PDF(Pubmed)
Abstract：
BACKGROUND: The NFLymSI-18 is a patient-reported outcome measure comprised of the highest priority symptoms, emotional concerns, treatment side effects, and other concerns identified by lymphoma patients and oncologists. This study assessed the content validity of the NFLymSI-18 for patients with indolent B-cell non-Hodgkin\'s lymphoma (iNHL), with a focus on the Disease-Related Symptoms Physical (DRS-P) subscale.
METHODS: Patients with a confirmed iNHL diagnosis who had received one or more lines of treatment were recruited during clinic visits. Patients described their symptoms, treatment side effects, and emotional concerns related to iNHL in a semi-structured interview. Qualitative data were analyzed using NVivo10.
RESULTS: Data saturation was obtained by the 18th interview. Most participants (67%) had follicular lymphoma. 28% of participants had marginal zone lymphoma, and one participant had lymphoplasmacytoid lymphoma/Waldenström macroglobulinemia. Mean age of the 18 participants was 67 years. 56% of the sample was male. Most participants (67%) had a college or advanced degree. When asked to describe their iNHL symptoms, patients most often discussed swelling (n = 14), fatigue (n = 11), and pain (n = 8). The following symptoms were mentioned by three patients each: anxiety, appetite loss, rash, sleep disruption, trouble breathing, and malaise. Mapping of NFLymSI-18 content to these concerns showed the instrument includes all those most frequently mentioned symptoms.
CONCLUSIONS: This study supports the content validity of the NFLymSI-18, including its DRS-P Subscale, for patients with iNHL. The instrument shows strong validity for the most referenced symptoms of swelling, fatigue, and pain. The diversity of additional symptoms reported by patients is consistent with the heterogeneous symptomology of iNHL.
METHODS: Patients with a confirmed iNHL diagnosis who had received one or more lines of treatment were recruited during clinic visits. Patients described their symptoms, treatment side effects, and emotional concerns related to iNHL in a semi-structured interview. Qualitative data were analyzed using NVivo10.
RESULTS: Data saturation was obtained by the 18th interview. Most participants (67%) had follicular lymphoma. 28% of participants had marginal zone lymphoma, and one participant had lymphoplasmacytoid lymphoma/Waldenström macroglobulinemia. Mean age of the 18 participants was 67 years. 56% of the sample was male. Most participants (67%) had a college or advanced degree. When asked to describe their iNHL symptoms, patients most often discussed swelling (n = 14), fatigue (n = 11), and pain (n = 8). The following symptoms were mentioned by three patients each: anxiety, appetite loss, rash, sleep disruption, trouble breathing, and malaise. Mapping of NFLymSI-18 content to these concerns showed the instrument includes all those most frequently mentioned symptoms.
CONCLUSIONS: This study supports the content validity of the NFLymSI-18, including its DRS-P Subscale, for patients with iNHL. The instrument shows strong validity for the most referenced symptoms of swelling, fatigue, and pain. The diversity of additional symptoms reported by patients is consistent with the heterogeneous symptomology of iNHL.
摘要：
背景：NFLymSI-18是一种患者报告的结局指标，包括最优先的症状，情感上的担忧,治疗副作用，以及淋巴瘤患者和肿瘤学家发现的其他问题。这项研究评估了NFLymSI-18对惰性B细胞非霍奇金淋巴瘤（iNHL）患者的内容有效性，重点关注疾病相关症状物理（DRS-P）分量表。
方法：在门诊就诊期间招募了确诊的iNHL患者，这些患者接受了一种或多种治疗。患者描述了他们的症状，治疗副作用，以及半结构化访谈中与iNHL相关的情感问题。使用NVivo10分析定性数据。
结果：第18次访谈获得了数据饱和。大多数参与者（67%）患有滤泡性淋巴瘤。28%的参与者患有边缘区淋巴瘤，1名参与者患有淋巴浆细胞样淋巴瘤/Waldenström巨球蛋白血症。18名参与者的平均年龄为67岁。56%的样本为男性。大多数参与者（67％）拥有大学或高级学位。当被要求描述他们的iNHL症状时，患者最常讨论肿胀（n=14），疲劳(n=11)，疼痛（n=8）。三名患者分别提到以下症状：焦虑，食欲减退,皮疹,睡眠中断，呼吸困难,和不适。将NFLymSI-18内容映射到这些问题表明，该仪器包括所有最常提及的症状。
结论：本研究支持NFLymSI-18的内容效度，包括其DRS-P分量表，对于iNHL患者。该仪器对最参考的肿胀症状显示出很强的有效性，疲劳,和痛苦。患者报告的其他症状的多样性与iNHL的异质性症状一致。
方法：在门诊就诊期间招募了确诊的iNHL患者，这些患者接受了一种或多种治疗。患者描述了他们的症状，治疗副作用，以及半结构化访谈中与iNHL相关的情感问题。使用NVivo10分析定性数据。
结果：第18次访谈获得了数据饱和。大多数参与者（67%）患有滤泡性淋巴瘤。28%的参与者患有边缘区淋巴瘤，1名参与者患有淋巴浆细胞样淋巴瘤/Waldenström巨球蛋白血症。18名参与者的平均年龄为67岁。56%的样本为男性。大多数参与者（67％）拥有大学或高级学位。当被要求描述他们的iNHL症状时，患者最常讨论肿胀（n=14），疲劳(n=11)，疼痛（n=8）。三名患者分别提到以下症状：焦虑，食欲减退,皮疹,睡眠中断，呼吸困难,和不适。将NFLymSI-18内容映射到这些问题表明，该仪器包括所有最常提及的症状。
结论：本研究支持NFLymSI-18的内容效度，包括其DRS-P分量表，对于iNHL患者。该仪器对最参考的肿胀症状显示出很强的有效性，疲劳,和痛苦。患者报告的其他症状的多样性与iNHL的异质性症状一致。
