Prospective Participants Research Articles

Activity-Based Therapy for Recovery of Walking in Chronic Spinal Cord Injury: Results From a Secondary Analysis to Determine Responsiveness to Therapy

ObjectiveTo gain insight into who is likely to benefit from activity-based therapy (ABT), as assessed by secondary analysis of data obtained from a clinical trial. DesignSecondary analysis of results from a randomized controlled trial with delayed treatment design. SettingOutpatient program in a private, nonprofit rehabilitation hospital. ParticipantsVolunteer sample of adults (N=38; 27 men; 11 women; age, 22–63y) with chronic (≥12mo postinjury), motor-incomplete (American Spinal Injury Association [ASIA] Impairment Scale [AIS] grade C or D) spinal cord injury (SCI). InterventionsA total of 9h/wk of ABT for 24 weeks including developmental sequencing; resistance training; repetitive, patterned motor activity; and task-specific locomotor training. Algorithms were used to guide group allocation, functional electrical stimulation utilization, and locomotor training progression. Main Outcome MeasuresWalking speed and endurance (10-meter walk test and 6-minute walk test) and functional ambulation (timed Up and Go test). ResultsThis secondary analysis identified likely responders to ABT on the basis of injury characteristics: AIS classification, time since injury, and initial walking ability. Training effects were the most clinically significant in AIS grade D participants with injuries <3 years in duration. This information, along with information about preliminary responsiveness to therapy (gains after 12wk), can help predict the degree of recovery likely from participation in an ABT program. ConclusionsABT has the potential to promote neurologic recovery and enhance walking ability in individuals with chronic, motor-incomplete SCI. However, not everyone with goals of walking recovery will benefit. Individuals with SCI should be advised of the time, effort, and resources required to undertake ABT. Practitioners are encouraged to use the findings from this trial to assist prospective participants in establishing realistic expectations for recovery.

The Impact of Living With Severe Lower Extremity Lymphedema

Debilitating lower extremity lymphedema can be either congenital or acquired. Utility scores are an objective measure used in medicine to quantify degrees of impact on an individual's life. Using standardized utility outcome measures, we aimed to quantify the health state of living with severe unilateral lower extremity lymphedema. A utility outcomes assessment using visual analog scale, time trade-off, and standard gamble was used for lower extremity lymphedema, monocular blindness, and binocular blindness from a sample of the general population and medical students. Average utility scores were compared using a paired t test. Linear regression was performed using age, race, and education as independent predictors. A total of 144 prospective participants were included. All measures [visual analog scale, time trade-off, and standard gamble; expressed as mean (SD)] for unilateral lower extremity lymphedema (0.50 ± 0.18, 0.76 ± 0.22, and 0.76 ± 0.21, respectively) were significantly different (P < 0.001) from the corresponding scores for monocular blindness (0.64 ± 0.18, 0.84 ± 0.16, and 0.83 ± 0.17, respectively) and binocular blindness (0.35 ± 0.17, 0.61 ± 0.28, and 0.62 ± 0.26, respectively). We found that a sample of the general population and medical students, if faced with severe lymphedema, is willing to theoretically trade 8.64 life-years and undergo a procedure with a 24% risk of mortality to restore limb appearance and function to normal. These findings provide a frame of reference regarding the meaning of a diagnosis of severe lower extremity lymphedema to a patient and will allow objective comparison with other health states.

More prizes are not always more attractive: factors increasing prospective sweepstakes participants’ sensitivity to the number of prizes

Sweepstakes that offer more identical prizes do not necessarily attract more participants. When deciding whether to participate in a sweepstakes presented in isolation (typical case), most consumers cannot evaluate if the number of prizes offered is “good” or “bad” within a certain range (1–10 prizes), because of the low evaluability of this attribute. Therefore, they do not perceive their odds of winning as better with more prizes, nor are they more likely to participate. Five studies detail this process and illustrate which individual and contextual factors (participation frequency in sweepstakes, availability of information about the usual number of prizes for comparable sweepstakes, visual reinforcement of the number of prizes by a consistent number of pictures) increase the evaluability of the number of prizes, which can reduce magnitude insensitivity. This study in turn provides managerial insights into how to design and advertise efficient sweepstakes.

