New Feeding Assessment Scale for individuals with genetic syndromes: Validity and reliability in the CHARGE syndrome population.

AIM: To develop a feeding scale for parents/care givers of individuals of all ages with genetic syndromes experiencing extensive feeding and swallowing problems. Second, to assess its validity and reliability in CHARGE syndrome. METHODS: The new Feeding Assessment Scale (FAS) was adapted from a scale for children who need prolonged tube feeding (Paediatric Assessment Scale for Severe Feeding Problems, PASSFP). Ten parents piloted the new scale before it was sent out with the PASSFP and feeding history questions. A subset completed the new scale again 4-8 weeks later. RESULTS: One hundred parents of individuals with CHARGE syndrome participated from around the world. The new scale had good construct validity, with a significant effect for an increased number of feeding risk factors having higher scale scores (P < 0.001). Face validity was high, as scores significantly differed between individuals whose parents identified their feeding difficulties as very mild, mild, moderate, severe and very severe (P < 0.001). Test-retest reliability (r = 0.94, P < 0.001) and internal consistency (Cronbach's alpha 0.91) were both high. There was significant convergent validity between the new scale and the PASSFP (r = -0.79, P < 0.001). CONCLUSIONS: This new tool is reliable and valid for parents/care givers of individuals with CHARGE syndrome. It can be used to assess the current severity of feeding difficulties and to track progress before and after treatment. It expands upon previous existing tools in that it can be used in both individuals who are not tube fed, as well as in those who are, as well as across the life-span.

Risk acceptance of human T-lymphotropic virus infection in solid organ transplantation-A survey of Atlantic Canadian ambulatory patients.

BACKGROUND: Human T-lymphotropic virus (HTLV) has an estimated prevalence of 12 per 100 000 in the general Canadian population (with higher rates in distinct groups) and is most commonly transmitted by breast feeding, sexual intercourse, sharing injection tools, and blood transfusions. A minority of those infected will develop severe disease. Health Canada mandates that people who are positive for HTLV are not suitable to be solid organ donors. Given the apparent low-disease burden of HTLV in Canada, we explored HTLV risk tolerance among patients, in the context of organ transplantations. METHODS: Using telephone, and in-person questionnaires, we assessed willingness of patients to accept the risk of HTLV infection in hypothetical scenarios in which they required an organ transplant for survival. RESULTS: Seventy-four outpatients attending various medical clinics participated in the survey. In a standard gamble scenario, 37.5% of respondents would have accepted a solid organ transplant regardless of HTLV risk, as compared to 27.3% and 24.6% accepting organ transplantation if there was a risk of human immunodeficiency virus (HIV) or of human virus Y (HVY; a fictitious virus describing HTLV in terms of neurological outcomes), respectively. Similarly, the median longevity traded to ensure a virus-free organ was 4-5 years regarding all viruses, except for HVY, for which the median time exchanged to ensure a virus-free organ was 10 (out of a possible 20) years. CONCLUSIONS: These data suggest that patients, though willing to accept some risk of viral infection, would not be willing to forgo HTLV screening of solid organs.

The impact of an educational intervention on knowledge about infant crying and abusive head trauma.

BACKGROUND: Infants follow a predictable trajectory of increased early crying. Frustration with crying is reported to be a trigger for abusive head trauma (AHT). OBJECTIVE: To evaluate the impact of postpartum delivery of the educational program, the Period of PURPLE Crying (PURPLE), in a group of first-time mothers. The primary objective was to determine whether there was a change in knowledge about infant crying and shaking after exposure to PURPLE. Factors associated with change in knowledge were also examined. METHOD: A total of 93 participants were recruited over a four-month period at a tertiary care hospital in Nova Scotia. Pre- and postintervention data were collected. RESULTS: Knowledge about infant crying increased significantly after program delivery (P=0.001). Low baseline crying knowledge was a significant predictor of increased knowledge about infant crying (P≤0.01). There was an insignificant decrease in shaking knowledge (P=0.5), which may have been the consequence of high baseline knowledge. CONCLUSION: An educational program for new parents appears to be warranted, especially with respect to improving knowledge about infant crying. This may have a positive benefit in AHT prevention. Additional studies are required to evaluate the impact of the program on other caregivers and on rates of AHT.

