Introduction In patient-doctor interaction both parties play a role. Primary objective was to determine if the concordance among rheumatologists and their patients of their ideal of autonomy was associated with a better patient-doctor relationship. Secondary objective was to describe factors associated to a patient paternalistic ideal of autonomy (PPIA). Materials and methods This cross-sectional study had 3 steps. Step-1 consisted in translation/cultural local adaption of Ideal Patient Autonomy Scale (IPAS), a 14-items Dutch questionnaire. Step-2 consisted of IPAS validity and reliability in 201 outpatients. Step-3 consisted of the application of IPAS and the patient-doctor relationship questionnaire (PDRQ) to 601 outpatients with a medical encounter, and of IPAS to the 21 attending rheumatologists. Each patient-physician encounter was classified into with/without concordance in the ideal of autonomy and PRDQ scores were compared (Man Whitney U test). Regression analysis was used for associations. Results Step-1 followed ISPOR task force recommendations. Patients from Step-2 and Step-3 were representative outpatients with rheumatic diseases. IPAS structure underwent a modification; the 14 items were redistributed into four subscales, further combined into PPIA vs. patient-centered autonomy ideal. IPAS was valid and reliable. There were 497 patients with a preferred ideal of autonomy, primarily (84.9%) PPIA. There were 363 patient-doctor encounters with concordance in the autonomy ideal and their PDRQ-9 scores were higher. Religious beliefs and higher PDRQ-9 item 8 score (“I feel pleased with my doctor´s treatment”) were associated to a PPIA. Conclusions Concordance of autonomy ideal among patients and their rheumatologists positively impacts on the patient-doctor relationship.
Introduction Rheumatoid arthritis (RA) has female preponderance and interferes with the ability to perform job roles. Household work has 2 dimensions, paid and unpaid. There is not a validated instrument that assesses the impact of RA on limitations to perform household work. We report the development and validation of a questionnaire that assesses such limitations, the HOWL-Q. Methods The study was performed in 3 steps. Step-1 consisted on HOWL-Q conceptual model construction (literature review and semi-structured interviews to 20 RA outpatients and 20 controls, household workers, who integrated sample (S)-1). Step-2 consisted of instructions selection (by 25 outpatients integrating S-2), items generation and reduction (theory and key informant suggestions, modified natural semantic network technique, and pilot testing in 200 household workers outpatients conforming S-3), items scoring, and questionnaire feasibility (in S-3). Step-3 consisted of construct (exploratory factor analysis) and criterion validity (Spearman correlations), and HOWL-Q reliability (McDonald's Omega and test-retest), in 230 household work outpatients integrating S-4. Results Patients conforming the 4 samples were representative of typical RA outpatients. The initial conceptual model included 8 dimensions and 76 tasks/activities. The final version included 41 items distributed in 5 dimensions, was found feasible and resulted in 62.46% of the variance explained: McDonald's Omega = 0.959, intraclass-correlation-coefficient = 0.921 (95% CI = 0.851-0.957). Moderate-to-high correlations were found between the HOLW-Q,
To describe disease activity and disability during the first year of follow-up, from rheumatoid arthritis (RA) patients who discontinue tofacitinib after they end participation in a clinical trial. From 2008 to 2016, 36 patients were enrolled in the "Long term follow-up study with tofacitinib (and methotrexate) for RA treatment". At the end of the study, tofacitinib was discontinued and patients were proposed to enter an observational study; 35 agree and had scheduled evaluations at baseline, at 15 and 30 days of follow-up, at month 2 and 3, and thereafter every 3 months. Disease activity was evaluated as per DAS28-ESR and disability as per HAQ. During follow-up, treatment was treat-to-target oriented, only conventional DMARDs were indicated. Descriptive statistics and nonparametric test were used. The study was approved by IRB. Patients were primarily females (N = 34), had median (Q25-75) age of 52 years (45-58), and had received tofacitinib for a median of 7.9 years (6.3-8.3). The proportion of patients with remission and low disease activity decreased from day 30 of follow-up and recovered after 270 days, meanwhile patients with high disease activity increased from 0% at baseline to 6.3% at 1 year. At study entry, 20 patients had remission/low disease activity; during follow-up, 85% deteriorated after (median) 30 days; among them, 23.5% recovered their baseline status after a median of 172.5 days. The HAQ showed a similar behavior, but 66.7% recovered. A substantial proportion of RA patients deteriorated outcomes early after tofacitinib cessation; some patients recovered baseline status with traditional DMARDS.
