Patient and family member perspectives on searching for cancer clinical trials

A qualitative interview study

Jennifer L. Ridgeway, Gladys B. Asiedu, Katherine Carroll, Meaghan Tenney, Aminah Jatoi, Carmen Radecki Breitkopf

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Objective: Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods: Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results: Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion: Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice implications: Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual's role in identifying trials is critical.

Original languageEnglish (US)
JournalPatient Education and Counseling
DOIs
StateAccepted/In press - Feb 10 2016

Fingerprint

Clinical Trials
Interviews
Neoplasms
Education
Ovarian Neoplasms
Recurrence
Therapeutics

Keywords

  • Clinical trials
  • Oncology
  • Ovarian cancer
  • Qualitative research
  • Women

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Patient and family member perspectives on searching for cancer clinical trials : A qualitative interview study. / Ridgeway, Jennifer L.; Asiedu, Gladys B.; Carroll, Katherine; Tenney, Meaghan; Jatoi, Aminah; Radecki Breitkopf, Carmen.

In: Patient Education and Counseling, 10.02.2016.

Research output: Contribution to journalArticle

@article{8ca2ab9ab45e41b0b7be3b577ea0ba08,
title = "Patient and family member perspectives on searching for cancer clinical trials: A qualitative interview study",
abstract = "Objective: Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods: Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results: Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion: Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice implications: Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual's role in identifying trials is critical.",
keywords = "Clinical trials, Oncology, Ovarian cancer, Qualitative research, Women",
author = "Ridgeway, {Jennifer L.} and Asiedu, {Gladys B.} and Katherine Carroll and Meaghan Tenney and Aminah Jatoi and {Radecki Breitkopf}, Carmen",
year = "2016",
month = "2",
day = "10",
doi = "10.1016/j.pec.2016.08.020",
language = "English (US)",
journal = "Patient Education and Counseling",
issn = "0738-3991",
publisher = "Elsevier Ireland Ltd",

}

TY - JOUR

T1 - Patient and family member perspectives on searching for cancer clinical trials

T2 - A qualitative interview study

AU - Ridgeway, Jennifer L.

AU - Asiedu, Gladys B.

AU - Carroll, Katherine

AU - Tenney, Meaghan

AU - Jatoi, Aminah

AU - Radecki Breitkopf, Carmen

PY - 2016/2/10

Y1 - 2016/2/10

N2 - Objective: Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods: Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results: Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion: Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice implications: Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual's role in identifying trials is critical.

AB - Objective: Clinical trials are vital in the context of ovarian cancer and may offer further treatment options during disease recurrence, yet enrollment remains low. Understanding patient and family member experiences with identifying trials can inform engagement and education efforts. Methods: Interviews were conducted with 33 patients who had experience with clinical trial conversations and 39 nominated family members. Thematic analysis examined experiences and generated findings for clinical practice. Results: Trial conversations with providers at diagnosis were uncommon and often overwhelming. Most participants delayed engagement until later in the disease course. With hindsight, though, some wished they considered trials earlier. Difficulty identifying appropriate trials led some to defer searching to providers, but then they worried about missed opportunities. Most family members felt unqualified to search. Conclusion: Trial conversations during clinical encounters should start early and include specifying search responsibilities of providers, patients, and family. Patients and family members can be engaged in searches but need guidance. Practice implications: Trials should be discussed throughout the disease course, even if patients are not ready to participate or are not making a treatment decision. Education should focus on identifying trials that meet search criteria. Transparency regarding each individual's role in identifying trials is critical.

KW - Clinical trials

KW - Oncology

KW - Ovarian cancer

KW - Qualitative research

KW - Women

UR - http://www.scopus.com/inward/record.url?scp=84994403477&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84994403477&partnerID=8YFLogxK

U2 - 10.1016/j.pec.2016.08.020

DO - 10.1016/j.pec.2016.08.020

M3 - Article

JO - Patient Education and Counseling

JF - Patient Education and Counseling

SN - 0738-3991

ER -