Day Melissa, Bonnet Kemberlee, Schlundt David G, DeBaun Michael, Sharma Deva
Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease, Vanderbilt University Medical Center, Nashville, Tennessee.
Department of Psychology, Vanderbilt University, Nashville, Tennessee.
Womens Health Rep (New Rochelle). 2020 Jan 31;1(1):36-46. doi: 10.1089/whr.2019.0008. eCollection 2020.
Acute vaso-occlusive pain, herein referred to as acute sickle cell disease (SCD) pain, associated with menstruation has received little attention. Key unanswered questions include how women differentiate acute SCD pain and menstrual cramps, and how both types of pain impact quality of life. Using inductive/deductive qualitative research methods, three focus groups were conducted to understand the patient experience of acute SCD pain associated with menstruation. Fourteen women with SCD participated in our focus groups. Major themes were identified: (1) clinical sequelae of SCD surrounding menstruation, (2) coping with psychosocial challenges, (3) interpersonal difficulties and support systems, (4) impacts on quality of life, (5) impacts on emotional well-being, and (6) proposed solutions for health care systems. Women with SCD can distinguish acute SCD pain from menstrual cramps. Health care providers should become more familiar with acute SCD pain associated with menstruation and encourage a patient-centered dialogue to determine appropriate courses of action.
与月经相关的急性血管闭塞性疼痛，在此称为急性镰状细胞病（SCD）疼痛，很少受到关注。尚未解答的关键问题包括女性如何区分急性SCD疼痛和月经痉挛，以及这两种疼痛如何影响生活质量。采用归纳/演绎定性研究方法，开展了三个焦点小组，以了解与月经相关的急性SCD疼痛的患者体验。14名患有SCD的女性参与了我们的焦点小组。确定了主要主题：（1）月经期间SCD的临床后遗症，（2）应对心理社会挑战，（3）人际困难和支持系统，（4）对生活质量的影响，（5）对情绪健康的影响，以及（6）针对医疗保健系统提出的解决方案。患有SCD的女性能够区分急性SCD疼痛和月经痉挛。医疗保健提供者应更加熟悉与月经相关的急性SCD疼痛，并鼓励以患者为中心的对话，以确定适当的行动方案。