The Missing Link in the Diffusion of Protest: Asking Others

Mobilization for protest is a process of diffusion in interpersonal networks. Extant work has found that being asked by people one knows is a key determinant of participation, but the flip side--asking others--has been neglected. The authors examine which prospective participants are most likely to ask others to participate and whom they ask. Drawing on a new and unusual data set including evidence on more than 7,000 participants in 48 demonstrations across Europe, the authors find that activists who are committed to the demonstration's cause (willing to recruit others) and who are part of participation-friendly networks (able to recruit others) are the most active recruiters. Asking others is dependent on being asked: participants tend to recruit people similar to those who have recruited them and, most importantly, participants who are recruited via strong ties are less active recruiters themselves.

Social Networking and Online Recruiting for HIV Research: Ethical Challenges

Social networking sites and online advertising organizations provide HIV/AIDS researchers access to target populations, often reaching difficult-to-reach populations. However, this benefit to researchers raises many issues for the protections of prospective research participants. Traditional recruitment procedures have involved straightforward transactions between the researchers and prospective participants; online recruitment is a more complex and indirect form of communication involving many parties engaged in the collecting, aggregating, and storing of research participant data. Thus, increased access to online data has challenged the adequacy of current and established procedures for participants' protections, such as informed consent and privacy/confidentiality. Internet-based HIV/AIDS research recruitment and its ethical challenges are described, and research participant safeguards and best practices are outlined.

Longitudinal study of spherical refractive error in infantile nystagmus syndrome

To explore the onset and progression of spherical refractive error in a population with infantile nystagmus syndrome. Retrospective refractive error data were obtained from 147 medical records of children with infantile nystagmus syndrome (albinism n=98; idiopathic infantile nystagmus n=49), attending a low vision clinic in Northern Ireland, over a 24year period (1986-2010). Data were categorised by age to allow for comparisons with published studies. A prospective group of participants with Infantile nystagmus syndrome (INS) [n=22 (albinism n=18, idiopathic infantile nystagmus n=4)] (aged 0-4) were also recruited. Cycloplegic streak retinoscopy was performed biannually, over a 3year period. Spherical equivalent refractive error and most ametropic meridian were analysed. The mean spherical equivalent refractive errors for albinism and idiopathic infantile nystagmus groups (across all age categories) were hypermetropic, with highest levels demonstrated by the participants with albinism aged 1≤4years (Mann-Whitney U test, p=0.013). Mean most ametropic meridian was highest in the albinism group aged 1≤12years (Mann-Whitney U test, p<0.05). Individual data demonstrated relatively static spherical equivalent refractive errors over time. Prospective participants were hypermetropic at all visits and those with albinism had, on average, higher refractive errors than those with idiopathic infantile nystagmus (IIN). No significant correlations were noted between visual acuity and spherical equivalent refractive errors or most ametropic meridian. Hypermetropia is the most prevalent spherical refractive error in the INS population, irrespective of level of visual acuity. Individuals with infantile nystagmus syndrome fail to demonstrate typical patterns of emmetropisation, particularly in the presence of albinism.

