Patient-provider communication in nephrology care for adolescents and young adults

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.     

Engagement and Affective Communication During Pediatric Nephrology Clinic Visits: Associations with Medication Adherence

ObjectiveTo 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.MethodsAYAs (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.ResultsAYAs took 84% of doses (SD = 20%) pre-visit and 82% of doses (SD = 24%) post-visit. Higher AYA engagement (β = 0.03, p = .01) and the absence of provider negative affect (β=-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.ConclusionsPost-visit adherence was higher when AYAs were rated as more engaged and providers as less negative.Practice ImplicationsAYAs 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.     

Evaluating provider communication in pediatric chronic kidney disease care using a global coding system

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.     

iBDecide: A web-based tool to promote engagement in shared decision-making among adolescents with ulcerative colitis

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.     

Sun protective behaviors among adolescents and young adults in the United States

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.     

Quality-of-Life Trajectories in Adolescent and Young Adult versus Older Adult Allogeneic Hematopoietic Cell Transplantation Recipients

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.     

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

ObjectiveTo understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services.MethodsFive databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised.Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence.ConclusionParents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers.Practice implicationsInterventions are needed which address the transitional care needs of parents as well as young people.     

The need for control,safety and trust in healthcare: A qualitative study among adolescents and young adults exposed to family violence

ObjectiveAdolescents and young adults (AYA) exposed to family violence are in need of professional healthcare. However, only one-third of them seek professional help.MethodsThis study investigates healthcare needs of twelve AYA exposed to family violence. Semi-structured face-to-face interviews using purposive sampling to reach diversity. Open thematic coding was used to identify the most important themes.ResultsParticipants experienced emotional problems, distrusted others and felt unsafe as an important consequence of their exposure to family violence. All participants expressed a need for help, but as help involved informing others, they considered it unsafe. Trust, safety and control regarding healthcare interventions emerged as vital needs. The anonymity of the Internet was considered as offering safeguards in seeking and receiving help.ConclusionTrust, safety and control regarding healthcare interventions emerged as vital needs for AYA exposed to family violence. The great importance of being in control of healthcare interventions has not been reported earlier. A personal bond can lower the need for control.Practice implicationsTo comply with the three basic needs, healthcare providers should grant AYA as much control as possible while still monitoring patient safety. The Internet can be an important resource for offering low-threshold professional and peer support.     

The effect of transition care interventions incorporating health coaching strategies for stroke survivors: A systematic review and meta-analysis

ObjectiveTo systematically analyse health coaching strategies in transition care and synthesise the effect of these strategies on health care outcomes for stroke survivors.MethodsA systematic search of nine databases in two languages was conducted. Meta-analysis was conducted when data were available.ResultsTwenty-five randomised controlled trials met the inclusion criteria. The meta-analysis revealed that health coaching strategies in transition care interventions significantly improve quality of life (QoL) (p < 0.001), activities of daily living (ADL) (p = 0.002) and reduce depression (p = 0.001) for stroke survivors at 3 months. Further subgroup analysis demonstrated that transition care interventions with a greater number of health coaching strategies are associated with a larger effect size on QoL (SMD=1.15) and ADL (SMD=1.177) at 3 months, and a medium effect size (SMD=0.674) on depression reduction. However, the effects of health coaching strategies on readmission, mortality and falls in stroke survivors remain inconclusive.ConclusionsThis review provides evidence that incorporating health coaching strategies in transitional care improves health outcomes of stroke survivors.Practice implicationMore trials of health coaching interventions to improve transition care with a rigorous study design are much needed to address the lack of support for stroke survivors and their caregivers in this crucial care period.     

Allocation of family responsibility for illness management in pediatric HIV

Objective The purpose of the study is to describe allocationof responsibility for illness management in families of childrenand adolescents perinatally infected with HIV. Methods Atotal of 123 youth (ages 8–18) and caregivers completedfamily responsibility and medication adherence questionnairesas part of a substudy of Pediatric AIDS Clinical Trials Groupprotocol 219c. Results Approximately one-fourth ofthe youth reported being fully responsible for taking medications.A smaller percentage of caregivers reported full youth responsibility.Older youth and caregivers of older youth reported higher degreeof youth responsibility for medication-related tasks, thoughage was unrelated to adherence. Caregiver report of greaterresponsibility for medications was associated with better adherence. Conclusions Caregiversare likely to transition responsibility for HIV care to olderyouth but this transition was not always successful as evidencedby poor medication adherence. Interventions supporting successfultransition may improve adherence and subsequently health outcomesin pediatric HIV.     

Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

IntroductionUpsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.MethodsPRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.ResultsThe review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.ConclusionOptimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.Practical ImplicationsA paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.     

