Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

BACKGROUND: Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care. METHODS: A sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used. RESULTS: 105 male participants completed the online survey (mean age 37 ± 11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support. CONCLUSION: The web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.

Gender-related psychological and behavioural correlates of pubertal timing in a national sample of Swiss adolescents.

The potential consequences of early and late puberty on the psychological and behavioural development of the adolescent are not well known. This paper presents focused analyses from the Swiss SMASH study, a self-administered questionnaire survey conducted among a representative sample of 7488 adolescents from 16 to 20 years old. Data from participants reporting early or late timing of puberty were compared with those reporting average timing of maturation. Early maturing girls reported a higher rate of dissatisfaction with body image (OR=1.32) and functional symptoms (OR=1.52) and reported engaging in sexual activity more often (OR=1.93). Early maturing boys reported engaging in exploratory behaviours (sexual intercourse, legal and illegal substance use) at a significantly higher rate (OR varying between 1.4 and 1.99). Both early and late maturing boys reported higher rates of dysfunctional eating patterns (OR=1.59 and 1.38, respectively), victimisation (OR=1.61 and 1.37, respectively) and depressive symptoms (OR=2.11 and 1.53, respectively). Clinicians should take into account the pubertal stage of their patients and provide them, as well as their parents, with appropriate counselling in the field of mental health and health behaviour.

Psychosexual development in men with congenital hypogonadotropic hypogonadism on long-term treatment: a mixed methods study.

INTRODUCTION: Congenital hypogonadotropic hypogonadism (CHH) is a rare, genetic, reproductive endocrine disorder characterized by absent puberty and infertility. Limited information is available on the psychosocial impact of CHH and psychosexual development in these patients. AIM: The aim of this study was to determine the impact of CHH on psychosexual development in men on long-term treatment. METHODS: A sequential mixed methods explanatory design was used. First, an online survey (quantitative) was used to quantify the frequency of psychosexual problems among CHH men. Second, patient focus groups (qualitative) were conducted to explore survey findings in detail and develop a working model to guide potential nursing and interdisciplinary interventions. MAIN OUTCOME MEASURES: Patient characteristics, frequency of body shame, difficulty with intimate relationships, and never having been sexually active were assessed. Additionally, we collected subjective patient-reported outcomes regarding the impact of CHH on psychological/emotional well-being, intimate relationships, and sexual activity. RESULTS: A total of 101 CHH men on long-term treatment (>1 year) were included for the analysis of the online survey (mean age 37 ± 11 years, range 19-66, median 36). Half (52/101, 51%) of the men had been seen at a specialized academic center and 37/101 (37%) reported having had fertility-inducing treatment. A high percentage of CHH men experience psychosexual problems including difficulty with intimate relationships (70%) and body image concerns/body shame (94/101, 93%), and the percentage of men never having been sexually active is five times the rate in a reference group (26% vs. 5.4%, P < 0.001). Focus groups revealed persisting body shame and low self-esteem despite long-term treatment that has lasting impact on psychosexual functioning. CONCLUSIONS: CHH men frequently experience psychosexual problems that pose barriers to intimate relationships and initiating sexual activity. These lingering effects cause significant distress and are not ameliorated by long-term treatment. Psychosexual assessment in CHH men with appropriate psychological support and treatment should be warranted in these patients. Dwyer AA, Quinton R, Pitteloud N, and Morin D. Psychosexual development in men with congenital hypogonadotropic hypogonadism on long-term treatment: A mixed methods study. Sex Med 2015;3:32-41.

Principals barreres i motivacions per a la pràctica de l’activitat física de la població de 17 a 25 anys, a la localitat de Cardedeu

Actualment hi ha multitud d’estudis científics que demostren els beneficis que aporta a la nostra salut la pràctica regular d’activitat física, però aquest fet no genera per si sol uns nivells de pràctica suficients en la població. El present estudi s’emmarca en una investigació realitzada amb nois i noies d’entre 17 i 25 anys de la localitat de Cardedeu, sobre les diferents barreres i motivacions per a la pràctica d’activitat física de forma regular en aquest sector concret de la població. S’han analitzat els resultats obtinguts en l’aplicació dels qüestionaris ABPEF (Capdevila, 2005) i AMPEF (Capdevila, 2000) sobre una mostra formada per un total de 38 participants. En els resultats obtinguts destaquen les barreres relacionades amb la fatiga, la mandra, les obligacions i la falta de temps. Amb referència a motivacions més significatives trobem aquells ítems relacionats amb la salut, la imatge corporal, la diversió i el benestar.

