McCarthy Sarah R, Golembiewski Elizabeth H, Gravholt Derek L, Clark Jennifer E, Clark Jeannie, Fischer Caree, Mulholland Hannah, Babcock Kristina, Montori Victor M, Jones Amie
Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN 55905, USA.
Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN 55905, USA.
Children (Basel). 2022 May 5;9(5):664. doi: 10.3390/children9050664.
Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions ( = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors.
患有罕见或危及生命的慢性疾病的儿童及其家庭面临着较高的心理社会困扰风险。然而，尽管心理社会困扰及其先兆对患者和家庭的健康及功能有影响，但在医疗记录中可能不会常规记录这些情况。本研究的目的是描述目前针对患有罕见或危及生命的慢性疾病的儿童及其家庭心理社会困扰的医疗记录文档记录做法。对60名接受儿科综合护理项目的患有罕见或危及生命的慢性疾病患者的医疗记录进行了审查。研究团队成员从该项目中最近一次与临床医生的就诊记录中提取了结构化数据元素（如诊断、人口统计学信息）和记录叙述。使用混合定量（即主题频率计数）和定性方法对心理社会主题进行了分析。记录中记录的与心理社会困扰相关的主题包括儿童和父母的情绪问题、父母的社会支持、兄弟姐妹的情绪或身体问题、家庭结构（如父母是否在一起）以及经济担忧。然而，35%的记录未提及任何心理社会问题。尽管一些记录中包含了心理社会问题的例子，但在该样本的三分之一以上的记录中都没有。对于患有罕见或危及生命的慢性疾病的患者及其护理人员来说，更积极地引出并对心理社会问题进行标准化记录，可能会提高医疗服务提供者识别和干预心理社会问题及其风险因素的能力。
