Feasibility and Acceptability of Online Recruitment and an Online Brief Mindfulness Intervention Among Patients With Sickle Cell Disease

Ugarte, Dominic Arjuna; Hanley, Adam W.; Dusek, Jeffery A.; Martin, Sarah R.; Cumberland, William G.; Young, Sean D.

doi:10.7759/cureus.35073

Cited by 3 publications

(3 citation statements)

References 37 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…With the rise of the pandemic and other factors that may make in-person enrolling difficult, a focus on whether virtual enrollment can be successful has emerged. Our study supports the findings of others, who have found that virtual enrollment can be a successful strategy for recruiting patients with other diseases [ 15 ].…”

Section: Discussionsupporting

confidence: 92%

Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study

Nwosu,

Khan,

Masese

et al. 2024

JMIR Form Res

View full text Add to dashboard Cite

Background Hydroxyurea is an evidence-based disease-modifying therapy for sickle cell disease (SCD) but is underutilized. The Integration of Mobile Health into Sickle Cell Disease Care to Increase Hydroxyurea Utilization (meSH) multicenter study leveraged mHealth to deliver targeted interventions to patients and providers. SCD studies often underenroll; and recruitment strategies in the SCD population are not widely studied. Unanticipated events can negatively impact enrollment, making it important to study strategies that ensure adequate study accrual. Objective The goal of this study was to evaluate enrollment barriers and the impact of modified recruitment strategies among patients and providers in the meSH study in response to a global emergency. Methods Recruitment was anticipated to last 2 months for providers and 6 months for patients. The recruitment strategies used with patients and providers, new recruitment strategies, and recruitment rates were captured and compared. To document recruitment adaptations and their reasons, study staff responsible for recruitment completed an open-ended 9-item questionnaire eliciting challenges to recruitment and strategies used. Themes were extrapolated using thematic content analysis. Results Total enrollment across the 7 sites included 89 providers and 293 patients. The study acceptance rate was 85.5% (382/447) for both patients and providers. The reasons patients declined participation were most frequently a lack of time and interest in research, while providers mostly declined because of self-perceived high levels of SCD expertise, believing they did not need the intervention. Initially, recruitment involved an in-person invitation to participate during clinic visits (patients), staff meetings (providers), or within the office (providers). We identified several important recruitment challenges, including (1) lack of interest in research, (2) lack of human resources, (3) unavailable physical space for recruitment activities, and (4) lack of documentation to verify eligibility. Adaptive strategies were crucial to alleviate enrollment disruptions due to the COVID-19 pandemic. These included remote approaching and consenting (eg, telehealth, email, and telephone) for patients and providers. Additionally, for patients, recruitment was enriched by simplification of enrollment procedures (eg, directly approaching patients without a referral from the provider) and a multitouch method (ie, warm introductions with flyers, texts, and patient portal messages). We found that patient recruitment rates were similar between in-person and adapted (virtual with multitouch) approaches (167/200, 83.5% and 126/143, 88.1%, respectively; P=.23). However, for providers, recruitment was significantly higher for in-person vs remote recruitment (48/50, 96% and 41/54, 76%, respectively, P<.001). Conclusions We found that timely adaptation in recruitment strategies secured high recruitment rates using an assortment of enriched remote recruitment strategies. Flexibility in approach and reducing the burden of enrollment procedures for participants aided enrollment. It is important to continue identifying effective recruitment strategies in studies involving patients with SCD and their providers and the impact and navigation of recruitment challenges. Trial Registration ClinicalTrials.Gov NCT03380351; https://clinicaltrials.gov/study/NCT03380351 International Registered Report Identifier (IRRID) RR2-10.2196/16319

show abstract

Section: Discussionsupporting

confidence: 92%

Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study

Nwosu,

Khan,

Masese

et al. 2024

JMIR Form Res

View full text Add to dashboard Cite

show abstract

“…39 Clinical trials assessing ACT and MBSR in people living with SCD are currently still in progress. [40][41][42] As mentioned earlier, clinical trials testing whether positive affect-focused interventions may be useful for reducing opioid use among youth with SCD are needed.…”

Section: Discussionmentioning

confidence: 99%

“…ACT has been associated with reduced pain in other populations, 38 and a case study of 16‐year old with SCD saw improvement in quality of life, but did not see substantial changes in pain and did not assess for changes in opioid use 39 . Clinical trials assessing ACT and MBSR in people living with SCD are currently still in progress 40–42 . As mentioned earlier, clinical trials testing whether positive affect‐focused interventions may be useful for reducing opioid use among youth with SCD are needed.…”

Section: Discussionmentioning

confidence: 99%

Investigating home‐based opioid use among youth with sickle cell disease using ecological momentary assessment

