Journaling May Be a Useful Symptom Monitoring Tool for Patients With Sarcoma
Journaling may help patients with sarcoma feel more in control of their symptoms and communicate better with their care team.
The practice of structured journaling may be a cost-effective method of empowering patients to monitor their adverse events and improve quality of life while undergoing cancer therapy, according to results of a study (NCT03258892) recently published in the Journal of Clinical Oncology.1
Sixty-four patients were enrolled, 53 of whom were eligible for evaluation. Over half of the patients (55%) felt that the journaling was moderately useful. Furthermore, patients who responded positively also experienced improved communication scores (P = .027), symptom management scores (P = .011), and quality of life (QOL; P = .019). In addition, investigators observed that patients who initiated journaling early into their treatment experienced a smaller decrease in QOL than those who began journaling later (P = .757 vs P = .035).
“The sarcoma treatment guide (STG) encouraged self-reporting in the form of journaling, which provided, at times, valuable narrative data. Narrative data revealed through journaling includes subjective data reflecting the patient's story, insight, mental state, and body awareness,” the authors said, adding that participants reported that journaling helped them recall and describe information better, and remind them of concerns to bring up with their oncology team.
Investigators were interested in better understanding the utility of self-monitoring, as it has already demonstrated a potential association with improved symptom burden for patients and families and because one-third of patients already claimed to engage in some form of self-monitoring prior to the trial initiation. The study defined self-monitoring as the intentional practice of observing, measuring, and/or recording symptoms, sensations, daily activities, thoughts, and emotions.
Treatment-naïve patients with sarcoma were enrolled and randomized to either receive a symptom management journal at treatment initiation or to receive a symptom management journal following 2 complete cycles of therapy. The journals were codesigned by a cancer patient focus group and by education experts; the clinical staff reviewed recent journal entries with the patient during each visit.
Questionnaires were utilized to assess patient responses to the intervention. At the conclusion of the intervention, patients were asked to assess how the journaling impacted their communication with the physician and nursing staff.
Overall, participants share that the journaling moderately improved their communication with the physician (64%) and nursing staff (61%). In addition, 28% of patients felt the communication with their physician greatly approved, and 30.8% of patients felt that communication with their nursing staff greatly improved. Furthermore, a subset of patients included extra text in their journals providing additional details regarding their symptoms: many of these “add-ins” included concerns regarding their psychosocial wellbeing, including depression and anxiety. Care teams used this extra information to guide patient education and engage the social work or psychology teams as well.
In addition, patient call volumes were measured through electronic health records.
In conclusion, study authors acknowledge that in the digital age, many patients find themselves face to face with an abundance of digital survey and questionnaires. They sought to provide patients with a way to track their symptoms without experiencing digital fatigue.
“Most computer-generated surveys provide generic data—they allow the patient to capture details through checking a box with little or no room to provide a narrative or personal context,” study authors noted. “Providing patients with a low-[technology] monitoring tool in the form of a traditional journal allows them to record and share their stories in a meaningful way, not only for themselves but also for their medical team.”
Speece NJ, Xu M, Tinoco G, Liebner DA, Chen JL. Randomized prospective trial exploring the impact of structured journaling in patients with sarcoma on the management of treatment-related adverse events. JCO Oncol Pract. 2022;18(2):e250-e260. doi:10.1200/OP.21.00309