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1.
World J Urol ; 42(1): 295, 2024 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-38709300

RESUMO

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.


Assuntos
Antidepressivos , Adesão à Medicação , Disfunções Sexuais Fisiológicas , Humanos , Masculino , Estudos Transversais , Adulto Jovem , Disfunções Sexuais Fisiológicas/induzido quimicamente , Adulto , Antidepressivos/efeitos adversos , Antidepressivos/uso terapêutico , Mirtazapina/uso terapêutico , Inibidores Seletivos de Recaptação de Serotonina/efeitos adversos , Inibidores Seletivos de Recaptação de Serotonina/uso terapêutico , Bupropiona/efeitos adversos , Bupropiona/uso terapêutico
2.
JMIR Mhealth Uhealth ; 12: e49024, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38717433

RESUMO

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.


Assuntos
Terapia Comportamental , Autogestão , Telemedicina , Cooperação e Adesão ao Tratamento , Humanos , Autogestão/métodos , Autogestão/psicologia , Autogestão/estatística & dados numéricos , Telemedicina/métodos , Telemedicina/estatística & dados numéricos , Telemedicina/normas , Cooperação e Adesão ao Tratamento/estatística & dados numéricos , Cooperação e Adesão ao Tratamento/psicologia , Terapia Comportamental/métodos , Terapia Comportamental/instrumentação , Terapia Comportamental/estatística & dados numéricos , Terapia Comportamental/normas , Doença Crônica/terapia , Doença Crônica/psicologia
3.
JAMA Netw Open ; 7(4): e246872, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38630475

RESUMO

Importance: Despite a growing population of survivors of lung cancer, there is limited understanding of the survivorship journey. Survivors of lung cancer experience unmet physical, social, emotional, and medical needs regardless of stage at diagnosis or treatment modalities. Objective: To investigate the association of unmet needs with quality of life (QOL) and financial toxicity (FT) among survivors of lung cancer. Design, Setting, and Participants: This survey study was conducted at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center thoracic oncology clinics between December 1, 2020, and September 30, 2021, to assess needs (physical, social, emotional, and medical), QOL, and FT among survivors of lung cancer. Patients had non-small cell lung cancer of any stage and were alive longer than 1 year from diagnosis. A cross-sectional survey was administered, which consisted of an adapted needs survey developed by the Mayo Survey Research Center, the Comprehensive Score for Financial Toxicity measure, and the European Organization for Research and Treatment of Cancer QLQ-C30 QOL scale. Demographic and clinical information was obtained through retrospective medical record review. Data analysis was performed between May 9 and December 8, 2022. Main Outcomes and Measures: Separate multiple linear regression models, treating QOL and FT as dependent variables, were performed to assess the adjusted association of total number of unmet needs and type of unmet need (physical, emotional, social, or medical) with QOL and FT. Results: Of the 360 survivors of lung cancer approached, 232 completed the survey and were included in this study. These 232 respondents had a median age of 69 (IQR, 60.5-75.0) years. Most respondents were women (144 [62.1%]), were married (165 [71.1%]), and had stage III or IV lung cancer (140 [60.3%]). Race and ethnicity was reported as Black (33 [14.2%]), White (172 [74.1%]), or other race or ethnicity (27 [11.6%]). A higher number of total unmet needs was associated with lower QOL (ß [SE], -1.37 [0.18]; P < .001) and higher FT (ß [SE], -0.33 [0.45]; P < .001). In the context of needs domains, greater unmet physical needs (ß [SE], -1.24 [0.54]; P = .02), social needs (ß [SE], -3.60 [1.34]; P = .01), and medical needs (ß [SE], -2.66 [0.98]; P = .01) were associated with lower QOL, whereas only greater social needs was associated with higher FT (ß [SE], -3.40 [0.53]; P < .001). Conclusions and Relevance: The findings of this survey study suggest that among survivors of lung cancer, unmet needs were associated with lower QOL and higher FT. Future studies evaluating targeted interventions to address these unmet needs may improve QOL and FT among survivors of lung cancer.


Assuntos
Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Qualidade de Vida , Estudos Transversais , Estresse Financeiro , Estudos Retrospectivos , Sobreviventes
4.
Cancer Med ; 13(5): e7090, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38466037

RESUMO

BACKGROUND: Breast cancer patients experienced heightened anxiety during the pandemic. Also, modifications to clinical trial activities allowing for virtual platforms, local assessments, and greater flexibility were introduced to facilitate participation. We sought to evaluate the association between pandemic-related anxiety and willingness to participate in trials and how pandemic-era modifications to trial activities affect the decision to participate. METHODS: We conducted an online survey from August to September, 2021 of patients with breast cancer assessing pandemic-related anxiety; clinical trials knowledge and attitudes; willingness to participate during and before the pandemic; and how each modification affects the decision to participate. Fisher's exact tests evaluated differences in proportions and two-sample t-tests evaluated differences in means. The association of pandemic-related anxiety with a decline in willingness to participate during compared to prior to the pandemic was modeled using logistic regression. RESULTS: Among 385 respondents who completed the survey, 81% reported moderate-severe pandemic-related anxiety. Mean willingness to participate in a trial was lower during the pandemic than prior [2.97 (SD 1.17) vs. 3.10 (SD 1.09), (p < 0.001)]. Severe anxiety was associated with higher odds of diminished willingness to participate during the pandemic compared to prior (OR 5.07). Each of the modifications, with the exception of opting out of research-only blood tests, were endorsed by >50% of respondents as strategies that would increase their likelihood of deciding to participate. CONCLUSIONS: While pandemic-related anxiety was associated with diminished willingness to participate in trials, the leading reasons for reluctance to consider trial participation were unrelated to the pandemic but included worries about not getting the best treatment, side effects, and delaying care. Patients view trial modifications favorably, supporting continuation of these modifications, as endorsed by the National Cancer Institute and others.


Assuntos
Neoplasias da Mama , Ensaios Clínicos como Assunto , Pandemias , Participação do Paciente , Feminino , Humanos , Ansiedade/etiologia , Neoplasias da Mama/terapia , Inquéritos e Questionários
5.
J Natl Compr Canc Netw ; 22(1D): e237072, 2024 01 04.
Artigo em Inglês | MEDLINE | ID: mdl-38176099

RESUMO

BACKGROUND: Newer therapies prolong survival for patients with lung cancer. Beyond extending survival, the needs of lung cancer (LC) survivors are poorly described. METHODS: We conducted a single-institution needs assessment survey of LC survivors alive ≥1 year from diagnosis. Needs were rated on a 5-point Likert scale for 4 domains (physical, social, emotional, and medical). Multiple regression models identified demographic or treatment characteristics associated with more needs in each category. A subset analysis of survivors with metastatic LC was performed. RESULTS: Of 360 patients approached, 235 surveys were completed. Among completed survey respondents, the median age was 69 years; most were female (62%), married (71%), and White (74%); and 41% had stage IV cancer. Finding support resources (34%) was the most common medical need. Fatigue (70%), sleep disturbance (60%), memory and concentration (57.5%), weakness (54%), and trouble breathing (51%) were physical needs affecting more than half of respondents. The most common social need was managing daily activities (42%). Emotional needs were highly prevalent, with 79% of respondents reporting a fear of recurrence and 74.5% reporting living with uncertainty. Multiple regression analysis identified that receipt of multiple lines of systemic therapy and lower household income were associated with higher physical and social needs. Younger age was associated with having a greater number of social and emotional needs. Similar results were found in the subset of survivors with metastatic disease at diagnosis. CONCLUSIONS: The needs of LC survivors are diverse across multiple domains. Several clinical and demographic factors are independently associated with higher numbers of patient-reported needs. Our study identifies critical gaps in survivorship care for LC survivors with all stages of disease and highlights areas of future intervention.


Assuntos
Sobreviventes de Câncer , Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Humanos , Feminino , Idoso , Masculino , Neoplasias Pulmonares/epidemiologia , Neoplasias Pulmonares/terapia , Sobrevivência , Sobreviventes/psicologia , Carcinoma Pulmonar de Células não Pequenas/complicações , Carcinoma Pulmonar de Células não Pequenas/epidemiologia , Carcinoma Pulmonar de Células não Pequenas/terapia , Inquéritos e Questionários , Pulmão , Qualidade de Vida/psicologia , Necessidades e Demandas de Serviços de Saúde
6.
Clin Pract Pediatr Psychol ; 11(2): 217-227, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37583937

RESUMO

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.

7.
Pediatr Nephrol ; 38(11): 3791-3802, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37306720

RESUMO

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.


Assuntos
Adesão à Medicação , Insuficiência Renal Crônica , Adolescente , Criança , Humanos , Anti-Hipertensivos/uso terapêutico , Hábitos , Insuficiência Renal Crônica/tratamento farmacológico , Adulto Jovem
8.
J Cancer Surviv ; 2023 Apr 24.
Artigo em Inglês | MEDLINE | ID: mdl-37093516

RESUMO

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.

9.
J Pediatr Orthop ; 42(10): 582-588, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36112844

RESUMO

PURPOSE: The COVID-19 pandemic affected pediatric fracture injury patterns and volume. There is a paucity of research evaluating this trend throughout the pandemic and also follow-up to orthopaedic subspecialty care after emergency fracture management. METHODS: This retrospective cohort study reviewed patients 2 to 18 years of age presenting for fracture care to an urban pediatric emergency department. We assessed patient demographics, clinical care, and follow-up to surgical subspecialist. Time periods investigated included March 30 to September 4, 2020 (pandemic), March 30 to September 4, 2019, and March 30 to September 4, 2018 (prepandemic). Subanalysis within the pandemic was during the "stay-at-home order" verses the phased re-opening of the state. Descriptive statistical analysis, Pearson's χ 2 or Fisher exact tests, and Mann-Whitney U tests were performed. RESULTS: In this population, fractures overall declined by 40% (n=211) during the pandemic compared with 2019 (n=349) and 28% compared with 2018 (n=292). Lower extremity fractures accounted for a greater percentage of injuries during the pandemic compared with prepandemic. Time to surgical subspecialty follow-up was shortest during the 2020 pandemic peak at 9 days and was significantly longer during phased reopening (phase 1: 18 d, P =0.001; phase 2: 14 d, P =0.005). These patterns were also consistent for days to repeat imaging. CONCLUSIONS: We found differences in fracture prevalence, mechanisms, and follow-up care during the pandemic. Time to subspecialty follow-up care was longer during pandemic phased reopening despite overall fewer fractures. Plans to absorb postponed visits and efficiently engage redeployed staff may be necessary to address difficulties in follow-up orthopaedic management during public health crises. LEVEL OF EVIDENCE: Level II.


Assuntos
COVID-19 , Fraturas Ósseas , Assistência ao Convalescente , COVID-19/epidemiologia , Criança , Serviço Hospitalar de Emergência , Fraturas Ósseas/epidemiologia , Fraturas Ósseas/terapia , Humanos , Pandemias , Estudos Retrospectivos
10.
Pediatr Nephrol ; 37(10): 2405-2413, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35166919

RESUMO

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.


Assuntos
Hipertensão , Insuficiência Renal Crônica , Adolescente , Pressão Sanguínea , Determinação da Pressão Arterial , Monitorização Ambulatorial da Pressão Arterial , Criança , Humanos , Hipertensão/diagnóstico , Insuficiência Renal Crônica/diagnóstico
11.
J Am Coll Health ; 70(3): 830-836, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-32610030

RESUMO

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.


Assuntos
Autogestão , Transição para Assistência do Adulto , Adulto , Atenção à Saúde , Função Executiva , Humanos , Estudantes , Inquéritos e Questionários , Universidades
12.
J Am Coll Health ; 70(8): 2356-2364, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33400895

RESUMO

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.


Assuntos
Qualidade de Vida , Autoeficácia , Humanos , Adulto , Estudantes , Universidades , Inquéritos e Questionários , Atenção à Saúde
13.
Pediatr Transplant ; 26(2): e14176, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34723407

RESUMO

BACKGROUND: Pediatric solid organ transplant recipients are susceptible to posttraumatic stress symptoms (PTSS), given the presence of a life-threatening chronic medical condition and potential for complications. However, little is known about what individual characteristics are associated with an increased risk for PTSS among youth who received an organ transplant. The aim of the current study was to evaluate PTSS and its associations with executive functioning (EF) and personality (i.e., neuroticism and conscientiousness) among adolescents with solid organ transplants. METHODS: Fifty-three adolescents (Mage  = 16.40, SD = 1.60) with a kidney, heart, or liver transplant completed self-report measures of PTSS and personality, whereas caregivers completed a caregiver-proxy report of adolescent EF. RESULTS: Twenty-two percent of adolescent transplant recipients reported clinically significant levels of PTSS. Higher EF difficulties and neuroticism levels, and lower conscientiousness levels were significantly associated with higher PTSS (rs -.34 to .64). Simple slope analyses revealed that adolescents with both high EF impairment and high levels of neuroticism demonstrated the highest PTSS (t = 3.47; p < .001). CONCLUSIONS: Most adolescent transplant recipients in the present study did not report clinically significant levels of PTSS; however, those with high neuroticism and greater EF difficulties may be particularly vulnerable to PTSS following organ transplantation. Following transplantation, medical providers should assess for PTSS and risk factors for developing PTSS. Identification of those at risk for PTSS is critical, given the strong associations between PTSS and certain medical outcomes (e.g., medication nonadherence) among these youth.


Assuntos
Função Executiva , Transplante de Órgãos/psicologia , Personalidade , Psicologia do Adolescente , Transtornos de Estresse Pós-Traumáticos/etiologia , Transplantados/psicologia , Adolescente , Feminino , Humanos , Masculino
14.
Pediatr Transplant ; 25(7): e14067, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34132445

RESUMO

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.


Assuntos
Cuidadores/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/psicologia , Transplantados/estatística & dados numéricos , Criança , Feminino , Humanos , Masculino
15.
Patient Educ Couns ; 104(3): 578-584, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32948401

RESUMO

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.


Assuntos
Nefrologia , Adolescente , Assistência Ambulatorial , Instituições de Assistência Ambulatorial , Criança , Comunicação , Feminino , Humanos , Masculino , Adesão à Medicação , Relações Médico-Paciente , Adulto Jovem
16.
J Med Internet Res ; 22(8): e19861, 2020 08 14.
Artigo em Inglês | MEDLINE | ID: mdl-32795983

RESUMO

BACKGROUND: Up to one-third of adolescents and young adults (11-21 years old) with chronic kidney disease exhibit suboptimal rates of adherence to renal-protective antihypertensive medications. Mobile health interventions may promote higher adherence to these medicines in these individuals, but empirical research is needed to inform best practices for applying these modalities. OBJECTIVE: In this multiphase investigation, we developed and tested a theoretically informed text messaging intervention based on the COM-B model, a well-established health intervention framework stating that capability, opportunity, and motivation interactively modify health behaviors, to improve participants' antihypertensive medication adherence in a pilot randomized controlled trial. Qualitative data on user experiences were obtained. METHODS: In phase 1, intervention messages (Reminder+COM-B Message) were developed via stakeholder engagement of participants and pediatric nephrologists. In phase 2, the Reminder+COM-B Message intervention was tested against a Reminder-only Message active control condition in an 8-week pilot randomized controlled trial. The primary outcome was daily electronically monitored antihypertensive medication adherence and secondary outcomes included pre-post participant surveys of adherence self-efficacy, adherence barriers, outcome expectancies for taking medicine, and motivation for and importance of taking medicine. In phase 3, qualitative interviews related to user experiences were conducted with participants in the Reminder+COM-B Message intervention group. RESULTS: Following phase 1, 34 participants (mean age 16.59 years, 41% female, 38% African American/Black, 35% hypertension diagnosis) completed the phase 2 pilot randomized controlled trial (n=18 in the Reminder+COM-B Message intervention group, n=16 in the Reminder-only Message active control group). All participants in the Reminder+COM-B Message intervention group completed a phase 3 qualitative interview. Overall, study procedures were feasible and the Reminder+COM-B Message intervention was acceptable to the participants (eg, 15/18 participants reported reading the majority of messages sent to them, 0/18 reported that the messages reduced their desire to take medicine). Prerandomization, there were no significant group differences in the rate of change in daily adherence over time. However, postrandomization, there was a significant group by time interaction (B=.01, P=.04) in which daily adherence decreased significantly over time in the Reminder-only Message active control group but remained stable in the Reminder+COM-B Message intervention group. There were no significant differences between groups in pre-post changes in survey responses. Qualitative interviews revealed participants' perceptions of how the Reminder+COM-B Message intervention changed adherence behavior and highlighted several areas for improving the intervention (eg, adapt messaging timing, intensity, and content to match daily adherence, send praise when medicine is taken). CONCLUSIONS: The Reminder+COM-B Message intervention was feasible and acceptable to adolescents/young adults and demonstrated potential to promote participants' daily medication adherence beyond simple reminders. Further research is needed to determine the Reminder+COM-B Message intervention's mechanisms of adherence behavior change and to incorporate qualitative participant feedback into a modified version of this intervention to enhance its acceptability. TRIAL REGISTRATION: ClinicalTrials.gov NCT03651596; https://clinicaltrials.gov/ct2/show/NCT03651596.


Assuntos
Intervenção Baseada em Internet/tendências , Insuficiência Renal Crônica/epidemiologia , Envio de Mensagens de Texto/normas , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Projetos Piloto , Inquéritos e Questionários , Adulto Jovem
17.
J Pediatr Psychol ; 45(5): 498-508, 2020 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-32374379

RESUMO

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.


Assuntos
Cuidadores , Adesão à Medicação , Transplante de Órgãos , Adolescente , Adulto , Criança , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
18.
J Pediatr Psychol ; 45(5): 540-549, 2020 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-32291448

RESUMO

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.


Assuntos
Adesão à Medicação , Personalidade , Transplantados , Adolescente , Feminino , Humanos , Masculino , Autorrelato , Adulto Jovem
19.
Health Psychol ; 39(6): 509-518, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32202823

RESUMO

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).


Assuntos
Cuidadores/psicologia , Função Executiva/fisiologia , Adesão à Medicação/psicologia , Insuficiência Renal Crônica/tratamento farmacológico , Insuficiência Renal Crônica/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Adulto Jovem
20.
Patient Educ Couns ; 103(8): 1587-1594, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32098744

RESUMO

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.


Assuntos
Cuidadores/psicologia , Fibrose Cística/tratamento farmacológico , Pessoal de Saúde/psicologia , Adesão à Medicação , Qualidade de Vida , Adolescente , Adulto , Idoso , Atitude Frente a Saúde , Comunicação , Efeitos Psicossociais da Doença , Fibrose Cística/psicologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Percepção , Pesquisa Qualitativa , Apoio Social
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