[Newborn Hearing Screening - Results of a Parental Survey in Saxony-Anhalt]. / Neugeborenen-Hörscreening ­ Ergebnisse einer Elternbefragung in Sachsen-Anhalt.

Background: In recent years quality assurance has become an essential part of today's health-care system in the wake of the modern patient-oriented quality management. With the statutory introduction of newborn hearing screening (NHS) in 2009, a quality assurance of these early detection methods has become necessary. The aim of the study was to determine patient satisfaction in relation to the NHS in Saxony-Anhalt. Patients/Methods: During the period from November 2013 to April 2014, 394 parents were retrospectively interviewed about their experiences and expectations in relation to the NHS, using a standardised questionnaire. In total, 21 child care centres and 6 paediatric primary care centres from all over Saxony-Anhalt were involved. Results: It turns out that the majority of parents are satisfied with the NHS and 97.7% are in favour of the offer of an NHS. Of the surveyed parents, 69.3% felt the information as sufficient. However, only 66.2% of parents took a closer look at the leaflet issued by the G-BA. In addition, 17.7% of respondents are dissatisfied with the professional competence of the examining staff. Conclusion: The study shows that the general attitude among parents towards newborn hearing screening was very positive. They felt reassured by it although there are some aspects still open to criticism.

Trends in Personal Belief Exemption Rates Among Alternative Private Schools: Waldorf, Montessori, and Holistic Kindergartens in California, 2000-2014.

OBJECTIVES: To evaluate trends in rates of personal belief exemptions (PBEs) to immunization requirements for private kindergartens in California that practice alternative educational methods. METHODS: We used California Department of Public Health data on kindergarten PBE rates from 2000 to 2014 to compare annual average increases in PBE rates between schools. RESULTS: Alternative schools had an average PBE rate of 8.7%, compared with 2.1% among public schools. Waldorf schools had the highest average PBE rate of 45.1%, which was 19 times higher than in public schools (incidence rate ratio = 19.1; 95% confidence interval = 16.4, 22.2). Montessori and holistic schools had the highest average annual increases in PBE rates, slightly higher than Waldorf schools (Montessori: 8.8%; holistic: 7.1%; Waldorf: 3.6%). CONCLUSIONS: Waldorf schools had exceptionally high average PBE rates, and Montessori and holistic schools had higher annual increases in PBE rates. Children in these schools may be at higher risk for spreading vaccine-preventable diseases if trends are not reversed.

Childhood scurvy: an unusual cause of refusal to walk in a child.

Scurvy, or vitamin C deficiency, is rarely presented to a rheumatology clinic. It can mimic several rheumatologic disorders. Although uncommon, it may present as pseudovasculitis or chronic arthritis. Scurvy still exists today within certain populations, particularly in patients with neurodevelopmental disabilities, psychiatric illness or unusual dietary habits.Scurvy presentation to the rheumatologist varies from aches and mild pains to excruciating bone pain or arthritis. Musculoskeletal and mucocutaneous features of scurvy are often what prompts referrals to pediatric rheumatology clinics. Unless health care providers inquire about nutritional habits and keep in mind the risk of nutritional deficiency, it will be easy to miss the diagnosis of scurvy. Rarity of occurrence as compared to other nutritional deficiencies, combined with a lack of understanding about modern-day risk factors for nutritional deficiency, frequently leads to delayed recognition of vitamin C deficiency. We report a case of scurvy in a mentally handicapped Saudi child, who presented with new onset inability to walk with diffuse swelling and pain in the left leg. Skin examination revealed extensive ecchymoses, hyperkeratosis and follicular purpura with corkscrew hairs, in addition to gingival swelling with bleeding. Clinical diagnosis of scurvy was rendered and confirmed by low serum vitamin C level. The patient did extremely well with proper nutritional support and vitamin C supplementation. It has been noticed lately that there is increased awareness about scurvy in rheumatology literature. A high index of suspicion, together with taking a thorough history and physical examination, is required for diagnosis of scurvy in patient who presents with musculoskeletal symptoms. Nutritional deficiency should also be considered by the rheumatologist formulating differential diagnosis for musculoskeletal or mucocutaneous complaints in children, particularly those at risk.

Attitudes and barriers towards participation in an acupuncture trial among breast cancer patients: a survey study.

