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1.
Soins Pediatr Pueric ; 41(314): 35-41, 2020.
Artigo em Francês | MEDLINE | ID: mdl-32771206

RESUMO

The effect of a standardized musical intervention for adolescents with sickle cell disease was studied. Two groups were evaluated using the visual analog scale of pain and the anxiety-state inventory before and after a standardized musical intervention or breathing intervention. A significant decrease in scores was observed, most notably for the group benefiting from the standardized musical intervention. This intervention could be integrated into the overall management of adolescents with sickle cell disease.


Assuntos
Anemia Falciforme/terapia , Ansiedade/prevenção & controle , Musicoterapia , Manejo da Dor/métodos , Dor/prevenção & controle , Adolescente , Anemia Falciforme/complicações , Anemia Falciforme/psicologia , Ansiedade/etiologia , Humanos , Dor/etiologia , Resultado do Tratamento
2.
Ann Hematol ; 99(9): 2057-2064, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32458066

RESUMO

Sleep disturbance is common among children with sickle cell disease (SCD) and is related to neurocognitive difficulties. However, research on sleep disturbances and related variables among adults with SCD is extremely limited. The present study examined the relationship between sleep, executive functioning, and emotional functioning among 62 adults (29 females; M age = 32 years, SD = 7.79) with SCD preparing to undergo a stem cell transplant. Participants were administered a neurocognitive evaluation that included objective and subjective measures of executive functioning, and they completed PROMIS self-report measures of anxiety, depression, and pain intensity. Results showed that about 17% of participants endorsed clinically significant sleep disruptions, while 16.1% and 8% endorsed clinically significant symptoms of anxiety and depression, respectively. Sleep disturbance in these adults was not significantly correlated with objective or subjective measures of executive functioning. Moreover, anxiety, but not depression, was a significant mediator between self-reported sleep difficulties and both objective and subjective measures of executive functioning while controlling for pain intensity. Future research on sleep interventions will be essential for ameliorating the effects of sleep disturbance on executive functioning and anxiety among adults with SCD.


Assuntos
Anemia Falciforme/psicologia , Emoções/fisiologia , Função Executiva/fisiologia , Transtornos do Sono-Vigília/psicologia , Adulto , Anemia Falciforme/diagnóstico , Anemia Falciforme/epidemiologia , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Ansiedade/psicologia , Estudos Transversais , Depressão/diagnóstico , Depressão/epidemiologia , Depressão/psicologia , Feminino , Transplante de Células-Tronco Hematopoéticas/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/epidemiologia , Adulto Jovem
3.
PLoS One ; 15(2): e0229710, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32101564

RESUMO

Patients with sickle cell disease (SCD) have access to fewer health care resources and therapies compared to other diseases, which contributes to increased morbidity and health care utilization. We compared health care utilization (inpatient hospital days, emergency care visits) and health care-related costs between SCD adults that underwent hematopoietic stem cell transplantation (HSCT) using a nonmyeloblative conditioning regimen versus those referred for HSCT but did not proceed due to lack of an HLA-matched sibling donor, denial by insurance, red blood cell antibodies to the potential donor, or declining further evaluation. Between 8/2011 and 4/2016, 83 SCD patients were referred for allogeneic HSCT and 16 underwent the procedure. The HSCT and non-HSCT groups were similar by age, sex, prior SCD-related therapy and complications. Compared to pre HSCT, significantly fewer inpatient hospital days (median of 1 versus 22 days, P = 0.003) and emergency care visits (median of 1 versus 4 visits, P = 0.04) were observed by the 2nd year post-HSCT. Similar results were observed in comparison to the standard-of-care group (median of 1 versus 12 hospital days, P = 0.002; median of 1 versus 3 emergency visits, P = 0.03). Lower health care costs were observed by the 2nd year post-HSCT (median of $16,281 versus $64,634 pre-HSCT (P = 0.01) and versus $54,082 in the standard-of-care group (P = 0.05). A median reduction of -$20,833/patient/year (IQR, -$67,078-+$4,442/patient/year) in health care costs compared to pre-HSCT was observed in the 2nd year post-HSCT. In conclusion, allogeneic HSCT leads to improvements in health care utilization and costs compared to standard-of-care therapy in high-risk SCD adults.