Effect of numbering of return envelopes on participation, explicit refusals, and bias: experiment and meta-analysis

BackgroundTracing mail survey responses is useful for the management of reminders but may cause concerns about anonymity among prospective participants. We examined the impact of numbering return envelopes on the participation and the results of a survey on a sensitive topic among hospital staff.MethodsIn a survey about regrets associated with providing healthcare conducted among hospital-based doctors and nurses, two randomly drawn subsamples were provided numbered (N = 1100) and non-numbered (N = 500) envelopes for the return of completed questionnaires. Participation, explicit refusals, and item responses were compared. We also conducted a meta-analysis of the effect of questionnaire/envelope numbering on participation in health surveys.ResultsThe participation rate was lower in the “numbered” group than in the “non-numbered” group (30.3% vs. 35.0%, p = 0.073), the proportion of explicit refusals was higher in the “numbered” group (23.1% vs 17.5%, p = 0.016), and the proportion of those who never returned the questionnaire was similar (46.6% vs 47.5%, p = 0.78). The means of responses differed significantly for 12 of 105 items (11.4%), which did not differ significantly from the expected frequency of type 1 errors, i.e., 5% (permutation test, p = 0.078). The meta-analysis of 7 experimental surveys (including this one) indicated that numbering is associated with a 2.4% decrease in the survey response rate (95% confidence interval 0.3% to 4.4%).ConclusionsNumbered return envelopes may reduce the response rate and increase explicit refusals to participate in a sensitive survey. Reduced participation was confirmed by a meta-analysis of randomized health surveys. There was no strong evidence of bias.

New Year's greetings from ESNR

The year 2013 has been a very successful and fruitful year for the European Society of Neuroradiology (ESNR). For the past year, our society witnessed great accomplishments and developments regarding Neuroradiology education and continued to grow with many neuroradiologists and societies from all over the world joining our family. With 4,084 members, ESNR is one of the major societies. Currently, 23 countries are represented in the Institutional Members Council. In 2013, new partnerships were established with many national Neuroradiological Societies such as Australia–New Zealand, Austria, Bosnia Herzegovina, Croatia, Finland, Latvia, Norway, Serbia, South Africa, Sweden, Switzerland, and the UK. Alongside these Neuroradiological societies, ESNR has also been cooperating with many other medical institutions and organizations. Just as the previous years, our primary objective as a society has been maintaining the leadership in Neuroradiology training and certification in Europe. The European School Of Neuroradiology (ESONR) has gained a more structured and institutionalized status under the chairmanship of Prof. Pia Maly Sundgren. Examination and Accreditation Subcommittees were established within its body and aim to support the organization in standardizing Neuroradiology education throughout Europe. Under the leadership of Prof. Paul Parizel, the Accreditation Subcommittee has been working on the rules and guidelines for the accreditation of the training centers, while the Examination Subcommittee has been primarily focusing on the standardization of the examinations under the chairmanship of Prof. Majda Thurnher. Within the three levels of ESONR Neuroradiology training, European courses in Neuroradiology have gained worldwide acceptance. With a great number of people signed up in advance, every course has filled to capacity and established waiting lists for prospective participants. Many participants have attended from outside Europe, including the Americas, Asia, Australia, and Africa. Furthermore, higher qualification European Diplomas have been introduced as a representation of the standardized third level Neuroradiology training. Only neuroradiologists who attend the third level courses of ESONR and pass individual examinations of each course as well as the final examination fulfill the criteria and are therefore entitled to obtain these higher qualification European Diplomas. Among first level courses, the Galen Foundation Course was organized by Prof. Cem Calli in Izmir, Turkey. This course introduced the basics of neuroradiology to radiology residents. The Galen Foundation Course also represented one of the activities of “European Month of the Brain” (EMoB) of the European Brain Council (EBC). This course had the logo of EMoB and was included in the EMoB activity report. Under the 12th cycle of ECNR, the second course of “CNS Tumors” was organized in Athens, Greece, by Prof. Athanasios Gouliamos, and the third course, “Vascular Diseases”, was organized in Antalya, Turkey, by Prof. E. Turgut Tali respectively. Following these courses, participants who completed the cycle of four courses and fulfilled the eligibility criteria applied for the board examinations. Forty-one applicants passed the board examination and thus, they have received the European Diploma in Neuroradiology (EDiNR). At the third level, Pediatric Neuroradiology, Interventional Neuroradiology, and Spine Interventional Neuroradiology courses have been initiated while the Head and Neck Neuroradiology course is yet to be introduced. Under the leadership of Prof. Andrea E. T. Tali (*) Department of Radiology, Division of Neuroradiology, Gazi University School of Medicine, Besevler, Ankara 06510, Turkey e-mail: turgut.tali@gmail.com

The long-term psychosocial outcomes following excision of sacrococcygeal teratoma: a national study

ObjectiveThe overall effect of the reported long-term sequelae following sacrococcygeal teratoma (SCT) excision on the psychosocial and sexual development has not been addressed appropriately in the literature. The aim of...

