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1.
ObjectiveAmong adolescents and young adults (AYAs) with chronic illness, effective provider communication is essential for patient-centered care during a sensitive developmental period. However, communication in chronic illness care for AYAs is not well studied. Our objectives were to describe the provider communication skills in pediatric chronic kidney disease (CKD) care visits; and determine if communication skills differ by AYA characteristics.MethodsWe adapted a global consultation rating system for pediatric subspecialty care using audiotaped clinic encounters of 18 pediatric nephrologists with 99 AYAs (age M(SD) = 14.9(2.6)) with CKD stages 1–5 and 96 caregivers. We hypothesized that provider communication skills would differ by AYA characteristics (age, gender, and race).ResultsThe strongest provider skills included initiating the session and developing rapport; lowest rated skills were asking patient’s perspective and checking understanding. Communication scores did not consistently differ by AYA age or race, but were rated higher with female AYAs in several domains (ps<0.05).ConclusionsPediatric providers generally had adequate or good communication scores with AYAs, but improvement in certain skills, particularly with male AYAs, may further support patient-centered care.Practice implicationsTo achieve consistent, patient-centered communication with AYAs, an observation-based global assessment may identify areas for provider improvement.  相似文献   

2.
ObjectiveTo compare the relative quantity of talk between providers, caregivers, and adolescents and young adults (AYAs) with chronic kidney disease (CKD) and how communication differs by age.MethodsDuring nephrology clinic visits, conversations between AYAs with CKD (N = 99, ages 11–20, median = 15), their caregivers, and providers (N = 19) were audiotaped and coded using the Roter Interaction Analysis System. Linear mixed models tested AYA age differences in talk frequency by AYAs, caregivers, and providers. Post-hoc analyses tested differences in talk using AYA age groups.ResultsDuring clinic visits, providers spoke the most (63.7%), and caregivers spoke more (22.6%) than AYAs (13.7%). Overall talk differed by AYA age in AYAs (p < 0.001) and caregivers (p < 0.05), but not providers. Higher AYA age was associated with more AYA talk (biomedical information-giving, partnering, rapport-oriented) and less caregiver biomedical information-giving (ps < 0.001–0.05). In post-hoc analyses, young adults talked more than adolescents; caregiver talk decreased in the middle-adolescent group.ConclusionsIncreases in AYA talk occur primarily in young adulthood, whereas caregiver talk decreases in middle adolescence. This may indicate an appropriate developmental shift but raises concerns about conversational gaps during middle-adolescence.Practice implicationsDuring transition-oriented treatment planning, providers should engage both AYAs and caregivers to avoid potential gaps in communication.  相似文献   

3.
ObjectiveAdolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer.Methods65 AYAs (ages 12–21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA’s transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups.Results42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition.ConclusionsAll AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare.Practice implicationsEmphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.  相似文献   

4.
ObjectiveTo determine associations between patient affect and physician liking of the patient, and their associations with physician behavior and patient-reported outcomes.MethodsStructural equation modeling based on coding of 497 videotaped hospital encounters, with questionnaires assessing pre-visit patient affect, post-visit patient affect and encounter evaluations, and physician liking of the patient, involving 71 physicians.ResultsIn first visits, patient reported outcomes were strongly correlated with physician behavior and less so with physician liking, while in later visits, patient reported outcomes were directly related to physician liking and not mediated by physician behavior. Physician liking predicted physician behavior, more for female physicians in first visits. Patient negative affect before the visit was negatively associated with male physicians’ liking. When acquainted, both patient positive and negative affect were associated with physician liking.ConclusionPhysician liking of the patient plays a dynamic role in a consultation, is influenced by patient pre-encounter affect, and influences physician behavior. The dynamics are different in first and later visits, and influenced by physician gender.Practice implicationsPhysicians should be aware how patient affect influences their behavior, and administrators should take any prior relationship between patient and physician into account when evaluating patient reported outcomes.  相似文献   