BACKGROUND: As breast cancer patients increasingly use complementary and alternative medicine (CAM), clinical trials are needed to guide appropriate clinical use. We sought to identify socio-demographic, clinical and psychological factors related to willingness to participate (WTP) and to determine barriers to participation in an acupuncture clinical trial among breast cancer patients. METHODS: We conducted a cross-sectional survey study among post-menopausal women with stage I-III breast cancer on aromatase inhibitors at an urban academic cancer center. RESULTS: Of the 300 participants (92% response rate), 148 (49.8%) reported WTP in an acupuncture clinical trial. Higher education (p = 0.001), increased acupuncture expectancy (p < 0.001), and previous radiation therapy (p = 0.004) were significantly associated with WTP. Travel difficulty (p = 0.002), concern with experimentation (p = 0.013), and lack of interest in acupuncture (p < 0.001) were significant barriers to WTP. Barriers differed significantly by socio-demographic factors with white people more likely to endorse travel difficulty (p = 0.018) and non-white people more likely to report concern with experimentation (p = 0.024). Older patients and those with lower education were more likely to report concern with experimentation and lack of interest in acupuncture (p < 0.05). CONCLUSIONS: Although nearly half of the respondents reported WTP, significant barriers to participation exist and differ among subgroups. Research addressing these barriers is needed to ensure effective accrual and improve the representation of individuals from diverse backgrounds.

Striking a balance: conscientious objection and reproductive health care from the Colombian perspective.

Conscientious Objection or conscientious refusal (CO) in access to reproductive health care is at the center of current legal debates worldwide. In countries such as the US and the UK, constitutional dilemmas surrounding CO in the context of reproductive health services reveal inadequate policy frameworks for balancing CO rights with women's rights to access contraception and abortion. The Colombian Constitutional Court's holistic jurisprudence regarding CO standards has applied international human rights norms so as to not only protect women's reproductive rights as fundamental rights, but to also introduce clear limits for the exercise of CO in health care settings. This paper reviews Latin American lines of regulation in Argentina, Uruguay, and Mexico City to argue that the Colombian Court's jurisprudence offers a strong guidance for future comprehensive policy approaches that aim to effectively balance tensions between CO and women's reproductive rights.

Addressing the anti-vaccination movement and the role of HCWs.

Over the last two decades, growing numbers of parents in the industrialized world are choosing not to have their children vaccinated. Trying to explain why this is occurring, public health commentators refer to the activities of an anti-vaccination movement. The aim of this paper is to review the literature about the anti-vaccination movements and to highlight the knowledge and the skills needed for HCWs to fight against their ideas. The main theoretical structures of anti-vaccination ideology in the 19th and 20th centuries are: vaccines cause idiopathic illness; opponents against vaccines accused vaccine partisans to be afraid of the "search after truth," they fear unveiling errors; the vaccination law not only insults every subject of the realm, but also it insults every human being; vaccine immunity is temporary; an alternative healthy lifestyle, personal hygiene and diet stop diseases. Proponents against vaccination now have additional means to communicate their positions to the general public, the Internet in particular. Doctors and HCWs constantly have to face parents and patients who search information about vaccination. A lot of these people have previously found data about vaccinations from a lot of sources, such as papers, media or in websites and in these sources most contents come from anti-vaccine movements. For these reasons doctors and HCWs need to have updated knowledge about the vaccinations and to know the contents proposed by vaccine sceptics. Educating the general public cannot be fully effective unless there is a corresponding provision, enthusiasm and commitment by trained HCWs.

Limited health literacy is a barrier to colorectal cancer screening in England: evidence from the English Longitudinal Study of Ageing.

OBJECTIVE: To determine the association between health literacy and participation in publicly available colorectal cancer (CRC) screening in England using data from the English Longitudinal Study of Ageing (ELSA). METHODS: ELSA is a population-based study of English adults aged ≥ 50 years. Health literacy, participation in the national CRC screening programme, and covariates were interview-assessed in 2010-11. All those age-eligible for screening from 2006 to 11 were included in the present analysis (n=3087). The association between health literacy and screening was estimated using multivariable-adjusted logistic regression. RESULTS: 73% of participants had adequate health literacy skills. Screening uptake was 58% among those with adequate and 48% among those with limited health literacy skills. Having adequate health literacy was associated with greater odds of CRC screening (multivariable adjusted OR=1.20; 95% CI: 1.00-1.44), independent of other predictors of screening: age (OR=0.92; 95% CI: 0.91-0.94 per one year increase), female sex (OR=1.31; 95% CI: 1.11-1.54), and being in a higher wealth quintile (OR=1.88; 95% CI: 1.43-2.49). CONCLUSIONS: Limited health literacy is a barrier to participation in England's national, publicly available CRC screening programme. Interventions should include appropriate design of information materials, provision of alternative support, and increased one-on-one interaction with health care professionals.