HISTORIQUE: Les nourrissons suivent une trajectoire prévisible d'augmentation des pleurs peu après la naissance. La frustration à l'égard de ces pleurs est considérée comme un déclencheur des traumatismes crâniens non accidentels (TCNA). OBJECTIF: Évaluer l'effet de la transmission d'un programme d'éducation postnatale, la Period of PURPLE Crying (PURPLE), à un groupe de mères d'un premier enfant. L'objectif primaire consistait à déterminer si les connaissances relatives aux pleurs et aux secousses des nourrissons changeaient après l'exposition à PURPLE. Les facteurs liés aux changements de connaissances ont également été examinés. MÉTHODOLOGIE: Les chercheurs ont recruté 93 participantes sur une période de quatre mois dans un hôpital de soins tertiaires de la Nouvelle-Écosse. Ils ont colligé les données avant et après l'intervention. RÉSULTATS: Les connaissances sur les pleurs des nourrissons augmentaient de manière significative après la prestation du programme (P=0,001). Le peu de connaissances sur les pleurs en début d'étude était un prédicteur important d'augmentation des connaissances sur les pleurs des nourrissons (P≤0,01). Il y avait une diminution non significative des connaissances sur les secousses (P=0,5), qui peut découler des connaissances importantes avant l'intervention. CONCLUSION: Un programme d'éducation pour les nouveaux parents semble justifié, particulièrement pour accroître les connaissances sur les pleurs des nourrissons. Il pourrait contribuer à prévenir les TCNA. Il faudra réaliser d'autres études pour évaluer l'effet du programme auprès d'autres personnes qui s'occupent de nourrissons et sur le taux de TCNA.

Challenges to immunization: the experiences of homeless youth.

BACKGROUND: Homelessness is a critical social issue, both a product of, and contributing to, poor mental and physical health. Over 150,000 young Canadians live on the streets. Homeless youth experience a high incidence of infectious diseases, many of which are vaccine preventable. Early departure from school and limited access to public health services makes them a particularly vulnerable high-risk group. This study explores challenges to obtaining essential vaccines experienced by homeless youth. METHODS: A qualitative research study to explore knowledge, attitudes, beliefs, and experiences surrounding immunization of hard-to-reach homeless youth was designed. Participants were recruited for focus groups from Phoenix House and Shelter, a non-profit, community-based organization assisting homeless youth in Halifax, Nova Scotia, Canada. An experienced facilitator guided the recorded discussions. Transcripts of audiotapes were analyzed using a constant comparative method until data revealed a set of exemplars and themes that best captured participants' knowledge, attitudes, beliefs and experiences surrounding immunization and infectious diseases. RESULTS: Important themes emerged from our analysis. Considerable variability in knowledge about immunization and vaccine preventable diseases was found. The homeless youth in the study had limited awareness of meningitis in contrast to a greater knowledge about sexually transmitted infections and influenza, gained during the H1N1/09 public health campaign. They recognized their poverty as a risk for contracting infectious diseases, along with their inability to always employ known strategies to prevent infectious diseases, due to circumstances. They showed considerable insight into the detrimental effects of poor hygiene, sleeping locations and risk behaviour. Interviewed homeless youth regarded themselves as good compliers of health professional advice and offered valuable suggestions to improve immunization in their population. CONCLUSIONS: To provide effective public health interventions, it is necessary to consider the knowledge, attitudes, beliefs, and experiences of hard to reach, high risk groups. Our study shows that homeless youth are interested and capable in discussing immunization. Active targeting of homeless youth for public health immunization programs is needed. Working collaboratively with non-profit organizations that assist homeless youth provides an opportunity to increase their knowledge of infectious risks and to improve immunization strategies in this vulnerable group.

A vignette-based survey to assess clinical decision making regarding antibiotic use and hospitalization of patients with probable aseptic meningitis.

