How is family health history discussed in routine primary healthcare? A qualitative study of archived family doctor consultations

ObjectivesFamily health history underpins genetic medicine. Our study aimed to explore language and patterns of communication relating to family health history observed in interactions between general practitioners (GPs) and their patients within routine primary care consultations.DesignSecondary analysis of patient and GP routine consultation data (n=252).ParticipantsConsultations that included ‘family health history’ were eligible for inclusion (n=58).Primary outcomesA qualitative inductive analysis of the interactions from consultation transcripts.Results46/58 conversations about family health history were initiated by the GP. Most discussions around family history lasted for between approximately 1 to 2 min. Patients were invited to share family health history through one of two ways: non-specific enquiry (eg, by asking the patient about ‘anything that runs in the family’); or specific enquiry where they were asked if they had a ‘strong family history’ in relation to a particular condition, for example, breast cancer. Patients often responded to either approach with a simple no, but fuller negative responses also occurred regularly and typically included an account of some kind (eg, explaining family relationships/dynamics which impeded or prevented the accessibility of information).ConclusionsFamily health history is regarded as a genetic test and is embedded in the sociocultural norms of the patient from whom information is being sought. Our findings highlight that it is more complex than asking simply if ‘anything’ runs in the family. As the collection of family health history is expected to be more routine, it will be important to also consider it from sociocultural perspectives in order to help mitigate any inequities in how family history is collected, and therefore used (or not) in a person’s healthcare. Orientating an enquiry away from ‘anything’ and asking more specific details about particular conditions may help facilitate the dialogue.

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The family health history workbookBy Marnie Mahoney and Ronnie Lichtman, CNM. New York: William Morrow, 1982. 320 pages. $12.95, softcover

Journal of Nurse-Midwifery ◽

10.1016/0091-2182(86)90194-1 ◽

1986 ◽

Vol 31 (1) ◽

pp. 58-59

Keyword(s):

New York ◽

Family Health ◽

Family Health History ◽

Health History ◽

The Family

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Put the Family Back in Family Health History: A Multiple-Informant Approach

American Journal of Preventive Medicine ◽

10.1016/j.amepre.2016.11.018 ◽

2017 ◽

Vol 52 (5) ◽

pp. 640-644 ◽

Cited By ~ 6

Author(s):

Jielu Lin ◽

Christopher S. Marcum ◽

Melanie F. Myers ◽

Laura M. Koehly

Keyword(s):

Family Health ◽

Family Health History ◽

Health History ◽

The Family

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Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients

Journal of Personalized Medicine ◽

10.3390/jpm11101046 ◽

2021 ◽

Vol 11 (10) ◽

pp. 1046

Author(s):

Sungwon Yoon ◽

Hendra Goh ◽

Si Ming Fung ◽

Shihui Tang ◽

David Matchar ◽

...

Keyword(s):

Breast Cancer ◽

Risk Assessment ◽

Cancer Patients ◽

Assessment Tool ◽

Family Health ◽

Personal Control ◽

Family Health History ◽

Risk Assessment Tool ◽

Breast Cancer Patients ◽

Health History

A family health history-based risk assessment is particularly valuable for guiding cancer screening and treatment strategies, yet an optimal implementation depends upon end-users’ values and needs. This is not only true prior to disease development, but also for those already affected. The aim of this study is to explore perceptions of the value of knowing one’s family health history (FHH)-based risk, experience using a patient-facing FHH tool and the potential of the tool for wider implementation. Twenty multi-ethnic Asian patients undergoing breast cancer treatment in Singapore completed an FHH-based risk assessment. Semi-structured one-on-one interviews were conducted and data were thematically analyzed. All participants were female and slightly more than half were Chinese. The acceptance and usage of an FHH risk assessment tool for cancers and its broader implementation was affected by a perceived importance of personal control over early detection, patient concerns of anxiety for themselves and their families due to risk results, concerns for genetic discrimination, adequacy of follow-up care plans and Asian cultural beliefs toward disease and dying. This study uniquely sheds light on the factors affecting Asian breast cancer patients’ perceptions about undergoing an FHH-based risk assessment, which should inform steps for a broader implementation in Asian healthcare systems.

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How should we construct psychiatric family history scores? A comparison of alternative approaches from the Dunedin Family Health History Study

Psychological Medicine ◽

10.1017/s0033291708003115 ◽

2008 ◽

Vol 38 (12) ◽

pp. 1793-1802 ◽

Cited By ~ 32

Author(s):

B. J. Milne ◽

T. E. Moffitt ◽

R. Crump ◽

R. Poulton ◽

M. Rutter ◽

...

