Increasing genetic counseling referral rates after ovarian cancer diagnosis: Improving the quality of ovarian cancer care

CRA1505 Background: The cancer family history (CFH) is an important tool for identification of individuals for genetic counseling/testing (GC/GT). Prior studies demonstrate a low rate of family history documentation and low referral rates for genetic counseling and genetic testing. Methods: In 2011ASCO began pilot testing new measures in QOPI to evaluate the practice of family history taking and referral for genetic counseling/testing in patients with either breast cancer (BC) or colorectal cancer (CRC). The measures assessed the presence or absence of CFH in 1st/2nd degree relatives, age at cancer diagnosis, referral for GC/GT and outcomes of referral. Results: Between September and October 2011 272 practices pilot tested these measures and reported on 10,466 patients (BC 6569, CRC 3897). 77.4% of all charts reviewed documented presence or absence of CFH in 1st degree relatives (BC 81.2% (CI 80-82%), CRC 77.4% (CI 76-79%), p= <0.001) and 61.5% of charts documented presence or absence of CFH in 2nd degree relatives (BC 68.9% (CI 68-70%), CRC 57.3% (CI 56-59%) p=<0.001). Age at diagnosis was documented for all relatives with cancer in 30.7% of charts (BC 45.2% (CI 44-47%), CRC 35.4% (CI 34-37%) p=<0.001). Patients were referred for GC/GT in 22.1% of all charts reviewed (BC 29.1% (CI 28-30%), CRC 19.6% (CI, 18-21%) p=<0.001). Of patients with hereditary risk (defined by selected risk guidelines) 52.2% of BC and 26.4% CRC were referred for GC/GT. When genetic testing was performed by the practice consent was documented 77.7% of the time and discussion of results was documented 78.8% of the time. Conclusions: Appropriate referral for GC/GT requires a complete and accurate CFH. In this pilot testing of QOPI measures we identified a higher quality of CFH information than expected though with room for improvement. Significant differences were seen between BC and CRC charts with greater accuracy of CFH and higher referral rates among BC patients. To obtain improvement in the identification and management of patients at high risk, significant improvements are needed. Education is part of the answer.

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The Relationship Between Psychological Flexibility, Value-Based Living and Emotional Well-Being in People Affected by Cancer

Journal of Global Oncology ◽

10.1200/jgo.18.57800 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 115s-115s

Author(s):

E. Smith ◽

A. Gow ◽

L. Forsyth ◽

B. Bryne ◽

L. Howells ◽

...

Keyword(s):

Quality Of Life ◽

Cancer Diagnosis ◽

Cancer Care ◽

Psychological Flexibility ◽

Well Being ◽

Supportive Cancer Care ◽

Valued Living ◽

Being There ◽

The Relationship

Background: Receiving a cancer diagnosis can have detrimental effects on an individual's psychological flexibility (ability to adapt constructively to reality), emotional well-being and ability to live aligned with personal values, for example, in relationships and work. Higher levels of psychological flexibility and emotional well-being are associated with better quality of life and lower psychological cancer-related distress. In turn, value-based living is positively associated with psychological flexibility and emotional well-being. There is, however, limited research specifically exploring the relationship between value-based living and emotional well-being within individuals affected by cancer. Maggie's Centres ( www.maggiescentres.org ) offer an innovative, multidisciplinary model of holistic supportive cancer care, widely regarded as an exemplar of best practice in cancer rehabilitation and supported self-management. In 2017 Maggie's received 249,247 visits across the network of Centres in the UK, Hong Kong and Tokyo. Principles of ACT (acceptance and commitment therapy) are incorporated within the program of individual support, psychoeducational courses and groups to help people maximize their quality of life. Aim: To explore the associations between psychological flexibility, value-based living and emotional well-being in individuals affected by cancer. Methods: Sixty-five people, affected by a cancer diagnosis personally or in a family member, were recruited from four UK Maggie's Centres. Participants completed standardized questionnaires measuring psychological flexibility, valued-based living and emotional well-being. Results: Moderate positive associations were found between emotional well-being and psychological flexibility (r=.4750), as well as emotional well-being and valued-living (r=.37983). Psychological flexibility was also positively associated with valued living (r=.443474). Multiple regression analysis revealed a significant model (F(5,54)=9.35, P < .001), accounting for 41.4% of the variance in emotional well-being (adjusted R2 = .414). Both psychological flexibility (b=.357, P = .002) and valued-living (b=.337, P = .004) were predictors of emotional well-being across all ages, gender and time since diagnosis. Conclusion: The study provides support for the positive associations between psychological flexibility, valued-living and emotional well-being and indicates that psychological flexibility and valued-living may be predictors of emotional well-being. This was a small observational study, so conclusions about causation or change over time cannot be made. Longitudinal intervention studies need to explore the potential impact valued-living and psychological flexibility may have on emotional well-being in those affected by cancer, and so contribute to understanding the potential importance of encouraging valued-living as a therapeutic tool within cancer care.

