Measuring Quality of Life Among Patients With Neuroendocrine Tumors

With a growing emphasis being placed on patient-centered care, quality of life represents an important measure for gauging patient perspectives and outcomes. Two studies presented at the North American Neuroendocrine Tumor Society (NANETS) annual meeting, held October 4-6 in Seattle, Washington, assessed different tools for determining quality of life among patients with neuroendocrine tumors (NETs).

“There has been a conscious shift in medical practice from a disease-centered to patient directed model, necessitating better integration of patient perspectives and improved communication between patients and physicians. Such communication is facilitated by routine clinical use of quality of life tools,” wrote the researchers of the first study, which compared 2 quality of life measurement tools in patients with gastroenteropancreatic NETs.

The researchers evaluated quality of life among 85 patients enrolled in the phase 2 open-label clinical trial of Lu-DOTATATE therapy at the Cross Cancer Institute in Edmonton. The EORTC QLQ-C30 questionnaire—one of the most widely used health-related quality of life questionnaires in cancer research—with the QLQ-GI.NET 21 questionnaire was compared against ESAS-r, a simple validated tool designed for quality-of-life assessment that had not yet been measured in NET populations.

Quality of life was assessed with both tools at baseline and after each treatment cycle. Researchers observed that both tools demonstrated overall quality of life over induction treatment. EORTC yielded statistically and clinically significant improvement in insomnia, and gastrointestinal and endocrine symptoms. Although ESAS-r demonstrated statistically significant improvement in insomnia, anxiety, and emotional score, there was no clinically significant difference.

“Each quality of life assessment tool has inherent benefits and limitations, which must be considered in clinical use,” wrote the researchers. However, while ESAS-r is a quick and easy-to-interpret tool, it is not NET-specific and, thus, may not be as sensitive in the patient population, they added. Meanwhile, EORTC may be more complex and time consuming, but it better reflects quality of life in the NETs population.

Another study presented at the conference examined the effectiveness of assessing quality of life with the Carcinoid Health Storylines mobile application that utilizes PROMIS-29, symptom tracking, and patient journaling. PROMIS-29 is a quality-of-life survey that measures outcomes across 7 domains: depression, anxiety, physical function, pain interference, fatigue, sleep disturbance, and ability to participate in social roles and activities.

The 12-week prospective, observational study followed 120 patients recruited through the Carcinoid Cancer Foundation who were being treated with either lanreotide depot or octreotide long-acting release. Patients completed PROMIS-29 questionnaires at baseline, week 6, and week 12, and completed symptom questionnaires at baseline, week 4, and week 8 through the application. Patients also monitored symptoms, mood, bowel movement frequency, food, activity, and sleep 5 times a week.

The baseline PROMIS-29 questionnaire showed high proportions of clinically significant depression (17.7%), anxiety (24.2%), fatigue (58.8%), dissatisfaction with social role (42.2%), difficulty with physical function (16%), and insomnia (34.9%).

“Thus, 26.9% reported their quality of life being poor, and yet, a high percentage of patients were hopeful and reported their life as being meaningful (72.3%),” noted the researchers.

Reported symptoms dropped significantly from initial to subsequent surveys, demonstrating that mobile application tracking effectively captured variations in reported symptoms and weekly averages correlated well with symptom surveys and PROMIS-29 scores, they added.