A clinical perspective on genetic counseling and testing during end of life care for women with recurrent progressive ovarian cancer: opportunities and challenges

Daniels, Molly S.; Burzawa, Jennifer K.; Brandt, Amanda; Schmeler, Kathleen M.; Lu, Karen H.

doi:10.1007/s10689-011-9418-1

Cited by 10 publications

(7 citation statements)

References 22 publications

(20 reference statements)

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“…In total, Search 1 identified 2424 records (Appendix S2). Title and abstract screening excluded 2379 records and the remaining 45 full‐text articles were retrieved and assessed for eligibility . This led to inclusion of 39 studies that used both quantitative and qualitative study designs.…”

Section: Resultsmentioning

confidence: 99%

Patient reported outcomes and patient empowerment in clinical genetics services

McAllister

Dearing

2014

Clinical Genetics

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Evaluation of clinical genetics services (CGS), including genetic counseling and genetic testing, has been problematic. Patient mortality and morbidity are unlikely to be directly improved by interventions offered in CGS. Patient‐reported outcomes (PROs) are not routinely measured in CGS evaluation, but this may change as patient‐reported outcome measures (PROMs) become a key part of how healthcare services are managed and funded across the world. However, there is no clear consensus about which PROMs are most useful for CGS evaluation. This review summarizes the published research on how PROs from CGS have been measured and how patients may benefit from using those services, with a focus on patient empowerment. Many patient benefits (PROs) identified repeatedly in the research literature can be re‐interpreted within a patient empowerment framework. Other important PROs identified include family functioning, social functioning, altruism, sense of purpose, enabling development of future research and treatment/participating in research. Well‐validated measures are available to capture (dimensions of) patient empowerment. Although generic measures of family functioning are available, suitable measures capturing social functioning, development of future treatments, and altruism were not identified in this review. Patient empowerment provides one useful approach to measuring PROs from CGS.

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Section: Resultsmentioning

confidence: 99%

Patient reported outcomes and patient empowerment in clinical genetics services

McAllister

Dearing

2014

Clinical Genetics

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“…Limited empirical studies have suggested that palliative patients knew little or nothing about genetics (Quillin et al 2008). However, anecdotal evidence suggests that palliative patients have deep concerns for the welfare of their families, including the worry that family members will also be affected by disease (Daniels et al 2011;Lillie 2006). This is similar to empirical evidence which examines the perceptions and opinions of non-terminal patients for whom a genetic link to disease would have no direct medical benefit.…”

Section: Introductionmentioning

confidence: 83%

“…Similarly to the literature, the view that genetic conversations should have taken place with other HCP before the point of palliative treatment was raised by most of the participants (Lillie et al 2011;Metcalfe et al 2010). Unlike the literature, this was not necessarily cited as a reason to not have these discussions, as participants acknowledged that it should not be assumed that it had been previously addressed, such has been previously argued by genetics professionals (Daniels et al 2011). Perhaps this healthy level of cynicism could be exploited by those providing training to this cohort.…”

Section: Implications For Practice: a Need For Further Trainingmentioning

confidence: 94%

“…Palliative patients remain an underserved cohort by clinical genetics in the UK as well as internationally (Daniels et al 2011;Lillie et al 2011;Quillin et al 2011b), although many may be eligible for referral. Genetic counselling and testing is recommended by the National Institute for Health and Care Excellence (NICE), a UK-based health authority which publishes guidelines for treatment provided by the National Health Service (NHS).…”

Section: Introductionmentioning

confidence: 99%

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Mainstreaming genetics in palliative care: barriers and suggestions for clinical genetic services

Dearing

Taverner

2017

J Community Genet

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Palliative healthcare professionals (PHCPs) frequently do not refer their eligible patients for genetic testing. After the death of the affected individual, clinically relevant information for family members is lost. In previous research, PHCPs stated that the end-of-life setting is not appropriate to discuss genetic issues. It is unclear if this has changed due to increasing awareness of genetics in the media and efforts to mainstream genetic testing. Semi-structured interviews of PHCPs were analysed by thematic analysis. Seven PHCPs (four nurses, two consultants, and one clinical psychologist) were interviewed. Participants reported feeling unfamiliar with the role of clinical genetics services, and did not feel confident in addressing genetic issues with their patients. A lack of scientific knowledge and unawareness of existing infrastructure to support their patients were cited. Many stated that palliative patients are interested in exploring a potential hereditary component to their disease, and acknowledged the potential for psychological benefit for their patients and their families. Most stated that addressing genetics fits within their skill set, but expressed concern about issues of consent, logistical difficulties, and ethical dilemmas. These perceptions differ considerably from those reported in existing literature. Importantly, each participant stated that the potential benefits of addressing genetic issues outweighed the potential for harm in most cases. These results suggest a need for clinical genetics staff to develop closer links with their local PHCPs and to provide education. Clinical psychologists may also be a helpful resource to address PHCPs' concerns.

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“…Further research is needed on the most effective use of this genetic information in formulating counseling and clinical management strategies. Also, attention should be directed toward the provision of genetic counseling and testing during the end of life care [120][121][122].…”

Section: Discussionmentioning

confidence: 99%

The Role of Genetic Counseling in Gynecological Oncology

Comparetto¹,

Dupré²,

Borruto³

2019

obm genet

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Background: Clinical or medical genetics deals with the study and diagnosis of genetic diseases. It is oriented to the formulation of the clinical diagnosis of genetic diseases and genetic counseling to evaluate the possible reproductive risk for the patient and his/her family. The geneticists here play a role in the diagnosis and prevention of some of the diseases occurring most frequently, such as cancer and cardiovascular diseases. Methods: State-of-the-art through literature review. Results: Genetic counseling helps consultants make decisions regarding the possibility of developing and/or transmitting genetic diseases, to evaluate the possible choices that can be made once genetic testing has been carried out and its result is known (possible therapies, voluntary pregnancy interruption, etc.). The decision on what to do is always autonomous to the consultants and the doctor or, a qualified professional figure has no role in it. Genetic

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A clinical perspective on genetic counseling and testing during end of life care for women with recurrent progressive ovarian cancer: opportunities and challenges

Cited by 10 publications

References 22 publications

Patient reported outcomes and patient empowerment in clinical genetics services

Patient reported outcomes and patient empowerment in clinical genetics services

Mainstreaming genetics in palliative care: barriers and suggestions for clinical genetic services

The Role of Genetic Counseling in Gynecological Oncology

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