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344 Clinical audit on quality of cancer care within the oncological network of Piedmont and Valle d’Aosta: ovarian cancer treatment

10.1136/ijgc-2019-igcs.344 ◽

2019 ◽

Author(s):

P Zola ◽

M Scozzafava ◽

E Pagano ◽

G Ciccone ◽

ME Laudani ◽

...

Keyword(s):

Ovarian Cancer ◽

Cancer Treatment ◽

Cancer Care ◽

Clinical Audit

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Genetic testing in ovarian cancer – clinical impact and current practices

Hormone Molecular Biology and Clinical Investigation ◽

10.1515/hmbci-2019-0025 ◽

2019 ◽

Vol 41 (3) ◽

Author(s):

Laura Knabben ◽

Sara Imboden ◽

Michel D. Mueller

Keyword(s):

Ovarian Cancer ◽

Genetic Counseling ◽

Genetic Testing ◽

Impact Analysis ◽

Survival Rates ◽

Disease Free Survival ◽

Current Data ◽

Clinical Impact ◽

Clinical Practices ◽

Referral Rates

AbstractBackgroundClinical practices and testing strategies in patients with ovarian cancer differ worldwide. We therefor wanted to give an overview over the current data to advise best clinical practice.Materials and methodsA systematic review of the literature was performed with the aim to define which ovarian cancer patients to refer for genetic counseling and how to perform genetic testing. We also discuss the timing of genetic testing and clinical relevance of the BRCA mutation status.ResultsThe germline mutation rate in patients with ovarian cancer is high, independent of family history, age at diagnosis and histology. BRCA mutation carriers with ovarian cancer have improved survival rates. In recurrent ovarian cancer treatment by poly ADP ribose polymerase (PARP) inhibitors improves the disease-free survival in patients with BRCA mutations or homologous recombination deficiency with hazard ratios up to 0.23. But also patients with BRCA wild type show a benefit. The recently published SOLO-1 trial demonstrated a significant benefit for patients with germline BRCA mutations in the first line setting. By tumor testing about 7% additional BRCA mutations can be found but the somatic testing and interpretation of the results remains a challenge. Despite the clinical impact, analysis of our own data and also international publications show insufficient referral rates for genetic counseling.ConclusionsGenetic testing in ovarian cancer has a prognostic and predictive value. Referral rates must be improved.

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Determination of quality of life-related utilities for health states relevant to ovarian cancer diagnosis and treatment

Gynecologic Oncology ◽

10.1016/j.ygyno.2008.12.026 ◽

2009 ◽

Vol 113 (2) ◽

pp. 216-220 ◽

Cited By ~ 71

Author(s):

Laura J. Havrilesky ◽

Gloria Broadwater ◽

Debra M. Davis ◽

Kimberly C. Nolte ◽

J. Cory Barnett ◽

...

