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![Table 1 : Where SCD is found [45].](profile/Oluwatoyin-Ilesanmi/publication/313141825/figure/tbl1/AS:644683340447747@1530715894860/Where-SCD-is-found-45_Q320.jpg)
Painless and painful crises are common phenomena in sickle cell crises. People with Sickle Cell Disorder (SCD) do experience both chronic and acute pain throughout life. The painful crisis is unpleasant with wide variation in intensity, quality, duration and persistence. It accounts for over 60% of hospital admissions in any given year of persons a...
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Context 1
... categorization justifies Bonica's bio- psychosocial model of chronic pain which stipulates multidisciplinary evaluation and care for the complex, multidimensional nature of chronic episodic vaso-occlusive crises among SCD patients. This is to be provided by specialists such as psychologists, genetic counsellors, paediatricians, physicians, haematologists, obstetricians, orthopaedic surgeons, urologists and nurses (Figure 4). The training, dedication and experience of above members of the team can make a significant difference to quality of lives and survival. ...
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Problem
Sickle cell disease imposes complex demands on the lives of affected children and their families. In recent years, several studies have appraised the burden of care on parents of children with SCD in different parts of the world. This study explored the experiences of parents of children with SCD in a metropolis in Ghana, using the ABCX fam...
Sickle cell disease (SCD) is an inherited disorder that impairs red blood cells (RBCs) and disrupts the delivery of oxygen to tissues. There is currently no cure. Symptoms can appear as early as six months of age and include anemia, acute episodes of pain, swelling, infections, delayed growth, and vision problems. A growing number of therapies are...
Citations
... This assertion is supported by reports of more females reporting various illnesses at health institutions than males. 32 Again, more than half, 61% (122/200), of the respondents had less than ¢1000.00 as their combined monthly household income. ...
Background and Aims
Pneumococcal infection prophylaxis (PIP) is necessary for children with sickle cell disease (SCD) due to the enhanced risk of pneumococcal infections and associated mortalities. PIP measures include periodic administration of pneumococcal conjugate vaccine (PCV), twice‐daily administration of phenoxymethylpenicillin tablets, and nonpharmacological measures. This work assessed the attitude, knowledge, and perception of parents of SCD children on PIP, how parents obtain phenoxymethylpenicillin, and their preference for PIP.
Methods
This prospective cross‐sectional study involved 200 parents of SCD children between 2 and 12 years old seeking medical care at the SCD clinic of the Komfo Anokye Teaching Hospital, Ghana. Infants involved had hemoglobin SS, SC, or S‐βthal. A survey questionnaire (written) was administered to gather and interpret the data using Statistical Package for Social Sciences version 25 software.
Results
Out of 200 respondents in this study, 12% knew vaccination could prevent pneumococcal disease, but only 4% had heard about PCV, 96% had heard about phenoxymethylpenicillin tablets, and 40% knew it could prevent it. Although phenoxymethylpenicillin is reimbursed on national insurance, 87% obtained the tablets from outside the hospital with cash, whereas 12% obtained the tablets from the hospital either on insurance or with cash. About 38% mentioned that they had discontinued treatment with tablets due to intentional withdrawal, lack of funds, noncompliant children, and running out of medicine. All but 2% of respondents said they would prefer vaccines to tablets.
Conclusion
There is a significant shortfall in knowledge, attitude, and perception of parents of SCD children concerning PIP, which warrants education and awareness creation on PIP in sickle cell clinics to ensure optimum clinical and health outcomes and reduce morbidity and mortality related to such infections.
... Males predominated in the present study as similarly documented in other studies in Nigeria [10,[15][16][17]19,20], Malawi, [14] India [3,21] Iraq [18] and Barbados [22]. Although SCD is an autosomal recessive disorder and as such not related to gender, Gladwin et al. [23] and Ilesanmi [24] in their studies showed that nitric oxide was found more in females than males during both steady state and crisis which thus indicates that males could be more prone to crisis and attendant complications. ...