BACKGROUND: The many etiologies of meningitis influence disease severity - most viral causes are self-limiting, while bacterial etiologies require antibiotics and hospitalization. Aided by laboratory findings, the physician judges whether to admit and empirically treat the patient (presuming a bacterial cause), or to treat supportively as if it were viral. OBJECTIVE: To determine factors that lead infectious disease specialists to admit and treat in cases of suspected meningitis. METHODS: A clinical vignette describing a typical case of viral meningitis in the emergency department was presented to clinicians. They were asked to indicate on a Likert scale the likelihood of administering empirical antibiotics and admitting the patient from the vignette and for eight subsequent scenarios (with varied case features). The process was repeated in the context of an inpatient following initial observation and/or treatment. RESULTS: Participants were unlikely to admit or to administer antibiotics in the baseline scenario, but a low Glasgow Coma Score or a high cerebrospinal fluid (CSF) white blood cell count with a high neutrophil percentage led to empirical treatment and admission. These factors were less influential after a negative bacterial CSF culture. These same clinical variables led to maintaining treatment and hospitalization of the inpatient. CONCLUSIONS: Most participants chose not to admit or treat the patient in the baseline vignette. Confusion and CSF white blood cell count (and neutrophil predominance) were the main influences in determining treatment and hospitalization. A large range of response scores was likely due to differing regional practices or to different levels of experience.

HISTORIQUE: Les nombreuses étiologies de la méningite influent sur la gravité de la maladie. La plupart des causes virales sont spontanément résolutives, tandis que les étiologies bactériennes exigent la prise d'antibiotiques et une hospitalisation. À l'aide des résultats de laboratoire, le médecin évalue s'il doit hospitaliser le patient et le traiter de manière empirique (présumant une cause bactérienne) ou lui donner un traitement de soutien comme si la maladie était d'origine virale. OBJECTIF: Déterminer les facteurs qui incitent les infectiologues à hospitaliser et traiter des cas de méningite présumée. MÉTHODOLOGIE: Les cliniciens se sont fait présenter une saynète clinique décrivant un cas classique de méningite virale observé au département d'urgence. Les chercheurs ont invité les cliniciens à indiquer sur une échelle de Likert la probabilité d'administrer des antibiotiques empiriques et d'hospitaliser le patient d'après la saynète et huit autres scénarios (aux diverses caractéristiques). Les cliniciens ont repris le processus chez un patient hospitalisé après une observation initiale ou un traitement. RÉSULTATS: Les participants étaient peu susceptibles d'hospitaliser ou d'administrer des antibiotiques dans le scénario de base, mais un faible indice de coma de Glasgow ou une numération élevée des globules blancs dans le liquide céphalorachidien (LCR) associée à un fort pourcentage de neutrophiles donnait lieu à un traitement et une hospitalisation empiriques. Ces facteurs avaient moins d'influence après une culture bactérienne négative dans le LCR. Ces mêmes variables cliniques suscitaient le maintien du traitement et le prolongement de l'hospitalisation du patient hospitalisé. CONCLUSIONS: La plupart de participants choisissaient de ne pas hospitaliser ou traiter le patient observé dans la saynète de base. La confusion et la numération des globules blancs dans le LCR (et la prédominance en neutrophiles) étaient les principales influences pour déterminer le traitement et l'hospitalisation. La vaste plage d'indices de réponse était probablement attribuable à des pratiques régionales divergentes ou à divers niveaux d'expérience.

Clinical presentation of patients with aseptic meningitis, factors influencing treatment and hospitalization, and consequences of enterovirus cerebrospinal fluid polymerase chain reaction testing.

