Problems in transition and quality of care: perspectives of breast cancer survivors

Abstract

Purpose We conducted a qualitative study to explore breast cancer survivors’ perceptions and attitudes about their current healthcare utilization, screening, and information needs. Methods We completed eight focus groups of breast cancer survivors. We included women, adult survivors, with an initial diagnosis of breast cancer in the year 2000, treated, and without a recurrence as per medical record. To analyze transcripts, we used grounded theory methods, wherein unexpected themes and direct answers emerged from consensus between co-coders. Results Focus groups included 33 participants, the majority of whom were white (84.8%), college-educated (66.7%), and covered by private medical insurance (75.7%) or Medicare (27.3%). Participants’ perceptions and attitudes about care were framed in terms of personal experiences (including facing barriers to screening, feeling in limbo in the healthcare system, having problems with communication with and between physicians, confusion about symptoms, and using self-prescribe remedies), personal attitudes (including strong opinions about what survivorship means, concerns about recurrence, and changes in self-perception and agency), and social influences (including modeling others’ behaviors, changes in social life, and listening to family). Conclusion Survivorship attitudes, recurrence fears, memories, and self-perceptions were influential personal factors in addition to self-efficacy. Solutions such as providing a cancer treatment summary might resolve many of the problems by consolidating and making readily available the numerous medical history and recommendations that survivors accrue over time, switching from provider to provider. Clinicians must also implement communication changes in their interactions with patients to enhance positive attitudes and behaviors, and leverage social influences.

Views of Breast and Colorectal Cancer Survivors on Their Routine Follow-Up Care

“…Survivors in the present study also reported frequent guilt, which influenced their decisions not to seek care when experiencing aftereffects of treatment. A recent study also found that bc survivors report guilt upon visiting cancer specialists and taking them away from patients with active cancer 23 . Feelings of guilt may be mitigated by ensuring that survivors have a better understanding of their post-treatment concerns and of the goals for quality follow-up care (for example, preventing or managing morbidity).…”

“…The most common concerns about fp-led care involved the practitioner's knowledge and competencies related to cancer care and the ability to rapidly access specialist care if needed. Concerns on the part of bc survivors about their fp's knowledge of and ability to provide follow-up care has recently been reported by others, as has their preference to receive follow-up care from cancer specialists 23,28 . However, our findings indicated that when the fp played an active role throughout the course of a survivor's diagnosis and treatment, that survivor was much more likely to trust the fp's ability to provide high-quality follow-up care.…”

“…They also expressed wanting information on what is "normal" compared with what requires medical attention. Prior research found that survivors do not feel well-informed about the physical and emotional aftereffects of treatment 22 and that they find it difficult to determine whether their health problems are related to one or more of their previous cancer, their treatment, or other factors (for example, comorbid illness, aging) 23 .…”

Patterns of Cancer Centre Follow-Up Care for Survivors of Breast, Colorectal, Gynecologic, and Prostate Cancer

“…Medical oncologists have described a sense of responsibility during the follow-up period with respect to long-term toxicities and the survivor's compliance with ongoing therapies (for example, endocrine therapy) 24 ; other oncologists have questioned the ability of pcps to provide cancer-related care for survivors 25,26 . On the other hand, survivors are often confused over who is primarily responsible for cancer follow-up care [27][28][29] and uncertain about whether community-based providers have the expertise required to manage cancer follow-up 22,30 , both of which can contribute to concerns about discharge after treatment. The fact that follow-up guidelines often do not make specific recommendations about who should provide follow-up care might also contribute to a lack of role clarity for providers.…”

The Transition Experience to Breast Cancer Survivorship

“…Survivors report a need to have information that they can understand, 34 but also strategies to manage symptoms, prescriptions for health promotion, and help in the process of integrating the experience into one's life after treatment. 12,21,35 Those BCS who report higher symptom burden, symptom distress, and perceive inadequate information to manage symptoms and to cope with the transition from treatment to survivorship are at higher risk for distress and poorer QOL outcomes. 34,35 Most providers follow clinical practice guidelines recommending that BCS have a provider visit with a physical examination every 3 months in the first year, which translates into approximately four visits.…”