Early Detection of Upper Extremity Morbidity Among Breast Cancer Survivors

Upper limb disability is one of the most common adverse sequelae of breast cancer treatment. Optimal upper body function is essential for maintaining independent living, performing tasks requiring physical strength, and overall quality of life. Long-term decreased shoulder mobility and pain are reported by 30-50% of patients. Patients report being uninformed about side effects including upper extremity motion restriction, lymphedema, fatigue and pain and are surprised that they do not always disappear after treatment. They report receiving conflicting information from different clinicians about post-operative exercise and few are referred to trained personnel (physical therapists, certified trainers, cancer rehabilitation specialists) for preventive or rehabilitative interventions. Whereas symptoms such as pain, nausea, and fatigue are well-recognized, screened for, and documented in clinical records, clinician documentation of functional problems is very low among patients with self-identified upper extremity impairments and limitations. As a result, these are woefully undertreated and, as has been observed for other types of cancer and cancer care, particularly so among minority and socioeconomically disadvantaged groups. It is not known if prospective surveillance for early detection of upper limb disability would result in improved outcomes and this is a major gap in the breast cancer survivorship literature.

The objectives of this application are to develop and validate an instrument for patient upper limb morbidity self-assessment and obtain design specifications for a prospective surveillance model that stratifies patients for follow-up based on self-assessment score. This will leverage data and collaborations we have already established with breast cancer patients and investigators in the Greater Plains Collaborative. We propose to refine the assessment items and design the model through focus groups with patients, oncologists, and physical rehabilitation experts. We propose to validate the tool via assessments prior to scheduled follow-up clinic appointments of 100 breast cancer patients, comparing the self-assessment data with physiatrist evaluations in conjunction with clinic appointments. The central hypothesis of our proposal is that patients will complete a self-assessment tool and that this will significantly improve patient and clinician engagement, leading to early detection and treatment of remediable upper extremity impairments and ultimately improved health outcomes. The rationale for this proposed study is that a novel cost-effective prospective surveillance model based on patient self-assessment that results in early detection of upper limb disability will lead to broader adoption by health systems. 

This project is expected to produce the following outcomes: evidence of patient engagement in self-assessment that results in clinical documentation of functional problems, and increased rehabilitative interventions. If successful, it will be the basis fo a NCI or PCORI grant to conduct a randomized controlled trial in the Greater Plains Collaborative (GPC) of the effect of the model on health outcomes. 

Other Information:

• Principal Investigator (also GPC Principal Investigator): Elizabeth Chrischilles, PhD; The University of Iowa
• Participating GPC Sites:
  • University of Iowa
  • Medical College of Wisconsin
  • University of Kansas Medical Center
  • University of Minnesota
  • University of Missouri
• Status: Seeking interested collaborators in all phases of the project
• Central Hypothesis: That patients will complete a self-assessment tool and that this will significantly improve patient and clinician engagement, leading to early detection and treatment of remediable upper extremity impairments and ultimately improved health outcomes

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