"There has to be more caring": patient and care partner experiences of the disclosure of amyloid-ß PET scan results.

OBJECTIVES: To explore patient and care partner experiences of receiving an amyloid scan result, with a focus on how clinician disclosure practices influenced patient and care partner emotional responses to the scan result and/or diagnosis. METHODS: Semi-structured interviews with 38 people with mild cognitive impairment or dementia and 62 care partners who experienced the disclosure of results from an amyloid PET scan as part of the CARE-IDEAS study. We used thematic analysis to analyze interview transcripts. RESULTS: We identified four aspects of the disclosure process that could influence patient and care partner emotional experiences of the scan result/diagnosis: (1) mode of delivery, (2) presence of a care partner, (3) clarity of the scan result explanation, and (4) discussion of post-scan treatment and support options. CONCLUSIONS: Emotional experiences of an amyloid scan result can vary depending on how results are communicated. These findings support previous efforts to develop standard disclosure protocols. Scan results should be delivered in person with the care partner present. Clinicians should give a clear explanation of the result and its implications in an empathetic manner. Options for treatment and support should be discussed for all patients.

"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-ß PET scan results and caregiver burden.

BACKGROUND: Caregiver burden consists of disease specific and perceived stressors, respectively referred to as objective and subjective indicators of burden, and is associated with negative outcomes. Previous research has found that care partners to persons living with cognitive impairment and elevated levels of amyloid-ß, as measured by a positron emission tomography (PET) scan, may experience caregiver burden. AIMS: To elucidate the relationship between amyloid scan results and subjective and objective indicators of burden. METHODS: A parallel mixed-methods design using survey data from 1338 care partners to persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study; and semi-structured interviews with a subsample of 62 care partners. Logistic regression models were used to investigate objective factors associated with caregiver burden. A thematic analysis of semi-structured interviews was used to investigate subjective indicators by exploring care partners' perceptions of their role following an amyloid scan. RESULTS: Elevated amyloid was not associated with burden. However, the scan result influenced participants perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, whereas partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support. CONCLUSIONS: Amyloid scans can influence subjective indicators of burden and present the opportunity to identify and address care partners' support needs.

Advance directives among cognitively impaired persons who had an amyloid PET scan and their care partners: a mixed-methods study.

BACKGROUND: Little research exists on the role of ß-amyloid PET scans as part of Alzheimer's diagnostic tests and documentation of end-of-life preferences for persons with cognitive impairment. The study objectives were to examine the association of amyloid PET scan results (elevated vs. not elevated amyloid levels) and diagnostic category (mild cognitive impairment vs. dementia) with the likelihood of having an advance directive (reported a median of 4.5 months post-scan); to explore perceptions of PET scan results and their influence on planning for the future among persons with cognitive impairment and their care partners. METHODS: Sequential, explanatory mixed-methods design using data from dyads in the CARE-IDEAS study: advance directives as a factor of diagnostic category and scan result using multivariable logistic regression models; thematic analysis of semi-structured interviews with persons with cognitive impairment and care partners to explore how scan results influenced documentation of future healthcare preferences. Participants included 1784 persons with cognitive impairment and care partners from the CARE-IDEAS study, and a subsample of 100 semi-structured telephone interviews. RESULTS: 81.6% of dyads reported an advance directive. Non-Hispanic, White participants had higher rates of advance directives. There was no significant association between having an advance directive and scan results. Qualitative analysis provided insight into perceived urgency to have advance directives, evolving healthcare preferences, and the context of completing advance directives. CONCLUSIONS: Although amyloid PET scans prompted persons with cognitive impairment and care partners to consider progressive cognitive impairment as part of evolving healthcare preferences, we found substantial variability in the perceived urgency of documentation.

African Americans' discussions about living-donor kidney transplants with family or friends: Who, what, and why not?

BACKGROUND: Although discussions with family or friends can improve access to living-donor kidney transplantation (LDKT), they remain an understudied step in the LDKT process. METHODS: Among 300 African American transplant candidates, we examined how sociodemographic, clinical, LDKT-related, and psychosocial characteristics related to the occurrence of LDKT discussions with family or friends. We also analyzed the relation between discussion occurrence and donor activation on transplant candidates' behalves (at least one donor inquiry or completed donor evaluation in the medical record). We assessed associations of discussion characteristics (context, content, and perceptions) with donor activation among discussants, and we identified discussion barriers among non-discussants. RESULTS: Most candidates (90%) had discussed LDKT. Only family functioning was statistically significantly associated with discussion occurrence. Specifically, family dysfunction was associated with 62% lower odds of discussion than family function. Family functioning, discussion occurrence, and different discussion characteristics were statistically significantly related to donor activation. The most prevalent discussion barrier was never having thought about discussing LDKT. CONCLUSIONS: Family functioning affected the likelihood of discussing LDKT, and family functioning, discussion occurrence, and discussion characteristics were associated with donor activation. Advancing understanding of how family functioning and LDKT discussions affect progression to LDKT may benefit interventions to increase LDKT.

