Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model

Abstract Background: Transition from pediatric to adult care has been a recent focus of sickle cell programs across the country due to patients with sickle cell disease (SCD) to living longer. 1 Transition programs for other chronic conditions focus largely on patient knowledge of the disease, treatments, and appointment compliance but for patients with SCD, social determinants of health (SDOH) must also be considered when guiding patients toward adult care. 2 Historically, lack of acknowledgement of the importance of relationships and trust building when addressing SDOH has led to barriers in patient responsiveness. 3 To facilitate this aspect of transition, our recently hired Community Health Worker (CHW) developed a Community Health Transitional Questionnaire (CHTQ) and conducted a Quality Improvement (QI) project to address SDOH in a patient-centered manner during transition to adult care visits at the clinic. Aims: Refine the CHTQ by gathering the "voice of the customer" to provide a more patient-centered approach to transition to adult care for patients with SCD. Complete the CHTQ with 70% of transition-aged (12-25 years) patients by 7/1/21. Methods: The CHTQ consists of 32 questions about SDOH in 8 categories (Food, Housing, Money/Finances, Transportation, Education/Work, Family and Other Support, Stress Prior to/After COVID, and Sleep). Thirty pediatric sickle cell patients were identified as being within the established transitional age group. A series of Plan-Do-Study-Act (PDSA) cycles were used to refine the CHTQ. Through patient/caregiver feedback, small increments of change were used to establish a CHTQ that would improve patient care and be accepted by the patients/caregivers. PDSA #1: During regularly scheduled appointments, two patients and their caregivers met with the CHW who described the purpose of the CHTQ and then asked the patient to privately complete the CHTQ. PDSA #2: Because of feedback received from PDSA #1, the CHW allowed the next two patients to have caregivers present while answering the CHTQ, but explained that ideally the patient should be able to answer the CHTQ without input from their caregiver before transition to an adult environment. PDSA #3: Because of the feedback received from PDSA #2, the CHW accompanied the clinic RN to the exam room and worked the CHTQ into the nursing check-in questions in an informal manner making the questions seem more routine. Results: After 3 PDSA cycles, 17 additional patients/caregivers completed the CHTQ without issues or concerns. A total of 22/30 (73%) CHTQs met the goal of completion by 7/1/21. One additional CHTQ has been completed since. Using the information from the CHTQ, the team has been able to better address individualized SDOH for each patient. For example, one area of concern identified was transportation with 9/23 (39%) patients expressing concerns getting to & from appointments and/or school/work. Transportation needs were then discussed with the clinic social worker who is now working with those patients, giving them tools to arrange transportation. Conclusion For SCD patients, it appears imperative that a relationship be established prior to inquires about SDOH. Using an informal patient-centered approach with the CHTQ was more likely to gain patient trust and allowed the CHW to obtain information needed to assist the patient with SDOH issues. Once SDOH issues were identified through the CHTQ, the CHW was able to find patient-driven, individualized resources addressing those concerns. References DeBaun, M.R. & Telfair, J. (2012). Transition and Sickle Cell Disease. PEDIATRICS, 130(5), 926-935 https://doi.org/10.1542/peds.2011-3049 Andermann, A. (2016). Taking action on the social determinants of health in clinical practice: a framework for health professionals. Canadian Medical Association Journal, 188(17-18), E474-E483. https://doi.org/10.1503/cmaj.160177 Cheney, C., Pecci, A., & Porter, S (2020, May). Social Determinants of Health: Lead or Partner. HealthLeaders. https://www.healthleadersmedia.com/clinical-care/social-determinants-health-lead-or-partner-0 Disclosures No relevant conflicts of interest to declare.

