Emergency management of SCD pain crises: Current practices and playing variables

Almuqamam, Mohamed; Frias, J. Diaz –; Malik, Mohammad; Mohamed, Ali Abdulnabi; Sedrak, Aziza

doi:10.1016/j.phoj.2018.06.002

Cited by 5 publications

(7 citation statements)

References 7 publications

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“…This means that there was a delay in relieving pain which compromised the quality of life in these children. These ndings are consistent with (42) who found that patients with SCD experienced signi cant delays in seeking medication on pain relief. Unrelieved pain may prolong the stress response and adversely affect the recovery process (43).…”

Section: Discussionsupporting

confidence: 91%

MANAGEMENT Practices for Children IN Sickle Cell Crisis in Selected Hospitals in Northern Malawi.

Kumwenda,

Phiri,

Mpasa

2024

Preprint

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Background Sickle cell crisis is a common complication of Sickle Cell Disease (SCD) that is responsible for frequent hospitalizations among children. The condition carries a mortality rate of 50% − 90%. If appropriate care is not rendered, it can lead to early child mortality. The aim of the study was to assess the quality of care provided to hospitalized children in sickle cell crisis in selected hospitals in Northern Malawi. Methods A quantitative descriptive cross-sectional design was used to assess the quality of care provided to hospitalized children in sickle cell crisis at a tertiary, district and mission hospitals in the Northern Region of Malawi. Data was collected from files of 124 children admitted in sickle cell crisis from 2019 to 2021 using a checklist that was developed from WHO, National Heart, Lung, and Blood Institute (NHLBI), and Queens Paediatric Guidelines for the management of SCD while analysis was done using SPSS version 20. Results The results showed suboptimal quality of care as most children did not receive the recommended interventions such as oxygen therapy, intravenous fluids, the correct amount of intravenous fluids, and timely pain relief medication as stipulated by the guidelines for the management of SCD. Conclusions The study gave some insights regarding quality of care for children in sickle cell crisis in the Region. It can, therefore, be concluded that ensuring the availability and accessibility of SCD management guidelines, pain assessment tools in Paediatric care settings would improve clinical practice.

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Section: Discussionsupporting

confidence: 91%

MANAGEMENT Practices for Children IN Sickle Cell Crisis in Selected Hospitals in Northern Malawi.

Kumwenda,

Phiri,

Mpasa

2024

Preprint

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“…This often leads to mistrust between patients and health care providers [36,37]. As several studies demonstrated [38][39][40][41][42][43][44], when patients arrive in emergency departments, the lack of objective hematological findings and little awareness of those findings make health care providers suspicious of the veracity of a VOC. This distrust makes the SCD community infamously difficult to recruit in research initiatives and hard to engage in interactions with medical providers, and the distrust also lowers adherence to medical recommendations [36,[45][46][47][48].…”

Section: The Case Of Sickle Cell Disease: One Of the World's Most Neg...mentioning

