Dorothee Noeres

Ways to obtain a breast cancer diagnosis, consistency of information, patient satisfaction, and the presence of relatives

Goals of workWhat physicians told breast cancer patients about their diagnosis, who informed them, and how this information was conveyed were examined in this study. Finally, the relatives’ role in this communication process was considered.Materials and methodsWomen with primary breast cancer (N = 222) below the age of 70 were interviewed after surgery and after they were informed about their diagnosis.Main resultsOne hundred twenty-one women consulted their primary gynecologist first, then they were referred to a radiologist, and finally to the secondary care gynecologist. Forty-seven women omitted the radiologist and only five went directly to the hospital for treatment. In most cases (N = 199), the general practitioner was not involved. Receiving inconsistent information was associated with patient dissatisfaction. This also applies to women who received their diagnosis on the phone. Women awaiting a worse diagnosis were more likely to be accompanied by another person.ConclusionsFuture studies should focus on the possible involvement of family doctors and relatives during the diagnostic process. Giving inconsistent information should be avoided.

Differences in illness-related knowledge of breast cancer patients according to their involvement in self-help groups

Objective. There is little evidence of the gain in illness-related knowledge obtained in breast cancer self-help groups. This paper seeks to explore whether participants in self-help groups know more about breast cancer than non-participants and to examine the level of knowledge of leaders of self-help groups in comparison to the other two groups. Methods. A sample of 727 women affected by breast cancer was interviewed with a self-administered questionnaire assessing knowledge on disease, prevention, and aftercare. The interviewing took place during three different surveys conducted between 2005 and 2009. The data of the second and third survey were used in order to create a larger data base and to include self-help group leaders. Results. Participants in self-help groups knew significantly more than non-participants, although only in the subtests lymph edema and breast-examination. Leaders of support groups scored highest in all subtests. Involvement in a support group was most decisive for respondents’ knowledge, but other factors such as age, education, and medical history also had effects. Conclusion. Self-help groups provide a considerable potential for acquiring illness-related knowledge. As the participation rate in German breast cancer self-help groups is still quite low, it seems reasonable to generate more interest in this kind of support.

Krankheitsbewältigung und soziale Unterstützung im Verlauf des Mammakarzinoms

Mammakarzinome gehören in Deutschland zu den häufigsten Todesursachen bei Frauen. Neben der Frage, ob es einen Zusammenhang zwischen akuter bzw. chronischer Belastung und dem Krankheitsverlauf gibt, interessiert seit den 70er Jahren, ob das krankheitsbezogene Bewältigungsverhalten der betroffenen Frauen sowie die soziale Unterstützung das Risiko von Rezidiven und Metastasen beeinflussen (1, 2). Häufig kamen dabei lediglich Fragebögen zum Einsatz. Krankheitsstadien und Veränderungen im Copingverhalten wurden in die Beurteilung nicht mit einbezogen. In der vorliegenden Studie werden die anhand eines leitfadengesteuerten Interviews erfassten Veränderungen in der Krankheitsbewältigung und der sozialen Unterstützung bei betroffenen Frauen über einen Zeitraum von 10 Jahren untersucht und mit verschiedenen medizinischen Outcomevariablen (Rezidive, Metastasen, Letalität) in einen Zusammenhang gebracht. Forschungsprojekt „Der Einfluss lebensverändernder Ereignisse beim Verlauf des Mammakarzinoms“