INTRODUCTION: Clinical and laboratory features of enteroviral meningitis may overlap with those of bacterial meningitis. In the present retrospective review, we compared features of enteroviral (EV)-positive and -negative patients to determine those that were most influential in admission, discharge and in anti-infective administration. METHODS: Data were analyzed from the records of 117 pediatric and adult patients who underwent cerebrospinal fluid (CSF) EV testing over a three-year period. RESULTS: The oldest EV-positive patient was 34 years of age and the occurrence of the disease was highly seasonal. EV-positive patients were more likely to report fever, rash, photophobia, short onset and exposure to an ill contact. A positive polymerase chain reaction (PCR) result was associated with relatively short hospitalization. Seizure and neurological symptoms were more strongly associated with a negative PCR test result. CSF characteristics did not discriminate well between patients with positive and negative PCR tests. Patients with imperfect Glasgow Coma Scores or with neurological symptoms were more likely to be admitted to hospital than those without. Fever and recent onset predicted determinants of anti-infective use. CONCLUSION: The present retrospective study confirms previous reports regarding seasonality and the young age of positive patients. Factors that indicate nonenteroviral etiology were appropriately also those that influenced hospitalization. Patients with EV meningitis were likely to be treated with empirical anti-infectives, and a substantial proportion continued to take antibiotics for more than 24 h after receiving the positive EV PCR test result. INTRODUCTION: Clinical and laboratory features of enteroviral meningitis may overlap with those of bacterial meningitis. In the present retrospective review, we compared features of enteroviral (EV)-positive and -negative patients to determine those that were most influential in admission, discharge and in anti-infective administration. METHODS: Data were analyzed from the records of 117 pediatric and adult patients who underwent cerebrospinal fluid (CSF) EV testing over a three-year period. RESULTS: The oldest EV-positive patient was 34 years of age and the occurrence of the disease was highly seasonal. EV-positive patients were more likely to report fever, rash, photophobia, short onset and exposure to an ill contact. A positive polymerase chain reaction (PCR) result was associated with relatively short hospitalization. Seizure and neurological symptoms were more strongly associated with a negative PCR test result. CSF characteristics did not discriminate well between patients with positive and negative PCR tests. Patients with imperfect Glasgow Coma Scores or with neurological symptoms were more likely to be admitted to hospital than those without. Fever and recent onset predicted determinants of anti-infective use. CONCLUSION: The present retrospective study confirms previous reports regarding seasonality and the young age of positive patients. Factors that indicate nonenteroviral etiology were appropriately also those that influenced hospitalization. Patients with EV meningitis were likely to be treated with empirical anti-infectives, and a substantial proportion continued to take antibiotics for more than 24 h after receiving the positive EV PCR test result.

HISTORIQUE: Les caractéristiques cliniques et de laboratoire de la méningite entérovirale peuvent chevaucher celles de la méningite bactérienne. Dans la présente analyse rétrospective, les chercheurs ont comparé les caractéristiques des patients positifs et négatifs à l'entérovirus (EV) pour déterminer celles qui avaient le plus d'influence sur l'admission, le congé et l'administration d'anti-infectieux. MÉTHODOLOGIE: Les chercheurs ont analysé les données tirées des dossiers de 117 patients pédiatriques et adultes qui avaient subi un test du liquide céphalorachidien (LCR) positif à l'EV sur une période de trois ans. RÉSULTATS: La patiente positive à l'EV la plus âgée avait 34 ans. L'occurrence de la maladie était hautement saisonnière. Les patients positifs à l'EV étaient plus susceptibles de déclarer de la fièvre, des éruptions, de la photophobie, une apparition rapide et une exposition à un contact malade. Les résultats positifs de la réaction en chaîne de la polymérase (PCR) s'associaient à une hospitalisation relativement courte. Les conclusions et les symptômes neurologiques étaient liés plus fortement aux résultats d'un test de PCR négatif. Les caractéristiques du LCR distinguaient mal les patients ayant des tests de PCR positifs de ceux ayant des résultats négatifs. Les patients dont l'indice de coma de Glasgow était imparfait ou qui avaient des symptômes neurologiques étaient plus susceptibles d'être hospitalisés que les autres. La fièvre et une apparition récente étaient prédictives de l'utilisation d'anti-infectieux. CONCLUSION: La présente étude rétrospective confirme les rapports antérieurs au sujet du caractère saisonnier et du jeune âge des patients positifs. Comme de juste, les facteurs indicateurs d'une étiologie non entérovirale étaient aussi ceux qui influaient sur l'hospitalisation. Les patients ayant une méningite EV étaient susceptibles d'être traités à l'aide d'anti-infectieux empiriques, et une forte proportion d'entre eux continuaient de prendre des antibiotiques pendant plus de 24 heures après avoir reçu le résultat du test PCR positif à EV.

The role of peer communication in the socialization of adolescents' pain experiences: a qualitative investigation.