Use of a precious resource: parental decision making about using autologous umbilical cord blood in studies involving young children with type 1 diabetes.

OBJECTIVE: To assess parental decision making and experiences in an autologous umbilical cord blood infusion study in young children with type 1 diabetes (T1D). METHODS: Surveys were completed with 22 parents of children with T1D who received infusion and 22 parents who declined infusion. RESULTS: Parents who stored umbilical cord blood were middle-aged, highly-educated, Caucasian, married, and privately insured. Parents of children who did not receive infusion declined because they did not want to deplete their cord blood supply. Parents of children who decided to have their children participate in the infusion study were similar on approaches to storing cord blood and attitudes about research as compared to parents who declined to have their children participate in the infusion. Parents of children who received infusion were positive about their experiences and held expectations that infusion would lead to a T1D cure. CONCLUSIONS: The manner in which cord blood is stored needs to be considered so that participation in future studies does not risk depletion of the cord blood supply. In addition, it appears that the process of storing umbilical cord blood leads to restricted demographic characteristics of eligible participants, which may impact recruitment in clinical trials. These results are relevant to designing future cord blood studies in T1D and other non-malignant diseases.

Low acceptance of treatment in the elderly for the secondary prevention of osteoporotic fracture in the acute rehabilitation setting.

BACKGROUND AND AIMS: Given the high risk of subsequent fracture among elderly persons with fracture, it is important to initiate secondary treatment for osteoporosis. Acute rehabilitation centers may offer a unique opportunity to introduce treatment. Therefore, we evaluated willingness-to-participate and compliance with evidence-based interventions for the secondary prevention of osteoporotic fracture in a non-randomized study conducted in the acute rehabilitation setting. We also described differences in baseline characteristics between study participants and non-participants. METHODS: All consecutive, community dwelling admissions to an acute rehabilitation unit (Boston, MA) with the diagnosis of fracture were screened for enrollment. Eligible subjects were offered a free, 6-month supply of alendronate/cholecalciferol (70 mg/2800 IU weekly), calcium and vitamin D supplements, and fall prevention strategies. Six-month compliance (> or =75% consumption of medication or supplement) with the interventions was determined at a home visit. RESULTS: Among 62 eligible subjects, 25 agreed to participate. Non-participants were older than participants (86 vs 80 yrs, p<0.01). There was no significant difference between other characteristics of participants and non-participants including sex, weight, type of fracture, cognitive status, and functional status. The most common reason for non-participation was reluctance to take another medication. Among participants, only 52% were compliant with alendronate and 58% were compliant with calcium and vitamin D supplementation at 6 months. CONCLUSIONS: Willingness- to-participate and compliance with secondary prevention strategies for osteoporosis was low in the acute rehabilitation setting, even when medications were provided free of cost. Educating individuals with fracture and their families on the consequences and treatment of osteoporosis may help to decrease the risk of sustaining a second fracture by accepting secondary preventive measures.

Barriers to use of Antiretroviral Drugs in Rakai District of Uganda

Background: About 75of people living with HIV/AIDS (PHAs) who need antiretroviral therapy have no access to these drugs in low-income countries. Objective: To investigate the barriers to use of ART in Rakai district of Uganda Methods: We interviewed 38 key informants and 384 PHAs. Data was collected on: education/mobilization for ART; sources of information for ART; beliefs regarding ART; social support; use of alternative medicine; stigma/discrimination towards PHAs; distance to ART centres; transport costs to ART centres; waiting time; and on suggestions as how to improve the use of ART. Results: The major barriers mentioned regarding use of ART included: inadequate mobilization; long waiting time at ART treatment centres; high cost of transport to reach ART centres; stigma/discrimination towards PHAs and inadequate number of health workers to attend to PHAs. Conclusions: Access to antiretroviral therapy could be ameliorated by: improving community education using innovative approaches such as through music; dance and videos; increasing the number of providers who are able to provide ART as through engagement of non health professionals in ART care; bringing ART nearer to where people live and instituting measures aimed at reducing stigma/discrimination such as through involvement of PHAs in demystisfying HIV/AIDS

Healthcare avoidance: a critical review.

