Healthcare providers attitudes towards risk stratification of adopted patients with limited family history information: a cross-sectional survey

Abstract

Familial medical history (FMH) is crucial for patient risk stratification; however, adopted patients’ FMH knowledge may be limited. This can be problematic when determining steps in screening and management of patients. Little is known about providers’ opinions and practices regarding adopted patients with limited FMH. This study explored healthcare providers’ attitudes towards these patients and explored whether they interact differently with these individuals. We assessed providers’ opinions regarding earlier screening, more aggressive management techniques, and genetic testing for this population. Surveys were mailed to 300 Family Practice Medical Doctors (M.D.s) and Doctors of Osteopathic Medicine (D.O.s), in the state of Ohio. Descriptive statistics were calculated, and chi-squared or Fisher’s exact tests assessed relationships between provider characteristics and screening and management practices (alpha = 0.05). There was no association between years of practice or provider sex and how they screened, managed, or interacted with adopted patients. Providers that had adopted patients did not hold any statistically different opinions on how adopted patients should be managed versus providers that did not. Most providers did not initiate earlier screening for patients with unknown FMH, with the exception of D.O.s initiating earlier mammographic screening. However, all providers took more extensive personal histories and carried out more extensive monitoring. Although family medical history is only a piece of the puzzle when determining what medical care is right for a particular patient, it still remains an important aspect that needs to be addressed. Providers need to ensure that they are correctly managing patients with unknown familial risk factors.

Introduction

Family medical history plays a large role in patient-provider interactions regarding screening, management, and treatment of disease (U.S. Preventive Services Task Force). There are an estimated 5 million living American adoptees (Herman 2012) that may have limited to no family medical history available for risk stratification and medical decision making. There is also evidence that physicians’ implicit biases can shape their treatment behavior (Chapman 2013). This study explored two main hypotheses; adopted patients with limited FMH are treated differently by their healthcare providers than patients with known FMH, with respect to disease screening and management techniques, including genetic testing, and that healthcare providers’ attitudes towards these adopted patients may differ based on the providers’ demographics and practice experience.

Methods

Family Practice Medical Doctors (M.D.s) and Doctors of Osteopathic Medicine (D.O.s) were identified from the Ohio Academy of Family Physicians mailing list by systematically sampling every 8th listing. Three hundred physicians were mailed paper questionnaires with return postage and envelopes during August of 2014. The 26-item questionnaire solicited provider demographics, quantity and demographics of adopted patients within their practice, practitioners’ attitudes towards patient risk stratification in the absence of family health history with respect to earlier and more thorough screening and/or preventive measures for familial cancers, cardiovascular disease, diabetes, and genetic testing. Questions were designed based on the U.S. Preventive Services Task Force (USPSTF) screening guidelines in place at the time of the survey (2014) (LeFevre ML, Force USPST 2014; National Cancer Institute 2018; Published Recommendations; Wehbi 2013). Three questions were excluded from analysis, because it was determined the wording was confusing based on comments written in by several of the providers.

Data was entered directly into SPSS v 20 (IBM SPSS Statistics for Windows 2011) for analysis. All variables were categorical in nature and chi-squared or Fisher’s exact tests, with an alpha level of 0.05, were used to examine associations between provider characteristics and attitudes towards their patients.

The University of Toledo Biomedical Institutional Research Board approved this study protocol #200122 on 5/22/2014.

Results

Seventy six questionnaires were returned by 66 (86.8%) M.D.s and 9 D.Os, and one unspecified provider type. The response rate was 25% after a single mailing, which is within expected range for this population (McLeod et al. 2013). Provider and adopted patient characteristics are presented in Table 1. The majority of providers were male (53.9%), White (85.5%), had been in practice for over 20 years (50%), and treated adopted patients within their practice (89%). The majority of the providers treated at least some patients with undocumented family health history (89.5%), and adopted patients were a mix of US and foreign-born individuals.

Table 1.

Demographic characteristics of providers and characteristics of the patients within their practice

Demographic characteristic	N (%)
Sex of provider
Male	41 (53.9)
Female	35 (46.1)
Age of provider (years)
31–40	15 (19.7)
41–50	19 (25.0)
51–60	26 (34.2)
≥ 60	16 (21.1)
Race of provider
Asian	6 (7.9)
African American	3 (3.9)
White	65 (85.5)
Missing/nonresponsive	2 (2.6)
Years of practice
≤ 5	8 (10.5)
6–10	8 (10.5)
11–15	6 (7.9)
16–20	15 (19.7)
≥ 21	38 (50.0)
Missing/nonresponsive	1 (1.3)
Adopted patients treated within practice
Yes	69 (89.5)
No	7 (9.2)
Treats adopted patients without documented family medical history
Yes	68 (89.5)
No	8 (10.5)
Country of birth of adopted patients
Within USA	39 (51.3)
Outside USA	2 (2.6)
Both	26 (34.2)
Not applicable	7 (9.2)
Missing/nonresponsive	2 (2.6)

