Neoplasms

Digestive System Diseases

All Conditions

Diseases and Abnormalities at or Before Birth

Nutritional and Metabolic Diseases

Symptoms and General Pathology

Colonic Neoplasms

Colorectal Neoplasms

Colorectal Neoplasms, Hereditary Nonpolyposis

Intestinal Neoplasms

Gastrointestinal Neoplasms

Digestive System Neoplasms

Gastrointestinal Diseases

Colonic Diseases

Intestinal Diseases

Syndrome

Neoplastic Syndromes, Hereditary

Genetic Diseases, Inborn

DNA Repair-Deficiency Disorders

Metabolic Diseases

Herbal and Botanical

All Drugs and Chemicals

Cola

This study, conducted by NHGRI and the M.D. Anderson Cancer Center in Houston, Texas, will develop statistical approaches for modeling family social structure and apply these models to explore the role of family social structure in participation in genetic testing and counseling, disclosure of test results and adjustment to risk status. With recent genetic advances and the ability to test for hereditary illnesses, methods that provide an understanding of the family social structure and how that structure affects the dissemination of genetic risk information are increasingly important.

The data for this study were collected by the M.D. Anderson Cancer Center as part of a study on family communication and family functioning with regard to genetic testing for hereditary nonpolyposis colon cancer (HNPCC). Relatives of people with HNPCC are more likely than the general population to get colon cancer and other types of cancer if they have inherited the gene alteration (mutation) that predisposes to the disease. This alteration can be passed on from a parent to some or all of his or her children.

In the M.D. Anderson Cancer Center study, telephone interviews were conducted with 80 adult members of 16 extended families with a known gene alteration predisposing for HNPCC. These participants included people who had been diagnosed with an HNPCC syndrome cancer, their unaffected family members who were at risk of carrying a gene mutation for HNPCC, and their spouses. Participants were interviewed about their feelings, moods, coping style, and relationships with their spouse, relatives, and friends, about their willingness to have genetic testing, and about their feelings and beliefs about colon cancer, cancer screening and genetic testing and counseling. Some participants were asked about their family communication style and how the family coped with the idea of genetic testing and with the results, if testing was done.

The information obtained from the current study may help facilitate family participation, communication and psychological adjustment regarding risk information about genetic diseases.

The current research has two objectives: (1) development of statistical methods for modeling family systems, and (2) characterization of the psychosocial and relational aspects of families with a known mutation for hereditary nonpolyposis colon cancer (HNPCC). This work focuses on the family, and the family's social structure, as the unit of study. Data were collected between 8/1999 and 6/2002 at the University of Texas MD Anderson Cancer Center (UTMDACC) as part of a qualitative study of family communication and family functioning with regard to HNPCC genetic testing. Semi-structured telephone interviews were conducted with 80 adult members of 16 extended families with a known HNPCC-predisposing mutation. Family members included those who had been diagnosed with a HNPCC syndrome cancer, unaffected individuals who are at risk of carrying a mutation, and their spouses. The semistructured interview guide was designed to define family network members and to measure the social relations within each respondent's familial network. Social network data were collected describing the support, communicative, and affective relationships between respondents' and members of their family. Both positive (e.g. closeness) and negative (e.g. conflict) relationships were measured. Communication relations specific to disclosure of mutation status, cancer risk, participation in genetic testing and counseling efforts and surveillance practices were obtained. In addition to relational measurements, demographic, health-related (e.g. previous cancer diagnoses, adherence to surveillance regimens), psychosocial (e.g. distress, coping) and behavioral (e.g. participation in genetic testing) measures were obtained. The measurement methodology involved the use of interdependent ego-centered networks. The respondents, or egos, defined those persons (alters) who they perceived to be members of their family. Each respondent was then interviewed to obtain relational measurements (e.g. social support, communication) for each of their alters. Respondents who were members of the same family may name each other as family members and also may have alters in common. This interdependency based on overlapping family membership needs to be accounted for in the statistical approaches used to analyze the data. The primary goal of the current project is to develop and refine statistical models for interdependent ego-centered networks. The developed models will then be used to investigate the role of the familial social structure in communications about genetic testing and counseling, disclosure of mutation status, participation in genetic testing and counseling efforts, and adjustment to risk status.

