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儿科肿瘤治疗第一年中家长-临床医生关系的变化。

Change in the Parent-Clinician Relationship Throughout the First Year of Treatment in Pediatric Oncology.

机构信息

Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.

Division of Population Sciences' Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts.

出版信息

JAMA Netw Open. 2022 Sep 1;5(9):e2230503. doi: 10.1001/jamanetworkopen.2022.30503.

DOI:10.1001/jamanetworkopen.2022.30503
PMID:36074466
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9459655/
Abstract

IMPORTANCE

Challenges in the therapeutic relationship between clinicians and parents of children with cancer have been shown to emerge immediately after diagnosis, but little is known about whether such relationships improve over time.

OBJECTIVE

To better understand the potential evolution of parent-clinician relationships over the first year after diagnosis of pediatric cancer.

DESIGN, SETTING, AND PARTICIPANTS: This survey study was conducted from November 2015 to September 2020 at Dana-Farber Cancer Institute/Boston Children's Hospital and Texas Children's Hospital. Participants were oncology clinicians (attending physicians and fellows or nurse practitioners) and parents of children (aged <18 years) with a cancer diagnosis. Surveys were completed at study enrollment (soon after diagnosis [baseline]) and at the 3-month and 12-month follow-up.

EXPOSURES

Children had to have had at least 3 previous clinical visits with a primary oncology clinician.

MAIN OUTCOMES AND MEASURES

Survey instruments included the parent and clinician versions of the Relationship Challenges Scale, and factors associated with changes in relationships, including parental, clinician, and health care system attributes, were measured.

RESULTS

Survey participants included 150 parents (118 women [78.7%]; 98 with White race and ethnicity [65.3%]) and 49 clinicians (39 [79.6%] women; 39 with White race and ethnicity [79.6%]). Parents reported on 175 relationships with clinicians, and clinicians reported on 98 relationships with parents at all 3 time points (baseline, 3-month follow-up, and 12-month follow-up). Of the 175 relationships, 33 (18.9%) were considered to be challenging by parents at baseline, 27 (15.4%) were considered to be challenging at the 3-month follow-up, and 32 (18.3%) were considered to be challenging at the 12-month follow-up. Of the 33 challenging relationships at baseline, 20 (60.6%) resolved at the 12-month follow-up, whereas 13 (39.4%) had persistent challenges. However, 19 relationships that were not challenging at baseline had new challenges at the 12-month follow-up, corresponding to 59.4% of all challenges at the 12-month follow-up. No clinician behaviors were associated with improvement. Strategies used frequently (≥50%) by clinicians in their relationships that were associated with improvement included holding family meetings, apologizing, adapting to the parent's communication style, and devoting extra time and attention.

CONCLUSIONS AND RELEVANCE

Results of this study showed that some parents experienced challenging relationships with their child's oncology clinicians beginning at diagnosis and throughout the first year after diagnosis. Although many such relationships improved, others worsened, reflecting the vulnerable and stressful nature of parent-clinician relationships.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/465718743393/jamanetwopen-e2230503-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/3de14517ae39/jamanetwopen-e2230503-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/f487db79f251/jamanetwopen-e2230503-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/465718743393/jamanetwopen-e2230503-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/3de14517ae39/jamanetwopen-e2230503-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/f487db79f251/jamanetwopen-e2230503-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/efec/9459655/465718743393/jamanetwopen-e2230503-g003.jpg
摘要

重要性

已证实,临床医生与癌症患儿的父母之间的治疗关系方面的挑战会在诊断后立即出现,但尚不清楚这种关系是否会随着时间的推移而改善。

目的

更好地了解儿科癌症诊断后第一年父母与临床医生关系的潜在演变。

设计、地点和参与者:这项调查研究于 2015 年 11 月至 2020 年 9 月在丹娜-法伯癌症研究所/波士顿儿童医院和德克萨斯儿童医院进行。参与者为肿瘤学临床医生(主治医生和研究员或执业护士)和患有癌症的儿童(<18 岁)的父母。调查是在研究入组时(诊断后不久[基线])和 3 个月和 12 个月随访时完成的。

