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1.
Artículo en Inglés | MEDLINE | ID: mdl-39297703

RESUMEN

BACKGROUND: Sickle cell disease (SCD) is a chronic medical condition characterized by red blood cell sickling, vaso-occlusion, hemolytic anemia, and subsequently, end-organ damage and reduced survival. Because of this significant pathophysiology and early mortality, we hypothesized that patients with SCD are experiencing accelerated biological aging compared to individuals without SCD. METHODS: We utilized the DunedinPACE measure to compare the epigenetic pace of aging in 131 Black Americans with SCD to 1391 Black American veterans without SCD. RESULTS: SCD patients displayed a significantly accelerated pace of aging (DunedinPACE mean difference of 0.057 points) compared to the veterans without SCD, whereby SCD patients were aging approximately 0.7 months more per year than those without SCD (p=4.49x10-8). This was true, even though the SCD patients were significantly younger according to chronological age than the individuals without SCD, making the epigenetic aging discrepancy even more apparent. This association became stronger when we removed individuals with PTSD from the non-SCD group (p=2.18x10-9), and stronger still when we restricted the SCD patients to those with hemoglobin SS and Sß0 thalassemia genotypes (p=1.61x10-10). CONCLUSIONS: These data support our hypothesis that individuals with SCD experience accelerated biological aging as measured by global epigenetic variation. The assessment of epigenetic measures of biological aging may prove useful to identify which SCD patients would most benefit from clinical interventions to reduce mortality.

2.
J Pain ; : 104658, 2024 Aug 21.
Artículo en Inglés | MEDLINE | ID: mdl-39154808

RESUMEN

We aimed to determine the minimal clinically important difference (MCID) in pain severity and agreement between the visual analog scale (VAS) and the verbal numeric rating scale (NRS) in people with sickle cell disease (SCD) experiencing an acute vaso-occlusive episode in the emergency department. In the COMPARE-VOE trial (NCT03933397), participants were administered the VAS (0-100), NRS (0-100), and descriptor scale (a lot better, a little better, same, a little worse, much worse) every 30 minutes while in the emergency department. We analyzed data from 100 participants (mean age 30.2 years; 61% female). We calculated the mean differences and 95% confidence intervals (CIs) between current and preceding scores when the participant reported a little worse or a little better pain for each scale (255 VAS and 150 NRS observations) to assess the MCID for the VAS and NRS. Pearson correlation and the Bland-Altman method were used to assess the agreement among 411 paired VAS and NRS observations. Our results indicated that the MCID for the VAS was 8.77 mm (95% CI: 7.43 mm, 10.83 mm) and the NRS was 8.29 (95% CI: 6.47, 11.60). The VAS and NRS scales had a correlation of .88 (P < .001). The Bland-Altman method indicated a mean difference of -4.6 ± 1.96 and the 95% limits of agreement ranged from 20 to -29. Despite high correlation, there was considerable variability of agreement between the VAS and NRS scales, indicating that these scales are not interchangeable to assess pain during a vaso-occlusive event. PERSPECTIVE: The MCID in pain severity for individuals with a SCD vaso-occlusive episode using the VAS (8.77 mm) is lower than previously reported, and the MCID for NRS was 8.29. The agreement between the VAS and NRS was determined and the scales cannot be used interchangeably to measure SCD pain intensity.