Assuntos
Anemia Falciforme/economia , Anemia Falciforme/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adulto , Feminino , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/economia , Humanos , Masculino , Irmãos , Doadores de Tecidos , Condicionamento Pré-Transplante/economia , Condicionamento Pré-Transplante/métodos , Transplante Homólogo/efeitos adversos , Transplante Homólogo/economia , Transplantes/economia , Adulto Jovem
4.
Niger J Clin Pract ; 23(2): 219-225, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32031097

RESUMO

Objective: Hopelessness is the most significant predictor of suicide among the clinical and nonclinical populations. The aim of this study is to examine the correlates and predictors of hopelessness among Nigerian adults with sickle cell disease (SCD). Subjects and Methods: Adopting a convenience sampling technique, 123 clinically stable SCD adult patients were selected from three hematological centers in Southwestern Nigeria. They completed a sociodemographic and illness-related questionnaire in addition to the Beck Hopelessness Scale (BHS), the Hospital Anxiety and Depression Scale (HADS), the 10-item Connor-Davidson Resilience Scale (CDRISC-10), and the Sickle Cell Self-Efficacy Scale (SCSES). The relationship between hopelessness and the other study variables was examined using correlational analysis (Spearman's rho). The extent of the variance these measures contributed to the score on the BHS was evaluated applying hierarchical regression analysis. The level of statistical significance was set at P value less than 0.05. Results: The mean age (years) of the participants was 25.38 ± 6.73 years. There were 68 (55.3%) females. The mean BHS score was 2.89 ± 3.30. Hopelessness had modest negative correlations with hemoglobin concentration (r = -0.366, P < 0.001), resilience (r = -0.483, P < 0.001), and self-efficacy (r = -0.318, P < 0.001), while modest positive correlations were observed with the HADS-Anxiety (r = 0.351, P < 0.001) and Depression (r = 0.530, P < 0.001) subscales. The hemoglobin concentration, resilience, and depression were the main predictors of hopelessness. Conclusion: Hopelessness among clinically stable Nigerian adults with SCD is significantly influenced by hemoglobin concentration and psychological variables (resilience and depression). These variables can serve as templates for the development of health promotion strategies (medical and psychological) aimed specifically at the amelioration of the severity of hopelessness within this population.


Assuntos
Anemia Falciforme/psicologia , Depressão/psicologia , Transtorno Depressivo/psicologia , Resiliência Psicológica , Autoimagem , Suicídio/psicologia , Adulto , Anemia Falciforme/complicações , Depressão/etiologia , Transtorno Depressivo/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nigéria , Escalas de Graduação Psiquiátrica , Psicometria/métodos , Inquéritos e Questionários
5.
Qual Life Res ; 29(6): 1533-1547, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31933113

RESUMO

PURPOSE: Patients with sickle cell disease (SCD) may experience sickle cell-related pain crises, also referred to as vaso-occlusive crises (VOCs), which are a substantial cause of morbidity and mortality. The study explored how VOC frequency and severity impacts health-related quality of life (HRQoL) and work productivity. METHODS: Three hundred and three adults with SCD who completed an online survey were included in the analysis. Patients answered questions regarding their experience with SCD and VOCs, and completed the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Workplace Productivity and Activity Impairment: Specific Health Problem (WPAI:SHP). Differences in ASCQ-Me and WPAI:SHP domains were assessed according to VOC frequency and severity. RESULTS: Nearly half of the patient sample (47.2%) experienced ≥ 4 VOCs in the past 12 months. The most commonly reported barriers to receiving care for SCD included discrimination by or trouble trusting healthcare professionals (39.6%, 33.3%, respectively), limited access to treatment centers (38.9%), and difficulty affording services (29.4%). Patients with more frequent VOCs reported greater impacts on emotion, social functioning, stiffness, sleep and pain, and greater absenteeism, overall productivity loss, and activity impairment than patients with less frequent VOCs (P < 0.05). Significant impacts on HRQoL and work productivity were also observed when stratifying by VOC severity (P < 0.05 for all ASCQ-Me and WPAI domains, except for presenteeism). CONCLUSIONS: Results from the survey indicated that patients with SCD who had more frequent or severe VOCs experienced deficits in multiple domains of HRQoL and work productivity. Future research should examine the longitudinal relationship between these outcomes.