5.
BackgroundAdolescents and young adults (AYAs) seek increased autonomy and self-efficacy. AYAs must learn to manage their medical care in preparation for transition to adult healthcare. Our team’s research found that AYAs need more information about their disease and treatmentObjectiveTo develop and test the usability of a decision tool “iBDecide” to promote shared decision-making among AYAs with ulcerative colitis (UC) who are beginning to manage their treatment and medicationsMethodsUsing design thinking, 14 AYAs, 6 healthcare providers, 4 designers, a social worker, and a human factors researcher developed a shared decision-making tool. The System Usability Scale (SUS) assessed usabilityResultsAYAs preferred an application with information on treatment, medication, nutrition, and symptom tracking. A web-based application, ‘iBDecide’, was developed to include these options. SUS results indicated that participants on average “agree” that: ‘they would use iBDecide’ and that ‘it was easy to use and streamlined’. The mean SUS score was 78.25 (+/?12.91), range 70–90DiscussionIncluding AYAs in tool development helps ensure usability and improves engagement in shared decision-making. Co-designed tools may remove barriers for engagement and skill-building needed for the transition to adult care.ConclusioniBDecide can stimulate AYA engagement in shared decision-making in treating UC.  相似文献   

6.
PurposeWe described sun protective behaviors in adolescents and young adults (AYA) compared to older adults.MethodsWe used data from the 2013–2018 National Health and Nutrition Examination Survey, a nationally representative samples of the civilian, noninstitutionalized US population (10,710 respondents aged between 20 and 59 and without a history of skin cancer diagnoses). The primary exposure for the study was age group: aged 20–39 defined as AYA and aged 40–59 as adults. The outcome variable was sun protective behaviors: stay in the shade, wear a long-sleeved shirt, use sunscreen, at least one of the three; and all three measures. Multivariable logistic regression models were used to assess association between age group and sun protective behaviors adjusting for sociodemographic factors.ResultsOverall, 51.3% of respondents were AYA, 76.1% reported staying in the shade, 50.9% using sunscreen, 33.3% wearing long-sleeved clothes, 88.1% engaging in one of the three behaviors, and 17.1% engaging in all three behaviors. In the adjusted models, the odds of engaging in all three behaviors among AYAs was 28% (aOR: 0.72, 95% CI: 0.62–0.83) lower than adult respondents. Compared to adults, AYAs were 22% less likely to wear long sleeved clothes (aOR: 0.78, 95% CI: 0.70–0.87). There were no significant differences in the odds of engaging in at least one sun protective behavior, using sunscreen, and staying in the shade between AYAs and adults.ConclusionsMore targeted interventions need to be implemented to decrease the risk of skin cancer in the AYA population.  相似文献   

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ObjectiveTo 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.MethodsPwCF, 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’.ResultsParticipants 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.ConclusionsPwCF-caregivers and providers may not align in how they discuss barriers, which may contribute to miscommunication about adherence challenges.Practice implicationsPatient-centered communication strategies may enhance providers’ understandings of PwCF-caregiver perspectives on barriers and facilitate adherence interventions.  相似文献   

9.
Hematopoietic cell transplantation (HCT) is physically and psychologically challenging, potentially exposing patients to quality-of-life (QoL) impairments. Adolescent and young adults (AYAs, aged 15 to 39 years) are a vulnerable cohort facing multiple hurdles due to dynamic changes in several aspects of their lives. The AYA population may be particularly prone to QoL issues during HCT. We hypothesized that due to the unique psychosocial challenges faced by AYAs, they would have an inferior quality of life. We studied QoL differences between AYA (aged 15 to 39 years) and older adult (aged 40 to 60 years) allogeneic HCT recipients before and after HCT. Additionally, we determined if pre-HCT QoL for AYA transplant recipients changed over time. QoL data were collected prospectively before and after transplant on 431 recipients aged 15 to 60 years from June 2003 through December 2017 using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT) questionnaire. Repeated-measures analysis of variance was used to assess differences among age groups. Pearson correlation (r) was used to determine if baseline QoL had improved after HCT from June 2003 through December 2017 in the AYA cohort. QoL did not differ among younger AYAs, older AYAs, or older adults at any time in the first year after allogeneic HCT. At 1 year post-HCT, total FACT-BMT score and all FACT-BMT domains except physical well-being improved from pre-HCT in all age groups. From 2003 to 2017, AYA allogeneic recipients experienced modest improvement in additional concerns (r = 0.26, P = .003), trial outcome index (r = 0.23, P = .008), and total FACT-BMT score (r = 0.19, P = .031), although no improvements were seen in physical, social, emotional, or functional well-being. Contrary to our hypothesis, we found that QoL in the AYA population is similar to that of older adults before and after HCT. Improvements in QoL of AYA allogeneic patients since 2003 were driven by the additional concerns domain, which addresses multiple psychosocial aspects such as vocation, hobbies, and acceptance of illness. Continued efforts to tailor treatment and support for AYA HCT recipients is critical to improving QoL outcomes.  相似文献   

