Understanding Ovarian Cancer Patients’ Information Needs About Genetic Testing to Inform Intervention Design (Preprint)

2021 ◽  
Author(s):  
Yan Zhang ◽  
Siqi Yi ◽  
Ciaran B. Trace ◽  
Marian Yvette Williams-Brown
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Online Community ◽  
Information Needs ◽  
Cancer Genetics ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Medical Test ◽  
Related Information ◽  
To Receive

BACKGROUND All patients with invasive or high-grade ovarian cancer (OC) are recommended to take genetic testing (GT). However, the GT uptake rate among OC patients remains inadequate. The existing genetic counseling (GC) falls short in adequately addressing this challenge. Communication of information concerning cancer genetics and genetic services to patients needs to be improved to address patients’ GT-related literacy gaps and risk concerns. OBJECTIVE The study aims to investigate OC patients’ GT-related information needs to inform the design of interactive technology-based interventions that can enhance patients’ knowledge of GT and cancer genetics. METHODS We interviewed 20 OC patients who had taken GT and gathered GT-related messages from an active OC online community. The interview transcripts and online community messages were analyzed using the qualitative content analysis method. RESULTS Data analyses produced a comprehensive taxonomy of OC patients’ GT-related information needs, which includes five major topic clusters: knowledge of GT as a medical test, GT process, GT’s implications for patients, implications for family members, and medical terminologies. Patients want to receive information that is relevant, understandable, concise, usable, appropriate, hopeful, and accessible when needed. They prefer different channels to receive information, including interactive internet-based technologies, print, and conversations with healthcare providers. CONCLUSIONS OC patients need a range of information to address uncertainties and challenges that they encounter while taking GT. Their preferences for channels to receive information varied widely. A multi-channel information delivery solution that supplements the existing GC is needed to effectively deliver such interventions to meet OC patients’ GT-related information needs.

scholarly journals Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services

2021 ◽  
Author(s):  
Rhiannon Edge ◽  
Carolyn Mazariego ◽  
Zhicheng Li ◽  
Karen Canfell ◽  
Annie Miller ◽  
...  
Keyword(s):  
Content Analysis ◽  
Real Time ◽  
Cancer Patients ◽  
Online Community ◽  
Information Needs ◽  
Healthcare Providers ◽  
Service Demand ◽  
Cancer Support ◽  
Cancer Council ◽  
Psychosocial Impacts

Abstract Purpose This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. Methods Using real-time insights from two Cancer Council NSW services—131120 Information and Support Line and Online Community (CCOC) forums—we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. Results In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. Conclusions The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

EMR documentation of genetics evaluations in patients with ovarian cancer.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e13156-e13156
Author(s):  
Payal Deepak Shah ◽  
Heather Symecko ◽  
Melissa Batson ◽  
Stacy Pundock ◽  
Neil Rustgi ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Family History ◽  
Cancer Genetics ◽  
Retrospective Chart Review ◽  
University Of Pennsylvania ◽  
Study Cohort ◽  
Problem List ◽  
Clinical Diagnoses ◽  
History Of

e13156 Background: Genetic testing for hereditary cancer predisposition has become increasingly complex yet impactful. Provider knowledge of test results influences risk management, implications for family members, and therapeutics. Currently, it’s unknown if genetic test (GT) results are appropriately recorded and accessible within the electronic medical record (EMR). Methods: We conducted a single-institution retrospective chart review to examine clinical diagnoses, family history of cancer, genetics referrals, and genetics services received at University of Pennsylvania’s Cancer Risk Evaluation Program (CREP) or elsewhere. The study cohort included new and prevalent cases of ovarian cancer (OC) seen by either a gynecologic or medical oncologist at the University of Pennsylvania in 2016. Analyses were conducted using SAS 9.4. Results: 667 women (83% white, 9% black, 4% Asian; mean age 61) with OC were included. 58% had a documented family history of breast, ovarian, prostate or pancreas cancer. 48% had documentation of referral to genetic testing and an additional 26% had documentation of testing outside of CREP. 26% had no documentation of referral or testing. Of those referred to CREP, 75% had genetic testing: in total 62% of the cohort had documented testing. 94% of those tested had a result documented in a provider note, and 64% had a scanned testing report uploaded into the EMR, including 74.3% of those tested through CREP and 25.7% of those tested outside. Among the 118 pathogenic mutations, 70% were documented on the EMR “problem list.” Conclusions: In this study, most, though not all, OC patients had documentation of a GT referral or testing in the EMR. Although GT results were routinely included in progress notes, these reports were less commonly scanned into the EMR (particularly for those tested outside Penn) or included in the EMR “problem list” which is both searchable and immediately visible. Capturing genetic data in a uniform and easily accessible manner within the EMR is necessary to maximize clinical utility of this information and should be a focus for EMR module development.