Assuntos
Anemia Falciforme/psicologia , Dor/etiologia , Qualidade de Vida/psicologia , Desempenho Profissional/normas , Adulto , Feminino , Humanos , Masculino , Inquéritos e Questionários
6.
Acta Haematol ; 143(2): 163-175, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31307033

RESUMO

BACKGROUND/AIMS: We surveyed sickle cell disease (SCD) patients who transitioned from pediatric care at Texas Children's Hematology Center (TCHC) to adult care to determine the characteristics of patients with an adult SCD provider, continuation rates of pre-transition therapies, and patient perceptions of the transition process. METHODS: A cross-sectional study was conducted by telephone survey of 44 young adults with SCD, aged 19-29 years, who transitioned from TCHC to adult care within the last 15 years. RESULTS: Findings of the 23-item questionnaire revealed that transitioned patients with current adult providers (68.2%) were more likely to have seen a provider within 6 months of transition (p = 0.023) and to have been on hydroxyurea and/or monthly blood transfusions pre-transition (p = 0.021) than transitioned patients without a provider; 83% of patients on pre-transition hydroxyurea reported continuing hydroxyurea after transition. Transition challenges included inadequate preparation, difficulty finding knowledgeable adult providers, and lack of healthcare insurance/coverage. CONCLUSION: Transition to adult providers is predicted by establishing care with an adult SCD provider within 6 months of transition and being on pre-transition disease-modifying therapy. Transition may be improved if pediatric hematology centers assist and verify adult provider contact within 6 months of transition and engage patients of all disease severity during transition.


Assuntos
Anemia Falciforme/patologia , Adulto , Anemia Falciforme/tratamento farmacológico , Anemia Falciforme/economia , Anemia Falciforme/psicologia , Transfusão de Sangue , Estudos Transversais , Feminino , Humanos , Hidroxiureia/uso terapêutico , Cobertura do Seguro , Masculino , Inquéritos e Questionários , Adulto Jovem
7.
Am J Hosp Palliat Care ; 37(2): 123-128, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31394904

RESUMO

OBJECTIVES: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges. DESIGN: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit. RESULTS: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients' difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success. CONCLUSION: Patients' struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.


Assuntos
Afro-Americanos/psicologia , Anemia Falciforme/fisiopatologia , Anemia Falciforme/psicologia , Dor/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adulto , Anemia Falciforme/complicações , Estudos de Casos e Controles , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Medição da Dor , Qualidade de Vida
8.
Fam Community Health ; 43(1): 1-9, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31764301

RESUMO

Study objectives were to examine the relationships between physical activity, pain, and psychological distress in youth 8 to 17 years of age with sickle cell disease. Participants were 206 youth with sickle cell disease (M = 11.73 years, 54.9% female, 99.5% African American). Caregivers and youth completed a clinical psychosocial screening battery. Results revealed frequent pain (37.6%), moderate median pain intensity, and elevated median pain interference in youth. Lower caregiver-reported physical activity was associated with worse pain outcomes. Increased anxiety was also associated with worse pain outcomes. A better understanding of the relationship between physical activity/inactivity and pain will guide multifactorial treatment interventions.


Assuntos
Anemia Falciforme/complicações , Anemia Falciforme/psicologia , Exercício Físico/psicologia , Dor/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino
9.
PLoS One ; 14(11): e0223043, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31738762

RESUMO

BACKGROUND: Health-related quality of life (HRQL) and economic burden are important issues for people with sickle cell disease (SCD) owing to better survival due to medical advances. Preference-based or utility information is necessary to make informed economic decisions on treatment and alternative therapies. This study aimed to assess preference-based measures of HRQL in sickle cell patients. METHODS AND FINDINGS: Data were collected from two SCD outpatient clinics in Ibadan, Nigeria. A standard algorithm was used to derive utility scores, and measure SF-6D from the SF-36. A multivariate regression model was used to assess predictors and their impact. A combination of socio-demographic, bio-physiological and psychosocial variables predicted utility score in people with SCD. Socio-demographic and bio-physiological factors explained 7.5% and 17.9% of the variance respectively, while psychosocial factors explained 4.9%. Women had lower utility scores with a small effect size (d = 0.17). Utility score increased with level of education but decreased with age, anxiety, frequency of pain episodes and number of co-morbidities. CONCLUSIONS: Utility score in SCD was low indicating a substantial impact of the disease on HRQL of patients and the value they place on their health state due to the limitations they experienced. Interventions should include both clinical and psychosocial approach to help in improving their quality of life of the patients.


