Dataset Information

Support, information, and integration of genetics for children with congenital lower limb deficiencies in British Columbia, Canada.

ABSTRACT: Objectives:Children and families affected by congenital limb deficiencies (CLD) require a unique level of emotional support from diagnosis through to adolescence. The following study aims to collect data on Canadian paediatric patients affected by a CLD followed at BC Children's Hospital (BCCH), Department of Orthopaedics. Methods:Parents of children with a CLD were asked to complete a written questionnaire examining their experiences. Qualitative and quantitative data were collected concerning parent satisfaction with patient referrals, emotional support, and knowledge of their child's diagnosis. Results:Twenty-five completed questionnaires were returned. Fifty per cent of the parents reported they were either very satisfied, or satisfied, with the emotional support provided by health care providers (HCPs). Twenty-five per cent of the parents were unsatisfied with the emotional support received by HCPs. Forty-eight per cent of the parents could not recall the specific name of their child's diagnosis; 20% of the parents reported their child did not have diagnosis. All the patients in our study had received a clinical diagnosis. Twenty-eight per cent of the parents in this study were also seen in medical genetics. Conclusions:Families require additional resources for emotional support, peer support, and referrals to support organizations. Gaps in parent knowledge regarding their child's CLD suggest the need for formalized communication strategies for HCPs. Furthermore, patients with CLDs and their families may benefit from improved communication between orthopaedic and medical genetic services at the time of diagnosis. Integration of genetic counsellors may improve emotional supports and education for families with regards to testing and reproductive planning.

SUBMITTER: Campbell T

PROVIDER: S-EPMC6735581 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Support, information, and integration of genetics for children with congenital lower limb deficiencies in British Columbia, Canada.

Campbell Teresa T Chen Ching-Yi Jenny CJ Chhina Harpreet H Chahal Rajpreet R Cooper Anthony A Elliott Alison M AM

Paediatrics & child health 20190212 6

<h4>Objectives</h4>Children and families affected by congenital limb deficiencies (CLD) require a unique level of emotional support from diagnosis through to adolescence. The following study aims to collect data on Canadian paediatric patients affected by a CLD followed at BC Children's Hospital (BCCH), Department of Orthopaedics.<h4>Methods</h4>Parents of children with a CLD were asked to complete a written questionnaire examining their experiences. Qualitative and quantitative data were collec ...[more]

PMID: 31528111

Similar Datasets

Project description:BACKGROUND:There are a range of perceived gaps and shortcomings in the publicly funded Canadian health system. These include wait times for care, lack of public insurance coverage for dental care and pharmaceuticals, and difficulties accessing specialist care. Medical crowdfunding is a response to these gaps where individuals raise funds from their social networks to address health-related needs. OBJECTIVE:This study aimed to investigate the potential of crowdfunding data to better understand what health-related needs individuals are using crowdfunding for, how these needs compare with the existing commentary on health system deficiencies, and the advantages and limitations of using crowdfunding campaigns to enhance or augment our understanding of perceived health system deficiencies. METHODS:Crowdfunding campaigns were scraped from the GoFundMe website. These campaigns were then limited to those originating in the metropolitan Vancouver region of two health authorities during 2018. These campaigns were then further limited to those raising funds to allow the treatment of a medical problem or related to needs arising from ill health. These campaigns were then reviewed to identify the underlying health issue and motivation for pursuing crowdfunding. RESULTS:We identified 423 campaigns for health-related needs. These campaigns requested CAD $8,715,806 (US $6,088,078) in funding and were pledged CAD $3,477,384 (US $2,428,987) from 27,773 donors. The most common underlying medical condition for campaign recipients was cancer, followed by traumatic injuries from collisions and brain injury and stroke. By far, the most common factor of motivation for crowdfunding was seeking financial support for wages lost because of illness (232/684, 33.9%). Some campaigns (65/684, 9.5%) sought help with purchasing medical equipment and supplies; 8.2% (56/684) sought to fund complementary, alternative, or unproven treatments including experimental interventions; 7.2% (49/684) sought financial support to cover travel-related costs, including in-province and out-of-province (49/684, 7.2%) travel; and 6.3% (43/684) campaigns sought help to pay for medication. CONCLUSIONS:This analysis demonstrates the potential of crowdfunding data to present timely and context-specific user-created insights into the perceived health-related financial needs of some Canadians. Although the literature on perceived limitations of the Canadian health system focuses on wait times for care and limited access to specialist services, among other issues, these campaigners were much more motivated by gaps in the wider social system such as costs related to unpaid time off work and travel to access care. Our findings demonstrate spatial differences in the underlying medical problems, motivations for crowdfunding, and success using crowdfunding that warrants additional attention. These differences may support established concerns that medical crowdfunding is most commonly used by individuals from relatively privileged socioeconomic backgrounds. We encourage the development of new resources to harness the power of crowdfunding data as a supplementary source of information for Canadian health system stakeholders.