3.
Artículo en Inglés | MEDLINE | ID: mdl-39093944

RESUMEN

Background: Acupuncture is a widely practiced complementary and integrative health modality that has multiple clinical applications. The use of acupuncture in the United States is rapidly increasing. Although studies have shown the efficacy and effectiveness of acupuncture for various ailments, the integration of acupuncture into the U.S. health care system remains a challenge. Little is known about the factors affecting this integration. Objective: To provide a systematic review of the barriers and facilitators affecting the integration of acupuncture into the U.S. health care system. Methods: Four electronic databases were searched. Three independent reviewers were involved in the screening and data charting processes. Findings were synthesized and categorized into four levels based on the Social Ecological Model. Results: A total of 22 studies were included in the final review. The barriers and facilitators affecting the integration of acupuncture were mapped into four levels (individual, interpersonal, organizational, and policy). The most frequently reported barriers and facilitators were mapped into the Social Ecological Model constructs within the "Individual" level (i.e., beliefs and attitudes of acupuncture, and practical issues) and the "Organizational" level (i.e., credentialing, space and facility, referral system). Conclusion: This review has identified and synthesized the breadth of evidence on the barriers and facilitators to the integration of acupuncture into the U.S. health care system. Results of this review will guide future implementation studies to develop and test implementation strategies to integrate acupuncture into the U.S. health care system.

5.
Ann Emerg Med ; 84(4): 337-350, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-38795078

RESUMEN

STUDY OBJECTIVE: Acute musculoskeletal pain in emergency department (ED) patients is frequently severe and challenging to treat with medications alone. The purpose of this study was to determine the feasibility, acceptability, and effectiveness of adding ED acupuncture to treat acute episodes of musculoskeletal pain in the neck, back, and extremities. METHODS: In this pragmatic 2-stage adaptive open-label randomized clinical trial, Stage 1 identified whether auricular acupuncture (AA; based on the battlefield acupuncture protocol) or peripheral acupuncture (PA; needles in head, neck, and extremities only), when added to usual care was more feasible, acceptable, and efficacious in the ED. Stage 2 assessed effectiveness of the selected acupuncture intervention(s) on pain reduction compared to usual care only (UC). Licensed acupuncturists delivered AA and PA. They saw and evaluated but did not deliver acupuncture to the UC group as an attention control. All participants received UC from blinded ED providers. Primary outcome was 1-hour change in 11-point pain numeric rating scale. RESULTS: Stage 1 interim analysis found both acupuncture styles similar, so Stage 2 continued all 3 treatment arms. Among 236 participants randomized, demographics and baseline pain were comparable across groups. When compared to UC alone, reduction in pain was 1.6 (95% confidence interval [CI]: 0.7 to 2.6) points greater for AA+UC and 1.2 (95% CI: 0.3 to 2.1) points greater for PA+UC patients. Participants in both treatment arms reported high satisfaction with acupuncture. CONCLUSION: ED acupuncture is feasible and acceptable and can reduce acute musculoskeletal pain better than UC alone.


Asunto(s)
Terapia por Acupuntura , Dolor Agudo , Servicio de Urgencia en Hospital , Dolor Musculoesquelético , Manejo del Dolor , Dimensión del Dolor , Humanos , Femenino , Masculino , Dolor Musculoesquelético/terapia , Adulto , Terapia por Acupuntura/métodos , Persona de Mediana Edad , Manejo del Dolor/métodos , Dolor Agudo/terapia , Resultado del Tratamiento , Estudios de Factibilidad
6.
Biol Res Nurs ; : 10998004241250322, 2024 Apr 28.
Artículo en Inglés | MEDLINE | ID: mdl-38679469

RESUMEN

Objective: Sickle cell disease (SCD), the most common inherited blood disorder in the United States, is associated with severe psychoneurological symptoms. While epigenetic age acceleration has been linked to psychoneurological symptom burden in other diseases, this connection is unexplored in SCD. This study aimed to assess the association between epigenetic age acceleration and psychoneurological symptom burden in SCD. Methods: In this cross-sectional study, emotional impact, pain impact, sleep impact, social functioning, and cognitive function were assessed in 87 adults living with SCD. DNA methylation data were generated from blood specimens and used to calculate epigenetic age using five clocks (Horvath, Hannum, PhenoAge, GrimAge, & DunedinPACE). Associations between epigenetic age acceleration and symptoms were assessed. Results: The sample (N = 87) had a mean (SD) chronologic age was 30.6 (8.1) years. Epigenetic age acceleration was associated with several symptom outcomes. GrimAge age acceleration (ß = -0.49, p = .03) and increased DunedinPACE (ß = -2.23, p = .004) were associated with worse emotional impact scores. PhenoAge (ß = -0.32, p = .04) and the GrimAge (ß = -0.48, p = .05) age acceleration were associated with worse pain impact scores. Increased DunedinPACE (ß = -2.07 p = .04) were associated with worse sleep impact scores. Increased DunedinPACE (ß = -2.87, p = .005) was associated with worse social functioning scores. We did not find associations between epigenetic age acceleration and cognitive function in this sample. Conclusion: Epigenetic age acceleration was associated with worse symptom experiences, suggesting the potential for epigenetic age acceleration as a biomarker to aid in risk stratification or targets for intervention to mitigate symptom burden in SCD.

