Randomized Prospective Trial Exploring the Impact of Structured Journaling in Patients With Sarcoma on the Management of Treatment-Related Adverse Events

Abstract

PURPOSE: Treatment-related adverse events associated with systemic anticancer therapy (SACT) can deter patients with sarcoma from completing treatment. With self-monitoring, patients may be better empowered to self-advocate for improved symptom management. We hypothesized that by incorporating journaling, a structured form of self-monitoring, care team communication, and symptom management would improve. We thus designed a prospective randomized trial exploring journaling as a therapeutic adjuvant for symptom management ( NCT03258892 ). METHODS: Participants with sarcoma initiating SACT were randomly assigned to receive either a symptom management journal at the start of SACT or after completing two cycles of SACT. Symptom journals were designed jointly by a cancer patient focus group and by education experts. Journals were reviewed with clinical staff at each visit. Participant responses were obtained through questionnaires. Patient call volume was obtained through the electronic health record. RESULTS: Of 64 participants consented for the trial, 53 were evaluable for analysis. Fifty-five percent of participants reported that the journal was at least moderately useful. These participants were more likely to report improved communication scores ( P = .027), symptom management ( P = .011), and quality of life (QOL) ( P = .019). Participants who received the journal early were less likely to report a decrease in QOL as compared with the late journal group ( P = .757 v P = .035). CONCLUSION: To our knowledge, this is the first prospective randomized trial evaluating the use of structured journaling as a low-cost means to improve treatment-related adverse event management and QOL in patients with sarcoma undergoing SACT. These promising results will need to be confirmed by additional studies.

Quality of Life and Real-Time Patient Experience During Neoadjuvant Therapy

“…Qualitative analysis of patients’ journal entries allowed additional insight into their lived experiences during NT. Although journaling has been found to be a therapeutic exercise for some patients undergoing cancer treatment, other studies have utilized it as a research tool similar to our study 38–41 . Similar to the symptom tracker, physical and emotional symptoms were common elements of patients’ journal entries.…”

“…Although journaling has been found to be a therapeutic exercise for some patients undergoing cancer treatment, other studies have utilized it as a research tool similar to our study. [38][39][40][41] Similar to the symptom tracker, physical and emotional symptoms were common elements of patients' journal entries. The journal entries highlighted some challenges experienced by patients during NT, including coordination of care, frustration with care, fear of their prognosis, and uncertainty about future treatments.…”

In the Words of My Mother: “I’m fighting hard for me but mostly for you”

“…Her words are haunting, emotional, and also a blessing. Journaling among cancer patients demonstrates improved quality of life and treatment management and can help cancer educators and practitioners understand the patient and improve the patient-provider encounter [ 16 , 17 ]. Exploring the effect of patient journaling on the caregiver or family member may also be important.…”