The purpose of this study is to provide a critical review and synthesis of theoretical and research literature documenting the impact of avoidance on healthcare behaviors, identify the factors that influence healthcare avoidance and delay in the adult population, and propose a direction for future research. The Theory of Reasoned Action, Theory of Planned Behavior, Theory of Care-Seeking Behavior, the Transtheoretical Model, and the Behavioral Model of Health Services Use/Utilization are utilized to elaborate on the context within which individual intention to engage in healthcare behaviors occurs. Research literature on the concept of healthcare avoidance obtained by using computerized searches of CINAHL, MEDLINE, PSYCH INFO, and HAPI databases, from 1995 to 2007, were reviewed. Studies were organized by professional disciplines. Healthcare avoidance is a common and highly variable experience. Multiple administrative, demographic, personal, and provider factors are related to healthcare avoidance, for example, distrust of providers and/or the science community, health beliefs, insurance status, or socioeconomic/income level. Although the concept is recognized by multiple disciplines, limited research studies address its impact on healthcare decision making. More systematic research is needed to determine correlates of healthcare avoidance. Such studies will help investigators identify patients at risk for avoidant behaviors and provide the basis for health-promoting interventions. Methodological challenges include identification of characteristics of individuals and environments that hinder healthcare behaviors, as well as, the complexity of measuring healthcare avoidance. Studies need to systematically explore the influence of avoidance behaviors on specific healthcare populations at risk.

Long-term outcomes of patients with localized rectal cancer treated with chemoradiation or radiotherapy alone because of medical inoperability or patient refusal.

PURPOSE: The standard management of rectal cancer continues to be defined by the results of randomized, clinical trials exploring the optimal timing and use of adjuvant chemotherapy and radiation therapy in relation to surgery. The patient with rectal cancer who is elderly and/or has significant comorbidities and the patient who refuses surgery are clinical contexts for which there is limited current data to guide decision making. METHODS: A retrospective analysis was performed at six Australian centers of patients with rectal cancer treated with radiation therapy or chemoradiation alone because of excessive operative risk or patient refusal of surgery. RESULTS: We identified 48 patients treated between August 1998 and June 2005 with a median age of 76 (range, 49-94) years. Twenty-four patients (50 percent) were considered medically inoperable and 24 patients refused surgery. Treatment was with chemoradiation (with 5-fluorouracil) in 36 patients and radiotherapy alone in 12 patients; 93 percent completed the planned therapy. A clinical complete response was seen in 56 percent and a partial response in 30 percent of patients. At a median follow-up of 49 months, 18 patients have disease progression, including 10 of 24 in the medically inoperable group and 8 of 24 in the refused surgery group. Of the 25 deceased patients, 16 died from progressive disease and 9 from noncancer causes. CONCLUSIONS: Chemoradiation or radiotherapy alone is a safe alternative that results in significant progression-free and overall survival times in patients who are considered medically inoperable or refuse to undergo surgery. Ultimately, however, many patients will progress.

Routine HIV testing in Botswana: a population-based study on attitudes, practices, and human rights concerns.

BACKGROUND: The Botswana government recently implemented a policy of routine or "opt-out" HIV testing in response to the high prevalence of HIV infection, estimated at 37% of adults. METHODS AND FINDINGS: We conducted a cross-sectional, population-based study of 1,268 adults from five districts in Botswana to assess knowledge of and attitudes toward routine testing, correlates of HIV testing, and barriers and facilitators to testing, 11 months after the introduction of this policy. Most participants (81%) reported being extremely or very much in favor of routine testing. The majority believed that this policy would decrease barriers to testing (89%), HIV-related stigma (60%), and violence toward women (55%), and would increase access to antiretroviral treatment (93%). At the same time, 43% of participants believed that routine testing would lead people to avoid going to the doctor for fear of testing, and 14% believed that this policy could increase gender-based violence related to testing. The prevalence of self-reported HIV testing was 48%. Adjusted correlates of testing included female gender (AOR = 1.5, 95% CI = 1.1-1.9), higher education (AOR = 2.0, 95% CI = 1.5-2.7), more frequent healthcare visits (AOR = 1.9, 95% CI = 1.3-2.7), perceived access to HIV testing (AOR = 1.6, 95% CI = 1.1-2.5), and inconsistent condom use (AOR = 1.6, 95% CI = 1.2-2.1). Individuals with stigmatizing attitudes toward people living with HIV and AIDS were less likely to have been tested for HIV/AIDS (AOR = 0.7, 95% CI = 0.5-0.9) or to have heard of routine testing (AOR = 0.59, 95% CI = 0.45-0.76). While experiences with voluntary and routine testing overall were positive, 68% felt that they could not refuse the HIV test. Key barriers to testing included fear of learning one's status (49%), lack of perceived HIV risk (43%), and fear of having to change sexual practices with a positive HIV test (33%). CONCLUSIONS: Routine testing appears to be widely supported and may reduce barriers to testing in Botswana. As routine testing is adopted elsewhere, measures should be implemented to assure true informed consent and human rights safeguards, including protection from HIV-related discrimination and protection of women against partner violence related to testing.

