Purpose Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Patients and Methods Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Results Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Conclusion Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.
We explored a diverse sample of family medicine patients' use of the internet for health information. Primary objectives were to determine the extent of access to the Internet, and among those with access, the types of health information sought; how they search for that information; and how they assess the accuracy of the information. We also surveyed the physicians' perceptions of their patients' use of the Internet for health information. Of 1289 patients participating, 65% reported access to the internet; age, sex, race, education, and income were each significantly associated with internet access. A total of 74% of those with access had used the Internet to find health information for themselves or family members. Disease-specific information was most frequently sought, followed by medication information, and then information about nutrition and exercise. Patients determine website accuracy by the endorsement of the site by a government agency or a professional organization, their own perception of reliability of the website source, and the understandability of the information. Almost 90% attempted to verify the information they obtained. A majority had discussed website information with their physicians. The physicians (n ؍ 92) underestimate the proportion of their patients who used the Internet for health information. A total of 36% of physicians said at least one patient per week brought in Internet health information, and 63% said they had suggested a specific website to their patients. Physicians need critical appraisal skills to determine whether information found by a patient is relevant to that patient's condition and is based on the best available evidence. In addition, physicians directing patients to websites for health information must be confident that the site is maintained and updated by a reliable and credible source. They also estimated that 85% of online women and 75% of on-line men had searched for health information at least once in the past. As more people gain access to the internet, particularly with high-speed connections, the numbers seeking healthcare information for themselves or their family members will likely increase. A number of studies have reported that the availability of internet-based health information to nonhealth professional consumers has influenced patient knowledge and expectations regarding healthcare, as well as the patient-physician relationship. Jadad et al 5 found that over 90% of a sample of cancer-care providers (30 physicians and 37 nurses) reported that patients had brought information from the internet to them for discussion. Murray et al 6 conducted a nationally representative telephone survey of 3209 people: 31% had looked for health information on the internet in the past year; 16% had found health information relevant to themselves; and 8% had taken information to their physician. Although socio-economic factors were associated with looking for health information, it was not related to use of the information. A majority of people who took information...
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