Evaluation of Patient-Friendly Diagnosis Clarifications in a Hospital Patient Portal.

BACKGROUND: Medical data can be difficult to comprehend for patients, but only a limited number of patient-friendly terms and definitions are available to clarify medical concepts. Therefore, we developed an algorithm that generalizes diagnoses to more general concepts that do have patient-friendly terms and definitions in SNOMED CT. We implemented the generalizations, and diagnosis clarifications with synonyms and definitions that were already available, in the problem list of a hospital patient portal. OBJECTIVE: We aimed to assess the extent to which the clarifications cover the diagnoses in the problem list, the extent to which clarifications are used and appreciated by patient portal users, and to explore differences in viewing problems and clarifications between subgroups of users and diagnoses. METHODS: We measured the coverage of diagnoses by clarifications, usage of the problem list and the clarifications, and user, patient and diagnosis characteristics with aggregated, routinely available electronic health record and log file data. Additionally, patient portal users provided quantitative and qualitative feedback about the clarification quality. RESULTS: Of all patient portal users who viewed diagnoses on their problem list (n = 2,660), 89% had one or more diagnoses with clarifications. In addition, 55% of patient portal users viewed the clarifications. Users who rated the clarifications (n = 108) considered the clarifications to be of good quality on average, with a median rating per patient of 6 (interquartile range: 4-7; from 1 very bad to 7 very good). Users commented that they found clarifications to be clear and recognized the clarifications from their own experience, but sometimes also found the clarifications incomplete or disagreed with the diagnosis itself. CONCLUSION: This study shows that the clarifications are used and appreciated by patient portal users. Further research and development will be dedicated to the maintenance and further quality improvement of the clarifications.

A 15-year-old girl with a large pericardial effusion.

Pericarditis is a rare manifestation of tuberculosis and can be fatal. We describe a 15-year-old girl admitted for a large pericardial effusion. Subxiphoid pericardial biopsy was performed. Biopsy samples were positive for M. tuberculosis DNA by PCR, which confirmed the diagnosis of tuberculous pericarditis.

Maturity of the adrenal cortex in very preterm infants is related to gestational age.

To study the maturity of the adrenal cortex in preterms born before 33 wk of gestation, basal levels of cortisol and cortisone and the cortisol and 17-hydroxyprogesterone (17-OHP) response to 1 microg/kg adrenocorticotropic hormone stimulation were measured in 24 appropriate-for-gestational age preterm infants (26-33 wk; 690-1985 g). Gestational age influenced the response of cortisol, 17-OHP, and the ratio between cortisol/17-OHP in the studied infants. In preterms born <30 wk of gestation, levels of cortisol, and the ratio between cortisol/17-OHP were lower compared with preterms born between 30 and 33 wk. Levels of cortisone were higher in preterms born <30 wk, suggesting a lower activity of 11 beta-hydroxysteroid dehydrogenase that may be related to maturity as well. These findings indicate that the adrenal cortex function in preterm infants is closely related to the duration of gestation and may be important in neonatal morbidity.

The corticotrophin-releasing hormone test in preterm infants.

OBJECTIVE: The developing hypothalamic--pituitary--adrenal axis (HPAA) may be immature and not yet fully functional in preterm infants. This may result in an inappropriate adrenal response to stress. Little is known about the pituitary--adrenal response to corticotrophin-releasing hormone (CRH) stimulation during the early neonatal period in preterm infants born before 32 weeks of gestation. Therefore, in a first study we investigated the pituitary--adrenal response to 1 microg/kg CRH i.v. in 13 preterm infants born less-than-or-equal 32 weeks of gestation. In addition, in a randomized placebo-controlled study we compared the pituitary--adrenal response of 1 microg/kg CRH to placebo and stimulation with 2 microg/kg CRH. RESULTS: In the first study, the level of ACTH increased from 6.9 +/-2.1 to 11.6 +/- 5.1 pmol/l (P < 0.01) and cortisol increased from 350 plus minus 115 to 582 +/- 201 nmol/l (P < 0.05). Thirty-eight percent of the studied infants showed a maximal level of ACTH < 9 pmol/l, and 15% showed a maximal level of cortisol < 360 nmol/l. In the randomized study, infants in the 1 microg/kg and in the 2 microg/kg CRH group, but not in the placebo group, showed a significant increase in cortisol and ACTH after stimulation (P < 0.01). Stimulated levels of ACTH and cortisol were significantly higher in the 2 microg/kg group compared with the placebo and the 1 microg/kg group. No differences were found for plasma ACTH and cortisol levels in the 1 microg/kg group compared with the placebo group. Basal levels of cortisol and ACTH obtained from the first and from the randomized study correlated significantly (n = 29; r = 0.42, P < 0.03). In addition, in infants stimulated with 1 microg/kg CRH a lower cortisol response correlated with a longer stay in hospital (n = 13; r = --0.57, P < 0.05). CONCLUSIONS: In this study we show that a 1 microg/kg CRH stimulation test in preterm infants results more often in an inappropriate adrenal response while stimulation with 2 microg/kg CRH gives rise to an appropriate response in all studied infants. Furthermore, stimulation with 2 microg/kg CRH results in higher levels of ACTH and cortisol compared to placebo and 1 microg/kg CRH. We conclude that in preterm infants the ability of the pituitary to respond adequately to CRH stimulation depends on the dose of CRH used and may also be dependent on the maturity of the pituitary--adrenal axis.