7.
J Am Assoc Nurse Pract ; 36(5): 300-306, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38330235

RESUMEN

ABSTRACT: Dilemmas regarding opioid prescribing for chronic pain frequently occur within health care settings. The ethical principles of autonomy, beneficence, nonmaleficence, and justice, as well as the principles of care ethics, can assist in addressing these opioid-related dilemmas. The purpose of this clinical case study is to provide a case study highlighting an opioid prescribing dilemma and then identify opioid-related transition considerations; address ethical questions that nurse practitioners (NPs) may encounter in clinical practice when providing care for individuals living with chronic pain who may need or use a prescribed opioid medication; and draw on the ethical principles and care ethics to provide guidance for NPs who face these challenging issues.


Asunto(s)
Analgésicos Opioides , Dolor Crónico , Humanos , Analgésicos Opioides/uso terapéutico , Dolor Crónico/tratamiento farmacológico , Toma de Decisiones/ética , Enfermeras Practicantes , Manejo del Dolor/métodos , Manejo del Dolor/normas , Manejo del Dolor/ética , Reumatología/métodos , Reumatología/normas
8.
Pain Med ; 25(2): 144-156, 2024 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-37815822

RESUMEN

OBJECTIVES: Over 50% of adults living with sickle cell disease (SCD) have chronic pain, but the underlying mechanisms of chronic pain in this population remain unclear. Quantitative sensory testing is an important measurement tool for understanding pain and sensory processing. This scoping review summarizes quantitative sensory testing methodologies used in sickle cell studies and the evidence for central sensitization in this population. METHODS: We conducted a systematic search of PubMed, Embase, and CINAHL to identify studies using quantitative sensory testing in individuals living with sickle cell disease. Search strategies were based on variations of the terms "sickle cell disease," and "quantitative sensory testing." Eligible studies were observational or experimental studies in human participants living with SCD that reported findings and detailed methodology for at least 1 quantitative sensory testing modality. RESULTS: Our search yielded a total of 274 records; 27 of which are included in this scoping review. Of the 27 studies, 17 were original studies (with combined total of 516 adult and 298 pediatric participants), and 10 were secondary or subgroup analyses of these prior studies. Significant variation existed in quantitative sensory testing methodologies across studies, including testing locations, type and intensity of stimuli, and interpretation of findings. Of the identified studies, 22% (2/9 studies) reported sensory abnormalities in mechanical sensitivity and thresholds, 22% (2/9 studies) reported abnormal pressure pain thresholds, 46% (6/13 studies) reported sensory abnormalities in thermal pain thresholds and tolerance (cold and warm), and 50% (2/4 studies) reported abnormalities in temporal summation. CONCLUSION: Future studies should use standardized quantitative sensory testing protocols with consistent and operationalized definitions of sensitization to provide clear insight about pain processing and central sensitization in sickle cell disease.