Assuntos
Anemia Falciforme/psicologia , Qualidade de Vida , Adolescente , Adulto , Anemia Falciforme/fisiopatologia , Estudos Transversais , Feminino , Humanos , Masculino , Análise Multivariada , Nigéria , Psicologia , Qualidade de Vida/psicologia , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
10.
PLoS One ; 14(11): e0224886, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31710639

RESUMO

PURPOSE: Frequencies of single nucleotide polymorphisms (SNPs) from pain related candidate genes are available for individuals with sickle cell disease (SCD). One of those genes, the arginine vasopressin receptor 1A gene (AVPR1A) and one of its SNPs, rs10877969, has been associated with pain and disability in other pain populations. In patients with SCD, clinical factors such as pain and stress have been associated with increased health care utilization, but it is not known if the presence of the AVPR1A SNP plays a role in this observation. The study purpose was to explore the relationships between rs10877969 and self-reported pain, stress, and acute care utilization events among individuals with SCD. METHODS: In a cross-sectional investigation of outpatients with SCD, participants completed PAINReportIt®, a computerized pain measure, to describe their pain experience and contributed blood or saliva samples for genetic analysis. We extracted emergency department and acute care utilization from medical records. RESULTS: The SNP genotype frequencies (%) for this sample were CC 30 (28%), CT 44 (41%), TT 33 (31%). Acute care utilization and stress as an aggravator of pain were significantly associated with the rs10877969 genotype (p = .02 and p = .002, respectively). The CT genotype had the highest mean utilization and CC genotype was associated with not citing stress as a pain aggravator. Chronic pain was not associated with rs10877969 (p = .41). CONCLUSION: This study shows that rs10877969 is related to indicators of stress and acute pain. Further research is recommended with other measures of stress and acute pain.


Assuntos
Anemia Falciforme/genética , Anemia Falciforme/psicologia , Predisposição Genética para Doença , Dor/genética , Polimorfismo de Nucleotídeo Único/genética , Estresse Psicológico/complicações , Vasopressinas/genética , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor/complicações , Adulto Jovem
11.
Rev Bras Enferm ; 72(6): 1554-1561, 2019.
Artigo em Inglês, Português | MEDLINE | ID: mdl-31644744

RESUMO

OBJECTIVE: To understand spirituality/religiosity as experienced by people with sickle cell disease, and its influence on coping with the disease. METHOD: A qualitative, descriptive, and exploratory study conducted in the State of Bahia. Twenty-nine respondents participated in semi-structured interviews. Content analysis was used to analyze the empirical material. RESULTS: Individuals with sickle cell disease experience spirituality/religiosity motivated by their hope for a miracle, and fear of death; among their rites are: reading religious materials, individual and group prayer, and attendance at worship services. The effects on their health include: comfort by means of coping by comparing two evils, anxiety relief, social support, and lifestyle changes; however, spirituality/religiosity may be impaired. FINAL CONSIDERATIONS: This study demonstrates the need to qualify health professionals to address spiritual issues of these individuals during illness, with the aims of diagnosing suffering and anguish, and providing care, comfort and strengthening of the spiritual bonds of these individuals.