Hypertension Self-management in Socially Disadvantaged African Americans: the Achieving Blood Pressure Control Together (ACT) Randomized Comparative Effectiveness Trial.

BACKGROUND: Effective hypertension self-management interventions are needed for socially disadvantaged African Americans, who have poorer blood pressure (BP) control compared to others. OBJECTIVE: We studied the incremental effectiveness of contextually adapted hypertension self-management interventions among socially disadvantaged African Americans. DESIGN: Randomized comparative effectiveness trial. PARTICIPANTS: One hundred fifty-nine African Americans at an urban primary care clinic. INTERVENTIONS: Participants were randomly assigned to receive (1) a community health worker ("CHW") intervention, including the provision of a home BP monitor; (2) the CHW plus additional training in shared decision-making skills ("DoMyPART"); or (3) the CHW plus additional training in self-management problem-solving ("Problem Solving"). MAIN MEASURES: We assessed group differences in BP control (systolic BP (SBP) < 140 mm Hg and diastolic BP (DBP) < 90 mmHg), over 12 months using generalized linear mixed models. We also assessed changes in SBP and DBP and participants' BP self-monitoring frequency, clinic visit patient-centeredness (i.e., extent of patient-physician discussions focused on patient emotional and psychosocial concerns), hypertension self-management behaviors, and self-efficacy. KEY RESULTS: BP control improved in all groups from baseline (36%) to 12 months (52%) with significant declines in SBP (estimated mean [95% CI] - 9.1 [- 15.1, - 3.1], - 7.4 [- 13.4, - 1.4], and - 11.3 [- 17.2, - 5.3] mmHg) and DBP (- 4.8 [- 8.3, - 1.3], - 4.0 [- 7.5, - 0.5], and - 5.4 [- 8.8, - 1.9] mmHg) for CHW, DoMyPART, and Problem Solving, respectively). There were no group differences in BP outcomes, BP self-monitor use, or clinic visit patient-centeredness. The Problem Solving group had higher odds of high hypertension self-care behaviors (OR [95% CI] 18.7 [4.0, 87.3]) and self-efficacy scores (OR [95% CI] 4.7 [1.5, 14.9]) at 12 months compared to baseline, while other groups did not. Compared to DoMyPART, the Problem Solving group had higher odds of high hypertension self-care behaviors (OR [95% CI] 5.7 [1.3, 25.5]) at 12 months. CONCLUSION: A context-adapted CHW intervention was correlated with improvements in BP control among socially disadvantaged African Americans. However, it is not clear whether improvements were the result of this intervention. Neither the addition of shared decision-making nor problem-solving self-management training to the CHW intervention further improved BP control. TRIAL REGISTRY: ClinicalTrials.gov Identifier: NCT01902719.

Associations of perceived information adequacy and knowledge with pursuit of live donor kidney transplants and living donor inquiries among African American transplant candidates.

We studied associations between perceived adequacy of live donor kidney transplant (LDKT) information or knowledge with pursuit of LDKT or receipt of live donor inquiries among 300 African American kidney transplant candidates. Participants reported via questionnaire how informed or knowledgeable they felt regarding LDKT. Participants also reported their pursuit of LDKT, categorized as "low" (no discussion with family or friends about LDKT and no identified donor), "intermediate" (discussed LDKT with family but no identified donor) or "high" (discussed LDKT with family and identified a potential donor). We reviewed participants' electronic health records to identify potential donors' transplant center inquiries on participants' behalves. A minority of participants reported they felt "very" or "extremely" well informed about LDKT (39%) or had "a great deal" of LDKT knowledge (38%). Participants perceiving themselves as "very" or "extremely" (vs "not" or "slightly") well informed about LDKT had statistically significantly greater odds of intermediate or high (vs low) pursuit of LDKT (odds ratio [95% confidence interval] 2.71 [1.02-7.17]). Perceived LDKT knowledge was not associated with pursuit of LDKT. Neither perceived information adequacy nor knowledge was associated with living donor inquiries. Efforts to better understand the role of education in the pursuit of LDKT among African American transplant candidates are needed.