Information Giving and Enactment of Consent in Written Consent Forms and in Participants’ Talk Recorded in a Hospital Setting

The paper examines the attainment and adequacy of informed consent in an ethnographic–discursive study on gynecological visits involving doctors, patients, and nurses. Starting from a theoretical discussion on informed consent and the principles upon which it relies, the paper highlights the changes and the adjustments that these principle undergo in practice, from the planning of the research till later stages of the researcher’s fieldwork and data recording. Analyses first focus on the informed consent as a written artifact and show how the description of the study indexes the prospective participants’ identity, as well as, it works in favor of the researcher’s (or, other institutional representatives such as the managers of the Hospital) accountability. Then, the authors focus on instances of audio and video recorded doctor–patient–nurse interactions in which information is reformulated by the doctors, in such a way as to anticipate and/or respond to the nurses’ and patients’ concerns with regards the project (such as, the risk of exposure to the public). The analysis of these episodes carry ethical implications, in that they alert that patients, nurses, and doctors may be not equally knowledgeable about the project and that they can be conceded unequal opportunities to have their interpretations and identity performances acknowledged and inscribed on the tape.

Evidence Of Relative Iron Deficiency in Apheresis Platelet Donors Correlates With Donation Frequency

A minimal hemoglobin (Hb) of 12.5 g/dL is required to protect blood donors from iron-deficiency and anemia and ensure collection of an adequate red cell product. The effects of whole blood or red blood cell (RBC) donation on donor Hb concentration and iron stores have been extensively studied. These changes have not been well characterized in platelet donors. Because platelet donation can occur as frequently as every 72 hours up to 24 times per year, tubes taken for donor testing (approximately 50 mL) at each donation may result in the loss of blood volume equivalent to 2-3 units of whole blood (500 mL each) in frequent donors. We hypothesized that iron deficiency and its associated thrombocytosis is underappreciated in platelet donors.To test this hypothesis, we proposed to 1) analyze the degree of iron deficiency / depletion in platelet donors, 2) assess the correlation between pre-donation platelet count with iron stores, and 3) evaluate the effect of platelet donation frequency on erythropoiesis- and iron-related parameters in white males age 40-65 years, typically representative of the platelet donor pool. Eligible donors were selected from a donor pool who had not donated whole blood / RBCs in the previous 12 months prior to study enrollment. Prospective participants with a history of iron-related pathology (e.g. iron deficiency, hereditary hemochromatosis, anemia, bleeding, or abnormal colonoscopy findings) were excluded from the study. Eligible donors who had not donated any blood products in the prior 12 months were enrolled as controls. Analysis of circulating RBC parameters, serum iron, serum ferritin, serum transferrin concentration and saturation, serum hepcidin, and soluble serum TfR1 were performed and correlations analyzed. The “TfR1 Ferritin Index” (i.e. log(sTfR1/ferritin)) was also evaluated, representing iron restricted erythropoiesis in the absence of frank iron deficiency. Statistical significance was measured using a student t-test; data is presented as mean ± s.e.m. and p<0.05 was considered statistically significant.Fifty eligible platelet donors and eight controls were enrolled in the study. Average age of platelet donors was 56±1 years, no different from that of controls (54±2 years; p=0.6). More donors (22/50 (44%)) were taking multivitamins compared to controls (2/8 (25%)). Only a small number of platelet donors (2/50 (4%)) had previously been deferred for low Hb. Although within the normal range, platelet donors were found to have a lower serum ferritin (54±6 vs.169±60 ng/mL; p<0.0001), transferrin saturation (30±1 vs. 40±7%; p=0.04), and serum hepcidin (35±3 vs. 57±11 mg/mL; p=0.006) relative to controls. In addition, TfR1 ferritin index was suggestive of relatively iron restricted erythropoiesis in platelet donors relative to controls (p=0.005). These results support our premise that platelet donors are relatively more iron deficient. Furthermore, among donors, lower MCV (89±1 vs. 93±1 fL; p=0.03) and CHr (31±0.4 vs. 32±0.4 pg; p=0.03) were observed in those who had donated platelets more than ten times relative to those who had donated once or twice. Lower hepcidin concentration (24±3 vs. 48±6 mg/mL, p=0.005), serum ferritin (38±7 vs. 77±16 ng/mL; p=0.04), and hepcidin/log ferritin (16.0±1.6 vs. 