The provision of patient-centered care requires a health care environment that fosters engagement between patients and their health care team. One way to encourage patient-centered care is to incorporate patient-reported outcomes into clinical settings. Collecting these outcomes in routine care ensures that important information only the patient can provide is captured. This provides insights into patients' experiences of symptoms, quality of life, and functioning; values and preferences; and goals for health care. Previously embraced in the research realm, patient-reported outcomes have started to play a role in successful shared decision making, which can enhance the safe and effective delivery of health care. We examine the opportunities for using patient-reported outcomes to enhance care delivery and outcomes as health care information needs and technology platforms change. We highlight emerging practices in which patient-reported outcomes provide value to patients and clinicians and improve care delivery. Finally, we examine present and future challenges to maximizing the use of patient-reported outcomes in the clinic.
Infection caused by Cryptosporidium species has proved to be one of the most taxing and frustrating conditions faced by clinicians caring for patients with AIDS. Unfortunately, this unique organism, which was identified as a human pathogen only shortly before the AIDS epidemic began to manifest itself, has received only minimal attention during the past decade. Dr. Carolyn Petersen, an assistant professor of medicine at the University of California, San Francisco, and a member of the Division of Infectious Diseases at San Francisco General Hospital, is a molecular parasitologist whose investigative career is focused on elucidating the biology of Cryptosporidium species. In this AIDS Commentary Dr. Petersen provides an update on recent developments in this field.
The authors reviewed the medical records of 194 human immunodeficiency virus (HIV)-positive patients newly diagnosed with cryptosporidiosis and all 3,564 patients with newly diagnosed acquired immunodeficiency syndrome (AIDS) at San Francisco General Hospital for the period 1986-1992. The study was designed to address three questions: 1) How do AIDS patients who present with cryptosporidiosis differ from other patients with AIDS? 2) What factors are associated with survival among AIDS patients with newly diagnosed cryptosporidiosis? 3) Does a diagnosis of cryptosporidiosis impact survival after AIDS diagnosis? A total of 194 cases of cryptosporidiosis among HIV-infected patients were identified during the study period. Of the 194 patients, 109 (56%) had no prior diagnosis of AIDS. These 109 patients represented 3.1% of the 3,564 newly diagnosed cases of AIDS in the same period. Among the 134 patients with CD4 T-lymphocyte counts performed within 3 months of Cryptosporidium diagnosis, 34 (25%) had CD4 counts greater than 209 cells/ml. In a multivariate conditional logistic regression model, the incidence of Cryptosporidium was related to ethnicity (for blacks vs. whites, matched odds ratio (OR) = 0.15, 95% confidence interval (CI) 0.03-0.73), CD4 count (for a CD4 count of < or = 53 cells/ml vs. > 53 cells/ml, matched OR = 12.60, 95% CI 4.01-39.61), and age (for a 10-year increase, matched OR = 0.51, 95% CI 0.27-0.98). Two factors measured at the time of Cryptosporidium diagnosis were identified as being independently associated with survival (p < 0.001) in the proportional hazards model: CD4 count < or = 53 cells/ml versus > 53 cells/ml (relative hazard = 6.18, 95% CI 2.99-12.76) and hematocrit < or 37% versus > 37% (relative hazard = 2.27, 95% CI 1.22-4.22). The median durations of survival in the four subgroups of Cryptosporidium-infected patients defined by these two variables differed significantly from each other (range, 204-1,119 days). Cryptosporidiosis as an initial AIDS-defining diagnosis was associated with an elevated relative hazard of death in comparison with other AIDS-defining diagnoses (relative hazard = 2.01, 95% CI 1.38-2.93). These data identify the groups of HIV-infected individuals at risk for presentation with symptomatic Cryptosporidium infection; the distinct survival patterns among subgroups of those patients already infected with this parasite; and the survival of AIDS patients with newly diagnosed cryptosporidiosis relative to patients with other AIDS-defining conditions. Such information is necessary for the design of prospective studies, the development of prophylactic strategies, the evaluation of candidate therapies, and the provision of prognostic information to patients.
We report the identification of the product of the Plasmodium falciparum Pf11‐1 gene and demonstrate that it is a gametocyte‐specific protein that has a potential role in the rupture of the host erythrocyte and emergence of the gametes (gametogenesis). The Pf11‐1 gene is a large locus (30 kb) whose sequence predicts a glutamic acid‐rich polypeptide. Our identification of the Pf11‐1 gene product as gametocyte specific was greatly facilitated by the isolation of a mutant parasite clone in which greater than 90% of the Pf11‐1 gene was deleted. Molecular analysis of the mutant locus suggests that the underlying genetic mechanism is chromosome breakage and subsequent healing by the addition of telomere repeats. PCR‐based analysis showed that similar DNA rearrangements occur commonly in small subpopulations of most laboratory strains, suggesting that the Pf11‐1 locus represents a fragile chromosome region. Northern blot analysis demonstrates that a large Pf11‐1 gene‐specific transcript (much greater than 10 kb) is present in gametocytes but not in asexual blood stage parasites. The Pf11‐1 protein was localized by electron microscopy to granules in the cytoplasm of gametocytes adjacent to the membrane of the parasitophorous vacuole. Following in vitro stimulation of gametogenesis, the Pf11‐1 protein was found in the membrane of lysed erythrocytes, suggesting a role for Pf11‐1 in erythrocyte rupture within the mosquito gut.
Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.
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