Mechanisms Through Which a Family Caregiver Coaching Intervention Might Reduce Anxiety Among Children in Military Households.

OBJECTIVES: Children of injured or disabled veterans and service members may be at risk for mental health and adjustment problems due to household stress. Yet, there are few widely available interventions to address the needs of this population. Reducing distress and improving coping skills of the parent who cares for the injured or disabled adult may improve child outcomes. This paper examines whether changes in caregiver psychosocial outcomes after a caregiver coaching intervention are associated with decreases in child anxiety. METHODS: Using programmatic data collected between 2015 and 2019 from participants in a family caregiver coaching intervention (170 caregivers, 294 children), we apply linear mixed models to assess associations between changes in family caregiver well-being, including problem solving, depressive symptoms, burden, health complaints and quality of life, and changes in parent-reported child anxiety. RESULTS: The baseline median Spence Children's Anxiety Scale-Parent score was 17; children aged 6-11 had slightly higher scores. Child anxiety scores decreased on average 2.8 points (SD 8.4) between baseline and follow-up. In adjusted models, decreases in caregiver depressive symptoms and health complaints were associated with decreases in child anxiety. Caregiver problem-solving skills, quality of life, and subjective burden were not associated with changes in child anxiety. CONCLUSION: Family caregiver-focused interventions that decrease caregiver stress may positively affect children in the household. Few resources are directed at military children; therefore, practitioners should consider ways to leverage caregiver interventions to address child well-being, such as incorporating information on parenting strategies and addressing issues faced by military children.

Family-supportive supervisor behaviour positively affects work behaviour and nonwork well-being among men in long-term care.

AIMS: This study examined whether family-supportive supervisor behavior is associated with work behavior (safety compliance and organizational citizenship behavior) and nonwork well#x2010;being (family time adequacy, time in bed and sleep quality) among men working in long-term care. Men's nonwork care roles for children (double-duty-child caregivers), adult relatives (double-duty-adult caregivers), or children and adult relatives (triple-duty caregivers) were assessed as moderators. BACKGROUND: Family-supportive supervisor behaviour is a modifiable workplace practice that may help recruit and retain men in nursing amid their increasing nonwork demands. METHOD: Multiple linear regression analysis was performed on cross-sectional, secondary survey data from 122 men working in U.S.-based nursing homes. RESULTS: Family-supportive supervisor behaviour was directly and positively related to safety compliance, organisational citizenship behaviour and family time adequacy. It was also positively associated with time in bed and sleep quality for double-duty caregivers. CONCLUSION: Family-supportive supervisor behaviour plays an important role in the work behaviour and nonwork well-being of men with and without nonwork care roles in the long-term care workforce, a finding with favourable implications at the employee and organisational level. IMPLICATIONS FOR NURSING MANAGEMENT: Managers need to recognize that family-supportive supervisor behavior can benefit men, as many have nonwork caregiving responsibilities. Training may facilitate nurse managers' engagement in family-supportive supervisor behaviour and, in turn, improve employees' work and nonwork outcomes (link to training resources provided).

Perspectives of African-American Family Members about Kidney Failure Treatment.

Understanding African-American families' experiences with treatment for kidney failure is necessary for informing the delivery of family-centered care and the design of appropriate interventions. This qualitative study explored treatment-related questions, concerns, and family impacts among African-American family members of patients with pre-kidney failure and kidney failure. Thirty-five family members participated in focus groups stratified by patients' treatment experiences (pre-kidney failure, in-center hemodialysis, peritoneal dialysis, awaiting living-donor kidney transplantation, or post-transplantation). Family members raised questions and concerns about the psychological, lifestyle, and practical aspects of treatment. Similarly, discussions about family impacts emphasized psychosocial effects, lifestyle consequences, and the provision and receipt of support. Efforts to address these questions, concerns, and perceived family impacts through additional research, early and tailored education, and supportive interventions are needed.

The Relationship between Subjective Cognitive Impairment and Activity Participation: A Systematic Review.

This systematic review synthesizes current evidence to determine how subjective cognitive impairment (SCI) relates to physical, cognitive, and social activity participation in older adults. Nine peer-reviewed articles were reviewed and appraised for evidence quality. Most were cross-sectional and had high methodological quality. Higher levels of SCI were almost universally associated with lower levels of physical and social activity participation. These findings suggest that older adults who report higher SCI engage in fewer activities. Examining these relationships longitudinally is an important next step to determine whether SCI precedes withdrawing from activities in older adults.