27.0±3.4, p=0.01) were observed in those who had donated platelets more than ten donations relative to those who had donated once or twice. Correlations between hepcidin and donation frequency (r=-0.396), serum ferritin and donation frequency (r=-0.323), and confirmatory hepcidin and log ferritin (r=0.454) were noted in platelet donors. Lastly, pre-donation platelet count correlated with sTfR1 (r=0.418), suggesting that thrombocytopoiesis is stimulated in the setting of relative iron restricted erythropoiesis.Taken together, this pilot study for the first time demonstrates evidence of iron restricted erythropoiesis in frequent apheresis platelet donors. An analysis of iron- and erythropoiesis-related parameters in a broader population of frequent platelet donors (i.e. male and female, white and non-white donors) may demonstrate a potential utility of iron replacement. Disclosures:Ganz:Intrinsic LifeSciences: Equity Ownership, Membership on an entity's Board of Directors or advisory committees. Nemeth:Intrinsic LifeSciences: Equity Ownership, Membership on an entity's Board of Directors or advisory committees. Westerman:Intrinsic LifeSciences: Employment, Equity Ownership, Membership on an entity's Board of Directors or advisory committees.

The Young PI Buzz: Learning from the Organizers of the Junior Principal Investigator Meeting at ISMB-ECCB 2013

If you are a young principal investigator (PI) in the field of computational biology or bioinformatics, you may have noticed recently there is a buzz surrounding you: a plethora of meetings and seminars are being organized specifically for young PIs (P2P workshop at ISMB 2012, An Excellent Research Career Workshop 2012, EMBO Young Scientists' Forum, Young PI Forum at Weizmann Institute 2009–2013, Young Investigators' Meeting by NCI). The challenges faced by young PIs are being discussed widely [1], particularly across social media [2]; funding agencies are searching for new ways to encourage young investigators; new awards are being created; and novel journals, such as EuPA Open Proteomics, provide opportunities tailored for junior scientists. Picking up on this buzz and recognizing the need for a discussion platform, PLOS has established the About My Lab collection of publications. This article is a part of this collection, highlighting the latest event organized by, and for, young PIs: the Junior PI (JPI) meeting. The JPI meeting took place in Berlin, Germany, at this year's ISMB-ECCB 2013, the flagship conference of the International Society for Computational Biology (ISCB). With the support of the ISCB Board of Directors, the meeting was conceived and organized by a group of ISCB's young PIs, most of whom are former ISCB Student Council leaders. The meeting was a mixture of scientific talks, round-table discussions, and peer-to-peer interaction. To facilitate discussion and interaction, all participants introduced themselves during the joint breakfast. This was followed by three Frontiers in Science talks, in which researchers who recently started their own group gave a review-like overview of their research field and the challenges ahead. The keynote, by Jean Peccoud, dealt with how to run a research lab as a business [3], and how to use tracking tools to account for the productivity of lab members, which invoked plenty of discussion. In the afternoon, several round-table discussions ensued, with summaries presented to the entire audience at the end of the meeting. Since the prospective participants were asked in advance for topics of importance, these discussions were precisely tailored to reflect the interests of the audience. The meeting turned out to strike the right balance between scientific talks, experience exchange, getting to know each other, and networking opportunities. The success of the JPI meeting, while critically dependent on the input of the participants, may also be accredited to its organizers, each of whom brought his/her own experience, questions, and passions. Interestingly, some of the organizers are still in the postdoc-PI transition phase, which may explain why they are highly motivated to improve the life of a young PI. Moreover, it is becoming increasingly common in modern science for many postdocs to be involved in supervision of research staff, blurring the conventional distinction between a postdoc and PI. This rise of the postdoc as principal investigator was reflected in a recent report by the European University Institute [4]. This article is different from other About My Lab articles, each following the approach “one author—one interview.” Inspired by the experimental approach of the JPI meeting itself, we present you with six short interviews with the JPI meeting organizers, carried out by the Guest Editor of About My Lab (TA). By providing different opinions, these interviews shed light on some of the key issues of a young PI's career.