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Sickle cell disease pain management and the medical home

Hematology ◽

10.1182/asheducation.v2013.1.433.3850724 ◽

2013 ◽

Vol 2013 (1) ◽

pp. 433-438 ◽

Cited By ~ 1

Author(s):

Jean L. Raphael ◽

Suzette O. Oyeku

Keyword(s):

Pain Management ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Medical Home ◽

Cost Effective ◽

Cell Disease ◽

Patient Centered ◽

Centered Care ◽

The Individual ◽

Effective Models

Pain is the most common cause for hospitalization and acute morbidity in sickle cell disease (SCD). The consequences of SCD-related pain are substantial, affecting both the individual and the health care system. The emergence of the patient-centered medical home (PCMH) provides new opportunities to align efforts to improve SCD management with innovative and potentially cost-effective models of patient-centered care. The Department of Health and Human Services has designated SCD as a priority area with emphasis on creating PCMHs for affected patients. The question for patients, clinicians, scientists, and policy-makers is how the PCMH can be designed to address pain, the hallmark feature of SCD. This article provides a framework of pain management within the PCMH model. We present an overview of pain and pain management in SCD, gaps in pain management, and current care models used by patients and discuss core PCMH concepts and multidisciplinary team–based PCMH care strategies for SCD pain management.

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Impact of COVID-19 pandemic on access to education programs for children with sickle cell disease and social deprivation: a qualitative study (Preprint)

10.2196/preprints.31248 ◽

2021 ◽

Author(s):

Alizee Sterlin ◽

Mariane de Montalembert ◽

Melissa Taylor ◽

Sandrine Mensah ◽

Marie Vandaele ◽

...

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Social Deprivation ◽

Economic Status ◽

Geographical Area ◽

Age Distribution ◽

Therapeutic Education ◽

Future Research ◽

Cell Disease ◽

Patient Centered

BACKGROUND Sickle cell disease is a lifelong disease for which health outcomes may be greatly influenced by patient and parent self-care knowledge and skills. Therapeutic education (TPE) is a patient-centered teaching instrument, based on patient adaptative processes and their subjective and objective needs, whether expressed or not. TPE is delivered in individual or group sessions, usually during face-to-face meetings. The COVID-19 pandemic has impacted the modalities of TPE by promoting online training. The RoFSED health network, which operates in the Paris region and is focused on coordination of care and TPE for children with SCD, has implemented online TPE since May 2020. OBJECTIVE To evaluate the accessibility of children with SCD to online TPE. METHODS Characteristics of TPE before and after the onset of the pandemic were compared to evaluate the accessibility of children with SCD to online TPE. RESULTS We observed an increase in the total number of trained children, mostly related to increased participation in individual sessions. The age distribution of participants did not vary. However, participation varied greatly according to the geographical area of residence, with a major drop from 22.4 to 4.9% of attendees living in Seine saint Denis, one of the most socio-economically deprived French departments, contrasting with an increased proportion of attendees living in Paris and Hauts-de-Seine, two of the most favoured French departments. CONCLUSIONS Our results highlight the potential of online TPE tools for patients and families with SCD but also reveal unequal access according to socio-economic status. Future research is needed, in particular on the safety and efficacy of these tools, as well as on improving access for the more vulnerable patients living in socially disadvantaged areas.

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Effectiveness of an educational programme about sickle cell disease in the form of active methodologies among community health agents and nursing technicians of primary care in Minas Gerais, Brazil

Paediatrics and International Child Health ◽

10.1080/20469047.2015.1123849 ◽

2016 ◽

Vol 37 (1) ◽

pp. 56-62 ◽

Cited By ~ 3

Author(s):

Ludmila Mourão Xavier Gomes ◽

Thiago Luis de Andrade Barbosa ◽

Lara Jhulian Tolentino Vieira ◽

Karla Patrícia Ataíde Nery Castro ◽

Antônio Prates Caldeira ◽

...