Valrie,

Crawford,

Shipman‐Lacewell

et al. 2024

Pediatric Blood & Cancer

View full text Add to dashboard Cite

BackgroundOpioids are a common and essential treatment for acute sickle cell disease (SCD) pain. However, opioids carry well‐known adverse side effects, including potential development of hyperalgesia and nociplastic pain. We characterized opioid use in youth with SCD using ecological momentary assessment (EMA) data, and investigated the relationships between home‐based opioid use, pain, and a range of biopsychosocial factors.MethodEighty‐eight youth with SCD (aged 8–17 years) completed EMAs assessing home‐based opioid use, pain, and related factors. Analyses consisted of descriptive and multilevel logistic regression to predict daily home opioid use.ResultsYouth averaged 3.64 weeks of EMAs. Approximately 35% of the sample (n = 31) took an opioid during the EMA period, and used them on only 24% of reported pain days. Youth who took opioids reported a higher percentage of pain days (t = −2.67, p < .05) and mean pain severity scores (t = −2.30, p < .05) than youth who did not take opioids. Multilevel logistic regression analyses indicated that high daily pain severity (odds ratio [OR] = 1.02, p < .01), older age (OR = 1.324, p < .01), and low positive affect (OR = 0.91, p < .01) were each related to an increased likelihood of opioid use.ConclusionYouth with SCD take opioids appropriately in response to their pain, based on daily self‐report. Beyond daily pain severity, age, and daily variation in positive affect were related to home‐based opioid use. This suggests that behavioral interventions that enhance positive affect may promote reduced opioid use among youth with SCD.

show abstract

Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study (Preprint)

Nwosu¹,

Khan²,

Masese³

et al. 2023

Preprint

View full text Add to dashboard Cite

BACKGROUND Hydroxyurea is an evidence-based disease-modifying therapy for sickle cell disease (SCD) but is underutilized. The Integration of Mobile Health (mHealth) into Sickle Cell Disease Care to Increase Hydroxyurea Utilization (meSH) multi-center study leveraged mHealth to deliver targeted interventions to patients and providers to foster hydroxyurea utilization. SCD studies often under enroll, and unanticipated events can negatively impact enrollment, making it important to study strategies that ensure adequate study accrual. OBJECTIVE This paper describes the challenges and adaptive strategies used to secure participant enrollment in the meSH study. Adaptive strategies were crucial to alleviate enrollment disruptions due to the COVID-19 pandemic. METHODS Recruitment was anticipated to last 2 months for providers and 6 months for patients. The recruitment strategies used with patients and providers, new recruitment strategies, and recruitment rates were captured and compared. To document recruitment adaptations and their reasons, study staff responsible for recruitment completed an open-ended 9-item questionnaire eliciting challenges to recruitment and strategies used. Themes were extrapolated using thematic content analysis. RESULTS In total, 89 providers and 293 patients enrolled across seven sites. Recruitment duration ranged from 2 to 7 for providers and 7 to 10 months for patients across sites. The study acceptance rate was 86% for both patients and providers. Patients mostly declined participation due to a lack of time and interest in research. Providers declined because of self-perceived high levels of SCD expertise, believing they did not need the intervention. Initially, recruitment involved an in-person invitation to participate during clinic visits (patients and providers), staff meetings (providers), or within the office (providers). Recruitment challenge themes included: 1) lack of interest in research, 2) lack of human resources (e.g., shortage of study staff due to layoffs or resignations during the COVID-19 pandemic), 3) unavailable physical space for recruitment activities due to in-person activity restrictions, and 4) lack of documentation to verify eligibility. Because recruitment was slower than projected, strategies were adapted to include remote approaching and consenting (e.g., telehealth, email and telephone) for patients and providers. Additionally, for patients, recruitment was enriched by simplification of enrollment procedures (e.g., directly approaching patients without a referral from the provider) and a multi-touch method (i.e., warm introductions with flyers, text and patient portal messages). For patients, recruitment rates were similar between the in-person and adapted (virtual with multi-touch) approaches (83.5% and 88.1%, respectively, P=0.23). For providers, however, recruitment rate was higher for in-person versus remote recruitment (96.0% and 70.7%, respectively, P<.001). CONCLUSIONS The adapted recruitment strategies, implemented in response to the COVID-19 pandemic, secured a high recruitment rate, which was maintained among patients with SCD using an assortment of enriched remote recruitment strategies. For provider participants, e-mail-alone recruitment methods may not be sufficient to secure study enrollment. INTERNATIONAL REGISTERED REPORT RR2-10.2196/16319

show abstract

Feasibility and Acceptability of Online Recruitment and an Online Brief Mindfulness Intervention Among Patients With Sickle Cell Disease

Cited by 3 publications

References 37 publications

Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study

Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study

Investigating home‐based opioid use among youth with sickle cell disease using ecological momentary assessment

Recruitment Strategies in the Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization Study (meSH): Multicenter Survey Study (Preprint)

Contact Info

Product

Resources

About