暴露情况

患儿必须至少与主要肿瘤学临床医生进行了 3 次先前的就诊。

主要结果和措施

调查工具包括父母和临床医生版本的关系挑战量表,以及与关系变化相关的因素,包括父母、临床医生和医疗保健系统属性。

结果

调查参与者包括 150 名父母(118 名女性[78.7%];98 名白种人种族和民族[65.3%])和 49 名临床医生(39 名[79.6%]女性;39 名白种人种族和民族[79.6%])。父母报告了与 175 名临床医生的 175 次关系,临床医生报告了与 98 名父母在所有 3 个时间点(基线、3 个月随访和 12 个月随访)的 98 次关系。在 175 次关系中,33 次(18.9%)被父母认为在基线时具有挑战性,27 次(15.4%)在 3 个月随访时具有挑战性,32 次(18.3%)在 12 个月随访时具有挑战性。在基线时具有挑战性的 33 个关系中,20 个(60.6%)在 12 个月随访时得到解决,而 13 个(39.4%)仍然具有挑战性。然而,基线时没有挑战性的 19 个关系在 12 个月随访时出现了新的挑战,占 12 个月随访时所有挑战的 59.4%。没有临床医生的行为与改善相关。临床医生在改善关系中经常使用(≥50%)的策略包括召开家庭会议、道歉、适应父母的沟通风格以及投入额外的时间和关注。

结论和相关性

这项研究的结果表明,一些父母在诊断时和诊断后第一年开始与孩子的肿瘤学临床医生之间经历了具有挑战性的关系。尽管许多此类关系有所改善,但其他关系却恶化了,反映了父母与临床医生关系的脆弱性和紧张性。

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本文引用的文献

1
Parent and Clinician Perspectives on Challenging Parent-Clinician Relationships in Pediatric Oncology.家长和临床医生对儿科肿瘤学中具有挑战性的医患关系的看法。
JAMA Netw Open. 2021 Nov 1;4(11):e2132138. doi: 10.1001/jamanetworkopen.2021.32138.
2
Symptoms in Children Receiving Treatment for Cancer-Part II: Pain, Sadness, and Symptom Clusters.接受癌症治疗的儿童的症状 - 第二部分:疼痛、悲伤及症状群集
J Pediatr Oncol Nurs. 2019 Jul/Aug;36(4):262-279. doi: 10.1177/1043454219849578.
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Symptoms in Children Receiving Treatment for Cancer-Part I: Fatigue, Sleep Disturbance, and Nausea/Vomiting.
接受癌症治疗的儿童的症状——第一部分:疲劳、睡眠障碍和恶心/呕吐
J Pediatr Oncol Nurs. 2019 Jul/Aug;36(4):244-261. doi: 10.1177/1043454219849576.
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Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.父母的痛苦和对儿科癌症治疗长期影响的信息需求。
Cancer. 2018 Dec 1;124(23):4529-4537. doi: 10.1002/cncr.31772. Epub 2018 Oct 1.
5
Development of the "Day 100 Talk": Addressing existing communication gaps during the early cancer treatment period in childhood cancer.“第 100 天谈话”的制定:解决儿童癌症治疗早期现有沟通差距。
Pediatr Blood Cancer. 2018 Jun;65(6):e26972. doi: 10.1002/pbc.26972. Epub 2018 Jan 31.
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Prognostic disclosures over time: Parental preferences and physician practices.预后告知的时间变化:父母的偏好和医生的做法。
Cancer. 2017 Oct 15;123(20):4031-4038. doi: 10.1002/cncr.30716. Epub 2017 Apr 3.
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Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives.癌症患儿父母与医生之间的艰难关系:一项关于父母和医生观点的定性研究。
Cancer. 2017 Feb 15;123(4):675-681. doi: 10.1002/cncr.30395. Epub 2016 Oct 11.
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Standards of Psychosocial Care for Parents of Children With Cancer.癌症患儿父母的心理社会护理标准
Pediatr Blood Cancer. 2015 Dec;62 Suppl 5(Suppl 5):S632-83. doi: 10.1002/pbc.25761.
9
Psychometric properties of the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Adult Visit Survey.消费者评估医疗保健提供者和系统(CAHPS®)临床医生和成人团体就诊调查的心理测量特性。
Med Care. 2012 Nov;50 Suppl(Suppl):S28-34. doi: 10.1097/MLR.0b013e31826cbc0d.
10
Measuring therapeutic alliance between oncologists and patients with advanced cancer: the Human Connection Scale.测量肿瘤学家与晚期癌症患者之间的治疗联盟:人际联系量表。
Cancer. 2009 Jul 15;115(14):3302-11. doi: 10.1002/cncr.24360.