10.
《Genetics in medicine》2015,17(1):51-57
PurposeThe purpose of this study was to assess potential differences in genetic counseling services delivered by board-certified genetic health-care providers versus non–genetic health-care providers. We evaluated (i) patient recall and content of pretest genetic counseling for hereditary breast and ovarian cancer and (ii) whether full BRCA1 and 2 gene sequencing was performed when less expensive single-site or Ashkenazi Jewish founder mutation testing may have been sufficient.MethodsParticipants completed a questionnaire and provided BRCA test reports that included testing provider and type of test. Chi-square tests and logistic regression were used for analysis.ResultsOf 473 participants, >90% were white, female, and BRCA mutation carriers. Of the 276 (58%) with genetic health-care provider involvement, 97% recalled a pretest discussion as compared with 59% of those without genetic health-care provider involvement (P < 0.001). Among the subgroup who recalled a pretest discussion (n = 385), those with genetic health-care provider involvement indicated higher adherence to eight recognized genetic counseling elements, four of which were statistically significant. Furthermore, involvement of a genetic health-care provider halved the likelihood that comprehensive BRCA testing was ordered among the 266 for whom single-site or multisite-3 testing may have been sufficient (P = 0.02).ConclusionOur results suggest that genetic health-care provider involvement is associated with adherence to nationally recommended genetic counseling practices and could potentially reduce costs of BRCA genetic testing.Genet Med advance online publication 12 June 2014  相似文献   

11.
PurposeThe initial breast cancer genetic counseling visit is mainly educational, with large amounts of relatively standard information and little counselee participation. Counselors might provide more counselee-specific information if counselees would participate more. A pre-visit website providing computer-tailored information and a question prompt sheet (QPS) might help counselees to pursue a more active role.MethodsCounselees were randomized to receive usual care (UC) or UC plus the pre-visit website. The QPS questions were sent to the counselor before the visit. All counselees completed a baseline questionnaire, and visits were videotaped.ResultsIntervention-group counselees (n = 102) did not ask more questions than UC-group counselees (n = 90). However, counselees in the intervention group more often shared their agenda (B = 10.37; confidence interval (CI) 2.68–18.06; P = 0.01), directed the communication (B = 0.41; CI 0.28–0.53; P = 0.01), and paraphrased the counselors’ words (B = 5.18; CI 0.43–9.92; P = 0.03). Counselors introduced and answered the QPS questions. As a result, they provided more information about the topics of these questions, and the information provided was more specific to whether there was an indication for DNA testing.ConclusionA pre-visit website with QPS helped counselees to communicate more assertively. As a result, the information provided was more counselee specific, without affecting the visit duration.Genet Med 2012:14(5):535–542  相似文献   

12.
ObjectiveTo describe the frequency, roles, and utility of family companion involvement in the care of patients with Heart Failure (HF) care and to examine the association between audiotaped patient, companion, and provider communication behaviors.MethodsWe collected survey data and audiotaped a single medical visit for 93 HF patients (36 brought a companion into the examination room) and their cardiology provider. Communication data was analyzed using the Roter Interaction Analysis System.ResultsThere were 32% more positive rapport-building statements (p < 0.01) and almost three times as many social rapport-building statements (p < 0.01) from patients and companions in accompanied visits versus unaccompanied patient visits. There were less psychosocial information giving statements in accompanied visits compared to unaccompanied patient visits (p < 0.01.) Providers made 25% more biomedical information giving statements (p = 0.04) and almost three times more social rapport-building statements (p < 0.01) in accompanied visits. Providers asked fewer biomedical and psychosocial questions in accompanied versus unaccompanied visits. Providers made 16% fewer partnership-building statements in accompanied versus unaccompanied visits (p = 0.01).ConclusionsOur findings are mixed regarding the benefits of accompaniment for facilitating patient-provider communication based on survey and audiotaped data.Practice implicationsStrategies to enhance engagement during visits, such as pre-visit question prompt lists, may be beneficial.  相似文献   