Introduction: Sickle cell disease, an autosomal recessive genetic disorder is characterized by chronic haemolytic anaemia often leading to life-threatening events triggered by acute sickling of red blood cells and microvascular occlusion resulting in frequent admissions. Aim: To determine the prevalence, pattern of disease and outcome of children with sickle cell disease admitted at a private health facility in southern Nigeria. Study Design: A retrospective study. Place and Duration of Study: Study was carried out at a private paediatric hospital in Port Harcourt, Rivers State over a 1-year period. Methodology: Data was retrieved from the hospitals’ Health Management System. Information obtained were age, sex, diagnosis, indication for transfusion if any, number and types of transfusions, duration of admission, mode of payment of bills and outcome. Results: Out of 1597 admissions, 59 were children with sickle cell disease giving a prevalence of 3.7%. Males predominated with a Male:Female ratio of 1.7:1, majority were £ 5 years (50.8%) and had insurance (86.4%). Most were admitted during the rainy season (61.0%) and had duration of stay of 1 – 5 days (74.6%). Commonest diseases among these children were sepsis (69.5%), vaso-occlusive crises (52.5%), malaria (52.5%) and severe anaemia/hyper-haemolytic crisis (30.5%). Of the 35.6% who received blood transfusion, majority received sedimented cells (81.0%), were transfused once (71.4%) with majorly blood group O Rhesus D Positive blood (44.8%). One child died with mortality rate of 1.7%. Vaso-occlusive crisis and tonsillitis were significantly observed more in older children ³ 12 years whereas there was no statistically significant association between gender and duration of stay with the pattern of disease. Conclusion: Sickle cell disease accounted for 3.7% of total admissions with a mortality rate of 1.7%. Sepsis, vaso-occlusive crisis, malaria and severe anaemia/hyper-haemolytic crisis were the commonest diagnosis. Neonatal screening, parental education, patient compliance, vaccinations, regular follow up, and comprehensive health insurance will significantly reduce morbidity and mortality in persons with Sickle cell disease.
... Interestingly, males were significantly higher in number, probably a true reflection of SCD in the community or the males might have more preponderance to having a crisis or perhaps a reflection of the proportion of males in the community. Gladwin et al. [16] and Ilesanmi [17] had implicated the antioxidant nitric oxide which was noted to be twice more available to females than males both in steady state and during crisis, suggesting that males are more prone to crises and attendant complications. Yauba et al. [18] reported a male preponderance of 54.2% in a study from the same institution that included SCD subjects in steady state and crisis who presented to our teaching hospital and a community outreach primary health-care center. ...
Introduction
Sickle cell disease (SCD) is the most common hereditary hematological disorder in Nigeria with an annual incidence of more than 100,000 new births which contributes to the high Nigerian under-five childhood morbidity and mortality. Sufferers of the disease are frequently admitted into emergency rooms for presentations and complications such as pain crisis, anemia, stroke, and acute chest syndrome, in addition to other childhood infections such as severe malaria, sepsis, and acute respiratory tract infections. The aim of the study was to describe the clinicodemographic features and morbidity and mortality patterns of children with SCD in a tertiary institution.
Methods
The study was a retrospective review of case records of children with SCD admitted with various diagnoses.
Results
Complete records of 460 patients were reviewed and this constituted 10.1% of all new admissions during the period. There were more males, 286 (62%), than females, 174 (38%). The mean age was 6.3 ± 5.1 years and 249 (54.1%) were under the age of 5 years. The most common admitting diagnosis was a pain crisis comprising 168 cases (36.5%). The mean packed cell volume was 20.6 ± 4.1 inclusive of hemoglobin SC phenotype, and 197 (42.8%) had simple top-up transfusion, while 28 (6.1%) had exchange transfusion. A total of 438 (95%) patients were discharged, 21 (4.6%) died, and the highest mortality was from severe anemia (47.6%).
Conclusion
This study describes the high burden of SCD constituting 10.1% of admissions, as well as the pattern of morbidity and mortality largely from severe anemia in the area under study.
... Study limitations include only using one mode of administration (paper). In addition, our sample was 72% male yet approximately 50% of SCD patients are female [25], and while our sample included individuals as young as age 12, the oldest patient was 50. In addition, our sample included primarily African-American participants (94%). ...
Background
Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and have been associated with increased morbidity and mortality. The Sickle Cell Pain Diary- Self Report (SCPD-S) was developed as a daily patient-reported outcome (PRO) measure primarily intended to capture the frequency and severity of SCD-related pain during and outside of a SCPC. The SCPD-S also examines the impact of the pain associated with an SCPC on other health-related quality of life concepts. The objective of this study was to investigate the content validity of the SCPD-S.