Subjective cognitive impairment and quality of life: a systematic review.

BACKGROUND: Older adults with subjective cognitive impairment (SCI) experience increased affective symptoms, reduced engagement in a range of activities, as well as more functional problems when compared to those without SCI. These associations suggest that SCI may be detrimental to older adults' quality of life (QoL). The purpose of this paper is to advance understanding of the SCI-QoL relationship through a comprehensive review of the empirical literature relating SCI and QoL. METHODS: A systematic literature review was conducted in CINAHL, PsycINFO, and PubMed per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria. Eligible articles were appraised using the weight of evidence (WoE) framework to evaluate methodological quality, methodological relevance, and topic relevance. A narrative synthesis of results was conducted, based on conceptual definitions of QoL. RESULTS: Eleven articles were identified that met eligibility criteria. WoE ratings ranged from low to high scores. Studies reviewed reported that the presence, greater frequency, or greater severity of SCI is associated with lower QoL regardless of methodological quality rating, sample characteristics (e.g. geographic location, clinical vs. community settings), study design (e.g. cross-sectional vs. longitudinal), and operationalization of SCI or QoL. CONCLUSION: Across studies, QoL was negatively associated with SCI. However, a frequent limitation of the reviewed literature was the mismatch between the conceptual and operational definitions of SCI and QoL. Similarly, SCI measures varied in quality across the reviewed literature. This suggests future empirical work should focus on the appropriate strategies for conceptually and operationally defining these constructs.

The Psychosocial Implications of Managing Work and Family Caregiving Roles: Gender Differences Among Information Technology Professionals.

An increasing number of adults, both men and women, are simultaneously managing work and family caregiving roles. Guided by the stress process model, we investigate whether 823 employees occupying diverse family caregiving roles (child caregiving only, elder caregiving only, and both child caregiving and elder caregiving, or "sandwiched" caregiving) and their noncaregiving counterparts in the information technology division of a white-collar organization differ on several indicators of psychosocial stress along with gender differences in stress exposure. Compared with noncaregivers, child caregivers reported more perceived stress and partner strain whereas elder caregivers reported greater perceived stress and psychological distress. With the exception of work-to-family conflict, sandwiched caregivers reported poorer overall psychosocial functioning. Additionally, sandwiched women reported more family-to-work conflict and less partner support than their male counterparts. Further research on the implications of combining a white-collar employment role with different family caregiving roles is warranted.

Elevated Amyloid-ß PET Scan and Cognitive and Functional Decline in Mild Cognitive Impairment and Dementia of Uncertain Etiology.

BACKGROUND: Elevated amyloid-ß (Aß) on positron emission tomography (PET) scan is used to aid diagnosis of Alzheimer's disease (AD), but many prior studies have focused on patients with a typical AD phenotype such as amnestic mild cognitive impairment (MCI). Little is known about whether elevated Aß on PET scan predicts rate of cognitive and functional decline among those with MCI or dementia that is clinically less typical of early AD, thus leading to etiologic uncertainty. OBJECTIVE: We aimed to investigate whether elevated Aß on PET scan predicts cognitive and functional decline over an 18-month period in those with MCI or dementia of uncertain etiology. METHODS: In 1,028 individuals with MCI or dementia of uncertain etiology, we evaluated the association between elevated Aß on PET scan and change on a telephone cognitive status measure administered to the participant and change in everyday function as reported by their care partner. RESULTS: Individuals with either MCI or dementia and elevated Aß (66.6% of the sample) showed greater cognitive decline compared to those without elevated Aß on PET scan, whose cognition was relatively stable over 18 months. Those with either MCI or dementia and elevated Aß were also reported to have greater functional decline compared to those without elevated Aß, even though the latter group showed significant care partner-reported functional decline over time. CONCLUSIONS: Elevated Aß on PET scan can be helpful in predicting rates of both cognitive and functional decline, even among cognitively impaired individuals with atypical presentations of AD.

Effectiveness of educational and social worker interventions to activate patients' discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial.