Asunto(s)
Anemia de Células Falciformes , Dolor Crónico , Adulto , Humanos , Niño , Dolor Crónico/complicaciones , Umbral del Dolor , Dimensión del Dolor , Anemia de Células Falciformes/complicaciones , Sensibilización del Sistema Nervioso Central
9.
Blood Adv ; 8(1): 47-55, 2024 01 09.
Artículo en Inglés | MEDLINE | ID: mdl-37967379

RESUMEN

ABSTRACT: Sickle cell disease (SCD) affects ∼100 000 predominantly African American individuals in the United States, causing significant cellular damage, increased disease complications, and premature death. However, the contribution of epigenetic factors to SCD pathophysiology remains relatively unexplored. DNA methylation (DNAm), a primary epigenetic mechanism for regulating gene expression in response to the environment, is an important driver of normal cellular aging. Several DNAm epigenetic clocks have been developed to serve as a proxy for cellular aging. We calculated the epigenetic ages of 89 adults with SCD (mean age, 30.64 years; 60.64% female) using 5 published epigenetic clocks: Horvath, Hannum, PhenoAge, GrimAge, and DunedinPACE. We hypothesized that in chronic disease, such as SCD, individuals would demonstrate epigenetic age acceleration, but the results differed depending on the clock used. Recently developed clocks more consistently demonstrated acceleration (GrimAge, DunedinPACE). Additional demographic and clinical phenotypes were analyzed to explore their association with epigenetic age estimates. Chronological age was significantly correlated with epigenetic age in all clocks (Horvath, r = 0.88; Hannum, r = 0.89; PhenoAge, r = 0.85; GrimAge, r = 0.88; DunedinPACE, r = 0.34). The SCD genotype was associated with 2 clocks (PhenoAge, P = .02; DunedinPACE, P < .001). Genetic ancestry, biological sex, ß-globin haplotypes, BCL11A rs11886868, and SCD severity were not associated. These findings, among the first to interrogate epigenetic aging in adults with SCD, demonstrate epigenetic age acceleration with recently developed epigenetic clocks but not older-generation clocks. Further development of epigenetic clocks may improve their predictive ability and utility for chronic diseases such as SCD.


Asunto(s)
Envejecimiento , Anemia de Células Falciformes , Adulto , Humanos , Femenino , Masculino , Envejecimiento/genética , Senescencia Celular , Anemia de Células Falciformes/genética , Negro o Afroamericano/genética , Epigénesis Genética
10.
Contemp Clin Trials Commun ; 36: 101218, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37842321

RESUMEN

Sickle cell disease (SCD) is a hemoglobin disorder and the most common genetic disorder that affects 100,000 Americans and millions worldwide. Adults living with SCD have pain so severe that it often requires opioids to keep it in control. Depression is a major global public health concern associated with an increased risk in chronic medical disorders, including in adults living with sickle cell disease (SCD). A strong relationship exists between suicidal ideation, suicide attempts, and depression. Researchers enrolling adults living with SCD in pragmatic clinical trials are obligated to design their methods to deliberately monitor and respond to symptoms related to depression and suicidal ideation. This will offer increased protection for their participants and help clinical investigators meet their fiduciary duties. This article presents a review of this sociotechnical milieu that highlights, analyzes, and offers recommendations to address ethical considerations in the development of protocols, procedures, and monitoring activities related to suicidality in depressed patients in a pragmatic clinical trial.

11.
Pain Manag Nurs ; 24(6): 603-609, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37806899

RESUMEN

BACKGROUND: The knowledge and skills of pain management nurses positions them well to manage people's pain and provide critical services to patients with COVID-19. AIM: To understand the personal and professional experiences and the support pain management nurses received during the COVID-19 pandemic. METHODS: Between July 2020 and 2021, data were collected through semi-structured telephone interviews from members of the American Society for Pain Management Nursing. Content analysis was used. RESULTS: Eighteen pain management nurses who worked during the early stages of the pandemic were interviewed. Three main categories were identified: experiencing stress and burden, pain management strategies changed, learning to cope with support. Pain management nurses reported fear of exposure, difficulties with staff shortages, the complex social milieu, and how pain management took a backseat to other symptoms of COVID-19. They coped through support from their colleagues, organizational leaders, and community members. Pain management nurses provided recommendations for future care of patients' pain during a pandemic. CONCLUSIONS: Pain management nurses shared their professional and personal experiences and the support they received while managing patients' pain during the COVID-19 pandemic. Their experiences provided findings on the importance of pain management and to support nurses during personal and professional vulnerabilities during crises. Key recommendations on the care of patients' pain in future pandemics included developing expertise in pain management and health-related emergencies; engaging nurses in supportive mental health services, infectious disease testing, and vaccine efforts; and planning for surge capacity to reach out to underserved people living with pain.