The Micronutrient Intake Profile of a Multicentre Cohort of Australian LAGB Patients

Patients who have undergone bariatric surgery have increased risks of developing micronutrient deficiencies. Translational research investigating the actual micronutrient intake of bariatric patients is limited. We examined the micronutrient intake of a multicentre cohort of laparoscopic adjustable gastric banding patients 1 year post-surgery. These data were compared to micronutrient recommendations for the general population. Consecutive patients from three bariatric surgery facilities in Melbourne, Australia, were invited to participate 12 months post-operatively. A validated food frequency questionnaire was posted to 215 prospective participants. Of the 52 participants, micronutrient intakes from food and fluids alone were below population recommendations for calcium, folate, magnesium, potassium, retinol equivalents, thiamin and vitamin E. Males did not meet the recommended intakes for zinc, and iron intakes in pre-menopausal women were insufficient. Intakes lower than recommended levels for these micronutrients suggest inadequate intake of foods from vegetable, dairy, lean meat (or alternatives) and wholegrains. Micronutrient intakes below recommended levels in this patient group can be further explained by their macronutrient intakes that suggested diets of poor nutrient density. Recommendations for supplementation in this group have wide variations, usually having been developed through the presence of clinical and biochemical deficiencies. Nutritional supplementation should be more extensive in scope and dosage than is currently recommended by some professional guidelines. Further long-term studies are needed to explore both macro- and micronutrient intakes on the morbidity and mortality of this patient population.

The relation between psychodemographic factors and perceived stigmatisation among people living with HIV/AIDS in Ibadan, Nigeria: a cross-sectional study

