UHR Volume 15 (2010)_OCR

Collection and Utilization o f Family Health History Information in the Health Care Setting: A Case for Asthma and Diabetes Authors: Celeste Beck, MPH Brenda Ralls, PhD Rebecca Giles, MPH, CHES Richard Bullough, PhD Shelly Wagstaff, BS William F.Stinner, PhD A bstra c t Chronic diseases, particularly asthma and diabetes, tend to run in families. Results from a statewide survey of Utah adults were analyzed to assess the risk for these two diseases based on having an immediate family member with the disease, and also to examine the collection and utilization of family health history information in the health care setting. Adults with an immediate family member with asthma or diabetes had more than triple the adjusted odds of being diagnosed with the disease compared to adults without a family history (3.6 and 3.1, respectively). However, less than one-third of adults with a family history of any chronic disease, including asthma and diabetes, reported having ever actively collected family health history information, and less than half reported having ever discussed their risk for disease or received recommendations from a health care professional based on their family history. Collection and discussion of family health history appears to be underutilized in the health care setting. In tr o d u c t io n Chronic diseases tend to run in families. Individuals who are aware of their potential for an inherited risk for a condition may be especially diligent about taking steps to avoid developing it. Family history information can be important for assessing risk and act as a prompt calling for screening and early detection and treatment (Hariri, Yoon, Qureshi, Valdez, et al., 2006). Genetic testing is one way to identify an inherited risk, but this type of testing is slow, expensive, and difficult. Knowing and collecting one's family health history is a practical alternative. Collecting family health history means actively pursuing and recording diseases known within one's family, along with familial relationships, and where possible, the age at diagnosis and death (See CDC, 2010). Family health history is useful for predicting a person's risk for developing a host of chronic conditions, including birth defects, asthma, cardiovascular disease, cancer, diabetes, depression, Alzheimer's disease, and osteoporosis. Two diseases with a particularly strong genetic link are asthma and diabetes (both type 1 and type 2). Studies indicate the risk for developing diabetes can at least double ©2010 The University of Utah. All Rights Reserved. A Case for Asthma and Diabetes 7 when an individual has a family history of the disease (NIDDK, 2002; Li, Isomaa,Taskinen, Groop, et al., 2000, Rotter, Anderson, Rubin, Congelton et al., 1983). Family history has an especially strong impact on asthma. The risk for developing asthma may increase almost fivefold if a family member has asthma (Liu, Valdez, Yoon, Crocker et al., 2009). Most people are aware of the link between family history and increased risk of certain chronic conditions. In fact, among Utah adults, 86.0% believe that family history increases the risk for developing a chronic disease (BRFSS 2005). Nationally, 96% of adults say it is important to know one's family health history (CDC, 2004). Nevertheless, despite its perceived value, simplicity and low cost, family health history is widely underused as a public health tool. Less than 30 percent (29.8%) of U.S. adults actively collect their family health history (CDC, 2004). This lack of awareness regarding the potential for increased risk precludes the opportunity for open discussion with a health care provider about steps that can be taken to help prevent the development of a chronic condition. Widespread lack of awareness of family history can translate into an unfortunate lost opportunity for prevention. Awareness and subsequent discussion of one's family health history with health care providers can improve communication about reducing the risk for developing a disease. However, given doctors' busy schedules, the responsibility for discussion may fall upon the patient. One study indicated that only about half of primary care providers discussed family histories with patients during their initial visits, and it was discussed at only 22 percent of follow-up visits. When providers did discuss family history, the majority of the clinical time tended to focus more on the psychosocial aspects of the family rather than medical aspects (Acheson, Wiesner, Zyzanski, Goodwin, et al, 2000). Interventions that incorporate family health history are becoming more prominent