Providers’ attitudes towards adopted patients regarding screening and disease management techniques and genetic testing are displayed in Table 2. Only 19 (25%) providers that treated patients lacking documented family medical history took a more extensive personal history than with family history-known patients. There were no differences between years of practice, or sex of the provider, and how the provider screened, managed, or interacted with adopted patients. Providers that had adopted patients did not hold any statistically different opinions on how adopted patients should be managed versus providers that did not have any adopted patients. Interestingly, providers (57.9% agreed/strongly agreed) thought individuals that requested genetic testing in the absence of known family history should be granted the test, while the majority disagreed/strongly disagreed (63.1%) that parents should be able to request genetic tests for their adopted children. In our query about aspirin therapy use, many providers wrote in that they would base recommending this purely on age, regardless of a family history of heart disease. Providers felt lipid profile screening should be initiated earlier for adopted patients with unknown familial hyperlipidemia risk (p = 0.01 for disagree/agree). The only statistically significant differences that were seen were in the proportion of MDs (28%) versus DOs (78%) that agreed that mammograms should be initiated earlier than the recommended age of 50 from the USPSTF (p = 0.006). Among providers that took a more extensive family history in these patients, 78% also agreed that it was crucial to monitor adopted patients more closely than the general population due to possible unidentified risk factors, while only 27% of providers that answered “no” to taking a more extensive personal history in adopted patients agreed that closer monitoring of adopted patients is crucial (p = 0.001).

Table 2.

Providers’ attitudes towards adopted patients regarding screening and disease management techniques, as well as genetic testing

Screening and disease monitoring practice	Strongly agree N (%)	Agree N (%)	Disagree N (%)	Strongly disagree N (%)
Lipid profile screening should be initiated earlier on patients with an unknown familial risk for hyperlipidemia	9 (11.8)	33 (43.4)	30 (39.5)	4 (5.3)
Screening for colorectal cancer should be initiated earlier than the USPSTF recommendation of 50 years and older in adopted patients with unknown risk for colorectal cancer	3 (3.9)	15 (19.7)	53 (69.7)	4 (5.3)
Screening for breast cancer utilizing mammograms should be initiated earlier than the USPSTF recommendation of 50 years and older in a woman with unknown family history for breast cancer	3 (3.9)	22 (28.9)	47 (61.8)	4 (5.3)
I would consider it appropriate to recommend adopted women with an unknown familial breast cancer history to receive possible BRCA gene testing	0	16 (21.1)	42 (55.3)	18 (23.7)
I would consider it crucial to monitor adopted patients with unknown family medical history more closely than the general population due to possible unidentified risk factors	3 (3.9)	28 (36.8)	43 (56.6)	2 (2.6)
Adopted patients with unknown family medical history should be more aggressively managed than the general population for new disease states due to possible unidentified risk factors that could affect their prognosis	2 (2.6)	18 (23.7)	54 (71.1)	1 (1.3)
Adopted patients with unknown family medical history should be considered high risk for heart disease	3 (3.9)	7 (9.2)	63 (82.9)	3 (3.9)
An asymptomatic adopted patient with unknown family medical history that requests genetic testing for a particular disease should be granted the opportunity to receive such a test	4 (5.3)	40 (52.6)	26 (34.2)	4 (5.3)
Parents of an adopted child with unknown family medical history should be able to request and receive genetic testing for any disease for their child	4 (5.3)	24 (31.6)	40 (52.6)	8 (10.5)

Discussion

We surveyed primary care physicians (M.D.s and D.O.s) on their attitudes towards risk stratification of adopted patients with limited family health history. No differences were seen in providers’ attitudes with respect to age group, sex, race, or length of time in practice. In this age of the ever expanding direct-to-consumer genetic testing market, providers may no longer be gatekeepers of this information. We also noted a difference in screening initiation recommendation for breast cancer between M.Ds and D.Os., which is not necessarily surprising as this topic is controversial for all average risk patients (Norris et al. 2012), and D.O.s may philosophically tend to place a greater emphasis on prevention compared to M.D.s.

Limitations include that only M.D.s and D.Os., not other provider types, from a single state were surveyed, and were of a limited demographic set. Additionally, we had limited power to detect smaller associations with our achieved sample size. However, this is one of the first studies we are aware of to assess provider attitudes towards adopted patients with respect to risk stratification and disease management. Taking a meaningful history is an important part of clinical practice, and interaction with adopted patients will happen in practice. Physicians in this sample tended to assume average risk level for managing their patients with unknown family history. Further research should explore the impact of generalizing risk level for these adopted patients with unknown familial risk factors. Additionally, many more disease-predisposing gene mutations have been identified, the direct-to-consumer genetic testing industry has evolved tremendously since the time of data collection and these developments may play a role in this doctor patient relationship that warrants attention. For example, the BRCA gene mutations are not the only breast cancer-predisposing gene mutations. Although family history is only a piece of the puzzle when determining what medical care is right for a particular patient, it still remains an important aspect that needs to be addressed.

Declarations

Ethical approval

The University of Toledo Biomedical Institutional Research Board approved this study protocol #200122 on 5/22/2014.

Conflict of interest

Barbara Saltzman and Lauren Nemunaitis declare no competing interests.