Sydney School of Public Health, University of Sydney, Sydney, Australia; Centre for Kidney Research, Children's Hospital at Westmead, Sydney, Australia.
Sydney School of Public Health, University of Sydney, Sydney, Australia; Centre for Kidney Research, Children's Hospital at Westmead, Sydney, Australia.
Semin Nephrol. 2024 May-Jul;44(3-4):151547. doi: 10.1016/j.semnephrol.2024.151547. Epub 2024 Aug 30.
Social functioning is a key aspect of daily life and is important to patients living with chronic kidney disease (CKD) and their caregivers. Many patients with CKD experience debilitating symptoms and treatment burden that can diminish their social functioning and thereby overall social health, which is the aspect of a person's well-being relating to their interactions and connections with others. In patients with CKD, symptoms (e.g., fatigue and pain), burden of ongoing treatments (including kidney replacement therapies), and medication side effects can impair social functioning. Having to manage responsibilities of self-management, which can include time-consuming and invasive treatments such as dialysis, can severely limit social functioning in patients with CKD. This can lead to poor social connections at many levels, including with family, friends, peers, and colleagues, and can hinder the development of new relationships. Patients with CKD with poorer social functioning have been reported to have worse quality of life and impaired mental health. Many patients with CKD rely on an informal caregiver-usually a family member or friend-to assist with management of their disease. This can place strain on the caregiver, further limiting opportunities for social connections for both the patient and caregiver. Although social functioning is critical for the overall well-being of patients with CKD, it remains underaddressed clinically, and patient-reported outcome measures (PROMs) to assess social functioning are limited. The objective of this article is to define social functioning, discuss the impacts of social functioning in patients with CKD and their caregivers, outline PROMs that have included assessment of social functioning, and discuss considerations in developing an appropriate PROM to measure social functioning in patients with CKD. This may help to inform the evaluation of interventions and care regarding social functioning within the CKD population.
社会功能是日常生活的一个重要方面，对患有慢性肾脏病（CKD）的患者及其照顾者而言尤为重要。许多 CKD 患者会经历衰弱的症状和治疗负担，这会降低他们的社会功能，从而影响整体社会健康，即一个人与他人互动和联系的方面。在 CKD 患者中，症状（例如疲劳和疼痛）、持续治疗的负担（包括肾脏替代疗法）和药物副作用都可能损害社会功能。患者需要管理自我管理的责任，其中可能包括耗时且侵入性的治疗，如透析，这会严重限制 CKD 患者的社会功能。这可能导致在许多层面上社交联系不佳，包括与家人、朋友、同龄人以及同事的联系，并可能阻碍新关系的发展。有报道称，社会功能较差的 CKD 患者生活质量较差，心理健康受损。许多 CKD 患者依赖非专业照顾者（通常是家庭成员或朋友）来协助管理他们的疾病。这可能会给照顾者带来压力，进一步限制患者和照顾者的社交机会。尽管社会功能对 CKD 患者的整体健康至关重要，但在临床实践中仍未得到充分重视，且评估社会功能的患者报告结局（PRO）指标有限。本文的目的是定义社会功能，讨论社会功能对 CKD 患者及其照顾者的影响，概述包含社会功能评估的 PRO 指标，并讨论在为 CKD 患者开发合适的 PRO 来衡量社会功能时需要考虑的因素。这可能有助于为 CKD 人群中社会功能的干预措施和护理评估提供信息。
