Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Miyagi, Japan.
Iwate Medical University School of Nursing, Iwate, Japan.
J Patient Rep Outcomes. 2023 Mar 9;7(1):25. doi: 10.1186/s41687-023-00565-z.
Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative care. However, the status of the routine use of PROMs in palliative care in Japan is presently unclear. Therefore, this study aimed to clarify this complex question. To this end, we administered a questionnaire survey either online or via telephone interviews (questionnaire: sent to 427 designated cancer hospitals, 423 palliative care units [PCUs], and 197 home hospices; interviews: conducted at 13 designated cancer hospitals, nine PCUs, and two home hospices).
Questionnaires were returned from 458 institutions (44% response rate). We found that 35 palliative care teams (PCTs, 15%), 66 outpatient palliative care services (29%), 24 PCUs (11%) and one (5%) home hospice routinely used PROMs. The most frequently implemented instrument was the Comprehensive Care Needs Survey questionnaire. Moreover, 99 institutions (92%) that routinely used PROMs responded these instruments as useful in relieving patients' symptoms; and moreover, the response rate in regard to usefulness in symptom management was higher than that of institutions that did not routinely use PROMs (p = 0.002); > 50% of the institutions that routinely used PROMs stated that use of these instruments was influenced by disease progression and patients' cognitive function. Moreover, 24 institutions agreed to be interviewed, and interviews demonstrated the benefits of and the barriers to the implementation of PROMs. Effective methods used in the implementation of PROMs were introduced as efforts to reduce the burden placed on patients and to promote healthcare providers' education in the use of PROMs.
This survey quantified the status of the routine use of PROMs within specialized palliative care in Japan, revealed barriers to wider PROM use, and identified needed innovations. Only 108 institutions (24%) routinely used PROMs within specialized palliative care. Based on the results of the study, it is necessary to carefully consider the usefulness of PROs in clinical palliative care, perform careful selection of PROMs according to the patient's condition, and evaluate how specifically to introduce and operate PROMs.
在癌症护理中，医护人员和患者之间的症状评估存在差异，因此建议为接受姑息治疗的患者使用患者报告的结局测量（PROM）。然而，目前尚不清楚日本姑息治疗中常规使用 PROM 的情况。因此，本研究旨在阐明这一复杂问题。为此，我们通过在线或电话访谈的方式进行了问卷调查（问卷：发送至 427 家指定癌症医院、423 家姑息治疗病房和 197 家家庭临终关怀机构；访谈：在 13 家指定癌症医院、9 家姑息治疗病房和 2 家家庭临终关怀机构进行）。
共收到 458 家机构的回复（回复率为 44%）。我们发现，有 35 个姑息治疗团队（15%）、66 个门诊姑息治疗服务（29%）、24 个姑息治疗病房（11%）和 1 个家庭临终关怀机构（5%）常规使用 PROM。使用最频繁的工具是综合关怀需求调查问卷。此外，99 家（92%）常规使用 PROM 的机构表示这些工具有助于缓解患者的症状；而且，在症状管理方面的有用性方面，常规使用 PROM 的机构的回复率高于不常规使用 PROM 的机构（p=0.002）；＞50%的常规使用 PROM 的机构表示，这些工具的使用受到疾病进展和患者认知功能的影响。此外，有 24 家机构同意接受采访，访谈展示了实施 PROM 的益处和障碍。作为减轻患者负担和促进医疗保健提供者使用 PROM 教育的努力，介绍了实施 PROM 的有效方法。
本调查量化了日本专门姑息治疗中常规使用 PROM 的情况，揭示了更广泛使用 PROM 的障碍，并确定了需要创新的领域。只有 108 家（24%）专门姑息治疗机构常规使用 PROM。根据研究结果，有必要仔细考虑在临床姑息治疗中使用 PRO 的有效性，根据患者的情况仔细选择 PROM，并评估如何具体引入和操作 PROM。