Medical students' perceptions of medical education research and their roles as participants.

PURPOSE: To better understand whether medical students perceive medical education research as important to their medical training and whether published opinions about why medical students participate in research are accurate. METHOD: In 2003-04, 896 first- through fourth-year medical students at Kansas City University of Medicine and Biosciences College of Osteopathic Medicine were asked to complete an online eight-item questionnaire by responding Yes or No to each question. Responses were tallied by year of medical training and converted into numbers and percentages. Chi-square analysis was used to compare response rates among first- through fourth-year students and responses between preclinical and clinical students. RESULTS: A total of 524 students (58.5%) completed the questionnaire. A total of 488 (93%) medical students believed medical education research should be conducted to improve their medical training, 477 (91%) did not feel coerced to participate in studies because of faculty members' positions of authority, and 398 (76%) did not believe they would receive better grades, recommendations, and/or other favors. Four hundred sixty-eight (89%) students were not concerned with their confidentiality as study participants, while 326 (62%) wanted special protections. Response rates by year of medical school were not significantly different (p > .05). Responses of preclinical and clinical students for six of the eight questions were significantly different (p < .05). CONCLUSIONS: Medical school decisionmakers should recognize that students value medical education research. Published opinions about why medical students participate in studies are incongruent with medical students' views. Full review of medical education studies by Institutional Review Boards may be unnecessary and inappropriate.

Patient and physician attitudes toward breast cancer clinical trials: developing interventions based on understanding barriers.

PURPOSE: Clinical trials are essential to develop and test novel therapies, yet only 2%-3% of women with breast cancer enroll. We sought to describe patient and physician barriers to trial participation and then implemented targeted interventions to increase awareness and interest in trial participation. Also, with increasing patient interest in complementary and alternative medicine (CAM) for cancer, we explored attitudes regarding CAM clinical trials. PATIENTS AND METHODS: Between 1997 and 2000, questionnaires were offered to patients with newly diagnosed or recurrent breast cancer and to physicians specializing in breast cancer. Programs aimed at patients and physicians from our geographic region to increase their support for breast cancer clinical trials were initiated in 1997. Correlation between perceived barriers and patient and physician demographics were explored. Reluctance to be randomized, extra time, and concerns about worse side effects with the experimental arm were the most significant patient barriers. Physician barriers included randomization, extra staff time, and increased costs of enrollment. Patients and physicians approved of studying CAM in clinical trials, with different scores based on age and type of practice. Physicians and patients developed more favorable views of clinical trials between 1997 and 2000. RESULTS: Although many barriers still exist, this study suggests that attitudes toward clinical trials are evolving and significantly affected by patient age and stage of disease. Because different patients and some different physicians were surveyed, it is difficult to conclude that the changes occurred as a result of the interventions. CONCLUSION: Future efforts to improve enrollment should focus on patients' individual concerns and the uneasiness with the randomization.

Factors associated with refusal of childhood vaccines among parents of school-aged children: a case-control study.

BACKGROUND: The rate of nonmedical exemptions to school immunization requirements has been increasing, and children with exemptions have contributed to outbreaks of vaccine-preventable diseases. OBJECTIVES: To determine why parents claim nonmedical exemptions and to explore differences in perceptions of vaccines and vaccine information sources between parents of exempt and fully vaccinated children. DESIGN: Case-control study. SETTING: Colorado, Massachusetts, Missouri, and Washington. PARTICIPANTS: Surveys were mailed to the parents of 815 exempt children (cases) and 1630 fully vaccinated children (controls randomly selected from the same grade and school) recruited from 112 private and public elementary schools. Surveys were completed by 2435 parents (56.1%). MAIN OUTCOME MEASURES: Parental reports. RESULTS: Most children (209 [75.5%] of 277) with nonmedical exemptions received at least some vaccines. The most common vaccine not received was varicella (147 [53.1%] of 277 exempt children). The most common reason stated for requesting exemptions (190 [69%] of 277) was concern that the vaccines might cause harm. Parents of exempt children were significantly more likely than parents of vaccinated children to report low perceived vaccine safety and efficacy, a low level of trust in the government, and low perceived susceptibility to and severity of vaccine-preventable diseases. Parents of exempt children were significantly less likely to report confidence in medical, public health, and government sources for vaccine information and were more likely to report confidence in alternative medicine professionals than parents of vaccinated children. CONCLUSION: Continued efforts must be made to educate parents about the utility and safety of vaccines, especially parents requesting nonmedical exemptions to school immunization requirements.