Asunto(s)
COVID-19 , Enfermeras y Enfermeros , Humanos , Manejo del Dolor , Pandemias , Dolor , Investigación Cualitativa
12.
EClinicalMedicine ; 62: 102104, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37533421

RESUMEN

Background: Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods: This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings: Among 2212 participants, we identified five classes, including four classes with "Low" (565 participants, 26%), "Normal" (651 participants, 29%), "High" (569 participants, 26%), or "Very High" (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, "High Fatigue/Sleep/Pain and Low Anxiety/Depression" (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the "High" class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of "High Fatigue/Sleep/Pain and Low Anxiety/Depression" class participants were similar to the "High" severity class. Interpretation: Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life. Funding: National Institute of Nursing Research (F31NR019007), Canadian Institutes of Health Research, Arthritis Society Canada, the Lady Davis Institute for Medical Research, the Jewish General Hospital Foundation, McGill University, Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, and Scleroderma Queensland.

13.
J Am Med Inform Assoc ; 30(9): 1561-1566, 2023 08 18.
Artículo en Inglés | MEDLINE | ID: mdl-37364017

RESUMEN

Embedded pragmatic clinical trials (ePCTs) play a vital role in addressing current population health problems, and their use of electronic health record (EHR) systems promises efficiencies that will increase the speed and volume of relevant and generalizable research. However, as the number of ePCTs using EHR-derived data grows, so does the risk that research will become more vulnerable to biases due to differences in data capture and access to care for different subsets of the population, thereby propagating inequities in health and the healthcare system. We identify 3 challenges-incomplete and variable capture of data on social determinants of health, lack of representation of vulnerable populations that do not access or receive treatment, and data loss due to variable use of technology-that exacerbate bias when working with EHR data and offer recommendations and examples of ways to actively mitigate bias.


Asunto(s)
Registros Electrónicos de Salud , Equidad en Salud , Estados Unidos , Humanos , Atención a la Salud , National Institutes of Health (U.S.) , Sesgo
14.
J Integr Complement Med ; 29(10): 683-688, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37184905

RESUMEN

Objective: This study aimed to explore perspectives of people living with sickle cell disease (SCD) and SCD clinic providers and staff about the use of acupuncture and guided relaxation for treating chronic SCD pain. Data obtained were to inform an implementation blueprint for an effectiveness implementation clinical trial (GRACE Trial) testing whether acupuncture or guided relaxation reduces chronic pain when compared with usual care. Design: Qualitative research design. Methods: We conducted 33 semistructured interviews with people with SCD and SCD clinic providers and staff. Interviews were transcribed and coded. A deductive content analysis process was used to identify themes. Results: Four themes were identified: Receptivity to Acupuncture and Guided Relaxation, Limited Awareness, Complementary and Integrative Health (CIH) Therapy Preference, and Access Barriers. Both patients and clinic providers and staff were open to the use of acupuncture and guided relaxation for chronic pain treatment. After learning about these CIH therapies, some patients expressed a preference for one therapy over the other. They also discussed their ability to successfully engage with each therapy. There is a need to dispel misconceptions about the therapies by increasing understanding of how each therapy is implemented and functions to reduce pain. We identified several potential barriers that might affect the success of the trial and future health system integration, including time, transportation, and technology. Conclusion: This study is one of the first to present perspectives of both patients with SCD and clinic providers and staff on the use of acupuncture and guided relaxation for chronic SCD pain. Stakeholders' early input and perspectives highlighted that they welcome nonpharmacological CIH therapies. Implementation of a clinical trial and future health system integration will require the addressing misinformation and identifying strategies to overcome access barriers. Clinical trial registration number: NCT04906447.


