P5-17-06: Pilot Study of a Questionnaire To Assess Impact of a Breast Cancer Diagnosis in Young Women on Their Relationship with Their Mothers.
Authors: Ali A , Fergus K , Wright F , Pritchard K , Kiss A , Warner E 
Published: June 2012

Abstract
Background
Breast cancer in young women (≤ 40) is associated with greater morbidity, both physical and psychological, and mortality than in older women. For women in their 20s and 30s we would expect the mother daughter relationship to be uniquely impacted by breast cancer. However, no study has apparently looked at the effects of a breast cancer diagnosis in this situation. We completed a pilot study to assess the clarity, content and sensitivity of a questionnaire that will be used in a comprehensive assessment of this relationship in young women with breast cancer.
Methods: A questionnaire with a mixture of Likert and open-ended items was developed after a literature review, obtaining input from an interdisciplinary panel of experts in psychology, medical oncology, research methodology, and breast cancer, and informal interviews with 3 young breast cancer survivors. Topics covered include demographics, nature of the mother-daughter relationship pre and post diagnosis and sources of support to daughters and mothers. Ten breast cancer survivors (≤ age 40 at diagnosis and &gt; 36 months after their diagnosis) were asked to assess the questionnaire.
Results: Ten patients, median age 37 years (range 31–52), participated in the pilot study. The average time to complete the questionnaire was about 30 minutes. No questions were reported to be upsetting. All but 1 patient indicated that the questionnaire was clear. The questionnaire was modified based on patient feedback. The number of items was reduced from 51 to 38. Items concerning, for example, nature of the mother-daughter relationship during childhood or teenage years, and openness to discussing personal gynecological matters prior to breast cancer diagnosis were ultimately excluded. A question inquiring about the most difficult issues the daughter faced after diagnosis was added. Some questions were changed from open ended format to relevant tick box options after reaching response item saturation during the pilot phase. Of the 10 patients, 8 felt close to their mothers in the year prior to their diagnosis. Seven patients reported turning to their mothers for support when they first learned of the diagnosis, and 4 stated their mother was the first person they turned to. All 10 felt their mothers were emotionally and practically supportive. Five indicated that their relationship got closer postdiagnosis. One patient reported that her mother was not coping, and 3 indicated that their mothers did not have adequate support. Many patients felt that health care providers could help mothers by being empathetic, providing information, and linking mothers with supports.
Discussion: The mother-daughter relationship is an important source of support for young breast cancer survivors. Our questionnaire will be used in 100 women ≤ age 40 and within 3 years of diagnosis to further study the impact of breast cancer in a young woman on the mother-daughter relationship and to determine whether any intervention targeted to the mothers (eg. information or support groups) might be helpful.
Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P5-17-06.