in the public health arena. Still, little is known about awareness of family health history among Utah adults and the extent to which they formally pursue collecting this information. Even less is known about the patient/provider interactions and discussions regarding family health history. Therefore, the objectives of this study, based on a statewide survey of Utah adults are: (1) to examine, for asthma and diabetes, separately, the link between the respondent's having ever been diagnosed with either disease and evidence from the family history findings that the disease was also experienced by any immediate family members; (2) to assess the degree to which respondents have actively collected a family health history; and (3) to gauge the degree to which providers have discussed family history findings with the respondent and proffered recommendations on the basis of such evidence. M eth od s The Behavioral Risk Factor Surveillance System (BRFSS) is a state-based survey established by the Centers for Disease Control and Prevention (CDC), which is used to gather information on health behaviors, chronic disease and injury among adults. In years 2006 through 2008, a subsample of respondents in Utah was selected to be asked additional questions about family health history. Questions were added to the Utah BRFSS to assess the percentage of Utah adults who were actively collecting health information from their relatives for the purpose of developing a family health history. Respondents were also asked whether or not they had discussed their family health history with their health care provider and if their providers had made recommendations. Not all questions were asked for all years, as noted in the results section, below. Only valid responses were included in the analyses. Responses with "Don't know" and "Refused" were set as missing values. Variables included in the study are defined below. Asthma diagnosis: A dichotomous variable based on the question, "Have you ever been told by a doctor, nurse, or other health professional that you had asthma?" (Yes=1; No =0). Diabetes diagnosis: A dichotomous variable based on the question "Have you ever been told by a doctor that you have diabetes?" (Yes=1; No =0). Age: A continuous variable based on self-reported age at last birthday. Gender: A dichotomous variable (Male=1; Female=2). Smoking history: A dichotomous variable based on the question, "Have you smoked at least 100 cigarettes in your lifetime?" (Yes=1; No =0). Family history of asthma: A dichotomous variable based on the question, "Have any of your immediate family members ever been told by a doctor, nurse, or other health professional that they had asthma?" (Yes=1; No =0). Family history of diabetes: A dichotomous variable based on the question "Have any of your immediate family members ever been told by a doctor, nurse, or other health professional that they had diabetes? Do not include female relative who only had diabetes during pregnancy." (Yes=1; No =0). Family history of at least one chronic disease: A dichotomous variable based on the question "Now thinking about your immediate family including your grandparents, parents, brothers, sisters, and children, both living and deceased, to the best of your knowledge, does one or more chronic disease, such as heart disease, stroke, diabetes, or cancer tend 8 A Case for Asthma and Diabetes ©2010 The University of Utah. All Rights Reserved. to run in your family?" (Yes=1; No =0). Collection of family health history: A dichotomous variable based on the question "Have you ever actively collected health information from your relatives for the purpose of developing a family health history?" (Yes=1; No =0). Provider discussion of risk: A dichotomous variable based on the question "Has a doctor or other health professional ever discussed with you your risk for certain diseases or other health problems based on your family medical history?" (Yes=1; No =0). Provider recommendations: A dichotomous variable based on the question "Has a doctor or other health care professional ever made any recommendations to you based on your family medical history?" (Yes=1; No =0). Bivariate analyses were used to examine associations between family history and prevalence of disease. Chi-square values were used to determine statistical significance. A two-tailed p value of less than .05 was considered statistically significant. Logistic regression was used to calculate odds ratios for the risk of being diagnosed with either asthma or diabetes if a family history were present. Several confounding factors for the prevalence of asthma or diabetes