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1.
World J Urol ; 42(1): 295, 2024 May 06.
Artículo en Inglés | MEDLINE | ID: mdl-38709300

RESUMEN

PURPOSE: Selective serotonin reuptake inhibitors are associated with high rates of nonadherence and sexual dysfunction, yet the correlation between these findings in young adult men is poorly characterized. We aimed to evaluate if young adult men are less willing to adhere to antidepressant treatment due to intolerable side effects, such as sexual dysfunction. METHODS: Deidentified, compensated survey that assessed baseline demographics, PHQ-8 and GAD-7 scores, attitudes towards antidepressant medication side effects, and perceptions of antidepressant medications including selective serotonin reuptake inhibitors, bupropion, and mirtazapine. RESULTS: From 665 delivered surveys, 505 respondents completed their survey (response rate: 76%), of which 486 were included for final analysis. After seeing common side effect profiles, our sample's willingness to take sexual function-sparing agents, such as bupropion or mirtazapine, was significantly greater than selective serotonin reuptake inhibitors (p < 0.001), with no significant difference between bupropion and mirtazapine (p = 0.263). The negative influence of erectile dysfunction and anorgasmia scored significantly higher than other common antidepressant side effects like weight gain, nausea, and dry mouth (range: p < 0.001, p = 0.043). With the exception of insomnia, participants indicated that experiencing sexual dysfunction while taking an antidepressant medication would lead to nonadherence at a significantly higher frequency than any other side effect assessed (range: p < 0.001, p = 0.005). CONCLUSION: The risk of experiencing sexual side effects when taking antidepressants could lead young adult men to become nonadherent to these medications. Strategies to augment the effectiveness of antidepressants, such as shared decision-making and the use of sexual function-sparing agents, are critical.


Asunto(s)
Antidepresivos , Cumplimiento de la Medicación , Disfunciones Sexuales Fisiológicas , Humanos , Masculino , Estudios Transversales , Adulto Joven , Disfunciones Sexuales Fisiológicas/inducido químicamente , Adulto , Antidepresivos/efectos adversos , Antidepresivos/uso terapéutico , Mirtazapina/uso terapéutico , Inhibidores Selectivos de la Recaptación de Serotonina/efectos adversos , Inhibidores Selectivos de la Recaptación de Serotonina/uso terapéutico , Bupropión/efectos adversos , Bupropión/uso terapéutico
2.
JMIR Mhealth Uhealth ; 12: e49024, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38717433

RESUMEN

Background: Mobile health (mHealth) interventions have immense potential to support disease self-management for people with complex medical conditions following treatment regimens that involve taking medicine and other self-management activities. However, there is no consensus on what discrete behavior change techniques (BCTs) should be used in an effective adherence and self-management-promoting mHealth solution for any chronic illness. Reviewing the extant literature to identify effective, cross-cutting BCTs in mHealth interventions for adherence and self-management promotion could help accelerate the development, evaluation, and dissemination of behavior change interventions with potential generalizability across complex medical conditions. Objective: This study aimed to identify cross-cutting, mHealth-based BCTs to incorporate into effective mHealth adherence and self-management interventions for people with complex medical conditions, by systematically reviewing the literature across chronic medical conditions with similar adherence and self-management demands. Methods: A registered systematic review was conducted to identify published evaluations of mHealth adherence and self-management interventions for chronic medical conditions with complex adherence and self-management demands. The methodological characteristics and BCTs in each study were extracted using a standard data collection form. Results: A total of 122 studies were reviewed; the majority involved people with type 2 diabetes (28/122, 23%), asthma (27/122, 22%), and type 1 diabetes (19/122, 16%). mHealth interventions rated as having a positive outcome on adherence and self-management used more BCTs (mean 4.95, SD 2.56) than interventions with no impact on outcomes (mean 3.57, SD 1.95) or those that used >1 outcome measure or analytic approach (mean 3.90, SD 1.93; P=.02). The following BCTs were associated with positive outcomes: self-monitoring outcomes of behavior (39/59, 66%), feedback on outcomes of behavior (34/59, 58%), self-monitoring of behavior (34/59, 58%), feedback on behavior (29/59, 49%), credible source (24/59, 41%), and goal setting (behavior; 14/59, 24%). In adult-only samples, prompts and cues were associated with positive outcomes (34/45, 76%). In adolescent and young adult samples, information about health consequences (1/4, 25%), problem-solving (1/4, 25%), and material reward (behavior; 2/4, 50%) were associated with positive outcomes. In interventions explicitly targeting medicine taking, prompts and cues (25/33, 76%) and credible source (13/33, 39%) were associated with positive outcomes. In interventions focused on self-management and other adherence targets, instruction on how to perform the behavior (8/26, 31%), goal setting (behavior; 8/26, 31%), and action planning (5/26, 19%) were associated with positive outcomes. Conclusions: To support adherence and self-management in people with complex medical conditions, mHealth tools should purposefully incorporate effective and developmentally appropriate BCTs. A cross-cutting approach to BCT selection could accelerate the development of much-needed mHealth interventions for target populations, although mHealth intervention developers should continue to consider the unique needs of the target population when designing these tools.


