Background Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. Objective The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. Methods A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. Results Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. Conclusions In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.
BACKGROUND: Sharing outpatient notes with patients may bring clinically important benefits, but notes may sometimes cause patients to feel judged or offended, and thereby reduce trust. OBJECTIVE: As part of a larger survey examining the effects of open notes, we sought to understand how many patients feel judged or offended due to something they read in outpatient notes, and why. DESIGN: We analyzed responses from a large Internet survey of adult patients who used secure patient portals and had at least 1 visit note available in a 12-month period at 2 large academic medical systems in Boston and Seattle, and in a rural integrated health system in Pennsylvania. PARTICIPANTS: Adult ambulatory patients with portal accounts in health systems that offered open notes for up to 7 years. APPROACH: (1) Quantitative analysis of 2 dichotomous questions, and (2) qualitative thematic analysis of freetext responses on what patients found judgmental or offensive. KEY RESULTS: Among 22,959 patient respondents who had read at least one note and answered the 2 questions, 2,411 (10.5%) reported feeling judged and/or offended by something they read in their note(s). Patients who reported poor health, unemployment, or inability to work were more likely to feel judged or offended. Among the 2,411 patients who felt judged and/or offended, 2,137 (84.5%) wrote about what prompted their feelings. Three thematic domains emerged: (1) errors and surprises, (2) labeling, and (3) disrespect. CONCLUSIONS: One in 10 respondents reported feeling judged/offended by something they read in an outpatient note due to the perception that it contained errors, surprises, labeling, or evidence of disrespect. The content and tone may be particularly important to patients in poor health. Enhanced clinician awareness of the patient perspective may promote an improved medical lexicon, reduce the transmission of bias to other clinicians, and reinforce healing relationships.
Objective: This study examined the relationship between caregivers' and youths' treatment expectations and characteristics of exposure tasks (quantity, mastery, compliance) in cognitivebehavioral therapy (CBT) for childhood anxiety. Additionally, compliance with exposure tasks was tested as a mediator of the relationship between treatment expectations and symptom improvement.Method: Data were from youth (N= 279; 7-17 years old) enrolled in the Child/Adolescent Anxiety Multimodal Study (CAMS) and randomized to cognitive-behavioral therapy (CBT) or the combination of CBT and sertraline for the treatment of separation anxiety disorder, generalized anxiety disorder, and social phobia. Caregivers and youth independently reported treatment expectations prior to randomization, anxiety was assessed at pre-and post-treatment by independent evaluators blind to treatment condition, and exposure characteristics were recorded by the cognitive-behavioral therapists following each session.Results: For both caregivers and youths, more positive expectations that anxiety would improve with treatment were associated with greater compliance with exposure tasks, and compliance mediated the relationship between treatment expectations and change in anxiety symptoms Terms of use and reuse: academic research for non-commercial purposes, see here for full terms. http://www.springer.com/gb/openaccess/authors-rights/aam-terms-v1
The study objective was to perform a confirmatory factor analysis of the SLEEP-50 Questionnaire (SLEEP-50) in Trichotillomania (Hair-Pulling Disorder) and Excoriation (Skin-Picking) Disorder and compare sleep complaints in adults with Trichotillomania, Excoriation Disorder and nonaffected controls. Participants were 234 adults with Trichotillomania, 170 with Excoriation Disorder, and 146 non-affected controls. Participants rated sleep using the SLEEP-50 and Pittsburgh Sleep Quality Index (PSQI). Confirmatory factor analysis was used to assess fit of the originally-proposed SLEEP-50 factors within Trichotillomania and Excoriation Disorder. Findings revealed acceptable to good fit of the original factors. Internal consistency was excellent in Trichotillomania and good in Excoriation Disorder for the total score and poor to good for subscales. Convergent validity was strong for the total and weak to strong for subscales in both groups. Findings suggest greater sleep complaints in Trichotillomania and Excoriation Disorder than in the general population. Trichotillomania and Excoriation Disorder groups reported greater rates of sleep apnea, narcolepsy, restless leg syndrome/periodic limb movement disorder, circadian rhythms sleep disorder, and sleep-related affective disorder relative to controls. There were no significant differences for insomnia, sleep state misperception, sleepwalking, nightmares, or hypersomnia. Results underscore the importance of clinical assessment of sleep disorders in Trichotillomania and Excoriation Disorder.
Horses currently play a leading role in many leisure events worldwide. However, their involvement in leisure activities raises various ethical questions. Based on a posthumanist approach, this study sought to explore the use and treatment of horses in a leisure event in Mexico. A participant observation method was adopted to conduct the research, revealing that horses become quite instrumental and commodified for humans, fulfilling intersecting entertainment, economic and cultural purposes. These results thus provide evidence of the prevailing anthropocentric and speciesist nature of horse-human interactions in leisure events. The findings include that, when horsehuman relations become highly commercialised and are institutionally recognised as cultural heritage, a complete embracement of posthumanism is needed to dissolve basic horse-human dichotomies, but this remains a utopian ideal in tourism and leisure practices.
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