Who participates in a family study?

Plaetke

et al. 2002

Genetics in Medicine

Purpose: To develop a procedure that enhances enrollment and addresses ethical issues associated with participation in genetic family studies. Methods: The Contextual Assessment Approach (CAA) was standardized to the recruitment procedures in the Family Investigation of Nephropathy and Diabetes (FIND) study at the University of Texas Health Science Center at San Antonio. Structured interviews with the CAA questionnaire (CAA-Q) were conducted with 50 low-income Mexican-American probands. The CAA allows systematic interpretation of health beliefs, family dynamics, and attitudes regarding participation in FIND. Data analyses included qualitative and quantitative methods. Results: CAA analyses of probands' perspectives regarding relatives' enrollment in FIND facilitated recruiting 34 probands from whom 30 families were enrolled (family enrollment rate: 88%). CAA reduced recruitment efforts by 32% and avoided exerting undue pressure on unwilling participants to ensure voluntary participation. Remarkably, 76% of the subjects were unaware of any risk associated with participation in genetic family studies. Conclusions: Administering the CAA-Q before enrolling subjects in FIND increased our enrollment rate by targeting efforts toward the willing subjects and addressing ethical issues associated with their participation. Genet Med 2002:4(6):451-463. Key Words: genetic family studies, ethical issues, Contextual Assessment ApproachThe prevalence of type 2 diabetes (T2DM) in Mexican Americans is two to three times higher than in the general population, predisposing them to develop diabetic nephropathy (DN) more than non-Hispanic whites. 1 DN (occurring mainly in adults) clusters in families with T2DM, suggesting that there is a genetic susceptibility for its development and progression. 2 The main goal of the Family Investigation of Nephropathy and Diabetes (FIND) study is to identify gene(s) involved in the development of DN (http://darwin.cwru.edu/ FIND). As a Participating Investigation Center in FIND, we are recruiting Mexican-American DN probands (first affected family member recruited into the study) with a family history of T2DM and their siblings and parents living in the San Antonio metropolitan area. FIND inclusion criteria include recruiting probands who have advanced nephropathy secondary to T2DM and have both living, willing parents or at least one sibling with T2DM or DN.The success of a genetic family study (GFS) depends on recruiters' ability to enroll a sufficient number of probands and their relatives. Enrollment of probands and select family members is influenced by a variety of factors including social, cultural, and ethical components. 3 One important ethical issue is to ensure subjects' informed, voluntary consent prior to their participation in GFS. 4 Understanding these factors will enhance enrollment and address ethical issues associated with participation in GFS. In this report, we introduce the Contextual Assessment Approach (CAA), a method that we found helpful while conducting 50 structured inte...

Section: Resultsmentioning

confidence: 99%

Section: Contextual Assessment Approachmentioning

confidence: 99%

Incorporating the Contextual Assessment Approach to regimens used in genetic family studies

Plaetke

et al. 2002

Genetics in Medicine

“…An exception is Norden et al's [20] work, who found that the only difference between participants and non-participants in their mood disorder family study concerned the patients' reluctance to grant investigators access to relatives with drug abuse and PD. Since depressive patients tend to form symbiotic relationships, spouses may decide on attrition.…”

Section: Introductionmentioning

confidence: 93%

Sampling Biases in a Marital Study on Severe Major Depression

et al. 1999

A comparison was carried out between participants and refusers to participate in a 2-year prospective follow-up study of major depression. 88 consecutively admitted patients of the Psychiatric University Hospital Heidelberg had been addressed. All of them fulfilled both the ICD-9 criteria for Endogenous Depression and the DSM-III-R criteria for Major Depression according to SCID. 38 patients declined participation. Participants and refusers were compared with regard to 56 items of psychopathological symptomatology, socio-demographic data, quality of marital relationship, and personality features. The information about these items was taken systematically from the medical records both of participants and refusers. For some items methods of content analysis were applied to the case histories. Only few differences between participants and refusers were found. Women and more severely ill patients were less willing to accept participation. The degree of marital problems did not differentiate between consenters and refusers.

“…It has been noted in other studies that individuals who have serious psychiatric disorders are often estranged from family members [5].…”

Section: Introductionmentioning

confidence: 94%

“…The little work that has been conducted in this domain suggests that multiple variables affect willingness to participate [4,5]. Serious mental illness can be associated with stigma, cognitive deficits, a low energy state, and sometimes paranoia.…”

Section: Introductionmentioning

confidence: 99%

A description of the process of recruitment for research studies investigating the genetics of psychotic illness

Mathos¹,

Gur²,

Lokar³

et al. 2006

Curr Psychiatry Rep

Collecting biometric data on probands and family members is pivotal for advancing the understanding and treatment of any medical disorder with genetic contributions. The process of recruiting probands with psychosis and their family members for genetic studies has proven to be challenging. We present the recruitment strategies of two sites that are collaborating in genetic studies. We review details of referral sources at these sites. Of 69 participants recruited from the University of Pittsburgh, 23% were self-referrals, 30% were encouraged by family, and 47% were encouraged by clinicians. Of 48 probands from the University of Pennsylvania, 6% were self-referrals, 21% were encouraged by family, and 73% were encouraged by clinicians. Qualitative data from focus groups are reviewed. Strategies that helped to facilitate recruitment and foster community networking are discussed. This preliminary study has broad implications as a potential model for collaboration among patient support groups, family groups, clinicians, and researchers.