Methods
The content validation testing included 18 in-depth hybrid concept elicitation and cognitive debriefing interviews conducted with SCD patients in the US aged 12 years and older. Interviewers used a semi-structured interview guide and a think-aloud approach for the cognitive debriefing portion. All interviews were recorded, transcribed, coded and analyzed.
Results
Eighteen interviews across two rounds were conducted. Round 1 hybrid interviews ( n = 12) resulted in the expansion of the SCPD-S from 13 to 19 items. Items on the impact of an SCPC on social and recreational activities, sleep, and emotional well-being were added. Five items were significantly revised, as were three response choice sets. Round 2 hybrid interviews ( n = 6) confirmed the comprehensiveness of the revised diary, understandability of the wording, and appropriateness of the recall period and response sets. Saturation analyses specific to concept elicitation revealed that no additional interviews were needed.
Conclusions
This study provided evidence to support the content validity of the SCPD-S, a self-report daily diary. Data gathered during patient interviews indicated that the SCPD-S is a fit for purpose measure of SCD and SCPC-related pain frequency and severity and the impact of this pain on other health-related quality of life concepts including fatigue and emotional health. The numerous changes to the SCPD-S as a result of the study findings highlight the importance of the content validation process when developing a PRO measure.
... In Nigeria culture, males are likely to show courage, strength and strength during times of crisis and are expected to be the bread winners, to be leaders in their family and to endure pain [21]. This is supported by the fact that females generally report or complain more than males when they are suffering from different types of illnesses [22]. ...
Background: Sickle cell anemia is prevalent in the society with pain as the key factor affecting the life of the individuals with the disease. A large number of sickle cell patients visit the health care facilities due to episode of pain crises.
... The Incidence of SCD in Sub-Saharan African countries ranges between 1-2%, which translates into approximately 500,000 cases 5 per year. Nigeria has the highest burden of SCD in sub-Saharan Africa and in the whole world with about 1.2 million individuals affected and approximately 2% of babies born to Nigerian women have SCA and about 100,000 babies are 6,7 born annually with SCA. Sickle Cell Disease is screened in most health facilities in Nigeria using cellulose acetate haemoglobin electrophoresis in 1 alkaline medium. ...
Pattern of Haemoglobin Electrophoresis and ABO/Rh Blood Amongst Women Attending Antenatal Clinic in ATBUTH Bauchi
... It has also been suggested that females may have a higher foetal haemoglobin level as a result of partial control of foetal haemoglobin by an X-linked gene [13]. Again, beyond possible gendermediated physiological variations, females have been adjudged more responsible in managing health conditions as they are generally known to talk about issues bothering them and seek help more readily than the males [14]. ...
Aims: This study aimed at examining the oxidative stress level of sickle cell anaemia subjects using glutathione and bilirubin levels as markers as well as the red cell parameters. Study Design: Case-control study. Place and Duration of Study: University of Calabar Teaching Hospital, Calabar-Nigeria, between August 2018 and July 2019. Methodology: Subjects comprised 45 SCA patients (27 females, 18 males; age range 10-45 years) attending clinic at University of Calabar Teaching Hospital Calabar, Nigeria and equal number of age and sex-matched control subjects with Hb AA. Blood samples were collected and analyzed by standard methods. The red cell parameters were analysed by automation using FY-Smart-1 auto haematology analyzer. Bilirubin assay was performed using the colorimetric method, while glutathione was performed by enzyme-linked immunosorbent assay technique. Results: The red blood cell count, haemoglobin concentration, and haematocrit values of SCA subjects were significantly lower (p=0.001) compared to values from control subjects, while the red cell indices and red cell distribution width values were increased in SCA subjects (p=0.001). The Total bilirubin, conjugated bilirubin and unconjugated bilirubin were significantly increased (p=0.001) among SCA subjects, while the glutathione concentration values were reduced (p=0.001) when compared to values obtained from control subjects. Conclusion: SCA subjects have marked red cell size variation, lymphocytosis and thrombocytosis. The haemolytic events that occur in sickle cell anaemia results in glutathione depletion.
