Publications

BACKGROUND

In those with symptoms indicative of obstructive sleep apnea (OSA), respiratory-specific health-related quality of life (HRQL) may be an important patient-centered outcome. The aim of this study was to assess the associations between sleepiness, fatigue, and impaired general and respiratory-specific HRQL among persons with suspected OSA.

METHODS

We evaluated military veterans consecutively referred for suspected OSA with sleep studies yielding apnea-hypopnea index (AHI) values. They also completed the sleepiness (Epworth Sleepiness Scale [ESS]), and fatigue (Fatigue Severity Scale [FSS]) questionnaires, as well as two HRQL instruments (the generic Short-Form SF-12v2 yielding the Physical Component Scale [PCS] and the respiratory-specific Airways Questionnaire [AQ]-20R). Multiple linear regression tested the associations between ESS and FSS (standardized as Z scores for scaling comparability) with AQ-20R, accounting for AHI, SF-12v2-PCS and comorbid respiratory conditions other than OSA.

RESULTS

We studied 1578 veterans (median age 61.1 [IQR 16.8] years; 93.9% males). Of these, 823 (52%) met AHI criteria for moderate to severe OSA (AHI ≥15/h). The majority reported excessive daytime sleepiness (53%; median ESS 11 [IQR 9]) or fatigue (61%; median FSS 42 [IQR 23]). The median AQ-20R was 4 [IQR 1-8]. Controlling for AHI, SF-12v2-PCS, respiratory co-morbid conditions, body mass index, and demographics, both ESS and FSS were significantly associated with poorer AQ-20R: for each; ESS, 1.6 points (95% CI 1.4-1.9), and for FSS, 2.5 points (95% CI, 2.3-2.7).

CONCLUSIONS

Greater daytime sleepiness and fatigue are associated with poorer respiratory-specific HRQL, over and above the effects of OSA, respiratory comorbidity, and generic physical HRQL.

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine GC-patient communication in real time, to assess its effectiveness from the patient perspective, and then to pilot intervention strategies to improve the communication. We observed 64 English-, 35 Spanish- and 25 Chinese-speaking (n = 124) public hospital patients and 10 GCs in 170 GC appointments, and interviewed 49 patients who were offered testing using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory methods and revealed a fundamental mismatch between the information provided by GCs and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. Our findings indicate a need to transform the standard model of genetic counseling communication using evidence-based principles and strategies from other fields of Medicine. The high rates of limited health literacy in the US, increasing access of diverse populations to genetic services, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence is likely to exacerbate health disparities in the genomic age.