Assuntos
Anemia Falciforme/psicologia , Esperança , Religião e Psicologia , Espiritualidade , Adulto , Anemia Falciforme/enfermagem , Ansiedade/psicologia , Atitude Frente a Morte , Medo , Feminino , Enfermagem Holística , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Manejo da Dor/psicologia , Pesquisa Qualitativa , Religião , Religião e Ciência , Apoio Social , Adulto Jovem
12.
J Pediatr Psychol ; 44(10): 1234-1243, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31579920

RESUMO

OBJECTIVE: Children with sickle cell disease (SCD) are at increased risk for cognitive impairment as a result in part from biological characteristics of the disease; however, limited research has explored possible social and contextual factors associated with risk for cognitive problems. The primary aim of the present study was to examine the relation between children's cognitive functioning and responsive parenting, a potentially important contextual factor in children with SCD, accounting for family socioeconomic disadvantage, child disease severity, and caregivers' perceived stress. METHODS: Forty-eight children completed standardized cognitive assessments and caregivers provided self-reports of general and disease-related stress. Parent-child dyads completed a video recorded puzzle-solving task and observed parenting was quantified using two coding systems. Bivariate Pearson correlations were used to assess preliminary hypotheses, and linear multiple regression analyses were used to assess the primary hypothesis. RESULTS: Results suggested that increased levels of parental stress were related to fewer observations of responsive parenting and provided evidence of an association between children's cognitive function and responsive parenting. Specifically, increased disease-related parent stress and reduced parental use of expansive language were associated with significantly lower cognitive functioning in children with SCD. CONCLUSIONS: Findings suggest that social environmental factors along with disease characteristics are sources of risk for cognitive problems with children with SCD. Further, these findings highlight the need to develop targeted interventions for parents of children with SCD to decrease levels of stress and enhance parenting skills, with the aim improving cognitive functioning in youth.


Assuntos
Anemia Falciforme/psicologia , Cognição/fisiologia , Relações Pais-Filho , Poder Familiar/psicologia , Pais/psicologia , Estresse Psicológico/psicologia , Adolescente , Anemia Falciforme/diagnóstico , Criança , Feminino , Humanos , Idioma , Masculino
13.
Pediatr Hematol Oncol ; 36(8): 457-467, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31490092

RESUMO

Sickle cell disease (SCD) affects more than 13 million people and can have a significant impact on the quality of life (QoL) of those persons. We performed a cross-sectional study to evaluate the QoL in SCD children 8-12 years old enrolled from November 2014 to March 2016 in a large multicenter cohort study in Brazil. The PedsQL™ SCD Module was used to evaluate QoL in 412 children from six Brazilian health centers. The mean age of participants was 10.5 years and 193(46.7%) were women. The mean global score was 60.7, with a Cronbach´s alpha of 0.92. There were significant differences in socioeconomic demographics and treatments among participants at the six centers, but age, income, SCD genotype, and use of hydroxyurea did not significantly affect the QoL scores. After adjustment for all of these variables in a linear regression model, a significant difference was observed by site in global QoL score and the dimensions 'worry II'(ß0 = 20.7, p < .00), 'treatment´(ß0 = 66.8, p < .00) and communication II'(ß0 = 45.8, p < .00). These dimensions are affected by the capacity of health professionals to provide clinical and psychological support to patients. Our results suggest that QoL of this patient population varied according the health center even adjusted by sociodemographics characteristics. Additional training of health professionals in psychological and clinical support could directly reduce patient apprehension about the disease its clinical complications.


Assuntos
Anemia Falciforme/psicologia , Qualidade de Vida/psicologia , Brasil , Criança , Estudos de Coortes , Estudos Transversais , Feminino , Humanos , Masculino
14.
Dev Neuropsychol ; 44(6): 452-467, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31450996

RESUMO

Executive functions are compromised in children with sickle cell anemia. There is limited research on the development of executive functions in preschool children with sickle cell anemia and the factors that contribute to executive dysfunction. We looked at the relation between biomedical and environmental factors, including family functioning and socioeconomic status, and executive functions in 22 preschool children with sickle cell anemia. We found that family functioning was the strongest predictor of executive outcomes in young children with sickle cell anemia with no evidence for an influence of disease severity at this early stage.