The determinants of home healthcare robots adoption: An empirical investigation

BackgroundHome healthcare robots promise to make clinical information available at the right place and time, thereby reducing error and increasing safety and quality. However, it has been frequently reported that more than 40% of previous information technology (IT) developments have failed or been abandoned due to the lack of understanding of the sociotechnical aspects of IT.ObjectivePrevious home healthcare robots research has focused on technology development and clinical applications. There has been little discussion of associated social, technical and managerial issues that are arguably of equal importance for robot success. To fill this knowledge gap, this research aims to understand the determinants of home healthcare robots adoption from these aspects by applying technology acceptance theories.MethodsWe employed both qualitative and quantitative methods. The participants were recruited from home healthcare agencies located in the U.S. (n = 108), which included both patients and healthcare professionals. We collected data via a survey study to test a research model.ResultsThe usage intention of home healthcare robots is a function of social influence, performance expectancy, trust, privacy concerns, ethical concerns and facilitating conditions. Among them, social influence is the strongest predictor. Monitoring vital signs and facilitating communication with family and medication reminders are the most preferable tasks and applications for robots.ConclusionSociotechnical factors play a powerful role in explaining the adoption intention for home healthcare robots. The findings provide insights on how home healthcare service providers and robot designers may improve the success of robot technologies.     

Assessment of readiness to initiate antiretroviral therapy

Abstract

PURPOSE: An important factor in adherence to antiretroviral therapy (ART) is the patient's commitment to follow the regimen, which suggests that therapy should be initiated only when the patient is ready to make such a commitment. Because there has been no research on patient readiness for ART, this study was undertaken to investigate factors that influence the decision of an HIV-positive person to seek medical care and to initiate ART. METHOD: The investigators surveyed 83 HIV-infected patients on ART. Participants completed a questionnaire that obtained information on the length of time from when they learned of their HIV-positive status to when they sought medical care, the length of time from when they learned of their HIV-positive status to when they were ready to initiate therapy, and psychological and social factors thought to be associated with readiness. RESULTS: Respondents had a mean age of 37 years, 71% were male, and 65% were African American. Only 42% said they sought medical care immediately upon learning their HIV diagnosis. Fifty percent were ready to initiate therapy immediately upon learning their diagnosis, and 25% were ready within 1 year. Sixty-four percent of respondents experienced barriers that interfered with therapy initiation. Although 98% of respondents experienced at least one emotional response to HIV diagnosis, less than 25% of respondents thought that their responses interfered with readiness. However, five emotional responses demonstrated an association with readiness through chi-square analysis. CONCLUSION: Further research is needed to explain the relationships among emotional responses to HIV diagnosis, readiness to initiate ART, and adherence.     

EAACI Guidelines on the effective transition of adolescents and young adults with allergy and asthma

Adolescent and young adult (AYA) patients need additional support, while they experience the challenges associated with their age. They need specific training to learn the knowledge and skills required to confidently self-manage their allergies and/or asthma. Transitional care is a complex process, which should address the psychological, medical, educational and vocational needs of AYA in the developmentally appropriate way. The European Academy of Allergy and Clinical Immunology has developed a clinical practice guideline to provide evidence-based recommendations for healthcare professionals to support the transitional care of AYA with allergy and/or asthma. This guideline was developed by a multidisciplinary working panel of experts and patient representatives based on two recent systematic reviews. It sets out a series of general recommendations on operating a clinical service for AYA, which include the following: (a) starting transition early (11-13 years), (b) using a structured, multidisciplinary approach, (c) ensuring AYA fully understand their condition and have resources they can access, (d) active monitoring of adherence and (e) discussing any implications for further education and work. Specific allergy and asthma transition recommendations include (a) simplifying medication regimes and using reminders; (b) focusing on areas where AYA are not confident and involving peers in training AYA patients; (c) identifying and managing psychological and socio-economic issues impacting disease control and quality of life; (d) enrolling the family in assisting AYA to undertake self-management; and (e) encouraging AYA to let their friends know about their allergies and asthma. These recommendations may need to be adapted to fit into national healthcare systems.     

Developing a toolkit for patients with COPD or chronic heart failure and their informal caregivers to improve person-centredness in conversations with healthcare professionals: A Design Thinking approach

BackgroundThe perspective of patients and informal caregivers is often not expressed in conversations with healthcare professionals which can have a negative impact on quality of care and quality of life.ObjectiveDescribe the development of a toolkit for patients with COPD or chronic heart failure and their informal caregivers enabling them to explore and express their perspective in conversations with healthcare professionals.Patient involvement: Patients, informal caregivers and healthcare professionals were involved in the design process from problem definition to solution development.MethodDesign Thinking Approach using eight co-creation sessions and qualitative data-collection methods. Nineteen patients, ten informal caregivers and thirteen healthcare professionals participated in one or more co-creation sessions. Homogenous subgroups of participants were used in session 1, 2 and 4 and mixed groups were used in session 3, 5 and 6. Session 7 and 8 were used to test prototype toolkits.ResultsThree challenges to expressing the personal perspective to healthcare professionals, four statements defining the desired situation for conversations, eleven design criteria for the toolkit and ten selection criteria for tools were identified. This information was used to develop a prototype toolkit.DiscussionMost patients and informal caregivers had moderate to high levels of education and all participating healthcare professionals were female with a majority of nurses and only three physicians. It is possible that this has influenced the design of the toolkit.Practical valueThe toolkit can support patients and informal caregivers in exploring and expressing their perspective in conversations with healthcare professionals. Feasibility of the toolkit and implications for healthcare professionals will be examined in a pilot implementation study.     

Myeloablative Unrelated Cord Blood Transplantation in Adolescents and Young Adults with Acute Leukemia

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.     

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers

ObjectiveWe aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care.MethodsWe used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis.ResultsFour to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”.ConclusionFamily caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs.Practice implicationsPrompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.