Psychosocial Aspects of Genetic Testing for Hereditary Nonpolyposis Colon Cancer

Psychosocial Aspects of Genetic Testing for HNPCC

National Human Genome Research Institute (NHGRI)

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Uterine Cervical Neoplasms

Uterine Neoplasms

Genital Neoplasms, Female

Urogenital Neoplasms

Uterine Cervical Diseases

Uterine Diseases

Genital Diseases, Female

Genital Diseases

Urogenital Diseases

Female Urogenital Diseases

Pregnancy Complications

Female Urogenital Diseases and Pregnancy Complications

7-sesson group intervention that uses dyadic instruction, role playing and group sharing and discussion to reduce internalized stigma, improve disclosure decision making and healthy living, and teach advocacy skills

Participants will not receive the intervention until all follow-up data has been collected.

The group intervention draws on theories of social diffusion, cognitive consistency, and social influence, and our own recently developed and tested group intervention that mobilized people living with HIV in Uganda to successfully act as change agents for HIV prevention within their social networks. The intervention actively targets internalized stigma, disclosure decision making, healthy living, and advocacy communication skills. The ultimate goal of the program is to encourage female social network members to get screened for cervical cancer.

WOMEN FIGHTING TO STOP CERVICAL CANCER

Rhoda Wanyenze, MD

This study pilots a 7-session group intervention among 40 screened women, 20 of whom will be randomly assigned to take part in the intervention, and 20 to the wait-list control. Assessments will be administered at baseline and month 6 to index participants as well as up to three unscreened female social network members of each index participant (up to 120 total). The primary outcome is CC screening among participating social network members.

Cervical cancer (CC) is the most common cancer and accounts for \~25% of all cancer related deaths among women in Uganda, which has one of the highest incidence rates in the world. Adding to the burden is the general lack of knowledge about, and social stigma towards CC and its screening in Uganda, where lifetime CC screening is estimated to be as low as 5%. There is a dire need to increase CC screening in Uganda to ensure timely and lifesaving treatment, as well as the need to enhance the capacity to conduct behavioral and health services research related to CC and other stigmatizing conditions among local researchers and service providers. Accordingly, the proposed intervention pilot study seeks to (1) empower women who have been screened for CC, to advocate for CC screening and early treatment among women in their social networks, and (2) engage and train local public health researchers and programmers. The proposed intervention draws on theories of social diffusion, cognitive consistency, and social influence, and the investigator's recently developed and tested group intervention that mobilized people living with HIV in Uganda to successfully act as change agents for HIV prevention within their social networks. The intervention actively targets internalized stigma, disclosure decision making, healthy living, and advocacy communication skills. This study will pilot the intervention among 40 screened women, 20 of whom will be randomly assigned to take part in the intervention, and 20 to the wait-list control. Assessments will be administered at baseline and month 6 to index participants as well as up to three unscreened female social network members of each index participant (up to 120 total). The primary outcome is CC screening among participating social network members. The primary aims of the study are to assess the feasibility, acceptability and preliminary efficacy of the group intervention to promote CC screening and treatment; identify characteristics associated with successful advocacy; and increase local capacity for conducting public health research on CC control and use of social network-based intervention and measurement methods.

randomized controlled trial of parallel groups

Promoting Cervical Cancer Screening Through the Advocacy of Screened Women

Pilot of a Network-driven, Advocacy Intervention to Promote Cervical Cancer Screening in Uganda

cervical cancer screening among women in social network

discussing cervical cancer and encouraging CC screening with women in social network

Makerere University

Rays of Hope Hospice Jinja

African Palliative Care Association

RAND

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Psychosocial Aspects of Genetic Testing for Hereditary Nonpolyposis Colon Cancer	NCT00341575	HNPCC Hereditary Nonp...		18 Years - 82 Years	National Institutes of Health Clinical Center (CC)
Promoting Cervical Cancer Screening Through the Advocacy of Screened Women	NCT04960748	Cervical Cancer...	WOMEN FIGHTING ...	18 Years -	RAND
Psychosocial Aspects of Genetic Testing for Hereditary Nonpolyposis Colon Cancer	NCT00341575	HNPCC Hereditary Nonp...		18 Years - 82 Years	National Institutes of Health Clinical Center (CC)
Promoting Cervical Cancer Screening Through the Advocacy of Screened Women	NCT04960748	Cervical Cancer...	WOMEN FIGHTING ...	18 Years -	RAND
Psychosocial Aspects of Genetic Testing for Hereditary Nonpolyposis Colon Cancer	NCT00341575	HNPCC Hereditary Nonp...		18 Years - 82 Years	National Institutes of Health Clinical Center (CC)

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