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1.
J Pers Med ; 13(7)2023 Jun 23.
Artículo en Inglés | MEDLINE | ID: mdl-37511646

RESUMEN

Precision medicine programs aim to utilize novel technologies to identify personalized treatments for children with cancer. Delivering these programs requires interdisciplinary efforts, yet the many groups involved are understudied. This study explored the experiences of a broad range of professionals delivering Australia's first precision medicine trial for children with poor-prognosis cancer: the PRecISion Medicine for Children with Cancer (PRISM) national clinical trial of the Zero Childhood Cancer Program. We conducted semi-structured interviews with 85 PRISM professionals from eight professional groups, including oncologists, surgeons, clinical research associates, scientists, genetic professionals, pathologists, animal care technicians, and nurses. We analyzed interviews thematically. Professionals shared that precision medicine can add complexity to their role and result in less certain outcomes for families. Although many participants described experiencing a greater emotional impact from their work, most expressed very positive views about the impact of precision medicine on their profession and its future potential. Most reported navigating precision medicine without formal training. Each group described unique challenges involved in adapting to precision medicine in their profession. Addressing training gaps and meeting the specific needs of many professional groups involved in precision medicine will be essential to ensure the successful implementation of standard care.

2.
BMJ Support Palliat Care ; 7(3): 251-254, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-28255069

RESUMEN

: Sexual well-being is often significantly affected by cancer and its treatments. Previous research shows that a patient's sexual well-being is often overlooked in clinical practice. OBJECTIVES: The aims of this study were twofold. First, to determine the current practice of healthcare professionals (HCPs) working with cancer and palliative care patients in primary and secondary care settings in relation to sexual well-being. Second, to determine the education requirements of HCPs regarding the management of sexual well-being concerns of cancer/palliative care patients. METHODS: An anonymous electronic questionnaire was sent to assess current practice and education needs relating to the management of sexual well-being in cancer and palliative care. RESULTS: The majority of HCPs did not routinely assess sexual well-being in cancer and palliative care patients, with only 13.8% of secondary care staff, 7.9% of district nurses and 4% of general practitioners (GPs) routinely assessing it. The most frequent reason for non-assessment was that it was not the presenting symptom. The majority of respondents felt further support and training would be of benefit, including knowledge of specialist services patients could be referred to, written information for patients and access to assessment tools. CONCLUSIONS: This survey identified that sexual well-being in cancer and palliative care patients is not routinely assessed with the majority of respondents stating that further support and training would be beneficial. The results of this questionnaire will be used to inform and develop sexual well-being training for HCPs working with cancer and palliative care patients.


Asunto(s)
Capacitación en Servicio , Neoplasias/terapia , Cuidados Paliativos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Disfunciones Sexuales Fisiológicas/terapia , Necesidades y Demandas de Servicios de Salud , Humanos , Internet , Neoplasias/complicaciones , Disfunciones Sexuales Fisiológicas/complicaciones , Encuestas y Cuestionarios , Gales
3.
Can J Public Health ; 107(1): e62-e67, 2016 06 27.
Artículo en Inglés | MEDLINE | ID: mdl-27348112

RESUMEN

OBJECTIVES: Gastroschisis is a serious birth defect of the abdominal wall that is associated with mortality and significant morbidity. Our understanding of the factors causing this defect is limited. The objective of this paper is to describe the geographic variation in incidence of gastroschisis and characterize the spatial pattern of all gastroschisis cases in Canada between 2006 and 2011. Specifically, we aimed to ascertain the differences in spatial patterns between geographic regions and identify significant clusters and their location. METHODS: The study population included 641 gastroschisis cases from the Canadian Pediatric Surgery Network (CAPSNet) database, a population-based dataset of all gastroschisis cases in Canada. Cases were geocoded based on maternal residence. Using Statistics Canada live-birth data as a denominator, the total prevalence of gastroschisis was calculated at the provincial/territorial levels. Random effects logistic models were used to estimate the rates of gastroschisis in each census division. These rates were then mapped using ArcGIS. Cluster detection was performed using Local Indicators of Spatial Association (LISA). RESULTS: There is significant spatial heterogeneity of the rate of gastroschisis across Canada at both the provincial/territorial and census-division level. The Yukon, Northwest Territories and Prince Edward Island have higher overall rates of gastroschisis relative to other provinces/territories. Several census divisions in Alberta, Manitoba, Saskatchewan, Ontario, Northwest Territories and British Columbia demonstrated case "clusters", i.e., focally higher rates in discrete areas relative to surrounding areas. CONCLUSIONS: There is clear evidence of spatial variation in the rates of gastroschisis across Canada. Future research should explore the role of area-based variables in these patterns to improve our understanding of the etiology of gastroschisis.


Asunto(s)
Gastrosquisis/epidemiología , Análisis Espacial , Canadá/epidemiología , Análisis por Conglomerados , Estudios Transversales , Humanos , Incidencia , Lactante
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