Identifying symptom recurrences in primary brain tumor patients using the MDASI-BT and qualitative interviews

Shiao-Pei Weathers,Terri S Armstrong,Samuel S Payén,Elizabeth Vera,Alvina A Acquaye,Loretta A Williams,Mark R Gilbert

doi:10.1186/s41687-019-0143-0

Abstract

BackgroundIdentifying symptoms experienced throughout the disease trajectory is pivotal to understanding management of patient symptoms. Patient interviews to solicit input from those who have experienced these symptoms is one method to capture this perspective to validate symptoms included in patient reported outcomes (PRO) measures.MethodsA thematic approach was used to identify themes within qualitative interviews. The MD Anderson Symptom Inventory- Brain Tumor (MDASI-BT) was completed by glioma patients. Descriptive statistics was used for analysis of the MDASI-BT.ResultsThematic saturation was reached with 23 participants, with a median age of 53 (23–62), on treatment (57%) and diagnosed with a glioblastoma (48%). Patients endorsed 20 out of the 22 MDASI-BT symptoms (symptoms not reported: dry mouth, shortness of breath) during the interviews and with completion of the instrument (seizures and vomiting were not endorsed). Fatigue (55%), seizures (50%), and pain (50%) were common symptoms described by the sample. During treatment, more symptoms were identified with fatigue, hair loss, and nausea more problematic. Aside from itching and swelling (endorsed by 2 patients each), all other symptoms not included in the MDASI-BT instrument were endorsed by only one patient.ConclusionsCompletion of the MDASI-BT, found patients reported on average 6.8 symptoms with 14% of reported symptoms (mean = 3) rated as moderate to severe. The findings demonstrate how applicable the MDASI-BT is in capturing significant symptoms experienced and how important it is to utilize throughout ones’ care to manage symptoms effectively.

Highlights

Identifying symptoms experienced throughout the disease trajectory is pivotal to understanding management of patient symptoms
The sample consisted of patients with glial tumors, with 48% having a diagnosis of glioblastoma
In comparing symptoms reported in the qualitative interview to those included in the MDASI-BT, all symptoms were reported by patients during the interviews with the exception of two

Summary

Introduction

Identifying symptoms experienced throughout the disease trajectory is pivotal to understanding management of patient symptoms. Patient interviews to solicit input from those who have experienced these symptoms is one method to capture this perspective to validate symptoms included in patient reported outcomes (PRO) measures. There are over 100 distinct types of primary brain and central nervous system (CNS) tumors with nearly 80,000 new cases expected to be diagnosed in 2018 [1]. Tumors can be considered either low grade or malignant, with malignant tumors accounting for nearly one-third of primary brain and CNS tumors [1]. Gliomas are the most common malignant primary brain tumor and providing care for patients is complex. The use of a routine screening tool for common symptoms may promote improved symptom management, as has Acquaye et al Journal of Patient-Reported Outcomes (2019) 3:58 recently been demonstrated to improve survival in patients with other solid tumor malignancies [5]

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