Assuntos
Anemia Falciforme/diagnóstico , Função Executiva/fisiologia , Família/psicologia , Qualidade de Vida/psicologia , Meio Social , Fatores Socioeconômicos , Anemia Falciforme/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Masculino
15.
AJOB Empir Bioeth ; 10(3): 182-189, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31379268

RESUMO

Background: It is customarily perceived that in Africa, decisions around research participation may be based not only on individual reflection but also on discussions with others. Some authors have argued that such decision making is reflective of a more traditional communitarian African worldview; one critique of such a perspective is that it is lacking an empirical grounding. In this study, we explore decision making around enrollment in sickle cell genomics research in three countries in Africa, namely, Ghana, Cameroon, and Tanzania. Particularly, we focus on exploring the role of shared decision making with regard to participating in genomic studies. Results: We involved 64 participants in 15 individual interviews or in 49 focus-group discussions with research participants in rural and urban Tanzania (n = 20), Ghana (n = 30), and Cameroon (n = 14). We used a vignette to explore decision making around enrollment of children in sickle cell genomics research. Data were imported in NVivo11 and analyzed using thematic content analysis. Our findings indicate that the majority of the participants from both rural and urban settings prefer to make their own individual decisions and not consult with extended family or community leaders. Shared decision making was only considered necessary for individuals who were perceived to be in some way vulnerable. Conclusion: We found very limited support for shared decision making as the primary process for decision making about research participation. While consultation was considered important to support individual decision making, particularly when parents were perceived as vulnerable, there was no suggestion in our data that shared decision making would be a more important or valuable means of seeking consent for research participation in the African research context.


Assuntos
Anemia Falciforme/genética , Pesquisa Biomédica/ética , Tomada de Decisão Compartilhada , Consentimento Livre e Esclarecido , Anemia Falciforme/psicologia , Camarões , Criança , Estudos Transversais , Grupos Focais , Gana , Humanos , Consentimento Livre e Esclarecido/ética , Consentimento Livre e Esclarecido/psicologia , Entrevistas como Assunto , Pais , Procurador/psicologia , Tanzânia
16.
Medicina (Kaunas) ; 55(7)2019 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-31319584

RESUMO

OBJECTIVES: This study aimed to analyze and discern the differences in demographics and inpatient outcomes (length of stay (LOS), total charges, disease severity, and mortality) between depressed versus non-depressed sickle cell disease (SCD) patients. Materials and Methods: A retrospective analysis was conducted using the Nationwide Inpatient Sample (2010-2014). We identified 73,225 SCD hospitalizations and comorbid depression (6317, 8.6%) as the primary and the other diagnosis, respectively, using International Classification of Diseases (ICD)-9 codes. We used linear and logistic regression model to evaluate the changes in inpatient outcomes. RESULTS: Comorbid depression was more prevalent among middle-aged adults (11.5%), females (10.63%), and whites (12.43%). We did not find any association between income and comorbid depression among SCD patients. After adjusting for the demographic covariates, comorbid depression remained a significant risk factor for longer LOS (mean difference -1.16 days, 95% CI -1.30 to -1.03) and higher total charges (mean difference -USD5058, 95% CI -6261 to -3855) during hospitalization. SCD with comorbid depression was also significantly associated with a higher number of chronic conditions (mean difference -2.08, 95% CI -2.13 to -2.03) and 1.5 times (95% CI 1.39 to 1.63) higher odds of major severity of illness. CONCLUSION: Comorbid depression was significantly associated with longer LOS, more severity of illness, and higher hospital charges. Healthcare providers caring for adults with SCD should consider screening for and treating comorbid depression to improve the health-related quality of life.


Assuntos
Anemia Falciforme/complicações , Depressão/complicações , Avaliação de Resultados da Assistência ao Paciente , Adolescente , Adulto , Idoso , Anemia Falciforme/psicologia , Comorbidade , Depressão/psicologia , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Tempo de Internação/estatística & dados numéricos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Razão de Chances , Estudos Retrospectivos , Fatores de Risco
17.
JMIR Mhealth Uhealth ; 7(6): e8130, 2019 06 18.
Artigo em Inglês | MEDLINE | ID: mdl-31215518