Procesos oncológicos y afectación de la imagen corporal

El cáncer es una enfermedad de elevada incidencia que puede desencadenar diferentes modificaciones que afectan a la autopercepción de la imagen corporal y comprometer la calidad de vida del individuo. Objetivos: Analizar los cambios corporales que se derivan del proceso oncológico y de los tratamientos aplicables. Por otro lado, se pretende averiguar cómo repercuten dichos cambios en la calidad de vida del paciente, identificar las consecuencias psicológicas y analizar las posibles intervenciones enfermeras. Material y métodos: Revisión de la literatura a través de la consulta de diferentes bases de datos. Resultados: La localización del tumor es un factor atribuible a la afectación de la imagen corporal, siendo los tumores más visibles los que comportan un mayor impacto en el individuo. Por otro lado, los diferentes tratamientos antineoplásicos así como la propia progresión del proceso tumoral conllevan, en muchos casos, cambios importantes en la apariencia física del paciente que afectan a su bienestar psicológico. La enfermera tiene un papel primordial en la identificación y manejo de problemas relacionados con la imagen corporal de los pacientes oncológicos. Establecer una relación terapéutica basada en la confianza, ofrecer apoyo emocional, así como orientar sobre posibles recursos para disminuir el impacto de los cambios físicos, son algunas de las intervenciones que este colectivo puede realizar para mejorar la autoestima y facilitar la aceptación de la nueva imagen corporal. Conclusiones: Los cambios corporales derivados del proceso neoplásico o sus tratamientos provocan un fuerte impacto emocional en el paciente y alteran su calidad de vida. Por este motivo, es aconsejable la aplicación de medidas dirigidas a favorecer la adaptación del paciente a su nueva apariencia física, a través de una atención integral y personalizada. Palabras clave: imagen corporal, cáncer, cirugía, quimioterapia, calidad de vida, anorexia-caquexia.

Los trastornos del comportamiento alimentario y las ciencias: una mirada a las revistas científicas

La publicación de artículos científicos que tratan los trastornos del comportamiento alimentario (TCA) se ha incrementado en los últimos años y han experimentado un aumento significativo que puede ser atribuido a diferentes factores, entre ellos el surgimiento de nuevas publicaciones más selectivas y especializadas. La creciente investigación examina las preocupaciones de la imagen corporal y otras conductas asociadas, además de realizar investigaciones con diversos grupos poblacionales que incluyen a hispanos, asiáticos, europeos, etc. Este trabajo, muestra una revisión realizada a 136 artículos publicados en 67 revistas de ámbito internacional. Los artículos comprenden una selección realizada entre el año 2004 y el año 2008, como fruto de una revisión bibliográfica que sirvió de base para el desarro-llo del proyecto I+D denominado “La Publicidad de TV entre otros factores socioculturales influyentes en los TCA, estudio experimental y panel de expertos internacional” (2006-2010), proyecto del cual las autoras forman parte. En el artículo se concluye que existe una amplia tendencia a examinar los medios de comunicación y su influencia en los TCA y que las muestras tienden a utilizar a mujeres en su mayoría jóvenes, las cuales presentan un mayor grado de incidencia hacia los trastornos alimentarios que los hombres jóvenes. Se observó además que los investigadores detectan la sintomatología en grupos con una edad cada vez menor.

