Women with breast cancer often experience significant distress. Currently, there are no questionnaires aimed at identifying women's unique and possible changing indicators for distress in surgical continuity of care for breast cancer. We developed and tested three questionnaires specifically for this use.
We first searched PubMed, CINAHL and PsycINFO to retrieve information on previously described indicators. Next, we conducted a focus group interview with 6 specialised nurses, who have extensive experience about consequences of breast cancer for women in surgical continuity of care. The questionnaire was tested on 18 women scheduled for breast cancer surgery. Subsequently, the women were debriefed to gain knowledge about comprehensibility, readability and relevance of items, and the time needed to complete the questionnaire. After adjustment, the questionnaires were field-tested concomitantly with a clinical study, which both consisted of a survey and an interview study.
Three multi-item questionnaires were developed specific to different time points in surgical continuity of care. The questionnaires share a core of statements divided into seven sub-scales: emotional and physical situation, social condition, sexuality, body image, religion and organisational factors. Besides the core of statements, each questionnaire has different statements depending on the time point of surgical continuity of care when it was to be responded to.
The questionnaires contain comprehensive items that can identify indicators for distress in individual women taking part in surgical continuity of care. The items were understandable and the time used for filling in the questionnaires was reasonable.
A diagnosis of breast cancer is a key turning point in a woman's life that may lead to her experiencing severe and persistent distress and potentially presaging a psychiatric disorder, such as major depression. In Denmark an increased standardization of care and a short hospital stay policy minimize the time of medical and nursing surveillance. Consequently, there is the potential risk that distress goes unnoticed, and therefore, untreated. Therefore, the purpose of this study was to explore the experience of distress in Danish women taking part in surgical continuity of care for breast cancer.
A phenomenological-hermeneutic approach inspired by the French philosopher Paul Ricoeur was conducted to explore the experience of distress in relation to surgical treatment and care for breast cancer. Semi-structured interviews were conducted with 12 women who recently had surgery for breast cancer at six departments of breast surgery in Denmark from May 2013 to November 2013.
The understanding of the experience of distress in the period of surgical continuity of care for breast cancer is augmented and improved through a discussion related to four identified themes: A time of anxiety, loss of identities, being treated as a person and being part of a system, drawing on theory and other research findings.
Distress experienced by women in the period following diagnosis arises from multiple sources. Support and care must be based on the woman's individual experience of distress.
Women with breast cancer often experience distress. This cohort study investigated the prevalence of distress, predictors of distress, and changes in distress during surgical continuity of care for breast cancer (from diagnosis to commencement of adjuvant treatment).
The participants were 1079 women with breast cancer who were recruited between April 2013 and May 2014 from 11 breast surgery departments in Denmark. Distress was evaluated using the Distress Thermometer (DT) and predictors of distress were assessed with a self-administered questionnaire at the time of diagnosis (T1), at discharge (T2), and by the start of adjuvant treatment or follow-up (T3). Repeated measures ANOVA, simple and multiple linear regression, and mixed effects regression models were used to identify predictors and estimate changes in distress.
At T1, 249 (24.3%) women reported no or minimal distress, 298 (29.1%) moderate distress, and 407 (39.8%) severe distress. The mean distress was 5.5 points on the DT, which decreased by 0.70 (95% confidence interval (CI) -0.80, -0.54) points from T1 to T3. Predictors of distress were time since diagnosis, age, prior or concurrent intake of antidepressants or sedative medicine, prior emotional status, children living at home, feelings regarding femininity and attractiveness, and hospital.
More than two-thirds of women with breast cancer experienced moderate or severe distress. Mean distress decreased slightly during surgical continuity of care. However, for some women, distress remained unchanged or even worsened. These findings highlight the need to identify the individual women with distress and offer them adequate support and care.