The capacity to document and assess the types as well as the severity of aggressive behaviour is thus critical, not only to better understand the correlates of various types of behaviours but also to orient intervention programmes whether they be prevention, assessment, monitoring or management of aggressive behaviour.
BackgroundPatients 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.MethodsA 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.Results105 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.ConclusionThe 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.
The ATTID can be used to measure attitudes among different populations and allows comparisons over time within the same population as a function of various intervention strategies for de-stigmatising ID.
Some studies have reported the presence of health disparities in people with intellectual disability. This study compared the prevalence of chronic health conditions between people with and without intellectual disability (ID). Health-related data for 791 people with ID were collected through a province-wide mail survey in Quebec, Canada. The distribution of chronic health conditions reported was compared to the data on the health status of the general population. People with ID had higher reported rates of heart disease and thyroid disorder than the general population. We also found that people with ID were less likely to report suffering from arthritis, migraines, back or spinal pain, and food allergies. Significant health differences were found when the ID sample was stratified by etiology (i.e., Down syndrome) and severity of intellectual deficits. We discuss these results and the need for future research to understand the differences found in the health status of people with ID.
Background: This study aimed at evaluating face and content validity, feasibility and reliability of process quality indicators developed previously in the United States or other countries. The indicators can be used to evaluate care and services for vulnerable older adults affected by cognitive impairment or dementia within an integrated service system in Quebec, Canada.
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