BACKGROUND: Recurrent pain is a common complaint among adolescents. Children learn to resolve or cope with pain largely through family dynamics, particularly maternal influences. By adolescence, young people possess an array of pain behaviors, the culmination of multiple opportunities for modeling and reinforcement of attitudes and beliefs about pain. Adolescence is a time of increased autonomy characterized by, among other complex factors, significant increases in peer influence. Although peers are influential in health-risk behavior, little is known how peers impact adolescents' pain experience. The present study explored the role of peers in adolescents' attitudes toward pain, pain behaviors and over-the-counter analgesics. METHODS: Sixty-minute focus groups were conducted with a sample 24 junior high school students from Halifax, Nova Scotia, Canada (11 male: mean age = 13.45 years, range = 12-15 years; 13 female: mean age = 13.31 years, range = 12-15 years). Participants were randomly assigned to one of five same-gender focus groups designed to explore a wide breadth and depth of information. Sessions were run until theoretical data saturation. Textual data, from transcribed audiotapes, were analyzed with the constant comparative method. RESULTS: Peer influences were apparent in how adolescents communicate about pain and how those communications effect pain expression. Overt pain responses to injury were primarily contextual and depended on perceived threats to peer-time and pain severity. Adolescents were intolerant of peers' pain behaviors when the cause was perceived as not severe. These attitudes impacted how adolescents responded to their own pain; males were careful not to express embarrassing pain in front of peers, females felt no restrictions on pain talk or pain expression. Evidence for peer influence on attitudes toward OTC analgesics was apparent in perceptions of over-use and ease of access. Findings are discussed within the context of social information-processing and gender role expectations. CONCLUSION: Little research has addressed how young people experience pain within the context of the psychosocial influences that dominate during adolescence. The findings provide some insight into the role of peer influences via verbal and non-verbal communication, in adolescents' pain experience. This exploratory study is a necessary first step in understanding the socialization of adolescents' pain experiences.

Adolescent interviewing skills: effect of feedback.

BACKGROUND: Communicating with adolescent patients can be challenging. Our study assessed the effect of structured feedback following a standardised patient (SP) encounter on postgraduate year-1 (PGY1) residents' adolescent-specific communication skills. Communicating with adolescent patients can be challenging METHODS: A two-group, prospective, double-blind randomised control study design was employed. Measures were taken before and after the intervention. PGY1 residents conducted a 30-minute interview with an SP adolescent-mother pair, who then individually scored the resident's performance using the validated Structured Communication Adolescent Guide (SCAG). PGY1s were randomised to receive either structured feedback following the interview (feedback group) or no feedback (no feedback group). All residents completed a second interview 4-6 weeks later. Scores were analysed using unpaired t-tests. RESULTS: Thirty-eight residents completed both interviews. The mean total-item and mean global scores for the first interview did not differ significantly between the feedback (n = 21) and no-feedback group (n = 17). The mean total-item scores for the feedback group [first interview: 34.19 ± 10.19 (adolescent); 36.33 ± 9.77 (mother)] improved significantly for the second interview [45.17 ± 6.22 (adolescent); 44.71 ± 6.72 (mother); p = 0.002 and 0.003, respectively]. The mean global scores also improved significantly from the first interview [27.00 ± 6.49 (adolescent); 27.47 ± 6.50 (mother)] to the second interview [34.05 ± 3.30 (adolescent); 31.19 ± 3.85 (mother); p = 0.001 and 0.03, respectively]. No significant improvement in the mean total-item or mean global rating was observed in the no feedback group. CONCLUSIONS: Structured feedback following a single adolescent and mother SP encounter resulted in significant improvement in the adolescent-specific communication skills of PGY1s in performing an adolescent interview.

Skills for Interviewing Adolescent Patients: Sustainability of Structured Feedback in Undergraduate Education on Performance in Residency.

