UNC Project-Malawi, Lilongwe, Malawi.
University of North Carolina, Chapel Hill, North Carolina, USA.
Pediatr Blood Cancer. 2021 Oct;68(10):e29257. doi: 10.1002/pbc.29257. Epub 2021 Aug 2.
Patient-reportedoutcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that are infrequently used in sub-Saharan Africa (SSA).
We administered the Chichewa Pediatric Patient-Reported Outcome Measurement Information System Pediatric (PROMIS)-25 at diagnosis, active treatment, and follow-up among pediatric lymphoma patients in Lilongwe, Malawi. Mean scores were calculated for the six PROMIS-25 HRQoL domains (Mobility, Anxiety, Depressive Symptoms, Fatigue, Peer Relationships, Pain Interference). Differences in HRQoL throughout treatment were compared using the minimally important difference (MID) and an ANOVA analysis. Kaplan-Meier survival estimates and Cox hazard ratios for mortality are reported.
Seventy-five children completed PROMIS-25 surveys at diagnosis, 35 (47%) during active treatment, and 24 (32%) at follow-up. The majority of patients died (n = 37, 49%) or were lost to follow-up (n = 6, 8%). Most (n = 51, 68%) were male, median age was 10 (interquartile range [IQR] 8-12), 48/73 (66%) presented with advanced stage III/IV, 61 (81%) were diagnosed with Burkitt lymphoma and 14 (19%) Hodgkin lymphoma. At diagnosis, HRQoL was poor across all domains, except for Peer Relationships. Improvements in HRQoL during active treatment and follow-up exceeded the MID. On exploratory analysis, fair-poor PROMIS Mobility <40 and severe Pain Intensity = 10 at diagnosis were associated with increased mortality risk and worse survival, but were not statistically significant.
Pediatric lymphoma patients in Malawi present with poor HRQoL that improves throughout treatment and survivorship. Baseline PROMIS scores may provide important prognostic information. PROs offer an opportunity to include patient voices and prioritize holistic patient-centered care in low-resource settings.
患者报告的结局（PROs）评估健康相关生活质量（HRQoL），在癌症治疗和研究中日益重要，但在撒哈拉以南非洲（SSA）却很少使用。
我们在马拉维利隆圭的儿科淋巴瘤患者中，在诊断、积极治疗和随访时，使用切奇瓦语儿科患者报告结局测量信息系统儿科（PROMIS）-25 进行评估。计算了六个 PROMIS-25 HRQoL 领域（移动性、焦虑、抑郁症状、疲劳、同伴关系、疼痛干扰）的平均得分。使用最小重要差异（MID）和方差分析比较整个治疗过程中的 HRQoL 差异。报告了死亡率的 Kaplan-Meier 生存估计和 Cox 风险比。
75 名儿童在诊断时完成了 PROMIS-25 调查，35 名（47%）在积极治疗时，24 名（32%）在随访时。大多数患者死亡（n=37，49%）或失访（n=6，8%）。大多数（n=51，68%）为男性，中位年龄为 10 岁（四分位间距 [IQR] 8-12），48/73（66%）表现为晚期 III/IV 期，61 名（81%）被诊断为伯基特淋巴瘤，14 名（19%）为霍奇金淋巴瘤。在诊断时，除同伴关系外，所有领域的 HRQoL 都很差。在积极治疗和随访期间，HRQoL 得到改善，超过了 MID。探索性分析显示，诊断时的 PROMIS 移动性<40 和严重疼痛强度=10 的一般较差评分与死亡率增加和生存状况恶化相关，但无统计学意义。
马拉维的儿科淋巴瘤患者在治疗和生存期间表现出较差的 HRQoL，且随着治疗和生存的改善而改善。基线 PROMIS 评分可能提供重要的预后信息。PROs 提供了一个机会，可以在资源匮乏的环境中纳入患者的意见，并优先考虑整体以患者为中心的护理。
