“I think that a brief conversation from their provider can go a very long way”: Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer

Mallen, Adrianne; Conley, Claire C.; Fuzzell, Lindsay; Ketcher, Dana; Augusto, Bianca; McIntyre, McKenzie; Barton, Laura; Townsend, Mary K.; Fridley, Brooke L.; Tworoger, Shelley S.; Vadaparampil, Susan T.

doi:10.1007/s00520-020-05779-1

Cited by 12 publications

(8 citation statements)

References 46 publications

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“…Table 2 lists the titles, authors, and countries for each of the 24 included studies [ 16 , 17 , 18 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 ]. Table 1 also includes, for each study, the genetic disease focus or foci of each study (regarding PROs following genetic testing for breast and ovarian cancer syndrome, Lynch syndrome, and/or FH) and whether the study was qualitative, quantitative, or mixed-methods in nature.…”

Section: Resultsmentioning

confidence: 99%

Patient-Reported Outcomes following Genetic Testing for Familial Hypercholesterolemia, Breast and Ovarian Cancer Syndrome, and Lynch Syndrome: A Systematic Review

Hendricks‐Sturrup

Joseph

2021

JPM

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Background: Patient-reported outcomes (PROs) and PRO measures (PROMs) are real-world evidence that can help capture patient experiences and perspectives regarding a clinical intervention such as genetic testing. Objective: To identify and capture methods and qualitative PRO themes among studies reporting PROs following genetic testing for FH, breast and ovarian cancer syndrome, and Lynch syndrome. Methods: A systematic review was conducted via PubMed/MEDLINE, EMBASE, and Yale University’s TRIP Medical Databases on articles published by April 2021. Results: We identified 24 studies published between 1996 and 2021 representing 4279 participants that reported PROs following genetic testing for FH, breast and ovarian cancer syndrome, and Lynch syndrome. Studies collected and reported PROs from validated PROM instruments (n = 12; 50%), validated surveys (n = 7; 26%), and interviews (n = 10; 42%). PRO themes ranged across all collection methods (e.g., psychological, knowledge, coping and satisfaction, concern about stigma/discrimination, etc.). Conclusions: Important gaps identified include (1) most studies (n = 18; 75%) reported PROs following genetic testing for breast and ovarian cancer, and (2) populations reporting PROs overall were largely of White/Caucasian/Northern European/Anglo-Saxon descent. We offer recommendations and describe real-world implications for the field moving forward.

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Section: Resultsmentioning

confidence: 99%

Patient-Reported Outcomes following Genetic Testing for Familial Hypercholesterolemia, Breast and Ovarian Cancer Syndrome, and Lynch Syndrome: A Systematic Review

Hendricks‐Sturrup

Joseph

2021

JPM

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“…Patients were asked to report all primary cancer types, date of cancer diagnosis, treatment received, and genetic testing status. The PHQ-4 was used to measure anxiety and depression; respondents scores were dichotomized by either none (0-2) or mild to severe (3)(4)(5)(6)(7)(8)(9)(10)(11)(12). 25 As part of the survey, participants were asked if they had undergone cancer genetic testing.…”

Section: Methodsmentioning

confidence: 99%

“…Patient‐level factors, defined as factors impacting or perceived by an individual patient, include lack of provider referral and concerns about cost, clinical utility, privacy and confidentiality, and logistical issues. 8 , 9 , 10 , 11 The provider reported barriers to testing include perceived patient disinterest, long wait times for genetic services, insurance coverage concerns, unknown guidelines for management, insufficient experience/training, and clinical time limitations. 12 , 13 , 14 , 15 Systemic barriers include reduced access to specialists for under‐ and uninsured patients, health system mistrust, and lack of pre‐symptomatic genetic testing with public insurance.…”

Section: Introductionmentioning

confidence: 99%

“…Reasons for low uptake of genetic testing can be broken down into patient, provider, and systemic barriers. Patient‐level factors, defined as factors impacting or perceived by an individual patient, include lack of provider referral and concerns about cost, clinical utility, privacy and confidentiality, and logistical issues 8–11 . The provider reported barriers to testing include perceived patient disinterest, long wait times for genetic services, insurance coverage concerns, unknown guidelines for management, insufficient experience/training, and clinical time limitations 12–15 .…”

