressão/epidemiologia , Depressão/etiologia , Inquéritos e Questionários , Fatores de Risco , Ansiedade/epidemiologia , Ansiedade/etiologia
16.
Rheumatol Ther ; 11(4): 927-945, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38847994

RESUMO

INTRODUCTION: To assess differences in the diagnosis journey and access to care in a large sample of patients with axial spondyloarthritis (axSpA) from around the world, included in the International Map of Axial Spondyloarthritis (IMAS). METHODS: IMAS was a cross-sectional online survey (2017-2022) of 5557 unselected patients with axSpA from 27 countries. Across five worldwide geographic regions, the patient journey until diagnosis and healthcare utilization in the last 12 months prior to survey were evaluated. Univariable and multivariable linear regression was used to analyze factors associated with higher healthcare utilization. RESULTS: Of 5557 participants in IMAS, the diagnosis took an average of 7.4 years, requiring more than two visits to HCPs (77.7% general practitioner and 51.3% rheumatologist), and more than two diagnostic tests [67.5% performed human leukocyte antigen B27 (HLA-B27), 64.2% x-ray, and 59.1% magnetic resonance imaging (MRI) scans]. North America and Europe were the regions with the highest number of healthcare professional (HCP) visits for diagnosis, while the lowest number of visits was in the Asian region. In the previous 12 months, 94.9% (n = 5272) used at least one healthcare resource, with an average of 29 uses per year. The regions with the highest healthcare utilization were Latin America, Europe, and North America. In the multiple linear regression, factors associated with higher number of healthcare utilization were younger age (b =  - 0.311), female gender (b = 7.736), higher disease activity (b = 1.461), poorer mental health (b = 0.624), greater functional limitation (b = 0.300), greater spinal stiffness (b = 1.527), and longer diagnostic delay (b = 0.104). CONCLUSION: The diagnosis of axSpA usually takes more than two visits to HCPs and at least 7 years. After diagnosis, axSpA is associated with frequent healthcare resource use. Younger age, female gender, higher disease activity, poorer mental health, greater functional limitation, greater spinal stiffness, and longer diagnostic delay are associated with higher healthcare utilization. Europe and North America use more HCP visits and diagnostic tests before and after diagnosis than the other regions.

17.
Psychosom Med ; 75(2): 211-21, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23324874

RESUMO

OBJECTIVE: Despite previous intervention trials, it is unclear which psychological treatments are most effective for people with coronary heart disease (CHD). We have conducted a systematic review with meta-regression to identify the characteristics of psychological interventions that improve depression and depressive symptoms among people with CHD. METHODS: Searches of multiple electronic databases up to March 2012 were conducted, supplemented by hand-searching of identified reviews and citation tracing of eligible studies. Studies were included if they reported a randomized controlled trial of a psychological intervention for people with CHD and included depression as an outcome. Data on main effects and characteristics of interventions were extracted from eligible studies. Standardized mean differences (SMDs) were calculated for each study and pooled using random-effects models. Random-effects multivariate meta-regression was performed to identify treatment characteristics associated with improvements in depression. RESULTS: Sixty-four independent treatment comparisons were identified. Psychological interventions improved depression, although the effect was small (SMD=0.18, p<.001). Problem solving (SMD=0.34), general education (SMD=0.19), skills training (SMD=0.25), cognitive-behavioral therapy (CBT; SMD=0.23), and relaxation (SMD=0.15) had small effects on CHD patients who were recruited irrespective of their depression status. Among high-quality trials of depressed CHD patients, only CBT showed significant but small effects (SMD=0.31). When entered into multivariable analysis, no individual treatment component significantly improved depression. CONCLUSIONS: CBT and problem solving should be considered for inclusion in future treatment developments and randomized controlled trials. However, the effects are small in magnitude, and there is room to develop new interventions that may be more effective.


Assuntos
Doença das Coronárias/terapia , Transtorno Depressivo/terapia , Psicoterapia/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto/estatística & dados numéricos , Terapia Cognitivo-Comportamental , Doença das Coronárias/complicações , Bases de Dados Bibliográficas , Transtorno Depressivo/complicações , Humanos , Análise Multivariada , Resolução de Problemas , Viés de Publicação , Análise de Regressão , Resultado do Tratamento
18.
Photochem Photobiol Sci ; 12(1): 182-9, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-22961505