Keyword(s):

Family History ◽

Genetic Research ◽

Family Health ◽

Significant Family History ◽

First Degree Relatives ◽

Health History ◽

Public Health Screening ◽

The Family ◽

History Of ◽

Strength Of Association

BackgroundThere is increased interest in assessing the family history of psychiatric disorders for both genetic research and public health screening. It is unclear how best to combine family history reports into an overall score. We compare the predictive validity of different family history scores.MethodProbands from the Dunedin Study (n=981, 51% male) had their family history assessed for nine different conditions. We computed four family history scores for each disorder: (1) a simple dichotomous categorization of whether or not probands had any disordered first-degree relatives; (2) the observed number of disordered first-degree relatives; (3) the proportion of first-degree relatives who are disordered; and (4) Reed's score, which expressed the observed number of disordered first-degree relatives in terms of the number expected given the age and sex of each relative. We compared the strength of association between each family history score and probands' disorder outcome.ResultsEach score produced significant family history associations for all disorders. The scores that took account of the number of disordered relatives within families (i.e. the observed, proportion, and Reed's scores) produced significantly stronger associations than the dichotomous score for conduct disorder, alcohol dependence and smoking. Taking account of family size (i.e. using the proportion or Reed's score) produced stronger family history associations depending on the prevalence of the disorder among family members.ConclusionsDichotomous family history scores can be improved upon by considering the number of disordered relatives in a family and the population prevalence of the disorder.

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An Investigation of the Usability Issues of a Family Health History Compiling Application

Proceedings of the Human Factors and Ergonomics Society Annual Meeting ◽

10.1177/1541931218621385 ◽

2018 ◽

Vol 62 (1) ◽

pp. 1699-1703 ◽

Cited By ~ 4

Author(s):

Amal Ponathil ◽

Necmettin Firat Ozkan ◽

Jeffrey Bertrand ◽

Brandon Welch ◽

Kapil Chalil Madathil

Keyword(s):

Experimental Study ◽

Family History ◽

Age Groups ◽

Family Health ◽

User Profile ◽

Family Health History ◽

Health History ◽

Online Tools ◽

Computer Based ◽

Excessive Number

Family health history is considered a useful indicator for early detection or prediction of an individual’s risk for chronic diseases. There are several ways to collect these data, one of which is through online tools. Usability of these applications is vital since they have to serve a diverse user population including different age groups and levels of education. This study investigated the usability issues of a widely used computer-based family history collection tool, the Surgeon General's My Family Health Portrait. A total of 20 participants completed the experimental study. Based on a pre-defined and fictional script, the users completed 5 tasks on the application: 1) creating a user profile, 2) adding family health history, 3) re-accessing the application, 4) editing the information, and 5) sharing the information. Participants reported issues in getting back to the home page (opening screen) and with the excessive number of written instructions on the screen.

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Patterns of Communicating About Family Health History: Exploring Differences in Family Types, Age, and Sex

Health Education & Behavior ◽

10.1177/1090198119853002 ◽

2019 ◽

Vol 46 (5) ◽

pp. 809-817 ◽

Cited By ~ 3

Author(s):

Gemme Campbell-Salome ◽

Emily A. Rauscher ◽

Jennifer Freytag

Keyword(s):

Indirect Effects ◽

Family Health ◽

Family Health History ◽

Open Communication ◽

Health History ◽

The Family ◽

Communication Environments ◽

Conditional Indirect Effects ◽

Open Family ◽

Age And Sex

Family communication environments can be a facilitator or barrier to family cooperation and communication in collecting family health history (FHH) information, which can facilitate disease prevention. This study examined the direct and indirect effects of family communicative environments on whether individuals actively collected FHH information, as well as how age and sex differences complicate this relationship. Participants ( N = 203) completed online surveys, answering close-ended questions about their family’s communication patterns, how open their family is to communicating about FHH, and whether they have actively collected FHH information. Results show there was a direct effect between open family communicative environments and active collection, and found FHH communication openness was a positive partial mediator. Conversely, family environments stressing hierarchy and homogeneity of beliefs inhibit open communication about and collection of a FHH. Analysis of age and sex as moderators in the models showed a significant conditional indirect effects, which grew stronger as participants’ age increased. Furthermore, results showed open family communicative environments lead to active collection of FHH for women, but not for men. Results confirm the importance of family communicative environments in facilitating or inhibiting FHH collection. Findings from the current study provide intervention points for practitioners to advise patients on the importance of collecting a FHH and guide behaviors to collect FHH information based on the family communicative environment.

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Challenges to Implementing the Current Pediatric Cholesterol Screening Guidelines Into Practice

PEDIATRICS ◽

10.1542/peds.94.3.296 ◽

1994 ◽

Vol 94 (3) ◽

pp. 296-302 ◽

Cited By ~ 2

Author(s):

Barbara A. Dennison ◽

Paul L. Jenkins ◽

Thomas A. Pearson

Keyword(s):

