Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial

Krishnamurti, Lakshmanan; Ross, Diana; Sinha, Cynthia; Leong, Traci; Bakshi, Namita; Mittal, Nonita; Veludhandi, Divya; Pham, Anh-Phuong; Taneja, Alankrita; Gupta, Kamesh; Nwanze, Julum; Matthews, Andrea; Joshi, Saumya; Olivieri, Veronica Vazquez; Arjunan, Santhi; Okonkwo, Ifechi; Lukombo, Ines; Lane, Peter A.; Bakshi, Nitya; Loewenstein, George

doi:10.2196/14462

Cited by 18 publications

(29 citation statements)

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“…Study participants included individuals aged 18 years or older with SCD and caregivers of patients with SCD enrolled in the parent study to develop and test a web-based decision aid for SCD. 19 Participants were drawn from a convenience sample recruited from national and regional conferences, and local clinics in 2 cities. For this analysis, we used interview transcripts from the needs assessment phase in 2013 to 2014 (group 1) and from the baseline of the randomized clinical trial phase in 2015 to 2016 (group 2).…”

Section: Methodsmentioning

confidence: 99%

“…Details related to interview methods and script have been previously published. 19 We identified all transcripts that contained the terms bone marrow, BMT, stem cell, transplant, bone marrow transplant, or cure. All transcripts that met criteria were included.…”

Section: Methodsmentioning

confidence: 99%

“…Interviews used a semistructured format with probes for follow-up, but the exact wording, order, or content of questions may have differed between participants, and some concepts were explored more with some participants than others. The parent study 19 was approved by the Emory University institutional review board and University of Pittsburgh institutional review board, and participants provided informed consent. This study followed the Standards for Reporting Qualitative Research (SRQR) 20 reporting guideline for qualitative studies.…”

Section: Methodsmentioning

confidence: 99%

“…18 This study is a theoryinformed secondary analysis of a subset of interview transcripts from a parent study, a study to develop a web-based patient decision aid for therapeutic options in SCD and evaluate its effectiveness in a randomized clinical trial. 19…”

Section: Introductionmentioning

confidence: 99%

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Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease

et al. 2020

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IMPORTANCE Bone marrow transplant (BMT) is a potentially curative treatment for sickle cell disease (SCD). Patient and caregiver attitudes toward BMT for SCD and the willingness to accept risks of BMT vary, but these attitudes are not well understood.OBJECTIVE To understand patient and caregiver perceptions of and attitudes toward BMT for SCD and decision-making about BMT. DESIGN, SETTING, AND PARTICIPANTSQualitative study of interview transcripts from a convenience sample. Transcripts were from adults with SCD and caregivers of patients with SCD recruited from national and regional SCD conferences, symposia, and sickle cell clinics in 2 cities.Interview transcripts were used from the needs assessment phase to develop a patient-decision aid in 2013 to 2014 (group 1) and from the baseline point in 2015 to 2016 (group 2) of the parent trial, a randomized clinical trial of adults and caregivers of patients with SCD to evaluate the effectiveness of a patient decision aid. MAIN OUTCOMES AND MEASURESParticipant perspectives on decision-making regarding BMT for SCD. RESULTS Fifty-seven transcripts from adults with SCD and 50 transcripts from caregivers of patients with SCD were included. Median (interquartile range [IQR]) age of adults with SCD was 34 (21-50) years in group 1 and 30 (23-38) years in group 2. The median (IQR) age of caregivers was 42.5 (31-52) years in group 1 and 41 (35-46.5) years in group 2. Most transcripts from adults with SCD (75.0% in group 1 and 72.4% in group 2) and caregivers of patients with SCD (76.7% in group 1 and 85.0% in group 2) were from female participants. Bone marrow transplant was perceived as a treatment option associated with serious risks. Reported attitudes toward BMT occurred on a continuum ranging from unfavorable to favorable. Participants reported serious decisional dilemma regarding BMT for SCD. Most participants expressed interest in learning about BMT or curative treatments.CONCLUSIONS AND RELEVANCE This qualitative study found a continuum in attitudes toward BMT for SCD and highlights the complexity of decision-making in BMT for SCD. Patients and families with SCD expressed an interest in learning about BMT. Future prospective studies of patient decision-making regarding BMT, especially in the context of emerging curative and novel diseasemodifying therapies for SCD, are warranted.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease

et al. 2020

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“…Approximately 5.6% of the US population is anemic and 1.5% of the population has moderate to severe anemia [5]. Sickle cell diseases (SCD) cost more than US $1.5 billion annually in the United States [6]. Globally, blood disorders and associated complications affect more than 5 million people.…”