confidence: 99%

Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements

Issom¹,

Henriksen²,

Woldaregay³

et al. 2020

JMIR Hum Factors

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Background Sickle cell disease (SCD) is a hematological genetic disease affecting over 25 million people worldwide. The main clinical manifestations of SCD, hemolytic anemia and vaso-occlusion, lead to chronic pain and organ damages. With recent advances in childhood care, high-income countries have seen SCD drift from a disease of early childhood mortality to a neglected chronic disease of adulthood. In particular, coordinated, preventive, and comprehensive care for adults with SCD is largely underresourced. Consequently, patients are left to self-manage. Mobile health (mHealth) apps for chronic disease self-management are now flooding app stores. However, evidence remains unclear about their effectiveness, and the literature indicates low user engagement and poor adoption rates. Finally, few apps have been developed for people with SCD and none encompasses their numerous and complex self-care management needs. Objective This study aimed to identify factors that may influence the long-term engagement and user adoption of mHealth among the particularly isolated community of adult patients with SCD living in low-prevalence, high-income countries. Methods Semistructured interviews were conducted. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic analysis. Analysis was informed by the Braun and Clarke framework and mapped to the COM-B model (capability, opportunity, motivation, and behavior). Results were classified into high-level functional requirements (FRs) and nonfunctional requirements (NFRs) to guide the development of future mHealth interventions. Results Overall, 6 males and 4 females were interviewed (aged between 21 and 55 years). Thirty FRs and 31 NFRs were extracted from the analysis. Most participants (8/10) were concerned about increasing their physical capabilities being able to stop pain symptoms quickly. Regarding the psychological capability aspects, all interviewees desired to receive trustworthy feedback on their self-care management practices. About their physical opportunities, most (7/10) expressed a strong desire to receive alerts when they would reach their own physiological limitations (ie, during physical activity). Concerning social opportunity, most (9/10) reported wanting to learn about the self-care practices of other patients. Relating to motivational aspects, many interviewees (6/10) stressed their need to learn how to avoid the symptoms and live as normal a life as possible. Finally, NFRs included inconspicuousness and customizability of user experience, automatic data collection, data shareability, and data privacy. Conclusions Our findings suggest that motivation and engagement with mHealth technologies among the studied population could be increased by providing features that clearly benefit them. Self-management support and self-care decision aid are patients’ major demands. As the complexity of SCD self-management requires a high cognitive load, pervasive health technologies such as wearable sensors, implantable devices, or inconspicuous conversational user interfaces should be explored to ease it. Some of the required technologies already exist but must be integrated, bundled, adapted, or improved to meet the specific needs of people with SCD.

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“…The gene frequency of SCD is highest in West African countries, with 25-30% of people being carriers of HbS compared to 1 in 400 African Americans, and it is variable in European populations [6]. Severe morbidity and mortality ensue when SCD is not diagnosed and treated promptly [7]. In Nigeria, the overall prevalence of the 2 common variances of SCD are HbSS (2.14%) and HbSC (0.14%) [8].…”

Section: Introductionmentioning

confidence: 99%

Clients’ satisfaction with pain management by healthcare providers during sickle cell crisis in selected health facilities in Ogun State Nigeria – a cross sectional study

Faremi,

Onitiju,

Olagunju

et al. 2023

ppiel

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Introduction: Vaso-occlusive crises leading to pain are the hallmark of sickle cell disease (SCD). The aim of the study is to assess satisfaction of client with pain management strategies adopted by healthcare providers in the management of sickle cell crises. Material and methods: This quantitative cross-sectional study was conducted by employing a multi-stage sampling technique in selecting the 2 SCD clinics across tertiary hospitals. In all, 114 clients who met the inclusion criteria participated in the study. Results: The majority of the participants were of ages 18 years to 20 years, mostly students with SS genotype. A high proportion of participants (52.0%) experienced a mild level of pain, while 2% reported severe pain within 6 months prior the study. The majority (67.5%) of the participants were placed on pharmacological strategies. Many of the participants (95.0%) were very satisfied with pain management strategy given to them. There is no statistically significant difference between the level of pain experienced by the participant and the administered pain management (F(2,111) = 0.591, p = 0.92). Also, there is no statistically significant difference between the client's pain-comfort and healthcare provider's methods of pain management during SCD crisis (F(2,111) = 0.485, p = 0.422). It is expedient to set up a more detailed pain assessment tool for the evaluation of the level of pain of SCD patients. Conclusions: The study concluded that pharmacological and non-pharmacological approaches can be further adopted by healthcare providers to aid in the delivery of more efficient pain management to SCD clients so as to boost the level of satisfaction of SCD patients.

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Emergency management of SCD pain crises: Current practices and playing variables

Cited by 5 publications

References 7 publications

MANAGEMENT Practices for Children IN Sickle Cell Crisis in Selected Hospitals in Northern Malawi.

MANAGEMENT Practices for Children IN Sickle Cell Crisis in Selected Hospitals in Northern Malawi.

Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements

Clients’ satisfaction with pain management by healthcare providers during sickle cell crisis in selected health facilities in Ogun State Nigeria – a cross sectional study

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