Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS' Strategic Clinical Networks. It also describes recent efforts to build AHS' patient and family engagement capacity by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for health leaders.
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http://dx.doi.org/10.1177/0840470417747003 | DOI Listing |
Breast Cancer Res Treat
January 2025
Department of Breast Surgery, Fujian Medical University Union Hospital, Fuzhou, 350001, Fujian , China.
Purpose: Age stratification influences the clinicopathological features and survival outcomes of breast cancer. We aimed to understand the effect of age on gene variants in young Chinese women with breast cancer compared with those from The Cancer Genome Atlas (TCGA).
Methods: Enrolled patients ≤ 40 years old (N = 370) underwent germline or somatic genetic testing using a 32-gene hereditary cancer panel at Fujian Union Hospital.
Breast Cancer Res Treat
January 2025
Division of Medical Oncology, Department of Medicine, Samuel Oschin Comprehensive Cancer Institute, 8700 Beverly Blvd., Los Angeles, CA, 90048, USA.
Purpose: There is an increasing incidence of young breast cancer (YBC) patients with uncertainty surrounding the factors and patterns that are contributing.
Methods: We obtained characteristics and survival data from 206,156 YBC patients (≤ 40 years of age) diagnosed between 2005 and 2019 from the National Cancer Database (NCDB). Patients were subdivided into two comparison groups based on year of diagnosis (2005-2009, Old vs.
J Pediatr Health Care
January 2025
Behavioral and mental health (BMH) issues are increasing in adolescents as shortages of primary care and BMH providers are also rising. The healthcare burden has fallen especially hard on primary care providers (PCPs), who are showing increasing signs of burnout and making plans to reduce their work hours or leave the profession altogether. These factors impede their ability to be the first line of defense in providing emotional support to children and families.
View Article and Find Full Text PDFAnn Surg Oncol
January 2025
Department of Surgery, Duke University Medical Center, Durham, NC, USA.
Background: Bilateral risk-reducing mastectomies (RRMs) have been proven to decrease the risk of breast cancer in patients at high risk owing to family history or having pathogenic genetic mutations. However, few resources with consolidated data have detailed the patient experience following surgery. This systematic review features patient-reported outcomes for patients with no breast cancer history in the year after their bilateral RRM.
View Article and Find Full Text PDFEur J Hum Genet
January 2025
Institute of Bioinformatics, International Technology Park, Bangalore, 560066, India.
Mitochondrial membrane protein-associated neurodegeneration (MPAN) is a rare neurodegenerative disorder characterized by spastic paraplegia, parkinsonism and psychiatric and/or behavioral symptoms caused by variants in gene encoding chromosome-19 open reading frame-12 (C19orf12). We present here seven patients from six unrelated families with detailed clinical, radiological, and genetic investigations. Childhood-onset patients predominantly had a spastic ataxic phenotype with optic atrophy, while adult-onset patients were presented with cognitive, behavioral, and parkinsonian symptoms.
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