BackgroundIn many countries, including the Netherlands, a substantial number of patients visit the Emergency Department (ED) without a referral by a general practitioner. The goal of this study was to determine the characteristics and motivations of self-referred patients (SRPs) at the ED. The secondary objective was to explore SRPs’ opinion about copayments.MethodsA survey, in seven different languages was performed among SRPs from October 2011 until January 2012 at an academic ED in the Netherlands. Patients were included on 21 day-, 21 evening-, and 21 nightshifts during week and weekend days equally. Patient characteristics, motivations, complaints, diagnosis, and the opinion regarding copayments were examined.ResultsA total of 436 SRPs were included (response rate 82%). Forty-seven percent of the ED population was self-referred. SRPs were mainly male (58%), between 18 and 35 years (54%), Dutch (67%), single without children (42%), and low-educated (73%). The most commonly presented complaints were of musculoskeletal origin (35%). Expected need for additional medical care (e.g., X-rays, blood tests) was the reason to visit the ED for 28% of the SRPs. Around 30% of the SRPs were not prepared to pay for an ED visit. Fifty percent of SRPs were prepared to pay up to 25 or 50 EUR. Highly educated patients were willing to pay more than patients with a low level of education (p < 0.05).ConclusionsSRPs (47% of the total ED population) are often young men with musculoskeletal complaints. They are convinced that additional medical tests are necessary. About 70% of the SRPs are willing to make a copayment, half of the SRPs with a maximum between 25 EUR and 50 EUR. As highly educated SRPs are prepared to pay more, introducing copayments might influence equity in health care accessibility.
Background
The Patient‐Reported Outcomes Measurement Information System (PROMIS) Profile‐29 questionnaire is widely used worldwide, but it has not yet been validated in the Netherlands, nor in persons with hemophilia.
Objective
To validate the Dutch‐Flemish version of the PROMIS‐29 Profile v2.01 in adults with hemophilia.
Methods
Dutch males with hemophilia (all severities) completed questionnaires that contained sociodemographic and clinical characteristics, the PROMIS‐29, RAND‐36, and the Hemophilia Activities List (HAL). Structural validity of each subscale was assessed with confirmatory factor analysis (CFA). Internal consistency was calculated for each subscale with sufficient model fit in CFA. Construct validity was assessed by testing hypotheses about (1) correlations of each PROMIS‐29 subscale with corresponding scales of RAND‐36 and domains of HAL, and (2) mean differences in T‐scores between subgroups with different hemophilia severities, self‐reported joint impairment, and HIV infection status. We considered ≥75% of data in accordance with the hypotheses evidence for construct validity.
Results
In total, 770 persons with hemophilia participated in this cross‐sectional study. CFA revealed sufficient structural validity for five subscales: Physical Function, Depression, Sleep Disturbance, Ability to Participate in Social Roles and Activities, and Pain Interference. Internal consistency was high and Cronbach's alpha ranged from 0.79 for Sleep Disturbance to 0.96 for Pain Interference. Differences between clinical subgroups were in the expected direction. Construct validity was confirmed for Physical Function, Anxiety, Depression, Fatigue, Sleep Disturbance, and Pain Intensity.
Conclusion
This study revealed sufficient evidence for structural validity, internal consistency, and construct validity for most PROMIS Profile‐29 subscales among people with hemophilia in the Netherlands.
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