Asunto(s)
Terapia Conductista , Automanejo , Telemedicina , Cumplimiento y Adherencia al Tratamiento , Humanos , Automanejo/métodos , Automanejo/psicología , Automanejo/estadística & datos numéricos , Telemedicina/métodos , Telemedicina/estadística & datos numéricos , Telemedicina/normas , Cumplimiento y Adherencia al Tratamiento/estadística & datos numéricos , Cumplimiento y Adherencia al Tratamiento/psicología , Terapia Conductista/métodos , Terapia Conductista/instrumentación , Terapia Conductista/estadística & datos numéricos , Terapia Conductista/normas , Enfermedad Crónica/terapia , Enfermedad Crónica/psicología
3.
Clin Pract Pediatr Psychol ; 11(2): 217-227, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37583937

RESUMEN

Objective: Most of the transition literature examines adolescents and young adults with special healthcare needs, though many youth will eventually transition to adult healthcare providers, regardless of medical complexity. This study addresses this gap by examining transition needs and experiences specifically within a college student sample of emerging adults without complex medical needs. Methods: 108 college students (Mage=20.93 years, SD=1.14) completed interviews and questionnaires regarding transition. The most difficult and easiest aspects of healthcare self-management were thematically coded. Differences in questionnaires were assessed across sources of transition education. Results: 52% of college students reported receiving education about managing healthcare from medical providers versus 95% from caregivers. Notably, 57% desired more support. Those receiving medical provider education reported higher responsibility. Students reported most difficulty managing health insurance. Results were similar across racial and ethnic groups and genders. Conclusions: Gaps in transition preparation include low rates of medical provider education and support regarding health insurance. College students receiving education from medical providers reported greater healthcare responsibility. Provider-led transition education is needed for college students without complex medical needs. Implications for Impact Statement: This study suggests that college students without complex medical conditions experience gaps in transition preparation. Although half reported talking to their medical provider about transition to adult care, many desired more support, with the greatest difficulty reported in learning to manage health insurance.

4.
Pediatr Nephrol ; 38(11): 3791-3802, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37306720

RESUMEN

BACKGROUND: Poor adherence habits are key contributors to nonadherence but there are few clinically feasible methods for evaluating adherence habits, particularly for youths with chronic kidney disease (CKD). This study investigated how participants' qualitative responses to three interview questions about adherence habits mapped to primary principles of habit formation and objectively measured medication adherence in youths with CKD. METHODS: Participants (ages 11-21 years) were recruited from a pediatric nephrology clinic as part of a larger study. Participants' daily objective antihypertensive medication adherence was measured with an electronic pill bottle over a 4-week baseline period. Qualitative interviews about adherence habits and routines were conducted with a subset of participants (N = 18). RESULTS: Clear qualitative differences emerged in how participants with high-medium adherence (80-100%) discussed adherence habits compared to participants with low adherence (0-79%). Participants with high-medium adherence discussed situational cues for taking medicine, including locations that cue adherence, step-by-step events leading up to taking medicine, and people who cue adherence. Participants with high-medium adherence regularly described taking medicine as "automatic," "second nature," and a "habit." Participants with low adherence rarely discussed these habit features nor did they explicitly acknowledge currently missing doses. Participants with low adherence tended to discuss challenges with organization and routines for taking medicine. CONCLUSIONS: Evaluating patient responses to questions about adherence habits may uncover challenges with adherence habit formation, provide direction for habit-strengthening intervention focused on developing automatic cues for taking medication, and support adherence successes for youths with CKD. CLINICAL TRIAL REGISTRATION NUMBER: NCT03651596. A higher resolution version of the Graphical abstract is available as Supplementary information.


Asunto(s)
Cumplimiento de la Medicación , Insuficiencia Renal Crónica , Adolescente , Niño , Humanos , Antihipertensivos/uso terapéutico , Hábitos , Insuficiencia Renal Crónica/tratamiento farmacológico , Adulto Joven
5.
J Cancer Surviv ; 2023 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-37093516

RESUMEN

PURPOSE: The Johns Hopkins Primary Care for Cancer Survivors (PCCS) Clinic was established in 2015 to improve care delivery for the growing cancer survivor population. We aim to describe areas of care addressed by PCCS and factors associated with clinic utilization. METHODS: We conducted a retrospective chart review of the first 301 patients' clinic visits. We used negative binomial regression models to identify factors associated with the rate of PCCS clinic visits overall and for cancer surveillance and treatment-related effects. RESULTS: There were 1702 clinic visits across 301 patients during the study period (77% female, median age 61). The most common areas of care addressed were chronic medical problems (80%), preventive health care (62%), cancer surveillance (59%), treatment-related effects (50%), and new/acute problems (46%). Multivariate analyses found that age > 60 years (IRR = 1.9, 95% CI = 1.2-3.0, p = 0.007) and higher number of comorbidities (IRR = 1.2, 95% CI = 1.1 - 1.2, p < 0.001) were associated with more overall PCCS visits, while female gender was associated with fewer visits (IRR = 0.6, CI = 0.4 - 0.8, p = 0.001). Gastrointestinal cancer type, shorter length of survivorship, male gender, and higher number of comorbidities were associated with a higher rate of visits addressing both surveillance and treatment-related effects (p < 0.05). CONCLUSIONS: The PCCS clinic addressed cancer and non-cancer related needs. Older patients and survivors with more comorbidities had significantly increased clinic utilization. IMPLICATIONS FOR CANCER SURVIVORS: As the cancer survivor population grows, increasing access to survivorship clinics based in primary care may help meet these patients' diverse oncologic and general health needs.

6.
Pediatr Nephrol ; 37(10): 2405-2413, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35166919

RESUMEN

BACKGROUND: This study aimed to compare attended home blood pressure (BP) measurements (HBPM) with ambulatory BP monitor (ABPM) readings and examine if level of agreement between measurement modalities differs overall and by subgroup. METHODS: This was a secondary analysis of data from a 2-year, multicenter observational study of children 11-19 years (mean 15, SD = 2.7) with chronic kidney disease. Participants had 3 standardized resting oscillometric home BPs taken by staff followed by 24-h ABPM within 2 weeks of home BP. BP indices (measured BP/95%ile BP) were calculated for mean triplicate attended HBPM and mean ABPM measurements. Paired HBPM and ABPM measurements taken during any of 5 study visits were compared using linear regression with robust standard errors. Generalized estimating equation-based logistic regression determined sensitivity, specificity, negative, and positive predictive values with ABPM as the gold standard. Analyses were conducted for the group overall and by subgroup. RESULTS: A total of 103 participants contributed 251 paired measurements. Indexed systolic BP did not differ between HBPM and daytime APBM (mean difference - 0.002; 95% CI: - 0.006, 0.003); the difference in indexed diastolic BP was minimal (mean difference - 0.033; 95% CI: - 0.040, - 0.025). Overall agreement between HBPM and 24-h ABPM in identifying abnormal BP was high (81.8%). HBPM had higher sensitivity (87.5%) than specificity (77.4%) and greater negative (89.8%) than positive (73.3%) predictive value, and findings were consistent in subgroups. CONCLUSIONS: Attended HBPM may be reasonable for monitoring BP when ABPM is unavailable. The greater accessibility and feasibility of attended HBPM may potentially help improve BP control among at-risk youth. A higher resolution version of the Graphical abstract is available as Supplementary information.


Asunto(s)
Hipertensión , Insuficiencia Renal Crónica , Adolescente , Presión Sanguínea , Determinación de la Presión Sanguínea , Monitoreo Ambulatorio de la Presión Arterial , Niño , Humanos , Hipertensión/diagnóstico , Insuficiencia Renal Crónica/diagnóstico
7.
J Am Coll Health ; 70(3): 830-836, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-32610030

RESUMEN

ObjectiveTo examine the role of executive functioning (EF) in health self-management and the transition to adult health care among college students. Participants: A total of 378 undergraduate students from a public university participated in the study. Methods: Participants reported on EF, health self-management skills, and their readiness to transition to adult care. Mediation analyses were conducted to evaluate indirect effects of EF on readiness to transition via health self-management skills. Results: Students with greater EF difficulties were less ready to transition to adult care. Specific aspects of health self-management (Medication management/Appointment keeping) mediated the relationship between EF and readiness to transition. Conclusion: EF is a key developmental aspect of health self-management and transition readiness. Assessing EF strengths/weaknesses in students with suboptimal health self-management skills may provide valuable information for informing the development of individually-tailored transition plans in university health centers, thereby enhancing developmentally appropriate care during the college years.


Asunto(s)
Automanejo , Transición a la Atención de Adultos , Adulto , Atención a la Salud , Función Ejecutiva , Humanos , Estudiantes , Encuestas y Cuestionarios , Universidades
8.
J Am Coll Health ; 70(8): 2356-2364, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-33400895

RESUMEN

Objective: Examine how executive functioning (EF), healthcare management, and self-efficacy relate to college students' health-related quality of life (HRQOL). Participants: Undergraduates completed questionnaires at baseline (Time 1; n = 387) and 18-24 months later (Time 2; n = 102). Methods: Participants reported on their EF and healthcare management skills at Time 1 and self-efficacy and mental and physical HRQOL at Time 2. Results: Students with fewer EF problems reported higher mental and physical HRQOL at both timepoints and those with higher healthcare management skills had higher mental and physical HRQOL at Time 1. Higher self-efficacy mediated the relation between EF and mental HRQOL, and the relation between healthcare management and mental HRQOL. Conclusions: Findings illustrate two potential pathways by which self-management, in healthcare settings or daily living, contributes to mental HRQOL during emerging adulthood. Assessing EF and healthcare management could help identify those at risk of low HRQOL and provide information that can inform interventions in college settings.


Asunto(s)
Calidad de Vida , Autoeficacia , Humanos , Adulto , Estudiantes , Universidades , Encuestas y Cuestionarios , Atención a la Salud
9.
Pediatr Transplant ; 25(7): e14067, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-34132445

RESUMEN

BACKGROUND: It is widely assumed that pediatric solid organ transplantation results in better caregiver-reported outcomes, including reduced caregiver psychological distress and increased child health-related quality of life (HRQOL), yet little empirical evidence of this expectation exists. The current investigation aims to fill this gap and identify key clinical course factors predictive of caregiver-reported outcomes. METHODS: Forty-nine caregivers of children (Mage  = 10.30 years, SD = 5.43) presenting for kidney, liver, or heart transplant evaluation reported on their psychological distress levels (anxiety, depression, somatization, and global psychological stress) and their children's HRQOL at children's pretransplant evaluations and 6 months post-transplant. Clinical course factors were abstracted via medical chart review. RESULTS: Caregivers did not report significant changes in their psychological distress from pre- to post-transplant but reported significantly improved child HRQOL across most domains (ds = -.45 to -.54). Higher post-transplant caregiver global psychological distress was predicted by older child age, shorter time since diagnosis, and lower pretransplant caregiver-reported child HRQOL even after controlling for pretransplant caregiver psychological distress. Lower post-transplant child total HRQOL was predicted by more post-transplant hospitalizations even after controlling for pretransplant child total HRQOL. CONCLUSIONS: These preliminary results indicate pediatric solid organ transplantation was associated with some improved caregiver-reported outcomes, specifically children's HRQOL, but not caregivers' psychological distress. Linear regression models identify several clinical course and pretransplant factors associated with transplantation outcomes. Characterizing how caregivers view their psychological distress levels and children's HRQOL across the transplantation process could inform family-centered holistic care and support caregiver adaptation to transplantation.


Asunto(s)
Cuidadores/psicología , Calidad de Vida/psicología , Estrés Psicológico/psicología , Receptores de Trasplantes/estadística & datos numéricos , Niño , Femenino , Humanos , Masculino
10.
Patient Educ Couns ; 104(3): 578-584, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-32948401

RESUMEN

OBJECTIVE: To evaluate whether engagement and affective communication among adolescents and young adults (AYAs) with chronic kidney disease (CKD), caregivers, and pediatric nephrology providers during outpatient clinic visits predicts antihypertensive medication adherence. METHODS: AYAs (n = 60, M age = 15.4 years, SD = 2.7, 40% female, 43% African American/Black) and caregivers (n = 60, 73% female) attended audio-recorded clinic visits with pediatric nephrologists (n = 12, 75% female). Recordings were analyzed using global affect ratings of the Roter Interactional Analysis System. Antihypertensive medication adherence was monitored electronically before and after clinic visits. A linear regression model evaluated associations between affect ratings and post-visit adherence. RESULTS: AYAs took 84% of doses (SD = 20%) pre-visit and 82% of doses (SD = 24%) post-visit. Higher AYA engagement (ß = 0.03, p = .01) and the absence of provider negative affect (ß=-0.15, p = .04) were associated with higher post-visit adherence, controlling for pre-visit adherence, AYA sex, age, and race, and clustered by provider. CONCLUSIONS: Post-visit adherence was higher when AYAs were rated as more engaged and providers as less negative. PRACTICE IMPLICATIONS: AYAs with lower engagement may benefit from further adherence assessment. Communication strategies designed to more actively engage AYAs in their care and diminish provider conveyance of negative affect during clinic visits may positively influence adherence among AYAs with CKD.


Asunto(s)
Nefrología , Adolescente , Atención Ambulatoria , Instituciones de Atención Ambulatoria , Niño , Comunicación , Femenino , Humanos , Masculino , Cumplimiento de la Medicación , Relaciones Médico-Paciente , Adulto Joven
11.
J Pediatr Psychol ; 45(5): 498-508, 2020 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-32374379

RESUMEN

OBJECTIVE: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants. METHODS: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.e., neuroticism, conscientiousness), and AYAs' nonadherence to immunosuppressant medications. AYA nonadherence to tacrolimus was objectively assessed via the Medication Level Variability Index (MLVI). RESULTS: Confirmatory factor analyses of the CMBAS revealed a two-factor model: Caregiver Emotional Distress and Caregiver Cognitive Burden/Responsibility. Higher CMBAS scores were related to higher levels of caregiver internalizing symptoms (rs = .28 to .30), neuroticism (r = .27), and caregiver proxy-reported immunosuppressant nonadherence (r = .27), as well as lower levels of caregiver conscientiousness (rs = -.25 to -.26). The CMBAS was not associated with the MLVI (rs = -.13 to -.16). CONCLUSIONS: The CMBAS demonstrated reliability and validity for caregivers of AYAs with solid organ transplants. Findings support the use of the CMBAS as a brief clinical screening tool to identify caregivers' barriers to facilitating AYA medication adherence.


Asunto(s)
Cuidadores , Cumplimiento de la Medicación , Trasplante de Órganos , Adolescente , Adulto , Niño , Humanos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto Joven
12.
J Pediatr Psychol ; 45(5): 540-549, 2020 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-32291448

RESUMEN

OBJECTIVE: Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits. The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients. Demonstrating associations between barriers and personality may help in understanding why barriers are stable over time. Additionally, different personality traits may relate to different types of barriers. METHODS: The sample included 90 AYAs (Mage = 17.31; SD = 2.05; 58% male) who received a kidney (n = 36), liver (n = 29), or heart (n = 25) transplant at least 1 year prior to study enrollment. AYAs completed the Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS). RESULTS: Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r's = .31- .53, p's < .001). The relations differed by personality factor and barrier type. CONCLUSION: Adherence barriers showed medium to large associations with personality traits that are known to be relatively stable. Our findings indicate that the temporal stability of barriers to adherence may be due in part to their association with relatively enduring personality characteristics.


Asunto(s)
Cumplimiento de la Medicación , Personalidad , Receptores de Trasplantes , Adolescente , Femenino , Humanos , Masculino , Autoinforme , Adulto Joven
13.
Health Psychol ; 39(6): 509-518, 2020 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-32202823

RESUMEN

OBJECTIVE: The purpose of this study was to evaluate associations between executive functioning and caregiver adherence monitoring with objective antihypertensive medication adherence over 24 months in adolescents with chronic kidney disease (CKD). METHODS: Adolescents (N = 97, 11-20 years old) with CKD taking antihypertensive medication and their caregivers were recruited from three pediatric nephrology clinics. At baseline, adolescents and caregivers reported on adolescents' executive functioning and caregivers reported on their adherence monitoring. Antihypertensive medication adherence was objectively assessed via electronic monitoring at baseline and every 6 months after for 24 months. Associations between executive functioning, caregiver monitoring, and longitudinal adherence were evaluated with linear mixed models. RESULTS: Up to 38% of adolescents had elevated executive functioning scores indicating more severe impairments, with rates varying by scale and reporter (adolescent vs. caregiver). Caregiver monitoring showed a significant, negative association with adherence, but adolescents' executive functioning was not significantly associated with adherence. Neither variable was associated with the rate of change in adherence over time. CONCLUSIONS: Given that adolescents' executive functioning was not associated with antihypertensive medication adherence or changes in adherence over time, adherence to daily pill-form medications may involve less cognitive effort than more complex medical regimens. Higher levels of caregiver monitoring were unexpectedly associated with lower adherence levels. This unanticipated finding may reflect increased caregiver monitoring efforts when faced with adolescents' medication nonadherence, but this finding warrants further investigation. Adolescents with CKD who are nonadherent may benefit from medication adherence-promoting strategies beyond increasing caregiver monitoring. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Asunto(s)
Cuidadores/psicología , Función Ejecutiva/fisiología , Cumplimiento de la Medicación/psicología , Insuficiencia Renal Crónica/tratamiento farmacológico , Insuficiencia Renal Crónica/psicología , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Adulto Joven
14.
Patient Educ Couns ; 103(8): 1587-1594, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32098744

RESUMEN

OBJECTIVE: To identify differences in perspectives of people with cystic fibrosis (PwCF) and caregivers versus healthcare providers on adherence barriers. Mismatched perspectives may lead to miscommunication and missed opportunities to reduce barriers and improve CF outcomes. METHODS: PwCF, caregivers, and CF providers completed audio-taped, semi-structured interviews about adherence barriers. Interviews were transcribed and coded for themes. Themes were reviewed to identify when PwCF-caregiver perspectives differed from providers'. RESULTS: Participants included 14 adolescents with CF (mean age = 15.89 years, 64 % female, 71 % Caucasian), 14 adults with CF (mean age = 30.03 years, 64 % female, 57 % Caucasian), 29 caregivers (76 % female; 72 % Caucasian), and 42 providers. Four barriers were identified that could generate miscommunication between PwCF-caregivers and providers: Tired = Fatigued/Sleepy versus Tired = Burnout, Vacation and Travel, Knowledge and Skills About CF Regimen, and Daily Habits or Routines. PwCF and caregivers used similar words as providers, but conceptualized barriers differently. PwCF and caregivers discussed barriers pragmatically, however, providers viewed certain barriers more abstractly or unidimensionally, or did not discuss them. CONCLUSIONS: PwCF-caregivers and providers may not align in how they discuss barriers, which may contribute to miscommunication about adherence challenges. PRACTICE IMPLICATIONS: Patient-centered communication strategies may enhance providers' understandings of PwCF-caregiver perspectives on barriers and facilitate adherence interventions.