were discovered in the initial analysis, namely, age and smoking history. Odds were adjusted for these confounding factors and both unadjusted and adjusted odds are shown in the results. Finally, bivariate analyses were conducted to determine if adults with a family history of at least one chronic disease of any nature were discussing ways and receiving recommendations for prevention with their health care providers. The same analysis was conducted for respondents with a family history of asthma. Information on patient/provider interaction was not available for respondents with a family history of diabetes. Because females may have greater reason to learn about and discuss family health history, particularly because of childbearing concerns, gender is also included in the analyses. Analyses were conducted using SAS 9.1.3. and SUDAAN Version 10. R esu lts An overview of the sample is provided in Table 1. Nearly threefourths, 69.5%, of Utah adults reported they had a family history of at least one chronic disease. Approximately one-third (33.1%) of adults reported a family history of asthma, and nearly half (46.5%) reported having a family history of diabetes. Females were significantly more likely to report a family history of chronic disease than males for each condition. Among Table 1. Percentages of Utah Adults with a History of At Least One Chronic Disease, Asthma, or Diabetes, Overall and by Gender Utah BRFSS Characteristic Percentage with a Family History of at Least One Chronic Disease1 Percentage with a Family History of Asthma2 Percentage with a Family History of Diabetes3 Percentage (CI) Percentage (CI) Percentage (CI) Total 69.5 (67.9-71.0) 33.1 (30.4-35.8) 46.5 (44.5-48.5) Gender Males 62.7 (60.1-65.1) 28.9 (24.9-33.0) 41.9 (38.8-45.0) Females 76.2 (74.3-77.9) 37.3 (33.6-41.0) 51.1 (48.5-53.7) Asthma Status Diagnosed with Asthma 78.6 (74.9-81.9) 59.0 (51.2-66.7) 55.4 (49.5-61.2) Not Diagnosed with Asthma 67.9 (66.2-69.6) 28.2 (25.4-31.0) 45.2 (43.0-47.3) Diabetes Status Diagnosed with diabetes 83.0 (78.5-86.7) 31.9 (23.6-40.2) 68.9 (62.9-74.3) Not diagnosed with diabetes 68.6 (67.0-70.2) 33.2 (30.3-36.1) 45.1 (43.1-47.2) 1 2006-2008 2 2006 3 2007-2008 CI=95% Confidence Interval ©2010 The University of Utah. All Rights Reserved. A Case for Asthma and Diabetes 9 adults who were diagnosed with asthma, 59.0% reported they had a family history of asthma, compared to 28.2% of those without asthma. Differences were similar for diabetes. Over two-thirds, 68.9%, of adults with diabetes reported a family history of diabetes, compared to 45.1% of those not diagnosed with diabetes. Differences in prevalence between adults with and without asthma or diabetes were statistically significant for each condition. Risk for Utah adults of asthma or diabetes based on family history Results showing associations between family history and the prevalence of asthma and diabetes are illustrated in Figures 1 and 2. As may be seen, nearly three times as many adults with a family history of asthma reported having been diagnosed with asthma (26.9%) compared to adults without a family history of asthma (9.1%). The pattern was similar for adults with and without diabetes. Among adults with a family history of diabetes, 9.0% reported having been diagnosed with diabetes, compared to only 3.5% of adults without a family history of diabetes. The statistical significance persisted when differences were examined by gender. Another way to look at the impact of family history on the prevalence of a chronic disease is through odds ratios. For asthma, the unadjusted odds of being diagnosed with asthma were 3.7 (CI 2.6-5.2) times greater for adults with a family history of asthma compared to adults not reporting a family history of asthma. Adjusting for potentially confounding factors (age and smoking history) decreased the odds only slightly, to 3.6 times (CI 2.6-5.1). The unadjusted odds of having diabetes were 2.7 (2.0- 3.6) times that of adults without a family history of diabetes. After adjustment for age and smoking history, the odds increased to 3.1 (2.3 -4.2). Figure 1. Percentage of Utah Adults Who Have Been Diagnosed with Asthma, by Family History of Asthma, Utah 40 35 30 » 25 (R Iu 20 IS 15 10 5 0 30.1 26.9 22.6 Family History of Asthma No F amily History of Asthma Total Males F emales Figure 2. Percentage of Utah Adults Who Have Been Diagnosed with Diabetes, by Family History of Diabetes, Utah 10.9 M 􀁖 Family History of Diabetes No Family History of Diabetes Total Males Females Collection of family health history information Turning now to the subsample of respondents who reported having