Project description:Legionella spp. present in some human-made water systems can cause Legionnaires' disease in susceptible individuals. Although legionellae have been isolated from the natural environment, variations in the organism's abundance over time and its relationship to aquatic microbiota are poorly understood. Here, we investigated the presence and diversity of legionellae through 16S rRNA gene amplicon and metagenomic sequencing of DNA from isolates collected from seven sites in three watersheds with varied land uses over a period of 1 year. Legionella spp. were found in all watersheds and sampling sites, comprising up to 2.1% of the bacterial community composition. The relative abundance of Legionella tended to be higher in pristine sites than in sites affected by agricultural activity. The relative abundance levels of Amoebozoa, some of which are natural hosts of legionellae, were similarly higher in pristine sites. Compared to other bacterial genera detected, Legionella had both the highest richness and highest alpha diversity. Our findings indicate that a highly diverse population of legionellae may be found in a variety of natural aquatic sources. Further characterization of these diverse natural populations of Legionella will help inform prevention and control efforts aimed at reducing the risk of Legionella colonization of built environments, which could ultimately decrease the risk of human disease. IMPORTANCE Many species of Legionella can cause Legionnaires' disease, a significant cause of bacterial pneumonia. Legionella in human-made water systems such as cooling towers and building plumbing systems are the primary sources of Legionnaires' disease outbreaks. In this temporal study of natural aquatic environments, Legionella relative abundance was shown to vary in watersheds associated with different land uses. Analysis of the Legionella sequences detected at these sites revealed highly diverse populations that included potentially novel Legionella species. These findings have important implications for understanding the ecology of Legionella and control measures for this pathogen that are aimed at reducing human disease.

Project description:Using data from the Canadian Integrated Program for Antimicrobial Resistance Surveillance (CIPARS), we aimed to describe trends in antimicrobial use (AMU) in broiler chickens and turkeys, to compare AMU across species, to compare with trends in antimicrobial resistance (AMR), and to assess the effects of various AMU/AMR units of measurement (metrics and indicators) on data integration. Data on AMU and AMR in enteric bacteria, collected from 2013 to 2017 from broiler chickens (n = 143 flocks) and turkeys (n = 145) were used. In broiler chickens, the total AMU in milligrams/population correction unit (mg/PCUBr) decreased by 6%, the number (n) of defined daily doses for animals using Canadian standards (nDDDvetCA) per 1,000 broiler chicken-days decreased by 12%, and nDDDvetCA/PCU decreased by 6%. In turkeys, the mg/PCUTk decreased by 1%, whereas the nDDDvetCA/1,000 turkey-days and the nDDDvetCA/PCU increased by 1 and 5%, respectively. The types of antimicrobial classes used in both species were similar. Using the frequency of flocks reporting use (i.e., number of flocks reporting use/number of flocks participating) as a measurement, the use of certain antimicrobials changed over time (e.g., Broilers, decreased cephalosporin use, virginiamycin use, emerging use of lincomycin-spectinomycin, and avilamycin; Turkeys: increased trimethoprim-sulfonamides and macrolide use). The trends in resistance to specific antimicrobials paralleled the frequency and quantity of use (e.g., ceftriaxone use decreased-ceftriaxone resistance decreased, and gentamicin use increased-gentamicin resistance increased) in some situations, but not others (decreased fluoroquinolone use-increased ciprofloxacin resistance). AMR data were summarized using the AMR indicator index (AMR Ix). The most notable AMR Ix trend was the decrease in ceftriaxone AMR Ix among Escherichia coli (0.19 to 0.07); indicative of the success of the poultry industry action to eliminate the preventive use of third generation cephalosporins. Other trends observed were the increase in ciprofloxacin AMR Ix among Campylobacter from 0.23 to 0.41 and gentamicin AMR Ix among E. coli from 0.11 to 0.22, suggestive of the persistence/emergence of resistance related to previous and current AMU not captured in our surveillance timeframe. These data highlight the necessity of multiple AMU and AMR indicators for monitoring the impact of stewardship activities and interventions.

Dataset Information

Support, information, and integration of genetics for children with congenital lower limb deficiencies in British Columbia, Canada.

Publications

Support, information, and integration of genetics for children with congenital lower limb deficiencies in British Columbia, Canada.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets