Acquaye Alvina A, Payén Samuel S, Vera Elizabeth, Williams Loretta A, Gilbert Mark R, Weathers Shiao-Pei, Armstrong Terri S
Neuro-Oncology Branch, National Institutes of Health, 9030 Old Georgetown Rd, Room 231, Bethesda, MD, 20892, USA.
Department of Family Health Houston, The University of Texas Health Science Center of Nursing Research, Houston, TX, USA.
J Patient Rep Outcomes. 2019 Aug 23;3(1):58. doi: 10.1186/s41687-019-0143-0.
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.
A 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.
Thematic 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.
Completion 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.
识别疾病全过程中出现的症状对于理解患者症状管理至关重要。通过患者访谈征求有这些症状经历者的意见,是获取这一观点以验证患者报告结局(PRO)测量中所包含症状的一种方法。
采用主题分析法在定性访谈中识别主题。胶质瘤患者完成了MD安德森症状量表-脑肿瘤(MDASI-BT)。使用描述性统计分析MDASI-BT。
23名参与者达到了主题饱和,中位年龄为53岁(23 - 62岁),正在接受治疗(57%),被诊断为胶质母细胞瘤(48%)。患者在访谈期间及完成量表时认可了MDASI-BT的22种症状中的20种(未报告的症状:口干、呼吸急促)(未认可癫痫发作和呕吐)。疲劳(55%)、癫痫发作(50%)和疼痛(50%)是样本中描述的常见症状。在治疗期间,发现更多症状中疲劳、脱发和恶心问题更大。除瘙痒和肿胀(各有2名患者认可)外,MDASI-BT量表未包含的所有其他症状仅被1名患者认可。
完成MDASI-BT后发现,患者平均报告6.8种症状,报告症状中有14%(平均 = 3)被评为中度至重度。研究结果表明MDASI-BT在捕捉所经历的重要症状方面的适用性,以及在整个护理过程中有效管理症状时使用它的重要性。