Quality of Life in Patients and Their Spouses and Cohabitating Partners in the Year Following a Cancer Biopsy (the Couples Cope Study): Protocol for a Prospective Observational Study

Patricia Ingrid Moreno*, Sarah M. Worch, Jessica L. Thomas, Rebecca L. Nguyen, Heidy N. Medina, Frank J. Penedo, Judith T. Moskowitz, Betina R Yanez, Sheetal M. Kircher, Shilajit D. Kundu, Sarah C Flury, Elaine Ooi Yan Cheung

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. Objective: The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. Methods: Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. Results: A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75% (n=321) were eligible to participate. Of the eligible patients, 72% (n=231) enrolled and 82% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77% (34/44) of patients who received a cancer diagnosis and 72% (26/36) of their spouses or partners were retained through 9 months, while 80% (53/66) of patients who received a benign diagnosis and 68% (42/62) of their partners were retained. Conclusions: Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL.

Original languageEnglish (US)
Article numbere52361
JournalJMIR Research Protocols
Volume13
DOIs
StatePublished - 2024

Funding

Research supported by a John Templeton Grant (60699) awarded to PIM and EOC. PIM was also supported by a National Cancer Institute Career Development Award (K01CA258955) and a National Institute of Minority Health and Health Disparities diversity supplement (R01MD010440).

Keywords

  • biopsy
  • breast biopsy
  • cancer
  • cancer biopsy
  • caregiver
  • couples
  • diagnostic
  • diagnostic procedure
  • dyads
  • electronic health record
  • feasibility of recruitment
  • partner
  • partners
  • patient
  • patients
  • prostate biopsy
  • quality of life
  • recruitment
  • screening
  • spouse
  • spouses
  • survey
  • surveys

ASJC Scopus subject areas

  • General Medicine

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