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PubMed1998

Reproductive health in males with cystic fibrosis: knowledge, attitudes, and experiences of patients and parents.

Males with cystic fibrosis (CF) are generally infertile as a result of aberrant development of Wolffian duct derivitives. The personal significance of this and related reproductive and sexual health (RSH) issues is unknown. We set out to describe the knowledge, attitudes, and experiences regarding RSH in a group of adolescent and adult males with CF, as well as the knowledge and attitudes of parents. This descriptive study was based on a semi-structured interview utilizing in-depth interview techniques. Questions included aspects of knowledge, attitudes, and experiences. Adolescent (aged 14-17 years) and adult (at least 18 years) males attending the Children's Hospital Cystic Fibrosis Clinic, Boston, MA, USA, or hospitalized at the Children's Hospital over that period were eligible; the accompanying parent of the adolescent was also interviewed. Consecutive eligible males were interviewed over a 3 month period. Summary data are presented, attitudinal data are analyzed qualitatively, and a selection of representative transcript data are reported to describe the range of opinions. Fifty males (10 adolescents, 40 adults) participated; this constituted a consecutive sample of 44% of the eligible clinic population. Ninety percent of adults, 60% of adolescents, and 50% of parents knew of male infertility. The mean age (+/-SD) at which adults recalled first hearing this was 16.0 +/- 4.7 years and 13.9 +/- 1.6 years for those adolescents who knew of infertility. Nineteen (48%) of adults and 5 (83%) of adolescents first heard about infertility from their health care providers. Ninety percent reported no major distress upon first hearing about infertility during adolescence. Increasing significance of infertility with maturity was reported by 12 men (30%); only 4 adults (10%) reported that infertility was not a significant aspect of CF. Forty percent knew that males with CF have a small volume ejaculate, but none had been told this by a health care provider. Thirty percent of men had semen analysis performed and all were azoospermic. We conclude that the majority of males with CF know of likely infertility. The significance of this knowledge changes with time. Poor knowledge and confusion surround a range of RSH issues in males with CF.

Adolescent↗
PubMed1999

Critical evaluation of medical, statistical, and occupational data sources in the Kola Peninsula of Russia pertinent to reproductive health studies.

BACKGROUND: The feasibility study described herein was prompted by a report in 1992 of possible reproductive and developmental health concerns among female workers in a Russian nickel refinery. OBJECTIVE: The primary goal was to ascertain whether medical, statistical, and occupational data bases could be accessed for information about the pregnancy histories, occupational histories, and life-style factors of the women affected. METHODS: The project was facilitated by construction of a registry of all births in three towns with a nickel refinery and verification of its contents against patients' records obtained from hospital delivery and gynecology departments and community polyclinics. Municipal Registration Board, Regional Health Statistics Board, and nickel company records were also reviewed. RESULTS: Reproductive/developmental outcome information and workplace histories were acceptable. Sample-size calculations indicated that a cohort or cross-sectional study would be amenable and suitable for the detection of an excess risk for spontaneous abortion with adequate statistical significance and power. Such investigations would need to be supplemented by workplace environmental/biological monitoring assessments for evaluation of exposure to occupational hazardous factors and a worker's questionnaire to obtain information about life-style factors. A case-control design is recommended for the study of congenital defects. CONCLUSIONS: A well-designed, comprehensive epidemiology study is technically feasible because of the availability of a favorable pool of study subjects, reproductive/developmental outcome data, information to control for major confounders, and suitable occupational records.

Adult↗