BackgroundThe potential for rejection, abandonment, physical and emotional abuse, and other adverse consequences of being infected with HIV creates substantial barriers to disclosure of HIV status. A clear link has been shown between positive HIV cognition, low risk sexual behaviour, and disclosure of HIV status. The issue of perceived stigmatisation among people living with HIV/AIDS (PLWHAs) remains a major hindrance in the prevention and postexposure control of HIV/AIDS. This study investigated the link between HIV/AIDS cognition, HIV self-disclosure, and perceived stigmatisation, and explored the effect of age and sex on perceived stigmatisation. MethodsThis correlational study adopted a cross-sectional design. The study was done in four centres for PLWHAs in Ibadan, Oyo State, Nigeria. The centres were: Adeoyo Maternity Hospital; APIN/PEPFAR units at St Mary Hospital, Eleta; Family Health and Population Action Council; and Association for Reproductive and Family Health (AFRH). These sites were selected because of their focus on caring for PLWHA. All PLWHA in the centres were contacted. Prospective participants were required to complete a form assessing eligibility. Inclusion criteria were: diagnosed as HIV positive before the study, currently registered with any of the four centres caring for PLWHAs in Ibadan, English literate, and personally willing to participate after an informed consent process. Even though about 765 PLWHA were fully registered at the centres, only 500 fulfilled the eligibility criteria and were purposively included as participants. Of these, 421 questionnaires were correctly filled and returned (response rate 84·2%). Participants were made up of 278 (66%) female and 143 (34%) male patients. The participants' ages ranged between 23 and 52 years (mean age 34 years). Data were collected with the use of a 70-item self-report questionnaire consisting of respondents' sociodemographic characteristics and three validated instruments measuring HIV-perceived stigmatisation, HIV cognition, and HIV self-disclosure. FindingsA positive relation between HIV/AIDS cognition (r=0·10, p=0·034) and HIV self-disclosure (r=0·60, p=0·012) with perceived stigmatisation was recorded. A 2x2x2x2 factorial analysis showed that young females with poor HIV cognition, but who scored high on HIV self-disclosure (n=38, x=106·57, SD 4·8), were most likely to experience perceived stigmatisation. HIV/AIDS cognition and HIV self-disclosure jointly predicted perceived stigmatisation (R2=0·36, p=0·021). Female PLWHA experienced perceived stigmatisation more than male PLWHA (t test 4·40, p=0·0013). Age had no significant effect on perceived stigmatisation. InterpretationThese findings establish that a link exists between HIV-perceived stigmatisation, HIV cognition, and HIV self-disclosure. Policies and actions should therefore focus on these issues in HIV prevention, care, and support. FundingNone.

Concussion-Assessment and -Management Techniques Used by Athletic Trainers

Understanding concussion-assessmment and -management practices that athletic trainers (ATs) currently use will allow clinicians to identify potential strategies for enhancing the quality of care provided to patients. To assess current clinical concussion diagnostic and return-to-participation practices among ATs. Cross-sectional study. Web-based survey. A link to the survey was sent randomly to a convenience sample of 3222 members of the National Athletic Trainers' Association. A total of 1053 (32.7%) certified ATs (experience as an AT = 11.2 ± 9.1 years) responded to the survey. Prospective participants received electronic correspondence informing them of the purpose of the study and providing a link to the Web-based survey instrument. A reminder e-mail was sent approximately 6 weeks later, and the survey remained online for a total of 8 weeks. We collected information on the annual number of concussions assessed and tools employed to diagnose, manage, and safely return an athlete to participation. Descriptive statistics were computed for each variable. Participants reported observing 10.7 ± 11.0 concussions per year. Clinical examination (n = 743, 70.6%) was the most commonly reported means for evaluating and diagnosing concussion. Less than half of our respondents employed the Standardized Assessment of Concussion (n = 467, 44.3%), any variation of the Romberg test (n = 461, 43.8%), and computerized neuropsychological testing (n = 459, 43.6%). Clinical examination (n = 773, 73.4%), return-to-participation guidelines (n = 713, 67.7%), physician recommendation (n = 660, 62.7%), or player self-report (n = 447, 42.5%) contributed to the return-to-participation decisions of ATs. Only 20.8% (n = 219) of ATs reported using all 3 recommended domains of the concussion battery. Our study demonstrated a growth in the number of ATs incorporating objective clinical measures of concussion as a part of their concussion management. Conversely, fewer ATs reported using a standard clinical examination in their concussion assessment. These findings suggest ATs must continue to increase their use of both objective concussion assessment tools and the standard clinical examination.

Ethics is for human subjects too: Participant perspectives on responsibility in health research

Despite the significant literature as well as energy devoted to ethical review of research involving human subjects, little attention has been given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or as a way of obtaining individual benefits? What if anything do research subjects feel they are owed for participation? And what do they feel that they owe the researcher? Drawing on in-depth individual interviews conducted in 2006 and 2007 with 41 subjects who participated in a variety of types of health research in Canada, this paper focuses on subject perspectives on responsibility in research. Highlighting the range of ways that subjects describe their involvement in research and commitments to being a ‘good’ subject, we present a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are presented as ideal types typifying a set of circumstances and values. As such, they collectively illuminate a range of motivations expressed by human subjects as well as potential sources of vulnerability. The typology adds a new dimension to the literature in this area and has significant implications for researchers seeking more human-subject centred approaches to research recruitment and retention, as well as research ethics boards trying to better anticipate the perspectives of prospective participants.

