Abstract
Presentation Date: 6/9/2024
Presentation Start Time: 2:00:00 PM
Background
Individuals living with sickle cell disease (SCD) have a complex disease course. It is a rare genetic disease that affects less than 1% of the population in United States. However, it affects millions of individuals worldwide. In recent decades as care for these individuals has improved their life expectancy has also increased. Now, we have adult women with SCD experiencing menopause transition; yet there is no evidence-based practice (EBP) for menopause management in SCD. The goal of this formative implementation science study was to adapt an existing evidence-based menopause screening tool to implement in the sickle cell center.
Methods
Our research team used the ADAPT-ITT model, with a focus on the Assessment, Decision, Adaptation phases of the adaptation process. ADAPT-ITT is a systematic model with eight sequential phases.
Results
In the initial Assessment phase, we conducted a needs assessment with chart reviews and interviews with the target patient population, our community advisory board (CAB), and providers. Medical records for our cohort showed that there is a lack of documentation on menopause and last menstrual period. A research meeting was conducted with sickle cell providers to determine baseline understanding and gaps in perimenopausal care in SCD. All providers indicated lack of knowledge regarding menopause. Additionally, we sought input from our sickle cell CAB to determine the best approach for menopause screening. A menopause lecture was delivered to providers and the CAB. Various menopause questionnaires were presented including the Menopause Questionaire 6 (MQ6), Menopause-Specific Quality of Life Questionnaire, and Greene Climacteric Scale. Providers showed concern with lengthy questionnaires and unanimously opted for an efficient tool. Additionally, we conducted face to face interviews using validated menopause questionnaire from the North American Menopause Society with 17 women with SCD (age>30 years). We found that there were several overlapping symptoms between SCD and menopause transition [Figure 1] and that individuals with SCD may be experiencing menopause earlier than the average population.
Based on learnings from the Assessment phase, our research team moved to the Decision phase of the model: we selected the MQ6 as the screening tool for our study due to its efficiency and versatility. It has been utilized in busy primary care settings internationally. This scale assesses menopausal symptoms for which there are evidence-based treatment options. It is written in lay language, can be used during any clinical encounter, and takes about 2 minutes to complete. Given that the MQ6 has not specifically been designed for individuals with chronic conditions and the overlapping symptoms between menopause and SCD manifestations, we decided to adapt the screening tool to fit SCD.
In the Adaptation phase we collaborated with the author of the MQ6, providers, and CAB. Given the success of the MQ6 in managing perimenopausal women we decided to maintain fidelity to the original questionnaire and focused the adaptation to address and further delineate between menopause and SCD. We added Part B with two questions specific to SCD. The first question assesses patient perception as to whether they are attributing what may be menopausal symptoms to their SCD. The second question attempts to delineate if menopause transition has an impact on SCD course [Table].
Conclusions
Utilization of the ADAPT-IT model allowed us to successfully adapt the existing MQ6 to SCD. In total, the adapted version takes about 3 minutes, and this brevity is a leading feature which is approved for use by our sickle cell physicians. The next phase will be Production with integration into the electronic medical record followed by additional Training for the healthcare team. The final phase will be strategic implementation and pilot Testing of the tool. After the pilot implementation, Topical experts and stakeholders will be consulted further for additional adaptation if necessary. Diagnosis of menopause transition and referral to gynecology are outcome measures for successful implementation. Lastly, the tool will be validated for SCD with further biomarkers and diagnosis of menopause transition by the gynecologist. Our goal is to successfully screen and manage menopause transition in women with SCD to allow for graceful aging.
Figure 1Overlapping symptoms of SCD and menopause
Adapted Version of MQ6