In a study reported at the ASCO Quality Care Symposium and simultaneously published in the Journal of Oncology Practice, Campbell et al found that an ASCO Quality Training Program Project—the Plan-Do-Study-Act (PDSA) initiative—resulted in improvement in primary caregiver identification and documentation/assessment of unmet caregiver needs in the University of Pittsburgh Medical Center gynecologic oncology clinic.

Study Details

An initial evaluation of family caregivers in the clinic in July 2018 found that only 19% of patients had a designated caregiver documented in their chart and that 50% of identified caregivers reported nine or more distressing unmet needs.

Top identified barriers to caregiver identification included no designated place to document patient-identified caregivers in the electronic health record (EHR), no protocol for communicating processes for caregiver identification, no clear ownership of caregiver identification and documentation separate from existing EHR demographics, and caregiver lack of awareness of available services and resources. Barriers to caregiver needs assessment included lack of protocols for assessing, responding to, communicating, and documenting caregiver distress/needs; absence of clear staff ownership of caregiver assessment; and lack of awareness among patients, caregivers, staff, and the health system that caregiver assessment provides value in care. 

“This project demonstrated that a [caregiver] assessment protocol can be implemented in a large academic gynecologic oncology clinic. Additional efforts to integrate [caregiver] identification, assessment, and intervention more fully within the clinic and electronic health record are underway.”

— Campbell et al

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The initiative to address these barriers included definition of standard processes for caregiver identification, documentation, and assessment. A large examination room was converted into the new Family Caregiver Advocacy, Research, and Education (CARE) Center. CARE center personnel (nurse researchers, registered nurses, and a social work navigator) staffed the center during clinic hours to track and conduct caregiver assessments, interventions (eg, information, support, self-management coaching, specialty care referrals), and follow-up. These measures were implemented in a preparatory PDSA cycle, with seven subsequent cycles being performed to implement, evaluate, and modify the program as necessary.

The goals of the initiative were to identify and document primary caregivers for 85% of patients within two clinic visits of gynecologic cancer diagnosis and to assess the needs of and provide interventions for 75% of identified family caregivers. The eight PDSA cycles occurred between October 2018 and March 2019.

Intervention Outcomes

Compared with caregiver identification for 19% of patients at baseline, identification and documentation of caregivers improved to 57% to 60% during PDSA cycles seven and eight. Assessment of caregiver needs improved from 28% at baseline to 60% during cycle 8, with 50% of caregivers receiving interventions for identified needs. In addition, a number of episodes of acute caregiver and patient distress were resolved via CARE Center interventions.

The investigators noted: “Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve [caregiver] identification rates and extend the momentum of the project.”

The investigators concluded: “This project demonstrated that a [caregiver] assessment protocol can be implemented in a large academic gynecologic oncology clinic. Additional efforts to integrate [caregiver] identification, assessment, and intervention more fully within the clinic and electronic health record are underway.”

Grace B. Campbell, PhD, MSW, RN, CRRN, of the University of Pittsburgh School of Nursing and School of Health and Rehabilitation Sciences, is the corresponding author for the Journal of Oncology Practice article.

Disclosure: The study was supported by the Wolff Center of UPMC, Department of Obstetrics, Gynecology, and Reproductive Sciences, University of Pittsburgh School of Medicine, and Beckwith Institute of UPMC. For full disclosures of the study authors, visit jop.ascopubs.org.