Keyword(s):

Primary Care ◽

Sickle Cell Disease ◽

Community Health ◽

Sickle Cell ◽

Educational Programme ◽

Minas Gerais ◽

Cell Disease

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Clinical trial considerations in sickle cell disease: patient-reported outcomes, data elements, and the stakeholder engagement framework

Hematology ◽

10.1182/hematology.2021000252 ◽

2021 ◽

Vol 2021 (1) ◽

pp. 196-205

Author(s):

Sherif M. Badawy

Keyword(s):

Clinical Trial ◽

Clinical Trials ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Stakeholder Engagement ◽

Patient Reported Outcomes ◽

Outcomes Assessment ◽

Cell Disease ◽

Patient Centered ◽

Patient Reported

Abstract Patients with sickle cell disease (SCD) have significant impairment in their quality of life across the life span as a consequence of serious disease burden with several SCD-related complications. A number of disease-modifying therapies are currently available, yet long-term clinical benefits in real-world settings remain unclear. Over the past few years, a number of important initiatives have been launched to optimize clinical trials in SCD in different ways, including: (1) established panels through a partnership between the American Society of Hematology (ASH) and the US Food and Drug Administration; (2) the ASH Research Collaborative SCD Clinical Trials Network; (3) the PhenX Toolkit (consensus measures for Phenotypes and eXposures) in SCD; and (4) the Cure Sickle Cell Initiative, led by the National Heart, Lung, and Blood Institute. Electronic patient-reported outcomes assessment is highly recommended, and patient-reported outcomes (PROs) should be evaluated in all SCD trials and reported using Standard Protocol Items Recommendations for Interventional Trials guidelines. Patient-centered outcomes research (PCOR) approaches and meaningful stakeholder engagement throughout the process have the potential to optimize the execution and success of clinical trials in SCD with considerable financial value. This article reviews several clinical trial considerations in SCD related to study design and outcomes assessment as informed by recent initiatives as well as patient-centered research approaches and stakeholder engagement. A proposed hematology stakeholder-engagement framework for clinical trials is also discussed.

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Sickle Cell Disease: Relating Community Health and Heredity

Science Scope ◽

10.2505/4/ss14_038_04_33 ◽

2014 ◽

Vol 038 (04) ◽

Author(s):

Stephanie George ◽

Elizabeth Mitchell ◽

Norman Mitchell ◽

Travis Eason ◽

Beng Fuh ◽

...

Keyword(s):

Sickle Cell Disease ◽

Community Health ◽

Sickle Cell ◽

Cell Disease

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Blood Transfusion: Knowledge, Perspectives, and Experience of Individuals With Sickle Cell Disease

Journal of Patient Experience ◽

10.1177/2374373520956744 ◽

2020 ◽

Vol 7 (6) ◽

pp. 1109-1114

Author(s):

Raymona H Lawrence ◽

Ashley Singleton ◽

Jane Branscomb

Keyword(s):

Sickle Cell Disease ◽

Data Storage ◽

Sickle Cell ◽

Blood Products ◽

Smartphone Applications ◽

Cell Disease ◽

Patient Centered ◽

Advantages And Disadvantages ◽

Patient Voice ◽

Transfusion Complications

Patient voice and perspective were needed to inform effective, comprehensive strategies for reducing preventable transfusion-associated complications. This report presents the results of interviews with sickle cell disease (SCD) patients and implications for strategies to reduce transfusion complications in this population. Twenty-two participants were recruited from 2 comprehensive SCD treatment centers in Georgia and interviewed regarding knowledge about transfusions and potential complications, attitudes about data storage and sharing, and the transfusion experience. Participants had general knowledge of physiology, blood products, and blood transfusions, including knowing the risk of complications, but varied in comprehension of complex health information and level of misinformation. Patients also varied in preferences for how they would like their transfusion information stored. They saw both advantages and disadvantages to wallet cards, smartphone applications, and registries. There is a need for a patient-centered approach that involves transfusion education and shared decision-making. Education should range from essential and simple to more in-depth to accommodate varying education and comprehension levels. Multiple tracking methods should be offered to store sensitive patient information.