Communication and Information Needs of Women Diagnosed With Ovarian Cancer Regarding Treatment-Focused Genetic Testing

2013 ◽  
Vol 40 (3) ◽  
pp. 275-283 ◽  
Author(s):  
Margaret Gleeson ◽  
Bettina Meiser ◽  
Kristine Barlow-Stewart ◽  
Alison H. Trainer ◽  
Kathy Tucker ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Information Needs

scholarly journals Hereditary breast and ovarian cancer genetics: Genetic testing in Serbia

2018 ◽  
pp. 115-140
Author(s):  
Ana Krivokuća ◽  
Mirjana Branković-Magić
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Cancer Genetics ◽  
Breast And Ovarian Cancer

scholarly journals NEEDS AND UTILIZATION OF DRUG-INFORMATION RESOURCES OF HEALTHCARE PROVIDERS IN AN ACADEMIC TERTIARY CARE CENTER

2020 ◽  
pp. 124-128
Author(s):  
YOUSIF S. ALAKEEL ◽  
DIYANA ALMUTAIRI ◽  
LAILA LAYQAH
Keyword(s):  
Clinical Pharmacist ◽  
Information Needs ◽  
Drug Information ◽  
Care Center ◽  
Tertiary Care ◽  
Healthcare Providers ◽  
Information Resources ◽  
Patient Specific ◽  
Personal Digital Assistants ◽  
Related Information

Objective: To investigate the drug-related information needs of healthcare providers (HCPs), their utilization of drug information resources as well as the main factors influencing the selection of resources.Methods: A total of 393 HCPs were conveniently selected and invited to complete a questionnaire. Stratified sampling was used for the three subpopulations of physicians, pharmacists, and nurses. The questionnaire was coded, validated, and analyzed using the Statistical Package for the Social Sciences (SAS version 9.2).Results: Of 450 HCPs approached, 393 completed the questionnaire (response rate 87%). Information related to drug dosage/administration, indications, and interactions is the most frequently required, 47%, 44%, and 34%, respectively. The majority of the sample perceived the Internet (69.47%) and electronic databases (67.43%) as “very useful.” Printed materials (46.56%) and Personal Digital Assistants (PDAs) (44.78%) or calling the pharmacy (43.26%) were also useful resources of information followed by using electronic books and journals (38.42%) and asking colleagues (32.32%). The majority (53.18%) described consulting a clinical pharmacist as “very useful.” However, 16% of the nurse group and 35% of the physician group were not aware of the existence of the Drug Information Center (DIC) and more than 8% of the participants consider calling the DIC about drug-related information “not useful”.Conclusion: Digital resources are used by HCPs more frequently than traditional resources, consulting a clinical pharmacist or calling the DIC. Providing reliable electronic resources and raising the awareness of HCPs regarding the role of a clinical pharmacist and DIC for patient-specific therapies should be instituted.

scholarly journals “Do I want to know it all?” A qualitative study of glioma patients’ perspectives on receiving information about their diagnosis and prognosis

2020 ◽  
Author(s):  
Annika Malmström ◽  
Lisa Åkesson ◽  
Peter Milos ◽  
Munila Mudaisi ◽  
Helena Bruhn ◽  
...  
Keyword(s):  
Qualitative Content Analysis ◽  
General Information ◽  
Sensitive Information ◽  
Structured Interviews ◽  
Positive Information ◽  
Related Information ◽  
Diagnosis And Prognosis ◽  
Grade Ii ◽  
To Receive ◽  
Tailored Information

Abstract Purpose Glioma patients have poor prognosis. The amount of detail of disease-related information patients wish to receive is not known. The aim of this study was to explore glioma patients’ experiences and preferences regarding receiving information on diagnosis and prognosis. Methods Semi-structured interviews were performed with patients diagnosed with glioma. The interviews were analysed by qualitative content analysis without predefined categories by two independent coders. Results Ten women and 15 men, with newly diagnosed grade II–IV glioma, age 25–76 years, were interviewed. Participants’ experience on diagnosis communication was either indirect, meaning they found out their diagnosis unintentionally, e.g., from their electronic health record (EHR) instead of from their doctor, this causing anxiety and feelings of abandonment, insufficiently tailored: lacking in many aspects or individualised and compassionate. Participants generally wanted to know “the truth” about diagnosis and prognosis, but what they meant varied; some desired full honest information to allow for autonomous choices, others preferred general information without details, and some wanted no bad news at all, only positive information. Participants disclosed vulnerability after receiving their diagnosis, being cast into the unknown. They expressed a need for better everyday practical information to help create some control. Supportive staff could reduce participants’ distress. Conclusion There is a need to further develop and implement individually tailored information to glioma patients, both in consultations and patient-accessed EHR systems, which should have safe guards for sensitive information. Not all patients want to know it all, one size does not fit all.