Keyword(s):

Quality Of Life ◽

Ovarian Cancer ◽

Cancer Diagnosis ◽

Diagnosis And Treatment ◽

Health States

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Implementation of strategies to increase genetic counseling referral rates for ovarian cancer patients.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.15_suppl.1590 ◽

2018 ◽

Vol 36 (15_suppl) ◽

pp. 1590-1590

Author(s):

Kara J. Milliron ◽

Victoria Prince ◽

Lauren Hipp ◽

Shitanshu Uppal ◽

Melissa Brackmann ◽

...

Keyword(s):

Ovarian Cancer ◽

Genetic Counseling ◽

Cancer Patients ◽

Referral Rates

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Facilitated referral pathway for genetic testing at the time of ovarian cancer diagnosis: uptake of genetic counseling and testing and impact on patient-reported stress, anxiety and depression

Gynecologic Oncology ◽

10.1016/j.ygyno.2020.01.007 ◽

2020 ◽

Vol 157 (1) ◽

pp. 280-286

Author(s):

Melissa K. Frey ◽

Sarah S Lee ◽

Deanna Gerber ◽

Zachary P. Schwartz ◽

Jessica Martineau ◽

...

Keyword(s):

Ovarian Cancer ◽

Genetic Counseling ◽

Genetic Testing ◽

Cancer Diagnosis ◽

Anxiety And Depression ◽

Counseling And Testing ◽

Patient Reported

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The impact of Angelina Jolie's (AJ) story on genetic referral and testing at an academic cancer centre.

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.26_suppl.44 ◽

2014 ◽

Vol 32 (26_suppl) ◽

pp. 44-44 ◽

Cited By ~ 5

Author(s):

Jacques Raphael ◽

Sunil Verma ◽

Paul Hewitt ◽

Andrea Eisen

Keyword(s):

Breast Cancer ◽

Ovarian Cancer ◽

Genetic Counseling ◽

Genetic Testing ◽

Breast And Ovarian Cancer ◽

Before And After ◽

History Of ◽

The Media ◽

The Impact

44 Background: In May 2013, AJ revealed to the media that she had undergone preventive double mastectomy. The actress had a family history of breast and ovarian cancer and tested positive for the BRCA1 gene mutation. Media coverage has been extensive, but it’s not clear what messages the public and professional medical staff took from this personal story that sometimes could be misleading. Methods: We conducted a retrospective review in our centre using data from the clinical database of the Familial Cancer Program in a tertiary care cancer centre. The impact of AJ’s story on genetic counseling referrals was assessed by comparing the number of referrals made 6 months before and after the story. In addition, the quality of referrals was reported by comparing the number of patients who qualified for genetic testing as defined by the Ontario Ministry of Health and Long Term Care and the ones who carried a BRCA1/2 mutation before and after the media release. Results: The number of women referred for genetic counseling increased by 85% after the release of AJ’s story (479 before versus 887 after). This translated to an increase of 99% in the number of women who qualified for a genetic testing (211 before versus 419 after). Among them, 120 and 254 women had a history of breast and ovarian cancer in their family, 16 and 37 women had a history of male breast cancer in their family, and 28 and 15 women were diagnosed with breast cancer at the age of 35 or less before and after AJ’s story respectively. Furthermore, the number of BRCA1/2 carriers identified increased by 107% (29 (14 BRCA1, 15 BRCA2) before and 60 (32 BRCA1, 28 BRCA2) after). Conclusions: This study clearly shows that the number of genetic referrals doubled after AJ’s story. Nevertheless, the quality of referral remained the same with nearly the same percentage of patients who qualified for genetic testing and who were identified as BRCA1/2 carriers. The challenge is to meet the increased demand for cancer genetic services including screening, counseling, testing, and preventive surgery. After AJ’s story the current model of genetic counseling may need to be revisited.

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