13.
《Genetics in medicine》2021,23(1):163-173
PurposeWe sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool.MethodsIn a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care. The primary outcome was adherence to five health evaluations indicated by national guidelines for DS. DSC2U is completed electronically, in all mobile settings, by caregivers at home. The outputs—personalized checklists—are used during annual wellness visits with the patient’s PCP.ResultsA total of 213 participants completed a 7-month follow-up evaluation. In the intention-to-treat analysis, the intervention group had a 1.6-fold increase in the number of indicated evaluations that were recommended by the primary care provider or completed compared with controls. Both caregivers and PCPs reported high levels of satisfaction with DSC2U.ConclusionsDSC2U improved adherence to the national DS health-care guidelines with a novel modality that was highly valued by both caregivers and PCPs.  相似文献   

14.
ObjectiveWe examined users’ preferences for and engagement with text messages delivered as part of an emergency department (ED)-based intervention to improve antihypertensive medication adherence.MethodsWe recruited ED patients with elevated blood pressure for a pilot randomized trial evaluating a medication adherence intervention with text messages. Intervention participants chose text content and frequency, received texts for 45 days, and completed a feedback survey. We defined engagement via responses to texts. We examined participant characteristics associated with text preferences, engagement, and feedback.ResultsParticipants (N = 101) were 57% female and 46% non-White. Most participants (71%) chose to receive both reminder and informational texts; 94% chose reminder texts once per day and 97% chose informational texts three times per week. Median text message response rate was 56% (IQR 26–80%). Participants who were Black (p < 0.01), had lower income (p = 0.03), or had lower medication adherence (p < 0.01) rated the program as more helpful and wanted additional functionalities for adherence support.Conclusions and Practice ImplicationsWhile overall engagement was modest, participants at risk of worse health outcomes expressed more value and interest in the program. Findings inform the design of text messaging interventions for antihypertensive medication adherence and support targeting vulnerable patients to reduce health disparities.Clinical trials registrationNCT02672787  相似文献   

15.

Objective

To examine the associations of several characteristics with patients’ trust in physician and the healthcare system.

Methods

A prospective cohort of patients were followed after an exacerbation of heart failure at one of two veterans affairs (VA) hospitals. Patients rated pre-visit and post-visit trust in physician and in the VA healthcare system at follow-up outpatient visits. The associations of trust in physician and VA with covariates were analyzed using multivariate mixed-effects regression.

Results

After adjusting for covariates, post-visit trust in physician was significantly higher than pre-visit trust (P < 0.001), but was not significantly different by race. Trust in VA did not change significantly over time (P > 0.20), but was significantly lower for Black patients (P < 0.001). High self-efficacy to communicate was independently associated with both trust in physician and VA (P < 0.001).

Conclusions

Trust in physician improved over the course of each visit. Trust in VA was not associated with time, but was lower among Black patients. Trust was higher when ratings of communication were higher.

Practice implications

Trust in physician improved at each visit and was independently associated with communication. Interventions designed to improve communication should be tested for their ability to improve trust in physician and trust in the healthcare system.  相似文献   

16.
Outcomes for adolescents and young adults (AYAs) with leukemia differ from other age groups and are still under-represented in clinical research. The aim of this study was to analyze outcomes of umbilical cord blood transplant (UCBT) in AYAs with acute leukemia reported to Eurocord/European Society for Blood and Marrow Transplantation. Patients (N = 504) had acute lymphoblastic (59%) or myeloid leukemia (41%), were aged 15 to 25 years, and received UCBT after myeloablative conditioning regimens between 2004 and 2016. The primary endpoint was 3-year overall survival (OS). Median follow-up was 3.9 years. Transplant was single in 58% and double UCBT in 42%. Three-year OS was 45% and leukemia free survival (LFS) was 41%. Cumulative incidence functions (CIFs) of nonrelapse mortality (NRM) and relapse were 31% and 28%, respectively. CIF of acute graft-versus-host disease (GVHD) grades II to IV at day 100 was 28%. Three-year CIF of chronic GVHD was 25%. In adjusted analysis, better disease status at UCBT (hazard ratio [HR], 2.74; P < .001) and more recent UCBT (HR, 1.43; P = .01) were associated with increased OS, and a similar effect of these factors was observed on LFS. Contrastingly, the use of antithymocyte globulin had a negative effect in LFS. The risk of acute GVHD grades II to IV increased with the use of double UCBT (HR, 1.65; P = .02) and decreased with more recent transplant period (HR, .65; P = .02) and antithymocyte globulin use (HR, .55; P = .01). Outcomes of AYA UCBT improved in more recent years, becoming comparable with pediatric results. Demonstrating the feasibility of UCBT in AYAs facilitates stem cell source selection and provides the basis for future prospective studies.  相似文献   

