Expectations, needs and mid-term outcomes in people accessing to secondary findings from ES: 1st French mixed study (FIND Study).

Generation and subsequently accessibility of secondary findings (SF) in diagnostic practice is a subject of debate around the world and particularly in Europe. The French FIND study has been set up to assess patient/parent expectations regarding SF from exome sequencing (ES) and to collect their real-life experience until 1 year after the delivery of results. 340 patients who had ES for undiagnosed developmental disorders were included in this multicenter mixed study (quantitative N = 340; qualitative N = 26).

Patient satisfaction, experience and preferences in the implementation of genetics teleconsultations in the North-eastern region of France.

Introduction: In France, few centres per region offer genetics consultations. Consequently, each centre covers a large area, often requiring patients to take a day off to travel long distances. In certain situations, genetic counselling in particular, a physical exam is not required.

Advancing precision oncology through systematic germline and tumor genetic analysis: The oncogenetic point of view on findings from a prospective multicenter clinical trial of 666 patients.

Introduction: With the emergence of targeted therapies, there is a need to accurately identify more tumor biomarkers. The EXOMA trial was designed to offer tumor and germline exome sequencing (ES) to patients with solid malignant tumors and facing therapeutic failure. As hereditary cancer predispositions could be identified, with genetic counseling and health management implications, a genetic consultation was systematically established.

Prognosis of Adults With Isolated Left Ventricular Non-Compaction: Results of a Prospective Multicentric Study.

Background: Whether left ventricular non-compaction (LVNC) bears a different prognosis than dilated cardiomyopathy (DCM) is still a matter of debate.

Methods: From a multicenter French prospective registry, we compared the outcomes of 98 patients with LVNC and 65 with DCM. The primary endpoint combined cardiovascular death, heart transplantation, and hospitalization for cardiovascular events.

Phenotype/Genotype Relationship in Left Ventricular Noncompaction: Ion Channel Gene Mutations Are Associated With Preserved Left Ventricular Systolic Function and Biventricular Noncompaction: Phenotype/Genotype of Noncompaction.

Background: Few data exist concerning genotype-phenotype relationships in left ventricular noncompaction (LVNC).

Methods And Results: From a multicenter French Registry, we report the genetic and clinical spectrum of 95 patients with LVNC, and their genotype-phenotype relationship. Among the 95 LVNC, 45 had at least 1 mutation, including 14 cases of mutation in ion channel genes.

Incidental findings in a series of 2500 gene panel tests for a genetic predisposition to cancer: Results and impact on patients.

With next generation sequencing, physicians are faced with more complex and uncertain data, particularly incidental findings (IF). Guidelines for the return of IF have been published by learned societies. However, little is known about how patients are affected by these results in a context of oncogenetic testing.

Psychosocial Impact of Predictive Genetic Testing in Hereditary Heart Diseases: The PREDICT Study.

Predictive genetic testing (PGT) is offered to asymptomatic relatives at risk of hereditary heart disease, but the impact of result disclosure has been little studied. We evaluated the psychosocial impacts of PGT in hereditary heart disease, using self-report questionnaires (including the State-Trait Anxiety Inventory) in 517 adults, administered three times to the prospective cohort (PCo: = 264) and once to the retrospective cohort (RCo: = 253). The main motivations for undergoing PGT were "to remove doubt" and "for their children".

How equitable is access to treatment for lung cancer patients? A population-based review of treatment practices in Ontario.

Aim: Guideline concordance is one of the metrics used by the Cancer Quality Council of Ontario and Cancer Care Ontario to assess the quality of cancer care and to drive quality improvement.

Materials & Methods: The rates for lung cancer surgical resection and concordance with the Cancer Care Ontario postoperative adjuvant chemotherapy (AC) guideline were assessed by health region during two time periods (2010-2011 and 2012-2013) according to five equity measures (age, sex, neighborhood income, location of residence and size of immigrant population).