RESUMO

Photodermatoses are a group of skin disorders caused or exacerbated by ultraviolet and/or visible radiation, which collectively affect a high proportion of the population and substantially affect quality of life (QoL). Our objective was to assess the psychological impact of these conditions. Patients with a range of photodermatoses diagnosed at a specialist investigation centre in the UK completed questionnaires evaluating (i) anxiety and (ii) depression, using the Hospital Anxiety and Depression Scale (HADS), (iii) social anxiety, using the Fear of Negative Evaluation measure (FNE), (iv) coping strategies (brief COPE) and (v) QoL, using the Dermatology Life Quality Index (DLQI). Questionnaires were returned by 185 of 260 patients (71.1% response rate). Mean age was 50.2 years (SD 14.5, range 20-85), 80.3% female. Polymorphic light eruption was the most common diagnosis, followed by photoaggravated eczema, other photoaggravated dermatological conditions and solar urticaria. Across the sample, high percentages, i.e. 23% and 7.9% of individuals, showed scores indicating clinical levels of anxiety and depression, respectively. Facial involvement was a strong indicator for depression (t = 2.7, p < 0.01). In regression analyses psychological factors (particularly depression and adaptive coping) were the principle predictors of QoL, accounting for 17.7% of the variance (F = 7.61, p < 0.01), while clinical variables accounted for an additional 10.1% (F = 8.96, p < 0.01), with number of months/year affected exerting a significant effect (p < 0.01). This study demonstrates the high psychological comorbidity of these conditions; more awareness of this is required, with adoption of a biopsychosocial approach to their management.


Assuntos
Transtornos de Fotossensibilidade/psicologia , Qualidade de Vida , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade , Demografia , Depressão , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise de Regressão , Fatores Sexuais , Inquéritos e Questionários
19.
Int J Technol Assess Health Care ; 29(4): 384-91, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24290331

RESUMO

OBJECTIVES: Depression is common in diabetes and linked to a wide range of adverse outcomes. UK policy indicates that depression should be treated using conventional psychological treatments in a stepped care framework. This review aimed to identify current economic evidence of psychological treatments for depression among people with diabetes. METHOD: Electronic search strategies (conducted in MEDLINE, EMBASE, PsycINFO, CINAHL, NHS EED) combined clinical and economic search terms to identify full economic evaluations of the relevant interventions. Prespecified screening and inclusion criteria were used. Standardized data extraction and critical appraisal were conducted and the results summarized qualitatively. RESULTS: Excluding duplicates, 1,516 studies for co-morbid depression and diabetes were screened. Four economic evaluations were identified. The studies found that the interventions improved health status, reduced depression and were cost-effective compared with usual care. The studies were all U.S.-based and evaluated collaborative care programs that included psychological therapies. Critical appraisal indicated limitations with the study designs, analysis and results for all studies. CONCLUSIONS: The review highlighted the paucity of evidence in this area. The four studies indicated the potential of interventions to reduce depression and be cost-effective compared with usual care. Two studies reported costs per QALY gained of USD 267 to USD 4,317, whilst two studies reported the intervention dominated usual care, with net savings of USD 440 to USD 612 and net gains in patient free days or QALYs.


Assuntos
Análise Custo-Benefício , Transtorno Depressivo Maior/terapia , Diabetes Mellitus/economia , Idoso , Transtorno Depressivo Maior/complicações , Transtorno Depressivo Maior/economia , Diabetes Mellitus/tratamento farmacológico , Diabetes Mellitus/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Anos de Vida Ajustados por Qualidade de Vida
20.
Psychol Health Med ; 18(5): 501-14, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-23116223

RESUMO

Psoriasis remains incurable and many sufferers experience related psychological distress and a lower quality of life comparable with other chronic diseases. A subpopulation of people with psoriasis believes their condition is exacerbated by psychological stress. This review analyses whether stress-reduction interventions can reduce: the physical severity of psoriasis and related psychological distress. A systematic search across EMBASE, MEDLINE, The Cochrane Library SIGLE and PsychInfo, identified 730 trials and 10 were included. Three trials found a significant difference in psoriasis outcomes between groups post-intervention, (p < 0.05). Seven studies included a psychological outcome and three found a significant difference (p < 0.05). Three trials included a quality of life measurement and one of these reported a significant improvement (p < 0.001). Due to low quality evidence it is currently insufficient to judge stress reduction interventions as either effective or ineffective. We make nine recommendations for future research in this multidisciplinary field.


Assuntos
Terapia Cognitivo-Comportamental/métodos , Psoríase/prevenção & controle , Qualidade de Vida , Terapia de Relaxamento/métodos , Estresse Psicológico/prevenção & controle , Humanos , Avaliação de Resultados em Cuidados de Saúde/métodos , Psoríase/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Índice de Gravidade de Doença
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