Section: Introductionmentioning

confidence: 99%

Noninvasive Hemoglobin Level Prediction in a Mobile Phone Environment: State of the Art Review and Recommendations

Hasan¹,

Aziz²,

Zarif³

et al. 2021

JMIR Mhealth Uhealth

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Background There is worldwide demand for an affordable hemoglobin measurement solution, which is a particularly urgent need in developing countries. The smartphone, which is the most penetrated device in both rich and resource-constrained areas, would be a suitable choice to build this solution. Consideration of a smartphone-based hemoglobin measurement tool is compelling because of the possibilities for an affordable, portable, and reliable point-of-care tool by leveraging the camera capacity, computing power, and lighting sources of the smartphone. However, several smartphone-based hemoglobin measurement techniques have encountered significant challenges with respect to data collection methods, sensor selection, signal analysis processes, and machine-learning algorithms. Therefore, a comprehensive analysis of invasive, minimally invasive, and noninvasive methods is required to recommend a hemoglobin measurement process using a smartphone device. Objective In this study, we analyzed existing invasive, minimally invasive, and noninvasive approaches for blood hemoglobin level measurement with the goal of recommending data collection techniques, signal extraction processes, feature calculation strategies, theoretical foundation, and machine-learning algorithms for developing a noninvasive hemoglobin level estimation point-of-care tool using a smartphone. Methods We explored research papers related to invasive, minimally invasive, and noninvasive hemoglobin level measurement processes. We investigated the challenges and opportunities of each technique. We compared the variation in data collection sites, biosignal processing techniques, theoretical foundations, photoplethysmogram (PPG) signal and features extraction process, machine-learning algorithms, and prediction models to calculate hemoglobin levels. This analysis was then used to recommend realistic approaches to build a smartphone-based point-of-care tool for hemoglobin measurement in a noninvasive manner. Results The fingertip area is one of the best data collection sites from the body, followed by the lower eye conjunctival area. Near-infrared (NIR) light-emitting diode (LED) light with wavelengths of 850 nm, 940 nm, and 1070 nm were identified as potential light sources to receive a hemoglobin response from living tissue. PPG signals from fingertip videos, captured under various light sources, can provide critical physiological clues. The features of PPG signals captured under 1070 nm and 850 nm NIR LED are considered to be the best signal combinations following a dual-wavelength theoretical foundation. For error metrics presentation, we recommend the mean absolute percentage error, mean squared error, correlation coefficient, and Bland-Altman plot. Conclusions We addressed the challenges of developing an affordable, portable, and reliable point-of-care tool for hemoglobin measurement using a smartphone. Leveraging the smartphone’s camera capacity, computing power, and lighting sources, we define specific recommendations for practical point-of-care solution development. We further provide recommendations to resolve several long-standing research questions, including how to capture a signal using a smartphone camera, select the best body site for signal collection, and overcome noise issues in the smartphone-captured signal. We also describe the process of extracting a signal’s features after capturing the signal based on fundamental theory. The list of machine-learning algorithms provided will be useful for processing PPG features. These recommendations should be valuable for future investigators seeking to build a reliable and affordable hemoglobin prediction model using a smartphone.

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Decision aids for people facing health treatment or screening decisions

Stacey,

Lewis,

Smith

et al. 2024

Cochrane Database of Systematic Reviews

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Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial

Cited by 18 publications

References 60 publications

Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease

Assessment of Patient and Caregiver Attitudes and Approaches to Decision-Making Regarding Bone Marrow Transplant for Sickle Cell Disease

Noninvasive Hemoglobin Level Prediction in a Mobile Phone Environment: State of the Art Review and Recommendations

Decision aids for people facing health treatment or screening decisions

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