RESUMO
Diagnosis and effective treatment of axial spondyloarthritis (AxSpA) are often delayed due to inadequate awareness and poor patient-physician communication. Some AxSpA patients fail to maintain an active lifestyle by exercising regularly, further worsening their disease management. The evolving concept of patient-centred care necessitates better understanding of patient awareness and their needs. We aimed to survey AxSpA patients to reflect on healthcare planning and management perspectives. Our self-administered questionnaire focused on perceptions of AxSpA diagnosis and management, particularly exploring issues of physical activity and active lifestyle. Satisfaction with AxSpA medical care and its accessibility, diagnostic delays, patient-physician communication, and support for disease management were also explored. This offline survey was arranged at the Department of Rheumatology, Immunology, and Internal Medicine of Jagiellonian University Medical College and Krakow University Hospital. We surveyed patients with AxSpA attending outpatient clinics between December 1st, 2023 and April 22nd, 2024. The questionnaire included questions on types of physical activities, barriers to exercising, satisfaction with medical care, patient-physician interactions, diagnostic delays, and use of teleconsultations. A total of 117 patients with AxSpA were enrolled (mean age 41.62 years). The majority (n = 93, 79.5%) were employed. There was a male predominance (69, 59%). The average diagnostic delay was 5.5 years. Notably, 104 (88.9%) responders perceived physical activity as a factor influencing their disease course. However, only 32 (27.35%) managed to exercise regularly (≥ 30 min, 2-3 times a week). The majority (70, 59.83%) were irregularly engaged in some form of physical activity, with 15 (12.8%) not exercising at all, and nearly half (48%) reported at least one barrier to maintaining a physically active lifestyle. Pain (32, 27.35%), fatigue (27, 23.08%), lack of motivation (17, 14.53%), and lack of time (12, 10.26%) were noted as barriers to exercising. The respondents preferred to exercise at home. The survey identified critical areas where patient dissatisfaction or uncertainty were notably prevalent: 38 (32.5%) were uncertain and 35 (30%) were dissatisfied with rehabilitation access. For spa therapy, 63 (53.85%) reported uncertainty and 23 (19.7%) expressed dissatisfaction. Only 48 (41%) were treated by a rehabilitation specialist last year. Only 23% of AxSpA patients took part in teleconsultations last year, and 65% preferred in-person visits. While AxSpA patients recognize the importance of physical activity, significant barriers exist to engaging them regularly in exercising. Addressing these barriers through personalized, motivational, and educational strategies could improve patient outcomes. Improving patient satisfaction with healthcare services, particularly in areas of rehabilitation and physician-patient communication, is crucial for improving the overall care of AxSpA patients.
Assuntos
Espondiloartrite Axial , Conhecimentos, Atitudes e Prática em Saúde , Satisfação do Paciente , Relações Médico-Paciente , Humanos , Estudos Transversais , Adulto , Masculino , Feminino , Pessoa de Meia-Idade , Espondiloartrite Axial/terapia , Inquéritos e Questionários , Exercício Físico , Diagnóstico TardioRESUMO
Spondyloarthritis (SpA) is a group of inflammatory disorders, including axial SpA (axSpA), characterized by inflammation in the spine and sacroiliac joints. Healthcare professionals have a crucial role in diagnosing and managing axSpA. Assessing their knowledge, perceptions, and practices is essential to enhance patient care. The objective of this study is to evaluate these factors by conducting an online survey. This online survey was performed using SurveyMonkey.com to assess healthcare professionals' knowledge, perceptions, and practices related to axSpA diagnosis, management, and monitoring. The questionnaire included questions about definitions, management strategies, monitoring approaches, treatment options, and barriers to care. Convenience sampling was used, and the data were analyzed descriptively by Microsoft Excel. One hundred sixty-four healthcare professionals participated; most respondents were rheumatologists from various geographic locations (27 countries). Most participants were familiar with axSpA definitions and diagnostic criteria, demonstrating high expertise. Variations were seen in follow-up intervals and diagnostic preferences, reflecting clinical heterogeneity. Seventy-two (43.9%) individuals had a multidisciplinary team, frequently including rheumatologists, physiotherapists, and radiologists. Of the participants, 73 (44.5%) had online/telephone follow-up sessions. The pharmacological and non-pharmacological treatment approaches varied, pointing to the importance of personalized care. Glucocorticoid use varied among countries. Recognizing inflammatory back pain, interpreting radiographs, and diagnosing early was essential to medical education. This study provides beneficial data on healthcare professionals' knowledge, perceptions, and practices regarding axSpA. While diagnostic familiarity and multidisciplinary approach are positives, there is a potential to standardize management, improve telemedicine services, remove barriers to physical activity, and optimize treatment options.
Assuntos
Espondiloartrite Axial , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Transversais , Masculino , Feminino , Espondiloartrite Axial/diagnóstico , Espondiloartrite Axial/terapia , Adulto , Inquéritos e Questionários , Pessoa de Meia-Idade , Reumatologistas , Pessoal de Saúde , Padrões de Prática Médica , Atitude do Pessoal de Saúde , Pesquisas sobre Atenção à SaúdeRESUMO
BACKGROUND: Comorbidities are frequent in psoriatic arthritis (PsA) and may contribute to worse health-related outcomes. Patient-reported outcomes (PROs) are used to evaluate the burden of the assessed disease. The aim of this study is to evaluate the impact of comorbidities on selected PROs in PsA. METHODS: Adult patients, diagnosed with PsA, based on CASPAR criteria, were included in this cross-sectional, observational study. Collected data encompassed the comorbidities and PROs (Health Assessment Questionnaire [HAQ], Multi-Dimensional Health Assessment Questionnaire [MDHAQ], 36-Item Short Form Health Survey [SF-36]). Standard statistic methods were performed for data assessment. RESULTS: There were 267 participants included in the study (54.7% females). The most prevalent comorbidities were cardiovascular diseases (CVD) (29.2 %). Multimorbidity was observed in 50.2% cases and was associated with poorer results of SF-36 questionnaire, regarding bodily pain (34.7 [30.1, 39.3] vs. 47.5 [43.1, 52.0]; p<0.01), physical functioning (52.1 [47.3, 56.9] vs. 63.1 [58.9, 67.4]; p<0.01) and role physical (28.5 [21.2, 35.9] vs. 42.8 [35.2, 50.4]; p<0.01). CVD were associated with poorer MDHAQFn score (ß=0.17, p<0.01), while mental disorders negatively influenced mental health (ß= -0.35, p<0.01), vitality (ß= -0.22, p<0.01), general health (ß= -0.19, p<0.01), social functioning (ß= -0.15, p=0.04) and role emotional (ß= -0.30, p<0.01) dimensions of SF-36. CONCLUSIONS: Multimorbidity exerts significant impact on physical aspects of quality of life (QoL) in PsA. CVD and mental disorders adversely influence functional capacity as well as mental and social dimensions of QoL, respectively. The impact of comorbidities should be taken into account by clinicians and researchers assessing PROs.