17.
ABSTRACT: BACKGROUND: Low adherence to chronic kidney disease (CKD) guidelines may be due to unrecognized CKD and lack of guideline awareness on the part of providers. The goal of this study was to evaluate the impact of provider education and a CKD registry on guideline adherence. METHODS: We conducted a cluster randomized controlled trial at the Louis Stokes Cleveland VAMC. One of two primary care clinics was randomized to intervention. Providers from both clinics received a lecture on CKD guidelines at study initiation. Providers in the intervention clinic were given access to and shown how to use a CKD registry, which identifies patients with CKD and is automatically updated daily. Eligible patients had at least one primary care visit in the last year, had CKD based on eGFR, and had not received renal replacement therapy. The primary outcome was parathyroid hormone (PTH) adherence, defined by at least one PTH measurement during the 12 month study. Secondary outcomes were measurement of phosphorus, hemoglobin, proteinuria, achievement of goal blood pressure, and treatment with a diuretic or renin-angiotensin system blocker. RESULTS: There were 418 and 363 eligible patients seen during the study in the control and intervention clinics, respectively. Compared to pre-intervention, measurement of PTH increased in both clinics (control clinic: 16% to 23%; intervention clinic: 13% to 28%). Patients in the intervention clinic were more likely to have a PTH measured during the study (adjusted odds ratio = 1.53; 95% CI (1.01, 2.30); P = 0.04). However, the intervention was not associated with a consistent improvement in secondary outcomes. Only 5 of the 37 providers in the intervention clinic accessed the registry. CONCLUSIONS: An intervention that included education on CKD guidelines and access to a CKD patient registry marginally improved guideline adherence over education alone. Adherence to the primary process measure improved in both clinics, but no improvement was seen in intermediate clinical outcomes. Improving the care of patients with CKD will likely require a multifaceted approach including system redesign.  相似文献   

18.
ObjectiveTo compare how coder ratings of standardized patient (SP) visit recordings and SP ratings of the visits detect primary care physician (PCP) training in self-efficacy enhancing interviewing techniques (SEE IT).MethodsAnalyses of data from 50 PCPs who participated in a randomized controlled trial of SEE IT training, which led to increased SEE IT use during three SP visits 1–3 months post-intervention. Untrained SPs rated SEE IT use post-visit. Subsequently, three trained coders generated a consensus SEE IT rating from visit audio recordings. SPs and coders were blinded to provider study arm, and coders to SP ratings.ResultsSP and coder ratings were correlated (r = 0.62). In detecting the intervention effect, the areas under the receiver operating characteristic curve were 0.80 (95% CI 0.74–0.87) and 0.76 (95% CI 0.69–0.84) for consensus coder and SP ratings, respectively (difference 0.04, 95% CI −0.04–0.11; z = 1.04, p = 0.30).ConclusionSP ratings were not significantly different from coder ratings of SP visit recordings in detecting PCP SEE IT training.Practice implicationsIf similar findings are observed in larger studies, it would suggest a greater role for SP ratings in detecting provider interviewing skills training, given the relative simplicity, low cost, and non-intrusiveness of the approach.  相似文献   

19.
ObjectiveGiven the negative consequences associated with non-adherence in adolescents and young adults (AYAs) with chronic illness, it is important to identify interventions to address this issue. Therefore, this review’s primary objective is to evaluate the impact of motivational interviewing (MI) on adherence and symptom level/severity in AYAs with chronic illness using a modified Cochrane method.MethodFour databases (e.g., CINAHL, Medline, PsychINFO, and International Pharmaceutical Abstracts) were systematically reviewed. 121 articles were identified in the initial search. Article eligibility was assessed on two tiers using the inclusion criteria.ResultsTwelve articles were retained for data extraction. Diabetes, asthma, and HIV were the most common chronic illness populations examined in the study. Eleven of the twelve articles provided support for either improved adherence, symptom reduction, or a combination of both after participants received MI. Quality of life was also enhanced in three studies.ConclusionBecause adherence and symptom levels were positively impacted, it appears that MI may be a promising intervention for AYAs with chronic illness in addressing non-adherence and potentially improving quality of life.Practice implicationsHealthcare providers should consider implementing MI in their practice to establish rapport and potentially improve long-term health outcomes for AYAs with chronic illness.  相似文献   

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