Asunto(s)
Terapia por Acupuntura , Anemia de Células Falciformes , Dolor Crónico , Terapias Complementarias , Humanos , Dolor Crónico/terapia , Manejo del Dolor , Anemia de Células Falciformes/tratamiento farmacológico
15.
Am J Nurs ; 123(6): 26-36, 2023 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-37166166

RESUMEN

PURPOSE: In this qualitative descriptive study, we sought to understand the professional experiences and perceptions of pain management nurses who cared for older adults in the United States during the height of the COVID-19 pandemic. METHODS: Data were collected between July 2020 and July 2021 through individual, semistructured interviews with a nonprobability sample of 18 pain management nurses. An inductive content analysis approach, in which categories were derived from a coding process based on a close reading of data extracts from the interview transcripts, was used to reveal the major theme related to the study aim. RESULTS: Notwithstanding the variable consequences of COVID-19 on patients' health, a single overarching theme was pronounced: "Pain management for older adults remained unchanged during the pandemic despite unpredictable survival, restrictions on human interactions, and communication challenges." This theme was supported by four categories that emerged from the data: unpredictable survival, restriction-induced isolation, perceived continuity and equality of pain management, and communication challenges. CONCLUSIONS: During the COVID-19 pandemic, pain management nurses stepped in and joined interdisciplinary teams providing general and specialized pain care to ensure that older adults, whether inpatient or outpatient, continued to receive quality care. These study findings highlight the many challenges pain management nurses faced during this unprecedented public health crisis, as well as opportunities to improve the health system and enhance nursing practice to meet the needs of older patients.


Asunto(s)
COVID-19 , Pandemias , Humanos , Estados Unidos/epidemiología , Anciano , Dolor , Manejo del Dolor , Investigación Cualitativa
16.
Contemp Clin Trials ; 130: 107238, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37225122

RESUMEN

Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions. However, many pragmatic trials rely on data from the electronic health record (EHR) data, which are subject to bias from incomplete data, poor data quality, lack of representation from people who are medically underserved, and implicit bias in EHR design. This commentary examines how the use of EHR data might exacerbate bias and potentially increase health inequities. We offer recommendations for how to increase generalizability of ePCT results and begin to mitigate bias to promote health equity.


Asunto(s)
Registros Electrónicos de Salud , Equidad en Salud , Humanos , Promoción de la Salud , Sesgo , Exactitud de los Datos
17.
Pediatr Blood Cancer ; 70(7): e30356, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37057750

RESUMEN

OBJECTIVE: To describe the prevalence of infertility and infertility treatment seeking among people enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry and identify sociodemographic and clinical correlates of infertility. DESIGN: Cross-sectional. PARTICIPANTS: The study population included 2108 women and men (≥18 years of age) enrolled in the SCDIC registry who completed the fertility questionnaire. RESULTS: All participants who completed the infertility-specific questions were included in the analysis (1224 females; 884 males). Of these, 16.9% of males and 23.7% of females reported infertility, in contrast to rates in the general population (12% of males; 11% of females). Only 22.8% of this subgroup had sought a fertility consultation; of these, 41% received infertility testing and 58% received advice, yet only a few received specific treatment: ovulation medication (19.1%), fallopian tubal surgery (4.8%), other female treatment (17.5%), varicocelectomy (8.1%), or other male treatment (10.8%). Increasing age, employment status, and interaction between gender and single marital status are associated with reported infertility. We did not observe differences between groups relative to sickle cell disease (SCD) genotype, a broad category of self-reported hydroxyurea use any time during life, type of medical insurance, income, or education. CONCLUSION: To our knowledge, this is the first study to examine self-reported identification of and treatment for infertility among a large sample of people with SCD. These findings suggest that (a) infertility occurs at a higher rate, but fertility care treatment seeking is less frequent than in the general public; and (b) sociodemographic and clinical differences between individuals who report experiencing infertility and those who do not did not emerge in this study.