scholarly journals Direct Genetics Referral Pathway for High-Grade Serous Ovarian Cancer Patients: The “Opt-Out” Process

2019 ◽  
Vol 2019 ◽  
pp. 1-7 ◽  
Author(s):  
Jacob McGee ◽  
Teresa M. Peart ◽  
Norine Foley ◽  
Monique Bertrand ◽  
Michel Prefontaine ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Cancer Patients ◽  
Genetic Counselling ◽  
Cancer Genetics ◽  
Pathology Report ◽  
Referral Process ◽  
Opt Out ◽  
History Of ◽  
Genetic Consultation

Purpose. In order to meet a clinical need for better pathways to access genetic testing for ovarian cancer patients, we implemented and reviewed an opt-out referral process for genetic consultation whereby a referral is automatically sent to genetics following a pathological diagnosis of HGSC. Methods. Following implementation of the opt-out referral process, each month a list of new cases of HGSC was generated from the synoptic pathology report and forwarded directly to the Cancer Genetics clinic. Using an advanced directive, patients were automatically referred for genetic counselling two months after surgery. If the patient declined genetic counselling (opted-out) after discussion with their surgeon within the two months after surgery, the Genetic Counsellor was informed and the patient was removed from the referral process. Results. Between January 1, 2015, and December 31, 2017, 168 women were diagnosed with HGSC, of whom 167 received a referral for genetic consultation. In only one case the referral was cancelled by the surgeon, resulting in a referral rate of 99.4%. By the end of the study period, 133 women attended a genetics consultation appointment and 125 (94%) agreed to proceed with genetic testing. Among those who completed genetic testing, 15% tested positive for a BRCA1 or BRCA2 gene mutation. Of the women who tested positive for a BRCA1/2 mutation, 56% had no family history of breast or ovarian cancer. Conclusions. The opt-out referral process described in this study is s a feasible, effective, and patient-centred approach to increase access to BRCA1/2 testing for patients with ovarian cancer.

scholarly journals Genetic Testing and Clinical Management Practices for Variants in Non-BRCA1/2 Breast (and Breast/Ovarian) Cancer Susceptibility Genes: An International Survey by the Evidence-Based Network for the Interpretation of Germline Mutant Alleles (ENIGMA) Clinical Working Group

2018 ◽  
pp. 1-42 ◽  
Author(s):  
Sarah M. Nielsen ◽  
Diana M. Eccles ◽  
Iris L. Romero ◽  
Fahd Al-Mulla ◽  
Judith Balmaña ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
United Kingdom ◽  
Genetic Testing ◽  
Management Practices ◽  
Cancer Genetics ◽  
Evidence Based ◽  
Ovarian Cancer Risk ◽  
Panel Testing ◽  
Cancer Susceptibility Genes ◽  
Multigene Panels

Purpose To describe a snapshot of international genetic testing practices, specifically regarding the use of multigene panels, for hereditary breast/ovarian cancers. We conducted a survey through the Evidence-Based Network for the Interpretation of Germline Mutant Alleles (ENIGMA) consortium, covering questions about 16 non- BRCA1/ 2 genes. Methods Data were collected via in-person and paper/electronic surveys. ENIGMA members from around the world were invited to participate. Additional information was collected via country networks in the United Kingdom and in Italy. Results Responses from 61 cancer genetics practices across 20 countries showed that 16 genes were tested by > 50% of the centers, but only six ( PALB2, TP53, PTEN, CHEK2, ATM, and BRIP1) were tested regularly. US centers tested the genes most often, whereas United Kingdom and Italian centers with no direct ENIGMA affiliation at the time of the survey were the least likely to regularly test them. Most centers tested the 16 genes through multigene panels; some centers tested TP53, PTEN, and other cancer syndrome–associated genes individually. Most centers reported (likely) pathogenic variants to patients and would test family members for such variants. Gene-specific guidelines for breast and ovarian cancer risk management were limited and differed among countries, especially with regard to starting age and type of imaging and risk-reducing surgery recommendations. Conclusion Currently, a small number of genes beyond BRCA1/ 2 are routinely analyzed worldwide, and management guidelines are limited and largely based on expert opinion. To attain clinical implementation of multigene panel testing through evidence-based management practices, it is paramount that clinicians (and patients) participate in international initiatives that share panel testing data, interpret sequence variants, and collect prospective data to underpin risk estimates and evaluate the outcome of risk intervention strategies.

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