Development and pilot testing of a psychosocial intervention program for young breast cancer survivors
Introduction
Breast cancer is the most common cancer among women worldwide. Annual incidence exceeds 1.3 million new cases globally and there are 232,000 new cases in the U.S. [1], [2]. Earlier detection and more effective treatments have dramatically increased the number of breast cancer survivors (BCS), with over 3 million in the U.S. [3]. Of the new diagnoses each year, 11.4% of breast cancer cases are among younger women, defined here as those under 45 years of age [4]. Younger women surviving breast cancer face unique challenges. The disease interrupts and complicates many aspects of adult development, including intimate relationships, work and career, childbearing, child-rearing, and other roles that many women play during these years [5].
Younger women report significant psychosocial concerns, including cancer-related emotional distress and symptoms of depression [5], [6]. Fear of cancer recurrence and uncertainty about the future contribute to ongoing stress that must be managed for decades past the end of treatment [7], [8]. Many survivors also experience a sense of greater clarity about their core priorities and values as a result of cancer and seek to retain these positive gains [9]. Survivors receive multiple and, at times, conflicting recommendations for reducing the risk of cancer recurrence and have complex psychological needs. For young breast cancer survivors (YBCS), it is a daunting task to manage challenges to physical and psychological wellbeing, while creating an integrated plan of behaviors and attitudes that support healthy survivorship.
In addition, YBCS must cope with important changes in their lives and relationships. Breast cancer treatment can necessitate the delay or unexpected end of childbearing. Chemotherapy induces menopause in many women, and the 5-year course of tamoxifen for those with estrogen-sensitive tumors creates a long lapse in the possibility of pregnancy [6], [10] as well a host of menopausal symptoms including vaginal changes and alterations in libido. Fertility concerns are thus quite common, as are concerns related to sexual function, body image, and intimacy [6], [11].
Oncology and survivorship care rarely address these issues, leaving psychosocial needs unmet. Programs do exist [12], [13], but many do not specifically address the needs of YBCS, and programming may be sporadic or not feasible as part of routine survivorship care. Sustainable programming is needed to address these concerns and to help women transition from treatment to healthy survivorship.
Prior literature supports the efficacy of psychosocial interventions with cancer patients and survivors in reducing symptoms of anxiety and depression and improving adjustment to life after cancer treatment [14]. We expected that a psychosocial program targeting concerns of young BCS would be useful and well-received.
This paper describes the development of the life after breast cancer (LABC) intervention program, designed to address these common concerns and fill this gap in services with a unique program for YBCS. The LABC intervention is a brief psychosocial program that targets specific concerns of this population, including stress management, fear of recurrence, and sexuality and intimacy. It was developed based on engagement of key stakeholders, including the target audience of YBCS.
Section snippets
Programmatic setting
UCLA was one of seven organizations awarded funding through a CDC initiative (DP 11-1111) that focused on provision of services to young women diagnosed with breast cancer, including the development of resources to improve their overall quality of life. UCLA responded by proposing a program designed to enhance health and wellness of YBCS by (1) addressing unique gaps in services through a regionally refined listing of community resources; and (2) developing a psychosocial intervention program
Participants and groups
YBCS were recruited from local community organizations, medical facilities, and through social media. Women were eligible if they were 45 years or younger at the time of diagnosis, and within 1 year of the end of initial cancer treatment, excluding hormonal therapy. We conducted 3 initial program workshops at UCLA to pilot the content and format of the intervention, and after this process it was finalized with a training manual. Two additional workshops were conducted at UCLA at which time
Strengths and limitations of the LABC intervention program
Few psychosocial programs exist that are tailored to the specific needs of younger women with breast cancer. The LABC intervention is based on principles of mindfulness-based cognitive-behavioral therapy, biobehavioral stress management, narrative therapy and sex and couples therapy. The intervention was specifically tailored to meet the unique needs of young BCS that are not being addressed by existing programming. The program was structured around a new cognitive behavioral tool for stress
Acknowledgements
This research was supported by the Cooperative Agreement Number 1U58DP003429 from the Centers for Disease Control and Prevention and by the UCLA Cancer Education and Career Development Program, NCI Grant R25CA 87949. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention. This program was also supported by the Simms/Mann—UCLA Center for Integrative Oncology, David Geffen School of Medicine.
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