Section: Introductionmentioning

confidence: 99%

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Psychosocial factors impacting barriers and motivators to cancer genetic testing

et al. 2023

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Background Only a small proportion of patients who qualify for clinical genetic testing for cancer susceptibility get testing. Many patient‐level barriers contribute to low uptake. In this study, we examined self‐reported patient barriers and motivators for cancer genetic testing. Methods A survey comprised of both new and existing measures related to barriers and motivators to genetic testing was emailed to patients with a diagnosis of cancer at a large academic medical center. Patients who self‐reported receiving a genetic test were included in these analyses ( n = 376). Responses about emotions following testing as well as barriers and motivators prior to getting testing were examined. Group differences in barriers and motivators by patient demographic characteristics were examined. Results Being assigned female at birth was associated with increased emotional, insurance, and family concerns as well as increased health benefits compared to patients assigned male at birth. Younger respondents had significantly higher emotional and family concerns compared to older respondents. Recently diagnosed respondents expressed fewer concerns about insurance implications and emotional concerns. Those with a BRCA‐related cancer had higher scores on social and interpersonal concerns scale than those with other cancers. Participants with higher depression scores indicated increased emotional, social and interpersonal, and family concerns. Conclusions Self‐reported depression emerged as the most consistent factor influencing report of barriers to genetic testing. By incorporating mental health resources into clinical practice, oncologists may better identify those patients who might need more assistance following through with a referral for genetic testing and the response afterwards.

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“…The PRECEDE constructs from the PRECEDE–PROCEED model developed by Green and Kreuter (2005) have previously been used as a framework by studies within different scientific fields, including oral health, that have examined factors that precede a behaviour (Dharamsi et al, 2009; Mallen et al, 2021). PRECEDE in the model stands for Predisposing, Reinforcing, and Enabling Constructs in terms of Educational Diagnosis and Evaluation, while PROCEDE stands for Policy, Regulatory, and Organisational Constructs in Educational and Environmental Development (Green & Kreuter, 2005).…”

Section: Introductionmentioning

confidence: 99%

Factors influencing home health care providers' performance of oral health care for older people: A qualitative study

Henni

Ansteinsson

Mamykina

et al. 2023

Int J Older People Nursing

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AimTo examine factors that affect the performance of oral health care (OHC) for older people receiving nursing care at home.BackgroundOral health is often neglected by health care providers caring for older people. Research shows that health care providers' provision of OHC may be influenced by various factors (barriers and facilitators). When this research was conducted, health care providers from home healthcare services (HHCS) and nursing homes were grouped together despite setting differences; therefore, this study focuses on the performance of OHC by home health care providers (HHCPs) as a single group.DesignExplorative design with a qualitative approach.MethodsThe managers of four HHCS units recruited 17 HHCPs to participate in focus group interviews. One interview was conducted per unit, and there were four to five participants in each interview. The analysis of interviews was based on theoretical thematic analysis and the PRECEDE constructs in the PRECEDE–PROCEED model. Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were used in reporting this study.FindingsThe analysis resulted in two themes with predisposing factors (HHCPs' professional responsibilities, older people's attitude), five themes with enabling factors (knowledge and skills, older people/carer trust, available time, available equipment and collaboration with public dental service (PDS)), and two themes with reinforcing factors (routines and OHC focus on the workplace) that affect the provision of OHC. The factors were categorised as individual, organisational and collaboration factors.ConclusionsIn addition to individual factors found in previous studies, factors related to the organisation of services and communication between HHCPs and PDS seem to affect HHCPs' provision of OHC for adults receiving HHCS.Implications for PracticeThis study provides in‐depth knowledge that can contribute to increasing HHCPs' provision of OHC and thereby prevent oral and dental disease among older people receiving HHCS.

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“I think that a brief conversation from their provider can go a very long way”: Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer

Cited by 12 publications

References 46 publications

Patient-Reported Outcomes following Genetic Testing for Familial Hypercholesterolemia, Breast and Ovarian Cancer Syndrome, and Lynch Syndrome: A Systematic Review

Patient-Reported Outcomes following Genetic Testing for Familial Hypercholesterolemia, Breast and Ovarian Cancer Syndrome, and Lynch Syndrome: A Systematic Review

Psychosocial factors impacting barriers and motivators to cancer genetic testing

Factors influencing home health care providers' performance of oral health care for older people: A qualitative study

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