English

Non-compliance with anti-tuberculosis therapy has been cited as a major barrier to the control of TB. There are different factors responsible for the non-compliance of TB. The cross sectional prospective participants in the study were interviewed by using a&nbsp; set of questionnaire. TB patients were enrolled at DOTS Centre of LRS Institute of Tuberculosis and Respiratory Disease, New Delhi, India. Patients who discontinued and interrupted the treatment for more than 2 months were categorized as non-compliance cases. T-test was used for comparing the means of control and case groups. The default rate of Delhi LRS-RNTCP defined area was 3.53%. 60% of non-compliance occurred in category II patients. Maximum patients had 3+ initial bacillary load (42.5%). 27.5% patients had positive influence on non-compliance in response to problem created by TB. Patients who suffered from adverse drug reaction and toxicity of drug contributed the highest rate (40%); and 22.5% had no role in non-compliance of tuberculosis patients. Drug related factors were major factors involved in non-compliance with tuberculosis treatment. Thus, we recommend that ADR monitoring and least ADR active drug be used. &nbsp; Key words: Tuberculosis, non-compliance, multiple drug resistance, adverse drug reactions, anti-tuberculosis drugs.

Projecting social support needs of informal caregivers in Malaysia

This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers.

A Study Assessing Public Knowledge, Belief and Behavior of Antibiotic Use in an Omani Population

This study was aimed to assess public knowledge, belief and behavior towards antibiotics use in a general population in the Sultanate of Oman. A 12-item self-administered questionnaire was distributed to 850 prospective participants by researchers using quota sampling in two governorates of Oman. The data obtained were evaluated to assess the responses to individual questions related to knowledge, belief and behavior of antibiotic use. Median score of the respondents was correlated with participant demographics and status on use of antibiotics. A total of 718 completed questionnaires were obtained giving a response rate of 85%. The median total score of the participants was 16 (Interquartile range: 6) out of a possible maximum score of 24. A moderate knowledge and behavior score was observed, while the belief score of the participants was low. A significant difference was observed in the median total score based on age group, educational qualification and employment status. Antibiotics are frequently used by the public. An inappropriate belief on antibiotic related aspects was observed and inappropriate behavior was noticed, which are reflections of insufficient knowledge and wrong beliefs. Interventions must be put in place to educate the public on appropriate antibiotic use.

Disclosing Incidental Findings in Mental Health Research

Dr. M is the Principal Investigator of a prospective longitudinal study elucidating the transition of minimal cognitive impairment to dementia. The study involves patients aged 60 years and above who are recruited from the hospital’s memory clinic of which Dr. M is the Director. According to the research protocol, which has been approved by the local institutional ethics review board, prospective participants are referred by clinicians to a research nurse, who provides them with information and takes their consent. Patients are informed that their participation will last for over three years and will involve blood tests and magnetic resonance imaging (MRI) scans: at baseline and annually. The participants are told that these assessments will not be shared with them as the purpose of the research is to generate new knowledge and is not part of their treatment. Consent is retaken before each follow up and may be withdrawn at any time without consequence to the patient’s ongoing clinical treatment. Only patients who are mentally competent are included in the study. The MRI scans are assessed by a neurologist who is a co-investigator on the project. At a 12-month follow up with one participant, the neurologist notices a small space-occupying lesion. However, he cannot determine its clinical significance without further clinical information and investigations. The research team had not anticipated finding evidence of other serious medical indications and had not asked participants in the consent process if they should be informed of such incidental findings. They debate whether they should break protocol and inform the patient of the lesion. The patient involved is 72 years old.