a family history of at least one chronic disease, more detailed analysis reveals how they used this information. These respondents were asked if they had ever actively collected health information from their relatives for the purpose of developing a family health history. Only 30.7% reported having ever actively collected family health history information from relatives. Results were similar for adults reporting they specifically had a family history of asthma or diabetes, 25.8% and 32.2%, respectively. Females appear more likely to have ever collected family history information compared to males. Among adults with a family history of any chronic condition, asthma, or diabetes, significantly higher percentages of females reported having ever actively collected health information from relatives for the purpose of developing a family health history. Differences are illustrated in Figure 4 (also see Table 2). Discussions of risk with health professional: 10 A Case for Asthma and Diabetes ©2010 The University of Utah. All Rights Reserved. Figure 3: Unadjusted and Adjusted Odds for Asthma and Diabetes Based on Family History, BRFSS 2006 (Asthma), 2007-2008 (Diabetes) 6 5 4 -a 3 O 2 1 0 3.7 3.6 Unadjusted Adjusted Asthma 3.1 Unadjusted Adjusted Diabetes Note: Adjustment includes age and smoking Figure 4. Percentage of Utah Adults Who Have Actively Collected Family Health History Information, by Family History and Gender, Utah BRFSS 45 40 35 30 bX « 25 §£ 20 - 15 10 5 0 Males F emales Family History of at Family History o f Family History of Least One Chronic Asthma (2) Diabetes (3) Disease (1) Collection of family history is important, but it is equally important that people act on what they know and that they discuss their family history with their health care provider. Because diabetes and asthma risks are so strongly linked to family history, this discussion is especially important for those with a family history of either disease. Comparisons were made to see if respondents with a family history of asthma, in particular, were more likely to discuss their disease risk than respondents, overall, with a history of any chronic disease (This information was not available for respondents with a family history of diabetes). Of adults who reported having a family history of at least one chronic illness, less than half (41.1%) reported having ever discussed their risk for certain diseases based on family history with a health care professional. Results were similar for adults with a family history of asthma, with only 40.1% reporting they had ever discussed their risk for disease with a health care professional based on their family history. Data suggest that females were more likely than males to have discussed their risk for disease with a health care professional, but the difference was not statistically significant (see Table 2). Recommendations by provider based on family history: Among adults with a family history of any chronic disease only 35.0% reported having ever received recommendations from a health care professional regarding their risk for developing certain diseases based on their family history. A slightly higher percentage of females reported that a health care professional had discussed their risk for disease with them compared to males (37.1% vs. 32.5%), though differences were not statistically significant. Findings for adults with a family history of asthma specifically were similar, with only 34.4% reporting that a health care professional had ever discussed their risk for disease with them based on their family history. There were no differences between males and females. Results for adults with a family history of diabetes were not available. A summary is included in Table 2. D iscu ssio n Having a family history of a chronic disease increases the risk for developing it, yet the majority of adults are not taking advantage of the opportunity to mitigate their risk by collecting family health history information and discussing prevention ©2010 The University of Utah. All Rights Reserved. A Case for Asthma and Diabetes 1 1 Table 2. Collection, Discussion of Risks for Disease and Provider Recommendations Made Based on Family History Utah, BRFSS Subsample 2006-2008 Collected Family Health History 1,2,3 Ever Discussed Risk of Disease with Health Professional Based on Family History 2 Ever Received Recommendations from Health Professional Based on Family History 2 Percentage (CI) Percentage (CI) Percentage (CI) Adults with Family History of at Least One Chronic Disease 1 2006-2008 2 2006 3 2007-2008 CI=95% Confidence Interval with their health care