Frihetens möjligheter och den erfarande kroppen

Kirjallisuusarvostelu

Luteal phase of the menstrual cycle increases sweating rate during exercise

The present study evaluated whether the luteal phase elevation of body temperature would be offset during exercise by increased sweating, when women are normally hydrated. Eleven women performed 60 min of cycling exercise at 60% of their maximal work load at 32ºC and 80% relative air humidity. Each subject participated in two identical experimental sessions: one during the follicular phase (between days 5 and 8) and the other during the luteal phase (between days 22 and 25). Women with serum progesterone >3 ng/mL, in the luteal phase were classified as group 1 (N = 4), whereas the others were classified as group 2 (N = 7). Post-exercise urine volume (213 ± 80 vs 309 ± 113 mL) and specific urine gravity (1.008 ± 0.003 vs 1.006 ± 0.002) changed (P < 0.05) during the luteal phase compared to the follicular phase in group 1. No menstrual cycle dependence was observed for these parameters in group 2. Sweat rate was higher (P < 0.05) in the luteal (3.10 ± 0.81 g m-2 min-1) than in the follicular phase (2.80 ± 0.64 g m-2 min-1) only in group 1. During exercise, no differences related to menstrual cycle phases were seen in rectal temperature, heart rate, rate of perceived exertion, mean skin temperature, and pre- and post-exercise body weight. Women exercising in a warm and humid environment with water intake seem to be able to adapt to the luteal phase increase of basal body temperature through reduced urinary volume and increased sweating rate.

Correlates and outcomes of severe bullying: internalizing maladjustments of adolescent bullies, victims and bully- victims

The current study examined the association between involvement in bullying and victimization and internalizing difficulties such as self-esteem, social anxiety, depression and body image. Possible gender differences were also examined. The participants, high school students from Southern Ontario (N=533), were drawn from a larger, data set as part ofa study that was completed by the Youth Lifestyle Choices: Community Research Alliance (YLCCURA). The students completed a self-report questionnaire on a number ofmeasures; including, bullying, victimization, self-esteem, social anxiety, depression and body image. The results of this study suggest that those students who self-identified as victims and bully-victims also report higher levels of anxiety and depression than controls and bullies. Severe victims and bullyvictims had a lower body image than severe bullies and controls, whereas severe bullies seem to have a higher body image score than controls. These results are relevant when considering treatments and interventions for students experiencing adjustment difficulties who may also be at risk for bullying victimization. The results also suggest that particular attention needs to be focused on those adolescents who play multi-roles in bullying situations (i.e., bully-victims), since these students may come to the attention ofthe school system for externalizing behaviours, but may also need assistance for internalizing maladjustments.

Identifying the psychosexual implications of radical radiation treatment in prostate cancer

The purpose of this study was to determine whether there was any evidence of psychosexual morbidity among men who experienced radical radiation treatment for prostate cancer. With relatively little known or available retrospective data on the psychosexual implications of radical radiation treatment in men with prostate cancer, this study posited eight research questions which provided the basis for the research. Fifty men from Southern Ontario, between the ages of 52 to 78 years, were included in the study. They had been previously randomized to a clinical trial comparing radical radiation therapy by external beam radiation, or radical radiation using a combination of a temporary iridium implant plus external beam radiation, for localized or locally advanced prostate cancer. Assessment of sexual functioning, drive, attitudes, body image, and sexual satisfaction was drawn from a multidimensional approach, since psychosexuality was viewed as having an impact on biological, psychological, and sociological domains of functioning. Medical chart reviews, semi-structured interviews, demographical profiles of each participant, and the Derogatis Sexual Functioning Inventory (DSFI) were the methods used to collect data over a four-month period. Both quantitative and qualitative research methods were incorporated in the design and evaluation of the study. Frequencies, contingency analysis, Pearson's coefficient of correlation, t-tests, and ANOVA comprised the quantitative analysis. Data obtained from audio-taped interviews were analyzed qualitatively, and used for offering further insight and for facilitating the quantitative aspect of the analysis. Overall, there was sufficient evidence to suggest psychosexual morbidity among men who were treated with radiation therapy for prostate cancer. As well,there were a number of significant findings available to answer all of the posited research questions. The most significant findings were noted in post-treatment erectile ability and sexual activity. A post-treatment change in erectile ability was reported by eighty percent of men. Sixty percent of men noted a decrease in their ability to achieve an erection by reporting some morning stiffness only, penile rigidity insufficient for penetration, decreased control of erection, and loss of spontaneous erection. Other contributing factors associated with change in erectile status were: pain or altering sensation of orgasm, blood in ejaculate, pain and decreased amount of ejaculate, and penile numbness or pain. Eighty-two percent of men experienced a post-treatment change in sexual function, primarily due to the impact of decreasing erectile status. Only seven men reported that they experienced a decrease in desire mentally, whereas the vast majority did not experience any change in desire. Changes in foreplay, stress with optimal sexual positioning, and reduced spontaneity of sex, were other factors reported with the changes in sexual activity. The findings in this study broaden our understanding of what middle- to later-aged men feel and experience as they venture onward following treatment. This was the first study that evaluated available prospective data on pre-treatment erectile status and sexual activity. As well, this study was the first (with participant compliance rates of 100 percent) to have included an interview format to capture the views of such a large number of men. This study concluded with recommendations and implications for future research and practice as we move in the direction of understanding what is necessary for preserving psychosexual well being and enhancing quality of life in men treated with radiation therapy for prostate cancer.

