title: Development of a breast cancer specific patients concerns inventory (PCI)
Creators: name: Kanatas, Anastasios
Publisher: name: University of Liverpool Repository
Year: 2014

description: Introduction Treating breast cancer is based on a combination of therapies: surgery, radiotherapy, chemotherapy, as well as hormonal and biological agents. The full impact of the disease and its treatment at a human level is often underestimated, and the benefits of holistic cancer care are increasingly recognised. Furthermore, patients often face a frightening and uncertain journey that presents a variety of needs. Moreover, recovery is not necessarily the end-point of the cancer experience. The many complexities and challenges in the identification of patient issues along this journey can lead to unmet needs. This can be particularly difficult in the confines of a busy clinic, where time constraints, together with an over-reliance on verbal communication, can pose significant barriers to effective consultations. A novel tool, known as the patient concerns inventory (PCI), has been successfully developed and introduced for use in patients with head and neck cancer. In this setting, it has helped to formulate an individualized record of patient concerns, needs, and priorities, thereby structuring outpatient consultations, and promoting and facilitating a multidisciplinary approach. This study aimed to develop and assess a PCI specific to breast cancer and to evaluate its impact on patient care; that is, to provide a “proof of concept” for a breast cancer PCI. Methods This was a four-phase study, as follows. (1) Item generation through a literature review, input from clinicians (n = 10), four patient focus groups (n = 24), and national breast cancer charities (n = 3). (2) A survey of breast cancer patients (n = 200) for cross-sectional validation, to compare the PCI with an established quality of life tool and to look at the relative frequency of items and any associations. (3) A pilot, before and after study, assessing the PCI in a clinical setting with breast cancer patients (n = 53). (4) Semi-structured interviews with a breast surgeon (n = 1) and specialist nurses (n = 2) who used the PCI during clinics, to identify the perceived benefits of using the PCI. Results In total 277 patients responded and participated in this work. The literature review identified 164 items; following input from clinicians, focus groups, and national charities, 56 items remained. The cross sectional study (phase 2; n=200, 80 % response rate) revealed that patients wanted to discuss the following: breast sensitivity or pain (46 %), fatigue (46 %), hot flushes (44 %), sleep (34 %); breast appearance (30 %), unable to control weight (28 %), mastectomy appearance (19 %), overall physical appearance (17 %); fear of recurrence (62 %), fear of cancer spreading (39 %), fear about the future (32 %), or one or more of these (72 %); ‘mood’ (15 %), ‘anxiety’ (21 %), ‘depression’ (17 %), or one or more of these (35 %); Phase 3 found that the PCI resulted in a focused consultation and no increase in consultation time. All the patients from phase 3 wanted to see a breast surgeon. Phase 4 revealed that clinicians involved with the PCI supported its use, and stated several advantages. In its final format, the breast cancer specific PCI had 57 items over several domains, with 16 referral options. Conclusions The PCI could identify issues that patients would like to discuss in the breast oncology clinic. The routine use of the PCI in follow-up clinics could ultimately improve care for women with breast cancer; however, the clinical environment continues to make it difficult to screen for issues related to intimacy, relationship, and sex. Further research is essential to evaluate the breast cancer specific PCI. A larger patient cohort, a longitudinal approach, qualitative input, and a link to possible interventions, would each improve our understanding of the issues faced by breast cancer patients.