Background:The patient-doctor relationship (PDR) is a complex phenomenon with strong cultural determinants, which impacts health-related outcomes and, accordingly, does have ethical implications. The study objective was to describe the PDR from medical encounters between 600 Mexican outpatients with rheumatic diseases and their attending rheumatologists, and to identify factors associated with a good PDR. Methods:A cross-sectional study was performed. Patients completed the PDRQ-9 (Patient-Doctor Relationship Questionnaire, 9 items), the HAQ-DI (Health Assessment Questionnaire Disability Index), the Short-Form 36 items (SF-36), a pain-visual analog scale, and the Ideal Patient Autonomy Scale. Relevant sociodemographic, disease-related, and treatmentrelated variables were obtained. Patients assigned a PDRQ-9 score to each patient-doctor encounter. Regression analysis was used to identify factors associated with a good PDR, which was defined based on a cutoff point established using the borderline performance method.Results: Patients were primarily middle-aged female subjects (86%), with substantial disease duration (median, 11.1 years), without disability (HAQ-DI within reference range, 55.3%), and with deteriorated quality of life (SF-36 out of reference range, 73.7%-78.6%). Among them, 36.5% had systemic lupus erythematosus and 31.8% had rheumatoid arthritis. There were 422 patients (70.3%) with a good PDR and 523 medical encounters (87.2%) involved certified rheumatologists.Patient paternalistic ideal of autonomy (odds ratio [OR], 3.029; 95% confidence interval [CI], 1.793-5.113), SF-36 score (OR, 1.014; 95% CI, 1.003-1.025), female sex (OR, 0.460; 95% CI, 0.233-0.010), and being certified rheumatologist (OR, 1.526; 95% CI, 1.059-2.200) were associated with a good PDR.Conclusions: Patient-related factors and the degree of experience of the attending physician impact the quality of the PDR, in Mexican outpatients with rheumatic diseases.
BackgroundLittle attention has been given to the impact of rheumatoid arthritis (RA) on domestic work, which remains the domain of women, particularly in the Latin American region. The study identified factors associated with RA-related household work limitations (HOWL) in Mexican for women with long-standing disease.MethodsThis cross-sectional study was performed between September 2020 and April 2022, in patients from the recent-onset RA cohort (initiated in 2004). At study entry, patients had standard rheumatic assessments and were administered the HOWL questionnaire, a survey to assess family responsibilities, household work characteristics, and the patient's economic dependency, and the family APGAR index to assess family function. Multiple logistic regression analysis identified variables associated with RA-related HOWL.ResultsData from 114 female RA patients were analyzed. Overall, at cohort entry, patients were middle-aged (median, 37.5 years), with 12 years of education, and the minority (n = 42 [39.3%]) were married or living together. Patients were representative of typical patients with recent-onset disease and had significant disease activity. At study entry, the patients had 12 (7–16) years of disease duration, and their disease was under control. The median (interquartile range) HOLW-Q score was 0.67 (0–3.33), and 33 patients (28.9%) had RA-related HOWL. Receiving financial support for family living expenses, requiring assistance for activities of daily living, and DAS28 (Disease Activity Score, 28 joints evaluated) were associated with RA-related HOWL; meanwhile, a better Short-Form 36 score at disease onset was protective.ConclusionsDomestic work in Mexican RA women might be impacted by social determinants, health-related quality of life at disease onset, and current disease activity status.
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