Conducting Biobehavioral Research in Patients With Advanced Cancer: Recruitment Challenges and Solutions

Abstract

Despite significant advances in cancer treatment and symptom management interventions over the last decade, patients continue to struggle with cancer-related symptoms. Adequate baseline and longitudinal data are crucial for designing interventions to improve patient quality of life and reduce symptom burden; however, recruitment of patients with advanced cancer in longitudinal research is difficult. Our purpose is to describe challenges and solutions to recruitment of patients with advanced cancer in two biobehavioral research studies examining cancer-related symptoms. Study 1: Symptom data and peripheral blood for markers of inflammation were collected from newly diagnosed patients receiving chemotherapy on the first day of therapy and every 3–4 weeks for up to 6 months. Study 2: Symptom data, blood, and skin biopsies were collected from cancer patients taking epidermal growth factor receptor inhibitors at specific time points over 4 months. Screening and recruitment results for both studies are summarized. Timing informed consent with baseline data collection prior to treatment initiation was a significant recruitment challenge for both the studies. Possible solutions include tailoring recruitment to fit clinic needs, increasing research staff availability during clinic hours, and adding recruitment sites. Identifying solutions to these challenges will permit the conduct of studies that may lead to identification of factors contributing to variability in symptoms and development of tailored patient interventions for patients with advanced cancer.

Understanding Symptom Burden in Patients With Advanced Cancer Living in Rural Areas

“…The unique experiences and challenges of rural individuals with advanced cancer are not reflected in the symptom and cytokine literature. This study reflects the challenges inherent in including this population in biobehavioral research (Gilbertson-White, Bohr, & Wickersham, 2017). Given how quickly treatment decisions are made and implemented, it can be extremely difficult to obtain baseline data prior to starting cancer treatment.…”

Survivorship research in advanced gynecological cancer: A scoping review of cohort studies

“…Retention proportions across 18 studies at the end of follow‐up for survivorship outcomes ranged from 15% to 97%. While recruitment and retention challenges have been documented, 12 , 13 , 14 , 15 , 16 we are not aware of any review reporting results for observational research. Recruitment and retention among patients with advanced cancer participating in exercise interventions have been reported at 49% (range 15%–74%) and 76% (range 58%– 90%), respectively.…”

“…Research on common barriers to enrolment and retention cite accessing patients (e.g., a clinical decision not to approach eligible patients, patients being discharged before being approached) and patient refusal (e.g., too unwell, severe distress, uncertainty regarding cancer stage) as common challenges. 12 , 13 , 14 , 15 , 16 Additional barriers have been identified for recruiting underrepresented groups into cancer clinical trials, such as lack of trial awareness (e.g., lack of culturally appropriate information), lack of opportunity to participate (e.g., age, comorbidity, and functional status exclusion criteria), and the decision to refuse participation (e.g., mistrust of research). 11 However, there is little information available on how these factors might influence participation of advanced cancer patients from underrepresented groups into observational longitudinal research.…”

Psychological distress of cancer patients caused by treatment delay during the COVID‐19 pandemic in China: A cross‐sectional study

“…Patients with cancer may experience psychological distress after diagnosis, 25 , 26 and they may exhibit significant distress owing to the negative effects of the COVID‐19 pandemic. 27 Measures to control the spread of COVID‐19 have been implemented throughout the world.…”