Identifying Symptoms of Distress in Youth Living with Neurofibromatosis Type 1 (NF1).
Identifying Symptoms of Distress in Youth Living with Neurofibromatosis Type 1 (NF1).
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DOI：
10.1007/s10897-017-0128-1
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发表时间：
2018-03
影响因子：
1.9
通讯作者：
Pao M
中科院分区：
文献类型：
--
作者：
Wiener L;Battles H;Bedoya SZ;Baldwin A;Widemann BC;Pao M
患有1型神经纤维瘤病（NF1）的儿童和青少年发生广泛的行为、发育和认知障碍以及生活质量下降的风险增加。迄今为止，还没有开发出能够快速评估以下症状的社会心理筛查工具：1)可在NF1儿童的常规医疗预约中得到解决；2)可产生可解释和可操作的结果；3)可纳入医疗保健；4)可快速识别有风险的患者，以便更好地解决提供适当护理的问题。本研究旨在检验困扰温度计（DT）和症状检查表的整体可用性，以及儿童患者、其护理人员和医疗服务提供者之间DT评分的一致性。80名患有NF1的青少年（7-21岁）完成了DT和随附的检查表。本研究的结果表明，DT和症状检查表是可接受的和可行的完成在临床设置。一小部分报告了高痛苦，需要进一步的评估和干预。照顾者、儿童和医疗保健提供者的痛苦等级之间也发现了显著的不一致。总的来说，DT和随附的症状清单提供了重要的信息，以确定儿童的痛苦的存在和背景，但由于没有评估这些症状是否干扰儿童的日常生活而受到限制。
Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available. This study was conducted to test the overall usability of the Distress Thermometer (DT) and symptom checklist and concordance of DT ratings between pediatric patients, their caregivers and medical providers. Eighty youth (ages 7–21) living with NF1 completed the DT and an accompanying checklist. The findings of this study suggest the DT and symptom checklist was acceptable and feasible to complete in a clinic setting. A small subset reported high distress that required further assessment and intervention. Significant discordance between distress ratings of caregivers and children and healthcare providers was also found. Overall, the DT and accompanying symptom checklist provide important information to identify the presence of distress and contextualize the child’s distress but is limited by not assessing whether these symptoms interfere with the child’s daily life.
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影响因子：
3.3
作者：
CANNING, EH
通讯作者：
CANNING, EH
影响因子：
3.2
作者：
Kazak, Anne E.;Abrams, Annah N.;Kupst, Mary Jo
通讯作者：
Kupst, Mary Jo
影响因子：
--
作者：
Garwood, Molly M.;Bernacki, Jessica M.;Klein-Tasman, Bonita P.
通讯作者：
Klein-Tasman, Bonita P.
DOI：
10.1186/1546-0096-10-33
发表时间：
2012-09-17
期刊：
Pediatric rheumatology online journal
影响因子：
--
作者：
Lundberg V;Lindh V;Eriksson C;Petersen S;Eurenius E
通讯作者：
Eurenius E
影响因子：
3.6
作者：
Brown, Ronald T.;Wiener, Lori;Zeltzer, Lonnie
通讯作者：
Zeltzer, Lonnie