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Three Wishes for Sickle Cell Disease: Results from a multi-stakeholder vision-casting project in Tennessee

Clinical Health Promotion - Research and Best Practice for patients staff and community ◽

10.29102/clinhp.21014 ◽

2021 ◽

Vol 11 (2) ◽

pp. e21014

Author(s):

Matthew P Smeltzer ◽

◽

Taylor P Hodges ◽

Jamie Whartenby ◽

Jane S Hankins ◽

...

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Genetic Disorders ◽

Cell Disease ◽

Multiple Perspectives ◽

Patient Centered ◽

The Us ◽

Using Data ◽

Multi Stakeholder ◽

Data Coordination

Although sickle cell disease (SCD) is one of the most common genetic disorders in the US, disparities in research and funding persist. To better understand stakeholder priorities, we conducted a virtual vision-casting session utilizing a graphic recorder and content analysis. Stakeholders responded to the question: “If you had three magic wishes for SCD in TN, what would they be?”. Wishes for SCD centered around information and data, care and policy, and community. Better patient-centered information about treatments and modernization of data were high priorities. Stakeholders identified a need for heath equity, starting with lifetime continuity of care and access to curative treatment for all persons with SCD. Key points concerning the community included better patient inclusion in research, increased awareness, and greater public knowledge. SCD patients expressed a desire for honesty, transparency, compassion, and trust. Key areas to address in SCD include better data coordination, more influence on health policy, broader access to care and more community awareness, with the ultimate goal of improving the lives of persons with SCD. Using data to improve care and address health disparities will require researchers listening to stakeholders and understanding multiple perspectives to form unified goals.

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A Pilot Intervention to Improve Hydroxyurea Adherence in Youth with Sickle Cell Disease through Community Health Workers: The "Habit" Study

Blood ◽

10.1182/blood.v128.22.1310.1310 ◽

2016 ◽

Vol 128 (22) ◽

pp. 1310-1310 ◽

Cited By ~ 1

Author(s):

Nancy S. Green ◽

Deepa Manwani ◽

Luisa Soto ◽

Yina Castillo ◽

Karen Ireland ◽

...

Keyword(s):

Sickle Cell Disease ◽

Community Health ◽

Community Health Workers ◽

Sickle Cell ◽

Text Messaging ◽

Health Workers ◽

Intervention Group ◽

Control Group ◽

Cell Disease ◽

Structured Intervention

Abstract Background: Chronic disease regimens for youth require self-management skills for a daily medication habit. Incomplete adherence to hydroxyurea (HU) is a treatment barrier for sickle cell disease (SCD) (Walsh KE, Pediatrics 2014). HU induction of fetal hemoglobin (HbF) is dose-dependent but not a standardized target (Ware RE, Hematology Am Soc Hematol Educ Program, 2015). In a previous 2-site retrospective analysis of youth with SCD, large deviation from historical personal best (PBest) HbF, a clinic-based form of maximum dose (Green NS, PBC, 2016), was common and correlated with increased acute hospital use. Here we hypothesized that: 1) A HU habit can develop through education and support of youth-parent dyads from a structured intervention of community health workers (CHW), augmented by text messaging; 2) Improved used will increase HbF; 3) The intervention is feasible and acceptable. Methods: We conducted a 2-site R21-funded randomized controlled feasibility trial (RCT), "Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment: HABIT" (Smaldone A, Contemp Clin Trials, 2016)." Youth- parent dyads (youth ages 10-18) were recruited for the 6-month intervention. Eligibility required a ≥15% drop from PBest HbF on stable HU dose over the preceding year. Intervention dyads received a 6-month structured intervention of education and support by CHWs with home visits and text messaging, versus educational materials. Primary outcomes were HbF, % deviation from PBest HbF and HU pharmacy refills. Results: Using 2:1 randomization, 28 parent-youth dyads participated (18 intervention, 10 control): mean age 14.3±2.6 years, 42.9% female. At baseline, no differences were seen in HbF (10.5% vs. 13.4%, p=0.25), but deviation from PBest HbF was higher in the control group (-42.6%) than the intervention (18.1%, p=0.009). Using a growth model for % deviation from PBest HbF, the intervention group demonstrated a modest absolute improvement in deviation from PBest (2.2% per month higher in the intervention group), peaking at month 4 (p=0.31), and modest gain in mean HbF (3 versus 1.8). Four subjects exceeded their PBest. Compared to the year before intervention, pharmacy refills improved for the intervention group: 64.6% year prior, 80.7% (months 0 to 3), 85.9% (months >3 to 6), while the control group was unchanged (79.2% year prior, 83.6% months 0 to 3, 79.4% months >3 to 6). Intervention feasibility and acceptability by dyads were excellent. Conclusions: The 6-month pilot RCT "HABIT" may improve HU adherence measured by improved HbF, deviation from PBest and pharmacy refill, was feasible and acceptable, and suggests utility as an intervention. Based on these findings, a multi-center HABIT RCT of 1-year duration powered to test efficacy is planned. Funded by 5R21NR013745 (PIs Green, Smaldone) Figure Figure. Disclosures No relevant conflicts of interest to declare.