Results: Of the patients with stage I/II NSCLC, 52.

Secondary findings from whole-exome/genome sequencing evaluating stakeholder perspectives. A review of the literature.

With the development of next generation sequencing, beyond identifying the cause of manifestations that justified prescription of the test, other information with potential interest for patients and their families, defined as secondary findings (SF), can be provided once patients have given informed consent, in particular when therapeutic and preventive options are available. The disclosure of such findings has caused much debate. The aim of this work was to summarize all opinion-based studies focusing on SF, so as to shed light on the concerns that this question generate.

Multigene expression profile testing in breast cancer: is there a role for family physicians?

Background: Family physicians (fps) play a role in aspects of personalized medicine in cancer, including assessment of increased risk because of family history. Little is known about the potential role of fps in supporting cancer patients who undergo tumour gene expression profile (gep) testing.

Methods: We conducted a mixed-methods study with qualitative and quantitative components.

Primary care providers' experiences with and perceptions of personalized genomic medicine.

Objective: To assess primary care providers' (PCPs') experiences with, perceptions of, and desired role in personalized medicine, with a focus on cancer.

Design: Qualitative study involving focus groups.

Setting: Urban and rural interprofessional primary care team practices in Alberta and Ontario.

Public engagement in priority-setting: results from a pan-Canadian survey of decision-makers in cancer control.

Decision-makers are challenged to incorporate public input into priority-setting decisions. We conducted a pan-Canadian survey of decision-makers in cancer control to investigate the types of evidence, especially evidence supplied by the public, that are utilized in health care priority-setting. We further examined how normative attitudes and contextual factors influence the use of public engagement as evidence at the committee level.

Real world costs and cost-effectiveness of Rituximab for diffuse large B-cell lymphoma patients: a population-based analysis.

Background: Current treatment of diffuse-large-B-cell lymphoma (DLBCL) includes rituximab, an expensive drug, combined with cyclophosphamide, doxorubicin, vincristine, and prednisone (CHOP) chemotherapy. Economic models have predicted rituximab plus CHOP (RCHOP) to be a cost-effective alternative to CHOP alone as first-line treatment of DLBCL, but it remains unclear what its real-world costs and cost-effectiveness are in routine clinical practice.

Methods: We performed a population-based retrospective cohort study from 1997 to 2007, using linked administrative databases in Ontario, Canada, to evaluate the costs and cost-effectiveness of RCHOP compared to CHOP alone.

The value of collecting population-based cancer stage data to support decision-making at organizational, regional and population levels.

The stage of a patient's cancer at diagnosis is essential to predict the prognosis and plan the treatment. Since 2008, stage data have been collected on all Ontario patients with breast, colorectal, lung and prostate cancers and are linked to other data collected by Cancer Care Ontario. Here, an analysis of such data is presented.

Closing the quality loop: facilitating improvement in oncology practice through timely access to clinical performance indicators.

Purpose: Health care organizations and professionals are being called on to develop clear and transparent measures of quality and to demonstrate the application of the data to performance improvement at the system and provider levels.

Materials And Methods: Cancer Care Ontario (CCO) initiated a pathology reporting project aimed at improving the quality of cancer pathology by standardizing the content, format, and transmission of reports to a central registry and enabling the information to be available for planning, quality measurement, and quality improvement. This population-based quality-improvement project involved more than 400 Ontario pathologists and more than 100 hospitals.

Improving the quality of lung cancer care in Ontario: the lung cancer disease pathway initiative.

Background: Before 2008, Cancer Care Ontario (CCO) undertook provincial cancer control quality-improvement initiatives on a programmatic basis. CCO has now added Disease Pathway Management (DPM) to its quality improvement strategy, with the intent of achieving high-quality care, processes, and patient experience across the patient pathway for specific cancers.

Objectives: The three goals of DPM are: to describe and share evidence-based best practice along the cancer continuum for specific cancers; identify quality-improvement priorities for specific cancers and catalyze action; monitor performance against best practice for specific cancers.