RESUMO

BACKGROUND: Young people with sickle cell disease (SCD) often demonstrate low medication adherence and low motivation for effectively self-managing their condition. The growing sophistication of mobile phones and their popularity among young people render them a promising platform for increasing medication adherence. However, so far, few apps targeting SCD have been developed from research with the target population and underpinned with theory and evidence. OBJECTIVE: The aim of this study was to develop a theory-and-evidence-based medication adherence app to support children and adolescents with SCD. METHODS: The Behavior Change Wheel (BCW), a theoretically based intervention development framework, along with a review of the literature, 10 interviews with children and adolescents with SCD aged between 12 and 18 years, and consultation with experts informed app development. Thematic analysis of interviews provided relevant theoretical and evidence-based components to underpin the design and development of the app. RESULTS: Findings suggested that some patients had lapses in memory for taking their medication (capability); variation in beliefs toward the effectiveness of medication and confidence in self-managing their condition (motivation); a limited time to take medication; and barriers and enablers within the changing context of social support during the transition into adulthood (opportunity). Steps were taken to select the appropriate behavioral change components (involving behavior change techniques [BCTs] such as information on antecedents, prompts/cues; self-monitoring of the behavior; and social support) and translate them into app features designed to overcome these barriers to medication adherence. CONCLUSIONS: Patients with SCD have complex barriers to medication adherence necessitating the need for comprehensive models of behavior change to analyze the problem. Children and adolescents require an app that goes beyond simple medication reminders and takes into account the patient's beliefs, emotions, and environmental barriers to medication adherence.


Assuntos
Anemia Falciforme/tratamento farmacológico , Terapia Comportamental/instrumentação , Adesão à Medicação/psicologia , Adolescente , Anemia Falciforme/psicologia , Terapia Comportamental/métodos , Terapia Comportamental/normas , Criança , Feminino , Humanos , Masculino , Adesão à Medicação/estatística & dados numéricos , Aplicativos Móveis/normas , Aplicativos Móveis/estatística & dados numéricos , Pesquisa Qualitativa , Autogestão/métodos , Autogestão/psicologia , Autogestão/estatística & dados numéricos , Apoio Social , Inquéritos e Questionários
18.
JMIR Mhealth Uhealth ; 7(6): e13501, 2019 06 20.
Artigo em Inglês | MEDLINE | ID: mdl-31223120

RESUMO

BACKGROUND: For patients with sickle cell disease (SCD), effective management of vaso-occlusive crises (VOCs) is integral to provision of care, as nearly all affected individuals will suffer from VOCs in their lifetime. A recent systematic review of technological interventions to improve self-management in the care of SCD concluded that electronic health has the potential to improve the care of individuals with SCD. OBJECTIVE: The aim of this study was to assess the value of an electronic teaching module (ETM) provided by Emmi Solutions for educating adult SCD patients on VOC self-management and treatment options for SCD. METHODS: A pretest assessed adults with SCD for baseline knowledge with regard to self-management of VOCs. Participants then watched the 35-min ETM and completed a posttest and survey on the ETM. RESULTS: A total of 20 adults enrolled. Their knowledge scores improved (pretest median 66.5% and posttest median 85%; P<.001). In total, 18 participants (18/20, 90%) agreed that they "learned a lot" or "learned something" from the ETM. The most common topic about which they reported learning was hydroxyurea. A total of 12 participants (12/20, 60%) agreed with the statement that they "would recommend the module to a friend or family member with sickle cell disease." CONCLUSIONS: The ETM is associated with an increase in knowledge in patients with SCD. Limitations of the study include small sample size, no assessment of knowledge before premodule questionnaire completion, and no longitudinal follow-up. Identifying patients with SCD who demonstrate affinity for self-education via an ETM may further enhance utility of this tool to educate and empower patients.


Assuntos
Anemia Falciforme/psicologia , Manejo da Dor/instrumentação , Manejo da Dor/normas , Adulto , Anemia Falciforme/terapia , Feminino , Humanos , Masculino , Manejo da Dor/métodos , Medição da Dor/instrumentação , Medição da Dor/métodos , Projetos Piloto , Autogestão/métodos , Inquéritos e Questionários
19.
Pediatr Blood Cancer ; 66(8): e27755, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31044487

