Physician distress when treatments fail. Survey on physician distress when treating persons with drug-resistant epilepsy and knowledge of neuropalliative care

被引：2

作者：

Drees, Cornelia ^{[1
,2
,7
]}

Hixon, Alison M. ^{[1
,3
]}

Sillau, Stefan ^{[1
]}

Lopez-Esquibel, Natalie ^{[1
]}

Spitz, Mark ^{[1
]}

Mohler, Ryan ^{[1
]}

Baca, Christine ^{[1
,4
]}

Fetrow, Kirsten ^{[1
,3
,5
]}

Brown, Mesha-Gay ^{[1
,6
]}

Vaughan, Christina ^{[1
]}

机构：

[1] Univ Colorado, Dept Neurol, Denver, CO USA

[2] Mayo Clin Arizona, Dept Neurol, Phoenix, AZ USA

[3] Washington Univ, Barnes Jewish Hosp, St Louis, MO USA

[4] Virginia Commonwealth Univ, Dept Neurol, Richmond, VA USA

[5] Univ Colorado, Childrens Hosp Colorado, Dept Pediat, Denver, CO USA

[6] Centura Hlth, Dept Neurol, Denver, CO USA

[7] Neurol Dept, PXSP CC 202, 5779 E Mayo Clin Blvd, Phoenix, AZ 85054 USA

来源：

EPILEPSY & BEHAVIOR | 2023年 / 140卷

关键词：

Drug-resistant epilepsy; Epilepsy surgery; Medical provider distress; Neuropalliative care; Palliative care; PALLIATIVE CARE;

D O I：

10.1016/j.yebeh.2022.108925

中图分类号：

B84 [心理学]; C [社会科学总论]; Q98 [人类学];

学科分类号：

03 ; 0303 ; 030303 ; 04 ; 0402 ;

摘要：

Objective: Drug-resistant epilepsy can be difficult to cure and may pose emotional challenges for epilepsy providers. Neuropalliative care (NPC) can augment quality of life (QOL) in persons with neurological dis-eases and may add meaningful elements to the treatment repertoire of epilepsy specialists even if sei-zures continue. However, NPC has not been widely implemented in epilepsy. Our study aimed to determine whether physicians of persons with drug-resistant epilepsy (PWDRE) experience distress when faced with treatment failure (Engel class >= 2), either failure of medications-only (PWDREmo) or of both medications and surgery (procedures with curative intent (PWDREms)). Furthermore, we evalu-ated physician knowledge about and referrals to NPC following treatment failures to help improve patient QOL despite ongoing seizures.Methods: An anonymous online survey was distributed to US epilepsy physicians through the American Epilepsy Society website and personal email to assess levels of distress experienced when caring for PWDREmo and PWDREms (7-point Likert scale ["1" = "no distress", "7" = "most distress ever felt"]), and knowledge and use of NPC.Results: Eighty-two physicians completed the survey. Most experienced distress when epilepsy treat-ments failed: 59% felt moderate distress (>= 4) with PWDREmo (median "4", mean 3.74, range 1-7), 90% suffered moderate to severe distress (5, 5.17, 1-7) with PWDREms. Distress over PWDREms was sig-nificantly greater than distress over PWDREmo (p < 0.0001). Forty-three percent reported confidence in their knowledge about NPC. Only 15% were likely to refer PWDREmo to NPC, while 44% would consider it for PWDREms.Conclusion: Among survey responders, physician distress was high when confronted with treatment fail-ures, especially the failure of epilepsy surgery. Fewer than half of responders were likely to refer patients to NPC. Further research is necessary to determine extent, reasons, and effects of physician distress and whether improved understanding of and patient access to NPC would help alleviate physician distress when faced with treatment failures in PWDRE.(c) 2022 Elsevier Inc. All rights reserved.

引用

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