Risk-taking behaviours in adolescent boys and girls : sexuality and dietary health

This study examined adolescents' reported sexual and dietary health-risk behaviours and perceptions. Specifically, this study analyzed the data of 600 students (300 male~ 300 female) in grades 9, I 1, and OAC (mean, standard deviation). The mean age of the students in the sample is 16 with a standard deviation of 1.6. The study was a secondary analysis ofthe first-year data of a 3-year longitudinal study conducted by Youth Lifestyle Choices-Community University Research Alliance (YLC-CURA) on adolescents. To explore sexuality and dietary health, this study purposefully selected sections of the survey that represented sex and dieting behaviours of adolescents. Separate gender and age data analyses revealed different patterns among the variables. Specifically., findings revealed that adolescents who engaged in recent sexual activities were more likely to have a relatively more positive body image perception and were relatively more likely to engage in disordered eating. Across both genders and 3 age levels, adolescents reported that despite their unhealthy dietary habits they felt that dieting was not a high-risk behaviour. Results were discussed in terms of educational implication for sexual health programs.

Bullying in physical education : its prevalence & impact on the intention to continue secondary school physical education

The purpose of this study was to determine the prevalence of bullying in physical education and its influence on students' intention to participate in the class in the future. Additionally, the study researched the relationship between bullying and body image as well as bullying and physical competency in physical education. A survey was utilized that collected both quantitative and qualitative data about students' experiences in physical education. Two-hundred and thirty-four grade 10 students (144 female and 90 male) from 8 different secondary schools participated in the study. Data analyses were completed using the Statistical Package for the Social Sciences (SPSS) version 16.0. Results showed thaLapproximately 18.3% of respondents had .experienced physical bullying in physical education; 23.7% had experienced verbal bullying; and 20.4% experienced social bullying. Furthermore, those who experienced frequent bullying in physical education did not intend on taking the class in the future. The relationship between body image and bullying was not found to be significant. However, physical competence was found to significantly predict bullying in physical education. These results show how prevalent bullying is in physical education classes and how it negatively impacts future participation in the class.

Évolution de la qualité de vie des personnes amputées d'un membre inférieur suite à une réadaptation fonctionnelle

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal.

Les déterminants du comportement alimentaire de jeunes hommes gais

Introduction : Cette étude visait à explorer les déterminants des choix alimentaires de jeunes hommes gais. L’objectif secondaire était d’explorer la perception des hommes gais à l’égard du comportement alimentaire des hommes hétérosexuels. Méthode : Une méthode qualitative s’appuyant sur la prise de photographies et d’entrevues individuelles semi-dirigées a été utilisée. Résultats : Onze hommes gais de 21 à 25 ans et habitant en appartement dans la région de Montréal ont participé à l’étude. L’apparence corporelle, la santé et la nutrition sont des facteurs très influents de leur comportement alimentaire. Les hommes de la cohorte soutiennent la perception que ces facteurs n’influencent pas aussi fortement le comportement alimentaire des hommes hétérosexuels. Ils sont de grands consommateurs de cuisine hors domicile. Plusieurs d’entre eux limitent leur consommation de viande, un aliment qu’ils considèrent masculin et fortement lié aux hommes hétérosexuels. Conclusion : Le comportement alimentaire des jeunes hommes de cette cohorte est influencé par plusieurs facteurs qui ne sont habituellement pas associés aux hommes, dont l’apparence corporelle, la santé et la nutrition. Ils sont au fait de cette dichotomie en se comparant à leurs proches hétérosexuels. Si les professionnels de la santé négligent ces facteurs, ils risquent de passer à côté de leviers d’intervention efficaces.