RESUMO

BACKGROUND: Children with sickle cell disease (SCD) are at risk for cognitive deficits. Limited data describe whether comprehensive cognitive evaluation improves education resources and whether caregivers perceive the assessment as beneficial. We tested our two hypotheses: (a) an integrated comprehensive cognitive evaluation program in children with SCD results in increased special education services allocation; and (b) caregivers will value comprehensive cognitive evaluation services provided. PROCEDURE: In a tertiary care medical facility, as part of quality improvement project, in a before-and-after evaluation between March 2011 and July 2014, we examined the impact of targeted comprehensive cognitive evaluation on change in special education services. We also evaluated the caregiver's perception regarding the utility of the provided services. RESULTS: A total of 21% (42 of 196) students (median age 11 years, range 3-18) with SCD were referred for cognitive assessment due to overt stroke (n = 11), silent stroke (n = 14), or concerns about cognitive or academic functioning without evidence of strokes (n = 17). At baseline, 45.2% received special education services and after the comprehensive cognitive evaluation 86.7% received special education services (P < 0.001). Among 33 caregivers who completed the survey, 97% reported that the assessment was helpful and 60% indicated that assessment led to beneficial changes for their children at school. CONCLUSION: Education advocacy coupled with comprehensive cognitive assessment in students with SCD improved access to special education services, and caregivers uniformly endorse this service as having added value.


Assuntos
Anemia Falciforme/psicologia , Anemia Falciforme/terapia , Cuidadores/educação , Cognição , Educação Especial/normas , Recursos em Saúde/estatística & dados numéricos , Educação de Pacientes como Assunto/normas , Adolescente , Adulto , Criança , Pré-Escolar , Aconselhamento , Feminino , Seguimentos , Humanos , Masculino , Prognóstico , Avaliação de Programas e Projetos de Saúde , Adulto Jovem
20.
Pediatr Blood Cancer ; 66(9): e27823, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31131984

RESUMO

BACKGROUND: Pain is a major complication of sickle cell disease (SCD), spanning vaso-occlusive crises and persistent pain. Although it is known that persistent pain is associated with considerable impairment in youth without SCD, little is known about the functional effects of persistent pain in SCD. The current study aimed to (a) characterize persistent pain in youth with SCD and (b) determine the extent to which youth with SCD and persistent pain differ in disease morbidity, functional impairment, and neurocognitive and psychological functioning. PROCEDURE: Eighty-nine participants (ages 7-16) and caregivers completed questionnaires (BRIEF [Behavior Rating Inventory of Executive Function], Conners-3 [Conners-third edition], and PedsQL™-SCD Module, where PedsQL is Pediatric Quality of Life Inventory). Participants completed neurocognitive tests WISC-V [Wechsler Intelligence Scale for Children-fifth edition], WJ-III [Woodcock Johnson Tests of Achievement-third edition], and WIAT-III [Wechsler Individual Achievement Test-third edition]). Youth were classified as having persistent pain if they reported daily pain for 7 days. Chi-square and independent sample t-test analyses were used to assess group differences (those with vs without persistent pain). RESULTS: Patients with persistent pain (n = 18) reported lower health-related quality of life (P = .000). Caregivers were more likely to rate youth with persistent pain as having lower planning/organization abilities (P = .011) and clinically elevated symptoms of defiance/aggression and oppositional defiance (Ps = .00; .01). Patients with persistent pain demonstrated poorer working memory (P = .023) and processing speed (P = .027), and fewer demonstrating reading fluency abilities in the average or above range (P = .026). CONCLUSIONS: Youth with SCD and persistent pain are at risk for psychosocial and neurocognitive impairments, suggesting that persistent pain may be an important indicator of disease burden. Furthermore, disease management may be enhanced by assessing cognitive and psychosocial functioning and incorporating interdisciplinary treatments addressing impairment associated with persistent pain.


Assuntos
Anemia Falciforme , Disfunção Cognitiva , Transtornos da Memória , Dor , Qualidade de Vida , Adolescente , Anemia Falciforme/complicações , Anemia Falciforme/epidemiologia , Anemia Falciforme/fisiopatologia , Anemia Falciforme/psicologia , Cuidadores , Criança , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/fisiopatologia , Disfunção Cognitiva/psicologia , Feminino , Humanos , Masculino , Transtornos da Memória/epidemiologia , Transtornos da Memória/etiologia , Transtornos da Memória/fisiopatologia , Transtornos da Memória/psicologia , Testes de Estado Mental e Demência , Dor/epidemiologia , Dor/etiologia , Dor/fisiopatologia , Dor/psicologia , Inquéritos e Questionários
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