Asunto(s)
Cuidadores/psicología , Fibrosis Quística/tratamiento farmacológico , Personal de Salud/psicología , Cumplimiento de la Medicación , Calidad de Vida , Adolescente , Adulto , Anciano , Actitud Frente a la Salud , Comunicación , Costo de Enfermedad , Fibrosis Quística/psicología , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Percepción , Investigación Cualitativa , Apoyo Social
15.
Fam Syst Health ; 37(4): 291-301, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31670545

RESUMEN

INTRODUCTION: Better family adjustment following pediatric solid organ transplantation has been associated with a number of beneficial medical and psychosocial outcomes. Yet few studies have examined which pretransplant variables are associated with posttransplant family adjustment. This information can aid in identifying families that may need support going into the transplantation process and those who are at lower risk of worse posttransplant adjustment. METHOD: The sample included 66 parents of children with solid organ transplants and 22 children with solid organ transplants. Information regarding demographic factors, parent and child emotional functioning, and child social support was collected during the child's pretransplant evaluation and information on family adjustment was collected 6 months after transplantation. RESULTS: Results indicated that pretransplant demands such as worse parent and child emotional functioning were related to worse family adjustment 6 months after transplantation. Pretransplant capabilities (i.e., higher family income, parent education level, parent marital status, child social support) were not associated with posttransplant family adjustment. DISCUSSION: Pretransplant family demands such as parent and child emotional functioning, as opposed to family capabilities, should be assessed by family health care team members prior to transplantation because they may be related to worse family adjustment after the transplant. We offer recommendations for ways to assess and, if indicated, intervene upon pretransplant family demands in an effort to decrease the risk of worse posttransplant family adjustment. (PsycINFO Database Record (c) 2019 APA, all rights reserved).


Asunto(s)
Relaciones Familiares/psicología , Trasplante de Órganos/psicología , Relaciones Profesional-Familia , Adolescente , Niño , Femenino , Humanos , Masculino , Trasplante de Órganos/rehabilitación , Distrés Psicológico , Apoyo Social , Adulto Joven
16.
Pediatr Transplant ; 23(8): e13577, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31512800

RESUMEN

This study examined patient-reported sleep quality in a single-center cross-sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty-nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self-report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = -3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = -.31 to -.40), and higher physical and psychosocial HRQOL (r = .33-.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non-Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.


Asunto(s)
Ansiedad/psicología , Depresión/psicología , Trasplante de Órganos/psicología , Complicaciones Posoperatorias/psicología , Calidad de Vida , Sueño , Receptores de Trasplantes/psicología , Adolescente , Ansiedad/epidemiología , Niño , Estudios Transversales , Depresión/epidemiología , Femenino , Disparidades en el Estado de Salud , Humanos , Masculino , Salud de las Minorías , Complicaciones Posoperatorias/epidemiología , Autoinforme
18.
Pediatr Transplant ; 23(2): e13348, 2019 03.
Artículo en Inglés | MEDLINE | ID: mdl-30604516

RESUMEN

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health-related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health-related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents' functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.


