Personal Factors Associated with Reported Benefits of Huntington Disease Family History or Genetic Testing

Aims: A family history of Huntington disease (HD) or receiving results of HD predictive genetic testing can influence individual well-being, family relationships, and social interactions in positive and negative ways. The aim of this study was to examine benefits reported by people with an HD family history or those who have undergone predictive HD testing, as well as the personal variables associated with perceived benefits. Methods: Seventy-four of 433 people completing the International Response of a Sample Population to HD risk (I-RESPOND-HD) survey reported benefits. Knowledge and understanding was perceived as the most common benefit from participants in both groups. The next most frequent perceived benefits from a family history were connecting with others and achieving life meaning and insights. The next most common perceived benefits from genetic testing were life planning and social support. The least common perceived benefit for both groups was renewed hope and optimism. Older age and spirituality were significantly associated with benefits in both groups. Conclusions: Perceptions of benefit may not be as likely until later years in people with prodromal HD. A developed sense of spirituality is identified as a personal resource associated with the perception of benefit from genetic testing for HD. Associations among spirituality, perceived benefits, and other indicators of personal and family well-being may be useful in genetic counseling and health care of people with prodromal HD

Patient Preference for Physician Discussion and Practice of Spirituality: Results From a Multicenter Patient Survey

OBJECTIVE: To determine patient preferences for addressing religion and spirituality in the medical encounter. DESIGN: Multicenter survey verbally administered by trained research assistants. Survey items included questions on demographics, health status, health care utilization, functional status, spiritual well-being, and patient preference for religious/spiritual involvement in their own medical encounters and in hypothetical medical situations. SETTING: Primary care clinics of 6 academic medical centers in 3 states (NC, Fla, Vt). PATIENTS/PARTICIPANTS: Patients 18 years of age and older who were systematically selected from the waiting rooms of their primary care physicians. MEASUREMENTS AND MAIN RESULTS: Four hundred fifty-six patients participated in the study. One third of patients wanted to be asked about their religious beliefs during a routine office visit. Two thirds felt that physicians should be aware of their religious or spiritual beliefs. Patient agreement with physician spiritual interaction increased strongly with the severity of the illness setting, with 19% patient agreement with physician prayer in a routine office visit, 29% agreement in a hospitalized setting, and 50% agreement in a near-death scenario (P < .001). Patient interest in religious or spiritual interaction decreased when the intensity of the interaction moved from a simple discussion of spiritual issues (33% agree) to physician silent prayer (28% agree) to physician prayer with a patient (19% agree; P < .001). Ten percent of patients were willing to give up time spent on medical issues in an office visit setting to discuss religious/spiritual issues with their physician. After controlling for age, gender, marital status, education, spirituality score, and health care utilization, African-American subjects were more likely to accept this time trade-off (odds ratio, 4.9; confidence interval, 2.1 to 11.7). CONCLUSION: Physicians should be aware that a substantial minority of patients desire spiritual interaction in routine office visits. When asked about specific prayer behaviors across a range of clinical scenarios, patient desire for spiritual interaction increased with increasing severity of illness setting and decreased when referring to more-intense spiritual interactions. For most patients, the routine office visit may not be the optimal setting for a physician-patient spiritual dialog