... Although investigated in other diseases including SCD in the West, Europe and Asia, and some parts of Africa, spirituality has not been widely evaluated in SCD individuals in Ghana yet. Again, although spirituality has been reported among SCD participants in previous studies Cooper-Effa et al. [11]; Harrison et al. [18], details about gender and disease type differences in the experience of spirituality have not been documented, except on gender differences in sickle cell crisis Ilesanmi [19]. Few gender differences in spirituality have been documented, but not in reference to sickle cell disease. ...
The research examined the level of spirituality, and gender and phenotype differences in spirituality among participants with sickle cell disease (SCD) in Ghana. Most recent research among different patient and healthy samples show that women are more spiritual and religious and thus cope better with chronic disease than men. However, researchers neglected to study these factors in SCD. In this study, a survey was
administered to a purposive sample of 201 Ghanaian adults with SCD to assess their level of spirituality. The Spiritual Wellbeing Scale was used to measure their spirituality. The study results showed a moderate level of spirituality. Majority of participants attested to their use of spirituality in coping with SCD. However, there was lack of evidence of a statistically significant difference between men and women, and between hemoglobin
SS and hemoglobin SC participants on the spirituality test scores. This lack of statistical significance, however, did not imply lack of research, theoretical, and practical significance too. The findings make us know that, given the chronicity of the SCD, the condition does not necessarily make sickle cell individuals highly spiritual as expected. We also conclude that participants coped with SCD using some form of spirituality. However, gender and phenotype differences did not contribute significantly to the way individuals with SCD might be expected to use spirituality in their lives. To the extent that this current result revealed exactly the degree, and differential experiences of spirituality between male and female and hemoglobin SS and hemoglobin SC phenotypes, it is an addition to previous research. The implications of the findings for cultural coping with SCD, spiritual training for patients, and further research to explore other cultural coping strategies for these Ghanaians with the
condition, have been discussed.
... Thus, a number of pain treatments focusing on psychosocial management of episodic painful vaso-occlusive crises and on emphasizing the proper manipulation of the environmental conditions, behaviors, or cognitions to effect change in response to pain. Change is believed to arise from psycho, social, supportive and validating therapeutic environment, in the traditional psychoanalytic approaches or in conflict model of psychopathology and behavioral disorder [30]. ...
Sickle cell disease is a congenital blood disorder affecting hemoglobin molecule. It leads to a rigid, sickle like shape red blood cell. Most people with sickle cell disease have severe painful episodes called vaso-occlusive crises. However, the frequency, severity, and duration of these crises vary tremendously. The pain is classified into two types, nociception pain which is intact peripheral or central nervous system and neuropathic pain which is initiated by dysfunction of the peripheral or central nervous system. Despite the pain being the most common complication of sickle cell disease, there is a lack of novel pain treatments. Pain killers including opioid have continued to be the main stay of therapy over the past several decades. A non-conventional treatments for pain were applied effectively to avoid the serious systemic side effects of the pharmaceutical pain killers.
... In Ghanaian culture, males are expected to show bravery, strength and endurance during times of crisis and are expected to be the bread winners, to be leaders in their family and to endure pain [40]. This is corroborated by the fact that females generally report or complain more than males when they are suffering from different types of illnesses [41]. ...
Background
Sickle cell disease (SCD) is of major public health concern globally, with majority of patients living in Africa. Despite its relevance, there is a dearth of research to determine the socio-demographic distribution and psychosocial impact of SCD in Ghana. The objective of this study was to examine the socio-demographic distribution and psychosocial consequences of SCD among patients in Ghana and to assess their quality of life and coping mechanisms. MethodsA cross-sectional research design was used that involved the completion of questionnaires on socio-demographic characteristics, quality of life, coping mechanisms, anxiety and depression. Participants were 387 male and female patients attending a sickle cell clinic in a public hospital. ResultsResults showed that majority of the patients were single, female, less than 39 years old and had attained secondary school level of education or less. Also, patients were more satisfied by the presence of love, friends and relatives as well as home, community and neighbourhood environment. While pains of varied nature and severity were the major reasons for attending hospital in SCD condition, going to the hospital as well as having faith in God was the most frequently reported mechanisms for coping with an unbearable SCD attacks. Results of multiple regression analysis showed that some socio-demographic and quality of life indicators had strong associations with anxiety and/or depression. Conclusions
It is recommended that a holistic intervention strategy incorporating psychosocial dimensions should be considered in the treatment and management of SCD.