Asunto(s)
Trasplante de Órganos , Sueño , Adolescente , Niño , Estudios Transversales , Femenino , Humanos , Masculino , Cumplimiento de la Medicación/psicología , Medición de Resultados Informados por el Paciente , Cuidados Preoperatorios/psicología , Calidad de Vida
19.
Pediatr Nephrol ; 34(1): 97-105, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30116892

RESUMEN

BACKGROUND: Medical provider assessment of nonadherence is known to be inaccurate. Researchers have suggested using a multimethod assessment approach; however, no study has demonstrated how to integrate different measures to improve accuracy. This study aimed to determine if using additional measures improves the accurate identification of nonadherence beyond provider assessment alone. METHODS: Eighty-seven adolescents and young adults (AYAs), age 11-19 years, with chronic kidney disease (CKD) [stage 1-5/end-stage renal disease (ESRD)] and prescribed antihypertensive medication, their caregivers, and 17 medical providers participated in the multisite study. Five adherence measures were obtained: provider report, AYA report, caregiver report, electronic medication monitoring (MEMS), and pharmacy refill data [medication possession ratio (MPR)]. Concordance was calculated using kappa statistic. Sensitivity, specificity, positive predictive power, and negative predictive power were calculated using MEMS as the criterion for measuring adherence. RESULTS: There was poor to fair concordance (kappas = 0.12-0.54), with 35-61% of AYAs classified as nonadherent depending on the measure. While both providers and MEMS classified 35% of the AYAs as nonadherent, sensitivity (0.57) and specificity (0.77) demonstrated poor agreement between the two measures on identifying which AYAs were nonadherent. Combining provider report of nonadherence and MPR < 75% resulted in the highest sensitivity for identifying nonadherence (0.90) and negative predictive power (0.88). CONCLUSIONS: Nonadherence is prevalent in AYAs with CKD. Providers inaccurately identify nonadherence, leading to missed opportunities to intervene. Our study demonstrates the benefit to utilizing a multimethod approach to identify nonadherence in patients with chronic disease, an essential first step to reduce nonadherence.


Asunto(s)
Antihipertensivos/uso terapéutico , Hipertensión/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Insuficiencia Renal Crónica/tratamiento farmacológico , Adolescente , Cuidadores/estadística & datos numéricos , Niño , Progresión de la Enfermedad , Prescripciones de Medicamentos/estadística & datos numéricos , Registros Electrónicos de Salud/estadística & datos numéricos , Estudios de Factibilidad , Femenino , Humanos , Hipertensión/etiología , Estudios Longitudinales , Masculino , Insuficiencia Renal Crónica/complicaciones , Autoinforme/estadística & datos numéricos , Sensibilidad y Especificidad , Adulto Joven
20.
J Pediatr Psychol ; 44(1): 40-51, 2019 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-30252092

RESUMEN

Objective: To investigate longitudinal associations of health beliefs, which included self-efficacy, outcome expectancies, and perceived barriers, and demographic risk factors (i.e., age, gender, race, and family income) with antihypertensive medication adherence in adolescents with chronic kidney disease (CKD) over 24 months. Method: The sample included 114 adolescents (M age = 15.03 years, SD = 2.44) diagnosed with CKD. Adolescents reported their self-efficacy for taking medications, medication outcome expectancies, and barriers to adherence at baseline and 12 and 24 months after baseline. Antihypertensive medication adherence was assessed via electronic monitoring for 2 weeks at baseline and 6, 12, 18, and 24 months after baseline. Results: Adherence increased and then decreased over the 2-year study period (inverted U-shape). Self-efficacy, outcome expectancies, and barriers did not change over time. Older adolescent age, female gender, African American race, <$50,000 annual family income, and public health insurance were associated with lower adherence. However, family income was the primary demographic risk factor that predicted adherence over time (≥$50,000 annual family income was longitudinally associated with higher adherence). Higher self-efficacy and more positive and less negative outcome expectancies across time were also associated with higher antihypertensive medication adherence across time. Conclusions: Clinical interventions should be developed to target medication self-efficacy and outcome expectancies to improve long-term antihypertensive medication adherence in adolescents with CKD. Family income may be considered when conceptualizing contextual factors that likely contribute to adolescents' consistent challenges with medication adherence over time.


Asunto(s)
Antihipertensivos/uso terapéutico , Actitud Frente a la Salud , Hipertensión/tratamiento farmacológico , Cumplimiento de la Medicación , Insuficiencia Renal Crónica/complicaciones , Autoeficacia , Adolescente , Niño , Femenino , Humanos , Hipertensión/complicaciones , Renta , Masculino , Factores de Riesgo
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