Standardized synoptic cancer pathology reports - so what and who cares? A population-based satisfaction survey of 970 pathologists, surgeons, and oncologists.

Context: Cancer Care Ontario implemented synoptic pathology reporting across Ontario, impacting the practice of pathologists, surgeons, and medical and radiation oncologists. The benefits of standardized synoptic pathology reporting include enhanced completeness and improved consistency in comparison with narrative reports, with reported challenges including increased workload and report turnaround time.

Objective: To determine the impact of synoptic pathology reporting on physician satisfaction specific to practice and process.

The crucial role of clinician engagement in system-wide quality improvement: the Cancer Care Ontario experience.

In 2004, Cancer Care Ontario's (CCO) role changed from providing direct cancer service to oversight, with a mission to improve the performance of the cancer system by driving quality, accountability and innovation in all cancer-related services. Since then, CCO has built a model for province-wide quality improvement and oversight--the Performance Improvement Cycle--that exemplifies the key elements of the Excellent Care for All Act, 2010. While ensuring that quality of the cancer system is by necessity a continuous process, the approach taken thus far has achieved measurable results and will continue to form the basis of CCO's future work.

A ten-year history: the Cancer Quality Council of Ontario.

One of the longest-established quality oversight organizations in Canadian healthcare, the Cancer Quality Council of Ontario (CQCO) is an advisory group formed in 2002 by the Ministry of Health and Long-Term Care. Although quasi-independent from Cancer Care Ontario (CCO), the council was established to provide advice to CCO and the ministry in their efforts to improve the quality of cancer care in the province. The council is composed of a multidisciplinary group of healthcare providers, cancer survivors and experts in the areas of oncology, health system policy and administration, governance, performance measurement and health services research.

Determining resource intensity weights in ambulatory chemotherapy related to nursing workload.

Ontario cancer programs aim to deliver high-quality nursing care and treatment that is safe for patients and staff. The reality of health care is that financial constraints, inherent in the delivery of care, require that funding mechanisms count not only the cost of drugs, but factors such as pharmacy and nursing human resource costs. While some organizations have developed patient classification systems to measure nursing intensity and workload, these systems apply primarily to inpatient populations, and are fraught with numerous challenges, such as the need for nurses to document to justify the workload required for care.

Impact of manure phosphorus fractions on phosphorus loss from manured soils after incubation.

The risk of P loss from manured soils is more related to P fractions than total P concentration in manure. This study examined the impact of manure P fractions on P losses from liquid swine manure- (LSM), solid cattle manure- (SCM), and monoammonium phosphate- (MAP) treated soils. Manure or fertilizer was applied at 50 mg P kg soil, mixed, and incubated at 20°C for 6 wk to simulate the interaction between applied P and soil when P is applied well in advance of a high risk period for runoff.

Quality improvement in cancer symptom assessment and control: the Provincial Palliative Care Integration Project (PPCIP).

Context: The Provincial Palliative Care Integration Project (PPCIP) was implemented in Ontario, Canada, to enhance the quality of palliative care delivery. The PPCIP promoted collaboration and integration across service sectors to improve screening and assessment, palliative care processes, as well as clinician practice and outcomes for cancer patients.

Objectives: The project involved 1) implementation of the Edmonton Symptom Assessment System (ESAS) for symptom screening, 2) use of "rapid-cycle change" quality improvement processes to improve screening and symptom management, and 3) improvements in integration and access to palliative care services.

Access to cancer drugs in Canada: looking beyond coverage decisions.

Objective: To examine variation in patients' access to a set of cancer drugs through publicly funded provincial drug programs.

Data Sources/study Design: We surveyed provincial drug program managers about their highest-expenditure intravenous and oral cancer drugs. We then investigated whether the same cancer drugs account for the highest expenditures across the provincial programs.