Family History ◽

Cholesterol Level ◽

Family Health ◽

Single Parent ◽

Family Health History ◽

Blood Cholesterol ◽

Cholesterol Screening ◽

Health History ◽

Cholesterol Levels ◽

History Of

Objective. The Expert Panel on Blood Cholesterol Levels in Children and Adolescents of the National Cholesterol Education Program (NCEP) recommends selective screening of children for high blood cholesterol. We determined the number of children, who, according to the guidelines, should be targeted for cholesterol screening. Design. Population survey. Setting. Permanent household residents in Otsego County, NY. Participants. Total population-based sample of 17 444 households (86.6% response rate) including 44 565 participants, of whom 10 457 were children, aged 2 through 19 years. Main outcome measures. Percent of children qualifying for cholesterol screening under the NCEP Children's Panel guidelines. Results. Children from two-parent families were more likely to have known family history of coronary heart disease (CHD) before 60 years of age (41.8% vs 25.8%, P < .001), and twice as likely as children from single-parent families to have known parental hypercholesterolemia (18.8% vs 9.5%, P < .001). Only 39% of parents reported having had their cholesterol level checked; they were better educated and more likely to have health insurance. Parents with a first-degree relative with CHD before 60 years of age were more likely to report having their cholesterol level checked and to report a high cholesterol level. We calculated that 27% of children (18% of children from single-parent households and 29% of children from two-parent households) would report a known family history of premature CHD (ie, CHD before 55 years of age) and qualify for lipoprotein analysis, and that 11% of children would qualify for total cholesterol screening because of known parental hypercholesterolemia without a family history of premature CHD. Thirty-five percent of children had incomplete or unavailable family health history and/or unknown parental cholesterol status. Conclusions. In this population, 38% of children would be targeted for cholesterol screening, exceeding the estimate of the NCEP Children and Adolescents Panel. The selection process, however, would tend to miss children from single-parent families, children with incomplete family health history, and children whose parents have not had their cholesterol levels measured. The currently recommended pediatric cholesterol screening policy needs to be evaluated further in additional communities and population settings. Alternative cholesterol screening strategies are needed when family health history is incomplete and/or parental cholesterol status is unknown.

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Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph16244979 ◽

2019 ◽

Vol 16 (24) ◽

pp. 4979 ◽

Cited By ~ 1

Author(s):

Maria Cerda Diez ◽

Dharma E. Cortés ◽

Michelle Trevino-Talbot ◽

Candice Bangham ◽

Michael R. Winter ◽

...

Keyword(s):

Family History ◽

Genetic Counselor ◽

Family Health ◽

Weighted Kappa ◽

Linguistically Diverse ◽

Family Health History ◽

Spanish Speakers ◽

Future Research ◽

Health History ◽

Study Results

Digital family health history tools have been developed but few have been tested with non-English speakers and evaluated for acceptability and usability. This study describes the cultural and linguistic adaptation and evaluation of a family health history tool (VICKY: VIrtual Counselor for Knowing Your Family History) for Spanish speakers. In-depth interviews were conducted with 56 Spanish-speaking participants; a subset of 30 also participated in a qualitative component to evaluate the acceptability and usability of Spanish VICKY. Overall, agreement in family history assessment was moderate between VICKY and a genetic counselor (weighted kappa range: 0.4695 for stroke—0.6615 for heart disease), although this varied across disease subtypes. Participants felt comfortable using VICKY and noted that VICKY was very likeable and possessed human-like characteristics. They reported that VICKY was very easy to navigate, felt that the instructions were very clear, and thought that the time it took to use the tool was just right. Spanish VICKY may be useful as a tool to collect family health history and was viewed as acceptable and usable. The study results shed light on some cultural differences that may influence interactions with family history tools and inform future research aimed at designing and testing culturally and linguistically diverse digital systems.

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Patient experience with family history tool: analysis of patients’ experience sharing their family health history through patient-computer dialogue in a patient portal

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocz008 ◽

2019 ◽

Vol 26 (7) ◽

pp. 603-609 ◽

Cited By ~ 1

Author(s):

Adarsha S Bajracharya ◽

Bradley H Crotty ◽

Hollis B Kowoloff ◽

Charles Safran ◽

Warner V Slack

Keyword(s):

Family History ◽

Electronic Health Record ◽

Medical History ◽

Patient Experience ◽

Family Health ◽

Health Record ◽

Patient Portal ◽

Health History ◽

Family Medical History ◽

The Family

Abstract Objective The collection and use of a family health history are important for assessing the patient’s risk of disease, but history taking is often impeded by practical barriers in the office. Provision for patient-computer dialogue, linked with the electronic health record, may enable patients to contribute their history while bypassing these barriers. We sought to assess the patient experience using such a tool. Materials and Methods We linked the family history module of a computer-based medical history to the patient portal of a large academic health system. The interview consisted of 39 primary questions with a predetermined high test-retest reliability. Patients’ results were structured and summarized, and available within their electronic health record. Patients optionally completed a survey about their experience. We inductively analyzed free-text responses collected between 2014 and 2016. Results Among 97 781 patient portal users, 9562 patients accessed and 4223 patients completed the family medical history interview. Of these patients, 1451 completed our survey. Main themes that were identified included (1) patient empowerment, (2) anticipated value, (3) validity concerns, (4) privacy concerns, and (5) reflections on patient-computer dialogue. Patients also provided suggestions for the improvement of future family history tools. Discussion Patients providing their family health information is an example of collaborative electronic work with clinicians and was seen as valuable by those who participated. Concerns related to contextual information and uncertainty need to be addressed. Conclusions Patient-computer dialogue to collect family medical history empowered patients and added perceived value and efficiency to the patient experience of care.

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