BACKGROUND: Effective adolescent (10 to 19 years) interviewing by physicians is an essential skill that many trainees can find challenging. OBJECTIVE: We assessed whether structured adolescent interviewing using standardized patients (SPs) and feedback in undergraduate medical education (UME) has a sustained effect on residents' skills. METHODS: Postgraduate year (PGY) 1 residents conducted interviews with a SP adolescent-mother pair. The SPs independently scored each PGY-1 interview using the structured communication adolescent guide (SCAG). Unpaired t tests were conducted comparing "Total-Item" and "Global" scores of PGY-1s who received structured SP adolescent interviewing with feedback in UME ("structured training" group) to those who had not ("no structured training" group). RESULTS: PGY-1s in the structured training group (n = 23) received significantly higher mean Total-Item scores from both the SP adolescent (40.78 ± 7.04 and 32.41 ± 10.12, respectively; P = .001) and the SP mother (40.48 ± 7.90 and 33.34 ± 10.90, respectively; P = .01) than those without structured training (n = 29). Statistically significant results favoring PGY-1s with prior training were also seen with the SP adolescent and mother total Global SCAG scores. CONCLUSIONS: Structured training in adolescent interviewing with SPs and feedback in UME appears to have a sustained effect on residents' adolescent interviewing skills. PGY-1s will interview adolescents and may benefit from structured adolescent SP interviewing with feedback, especially individuals who did not have this experience during their medical school training.

Chronic Otitis Media with Effusion Is Associated with Increased Risk of Secondary Speech Surgery.

BACKGROUND: Velopharyngeal insufficiency and chronic otitis media with effusion following primary cleft palate repair can be attributed to persistent abnormalities in the levator and tensor veli palatini muscles, respectively. The purpose of this case-control study was to examine the association between otitis media with effusion requiring myringotomy tubes and the need for secondary speech surgery. METHODS: Records of patients who underwent primary palatoplasty at the authors' institution from 1990 to 2006 were reviewed. Data included age at primary palatoplasty, sex, Veau classification, surgeon, number of postpalatoplasty myringotomy tube procedures, hearing loss, 22q deletion syndrome diagnosis, and fistula. The primary outcome was need for secondary speech surgery. RESULTS: Of 249 patients meeting inclusion criteria, forty-four patients (17.7 percent) had secondary speech surgery recommended or performed. Univariate analysis revealed a significant association between Veau classification, 22q deletion syndrome diagnosis, and two or more myringotomy tube procedures with secondary speech surgery. Adjusting for multiple covariates, children requiring two or more myringotomy tubes were 2.55 times more likely to require secondary speech surgery than patients who required one or fewer myringotomy tubes procedures (95 percent CI, 1.24 to 5.21; p = 0.009). CONCLUSIONS: The authors demonstrate that chronic otitis media with effusion requiring two or more myringotomy tube procedures is associated with a significantly increased likelihood of requiring secondary speech surgery. Using otitis media with effusion as a clinical predictor for secondary velopharyngeal insufficiency could lead to early identification of at-risk patients in need of intensive speech therapy and timely secondary speech surgery. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, III.

Examining the impact of health research facilitated by small peer-reviewed research operating grants in a women's and children's health centre.

BACKGROUND: There has been limited research on the impact of research funding for small, institutional grants. The IWK Health Centre, a children and women's hospital in Maritime Canada, provides small amounts (up to $15,000) of research funding for staff and trainees at all levels of experience through its Research Operating Grants. These grants are rigorously peer-reviewed. To evaluate the impact of these grants, an assessment was completed of several different areas of impact. FINDINGS: An online questionnaire was sent to 64 Principal Investigators and Co-Investigators from Research Operating Grants awarded from 2004 to 2006. The questionnaire was designed to assess five areas of potential impact: (1) research, (2) policy, (3) practice, (4) society and (5) personal. Research impact reported by participants included publications (72%), presentations (82%) and knowledge transfer beyond the traditional formats (51%). Practice impact was reported by 67% of participants, policy impact by 15% and societal impact by 18%. All participants reported personal impact. CONCLUSIONS: Small research grants yield similar impacts to relatively large research grants. Regardless of the total amount of research funds awarded, rigorously peer-reviewed research projects have the potential for significant impact at the level of knowledge transfer and changes in clinical practice and policy. Additional findings in the present research indicate that small awards have the potential to have significant impact on the individual grant holder across a variety of capacity building variables. These personal impacts are particularly noteworthy in the context of developing the research programs of novice researchers.