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Using Lean Six Sigma to Develop a Patient Centered Medical Home for Adults with Sickle Cell Disease

Blood ◽

10.1182/blood-2019-131117 ◽

2019 ◽

Vol 134 (Supplement_1) ◽

pp. 3408-3408

Author(s):

Shirley Johnson ◽

Sarah Hartigan ◽

Emily Holt ◽

Daniel Sop ◽

Chantal McHenry ◽

...

Keyword(s):

Sickle Cell Disease ◽

Length Of Stay ◽

Sickle Cell ◽

Six Sigma ◽

Medical Home ◽

Lean Six Sigma ◽

Patient Centered Medical Home ◽

Target Area ◽

Cell Disease ◽

Patient Centered

Background: Adults with sickle cell disease (SCD) suffer poor quality, disparities, higher utilization and mortality, and unmet medical need. Thus, in 2017 Virginia Commonwealth University Health (VCU) used pilot results and axioms of the Patient-Centered Medical Home (PCMH) and Lean Six Sigma quality improvement to build an Adult SCD Medical Home. Methods and Results: VCU funded the program in October 2017. We implemented it over the next fifteen months. We first used a Six Sigma QI cycle called DMAIC (Define, Measure, Analyze, Improve and Control). Define: we defined three improvement targets in year one: inpatient, emergency department (ED), and ambulatory care. Behavioral health, program evaluation, ambulatory clinical policies, and pediatric to adult transition were added in year two. We identified ourselves or recruited hospital partners as champions/leaders for each care target area. Each formed a multidisciplinary implementation team. The inpatient care team actually preceded Medical Home funding. Where feasible, each team conducted PDSA cycles to test and improve best practices or metrics. Measure: we ranked 567 adult SCD patients based on their CY 2017 30-day readmissions, length of stay, 3-day ED returns, ED discharges, inpatient days and discharges, outpatient visits, ED use, and charges. Each team also developed metrics. Analyze: The top 50 highest utilizers by charges were targeted for intervention. Improve: We aimed for six 12-month intervention patient results: 1) reduce readmissions by 15%; 2) reduce average length of stay by 1.5 days; 3) reduce charges by 15%; 4) improve compliance with SCD inpatient guidelines; 5) improve quality, safety, and financial reporting; 6) improve patient experience. Leaders also used Six Sigma tools weekly to oversee teams, identify resources, plan, and hire staff: for example, we ranked the urgency of steps using "Now, Later, Latest" process charts, and documented progress using "Quick Wins" communication logs. Control: Processes were continuously amended. Stakeholders met and supported us monthly to quarterly. We distributed an annual report. Metric results are presented in a separate abstract. Conclusion: Lean Six Sigma QI principles were effective for developing and implementing an adult SCD medical home. We believe the above processes could be replicated elsewhere. Figure Disclosures Lipato: Novartis: Honoraria. Smith:Novartis: Consultancy, Honoraria.

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