Asunto(s)
Anemia de Células Falciformes , Infertilidad , Humanos , Masculino , Femenino , Estudios Transversales , Fertilidad , Anemia de Células Falciformes/terapia , Sistema de Registros
18.
Contemp Clin Trials Commun ; 32: 101076, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-36852100

RESUMEN

Background: People with sickle cell disease frequently use complementary and integrative therapies to cope with their pain, yet few studies have evaluated their effectiveness. The 3-arm, 3-site pragmatic Hybrid Effectiveness-implementation Trial of Guided Relaxation and Acupuncture for Chronic Sickle Cell Disease Pain (GRACE) has 3 priorities: (1) evaluate guided relaxation and acupuncture to improve pain control; (2) determine the most appropriate and effective treatment sequence for any given patient based on their unique characteristics; and (3) describe the processes and structures required to implement guided relaxation and acupuncture within health care systems. Methods: Participants (N = 366) are being recruited and randomized 1:1:1 to one of 2 intervention groups or usual care. The acupuncture intervention group receives 10 sessions over approximately 5 weeks. The guided relaxation intervention group receives access to video sessions ranging from 2 to 20 min each viewed daily over 5 weeks. The usual care group receives the standard of clinical care for sickle cell disease. Participants are re-randomized at 6 weeks depending on their pain impact score. Assessments occur at 6 weeks, 12 weeks, and 24 weeks. The primary outcome is the change in pain impact score and secondary measures include opioid use, anxiety, depression, sleep, pain catastrophizing, substance use, global impression of change, constipation, and hospitalizations. The GRACE study uses the Consolidated Framework for Implementation Research to plan, execute, and evaluate the associated implementation processes. Conclusion: The results from GRACE will represent a critical step toward improving management of pain affecting patients with sickle cell disease.ClinicalTrials.gov Identifier: NCT04906447.

19.
Telemed J E Health ; 29(9): 1275-1288, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-36787486

RESUMEN

Introduction: With the coronavirus disease 2019 (COVID-19) pandemic, use of telehealth technology increased dramatically. Nonpharmacological approaches to pain management may be well suited for virtual care. Yet, it is not widely understood if this treatment modality is effective when delivered via videoconferencing. This review examines the effectiveness of movement-based and psychologically informed chronic pain management interventions delivered via videoconferencing compared to in-person care. Methods: Searches of MEDLINE® (via Ovid®), Embase (via Elsevier), CINAHL Complete (via EBSCO), and Cochrane Central Register of Controlled Trials (via Ovid) were performed from inception to June 10, 2021. All articles meeting eligibility criteria were included for data abstraction. Results: Eight thousand two hundred fifty-two citations were identified, and after removing duplicates, 4,661 citations remained. One study investigating acceptance and commitment therapy met eligibility criteria. The noninferiority randomized trial found no statistically significant difference in outcomes between delivery modalities. A horizon scan was conducted to assess planned or recent studies. Horizon scan results yielded six protocols in trial databases, one pilot study, and three published protocols for ongoing studies. Discussion: Findings from this study indicate that virtually delivered pain management is a possible substitute for in-person care. Given the paucity of evidence on this topic, further comparative and adequately powered studies that assess the impact of movement-based and psychologically informed pain management delivered via videoconferencing are needed. Conclusions: Research is needed to understand patient preferences of such interventions within a variety of settings. Such evaluations will be needed to guide clinical and operations practice to optimize equitable deployment and access to high-quality health care delivered via videoconferencing.


Asunto(s)
Terapia de Aceptación y Compromiso , COVID-19 , Dolor Crónico , Humanos , Dolor Crónico/terapia , Proyectos Piloto , Comunicación por Videoconferencia
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