provider. Findings from this study indicate that few adults, even those with a known family history of chronic illness, discuss their risk for disease based on family history in the health care setting. Results also suggest that health care professionals may need to take a more active role in promoting discussion of family health history with their patients. More than two thirds of Utah adults report they have a family history of at least one chronic disease, and most recognize that family history is a risk factor for a number of chronic diseases. Data from this study support the notion of increased risk. In particular, there was a dramatically increased risk for having an asthma diagnosis if a family member had asthma. This increased risk persisted even after adjustment for potentially confounding factors. Results were similar for those with a family history of diabetes. Nevertheless, less than one third of adults with a family history of a chronic disease, including asthma and diabetes, are actively pursuing information about their family health history. Less than half of adults in Utah with a family history of at least one chronic disease, asthma, or diabetes reported they had discussed their risk based on family history with their health care provider; and even fewer, just over one-third, reported they had received recommendations from their health care provider for preventing the disease based on their family health history. Knowing and discussing family health history is an important part of preventive health care. As Americans today are living longer than ever before, their chances for developing a chronic condition continue to rise. Nevertheless, much can still be done to mitigate the risk. One of the most effective methods would be to help individuals better understand the role family health history plays on their personal risk for a disease. Most people are aware of the link between family health history and risk of disease, yet the collection and discussion of family health history information for disease prevention is widely underused. Public health interventions aimed at reducing the prevalence of chronic diseases must encourage individuals to collect their family health histories and speak to their health care providers about prevention. A number of family health history collection tools are available. One tool recommended by the authors is the family health history toolkit developed by the Utah Department of Health. This toolkit is available online at Family Health History Toolkit, http://health.utah.gov/genomics/familyhistory/toolkit.html. Limitations Information is self-reported and is subject to the biases inherent in any self-reported survey. Not all questions were asked in all years, limiting the availability of data. Information regarding timing of primary care visits versus timing of family health history awareness was not available. Finally, the information contained in the survey presented only the respondents' view- 12 A Case for Asthma and Diabetes ©2010 The University of Utah. All Rights Reserved. 􀀕 􀀓 􀀔 􀀓 􀀃 􀀸􀀷􀀤􀀫􀀊􀀶􀀃 􀀫􀀨􀀤􀀯􀀷􀀫􀀝􀀃 􀀤􀀱􀀃􀀤􀀱􀀱􀀸􀀤􀀯􀀃 􀀵􀀨􀀹􀁌􀀨􀀺 point; health care providers may have a different perspective of having discussions and giving recommendations to patients. Acheson, LS, Wiesner, GL, Zyzanski, S J, Goodwin, MA, & Stange, KC (2000). Family history-taking in community family practice: Implications for genetic screening. Genetic M ed (3) 2, 180-185. Abstract available from http:// www.ncbi.nlm.nih.gov/pubmed/11256663?itool=EntrezSystem2.PEntrez. Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=12 Annis AM, Caulder MS, Cook ML, & Duquette D. (2005). Family history, diabetes, and other demographic and risk factors among participants o f the National Health and Nutrition Examination Survey 1999-2002 Preventing Chronic Disease. Available from: http://www. cdc. gov/pcd/issues/2005/ apr/04_0131.htm Centers for Disease Control and Prevention (2004). Awareness of family health history as a risk factor for disease --- United States, 2004 (Morbidity and M ortality Weekly Report 54(44): 1044-1047. Available from http://www. cdc.gov/mmwr/preview/mmwrhtml/mm5344a5.htm Centers for Disease Control and Prevention (2010). Family Health History. Available from http://www.cdc.gov/genomics/famhistory/index.htm Hariri S, Yoon, PW, Qureshi N, Valdez R, Scheuner MT & Khoury MJ (2006). Family history of type 2 diabetes: A population-based screening tool for prevention? Genet Med.(2):102-8. Abstract available from http://www. ncbi.nlm.nih.gov/pubmed/16481893 Li H, Isomaa B, Taskinen MR, Groop L & Tuomi T (2000). 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