BACKGROUND: Many patients with chronic kidney disease (CKD) have difficulty becoming actively engaged in the pursuit of preemptive living donor kidney transplantation. STUDY DESIGN: The Talking About Live Kidney Donation (TALK) Study was a randomized controlled trial of the effectiveness of educational and social worker interventions designed to encourage early discussions and active pursuit of preemptive living donor kidney transplantation in patients with progressive CKD. SETTING & PARTICIPANTS: We recruited participants with progressive CKD from academically affiliated nephrology practices in Baltimore, MD. INTERVENTION: Participants randomly received: (1) usual care (routine care with their nephrologists), the (2) TALK education intervention (video and booklet), or the (3) TALK social worker intervention (video and booklet plus patient and family social worker visits). OUTCOMES: We followed participants for 6 months to assess their self-reported achievement of behaviors reflecting their discussions about and/or pursuit of living donor kidney transplantation (discussions with family, discussions with physicians, initiating recipient evaluation, completing recipient evaluation, and identifying a potential living donor). MEASUREMENTS: We assessed outcomes through a questionnaire at 1-, 3-, and 6-months follow-up. RESULTS: Participants receiving usual care with their nephrologists (n = 44), TALK education (n = 43), and the TALK social worker (n = 43) were similar at baseline. TALK Study interventions improved participants' living donor kidney transplantation discussion and pursuit behaviors, with the social worker leading to greater patient activation (participants' predicted probability of achieving living donor kidney transplantation discussions, evaluations, or donor identification over 6 months): probabilities were 30% (95% CI, 20%-46%), 42% (95% CI, 33%-54%), and 58% (95% CI, 41%-83%), respectively, in the usual care, TALK education, and TALK social worker groups (P = 0.03). LIMITATIONS: Our population was well educated and mostly insured, potentially limiting generalizability of our findings. CONCLUSIONS: TALK interventions improved discussion and active pursuit of living donor kidney transplantation in patients with progressive CKD and may improve their use of preemptive living donor kidney transplantation.

Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study.

BACKGROUND: Little is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions. METHODS: In 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients' RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback. RESULTS: Ten groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients' psychological well-being and finances. Views of African American and non-African American participants were largely similar. CONCLUSIONS: Educational resources addressing the influence of RRT selection on patients' morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients' personal relationships and finances could enhance resources' cultural relevance for African Americans.

Association of Perceived Neighborhood Health With Hypertension Self-care.

Importance: Hypertension self-management is recommended for optimal blood pressure (BP) control, but self-identified residential contextual factors that hinder hypertension self-care are understudied. Objective: To quantify perceived neighborhood health and hypertension self-care and assess interactions with the area deprivation index (ADI) and healthy food availability at home. Design, Setting, and Participants: A cross-sectional study was conducted in Baltimore, Maryland, including primary care adults enrolled in the Achieving Blood Pressure Control Together trial between September 1, 2013, and June 30, 2014. Participants were Black and had at least 2 BP readings greater than or equal to 140/90 mm Hg in the 6 months before enrollment. Analyses were conducted from August 5, 2021, to January 28, 2022. Exposures: Participants' perceived neighborhood health, defined as the mean standardized score across 4 subdomains of aesthetic quality, walkability, safety, and violence, with a higher score signifying better neighborhood health. Main Outcomes and Measures: Hypertension self-care behavior and self-efficacy. Multivariable generalized linear models were fit regressing each outcome on perceived neighborhood health (higher scores on each domain signify better perceived neighborhood health), adjusted for confounders, and interaction terms between neighborhood health and potential modifiers (ADI [higher percentiles correspond to more deprivation] and healthy food availability [higher scores indicate greater availability]) of the primary association were included. Results: Among 159 participants (median [IQR] age, 57 [49-64] years; mean [SD] age, 57 (11) years; 117 women [74%]), median (IQR) hypertension self-care behavior was 50 (45-56) and self-efficacy was 64 (57-72). Better perceived neighborhood health was associated with greater hypertension self-care behavior (ß, 2.48; 95% CI, 0.63-4.33) and self-efficacy (ß, 4.42; 95% CI, 2.25-6.59); these associations persisted for all neighborhood health subdomains except aesthetic quality. There were no statistically significant interactions between perceived neighborhood health or its subdomains with ADI on self-care behavior (P = .74 for interaction) or self-efficacy (P = .85 for interaction). However, better perceived neighborhood aesthetic quality had associations with greater self-care behavior specifically at higher healthy food availability at home scores: ß at -1 SD, -0.29; 95% CI, -2.89 to 2.30 vs ß at 1 SD, 2.97; 95% CI, 0.46-5.47; P = .09 for interaction). Likewise, associations of perceived worse neighborhood violence with lower self-care behavior were attenuated at higher healthy food availability at home scores (ß for -1 SD, 3.69; 95% CI, 1.31-6.08 vs ß for 1 SD, 0.01; 95% CI, -2.53 to 2.54; P = .04 for interaction). Conclusions and Relevance: In this cross-sectional study, better perceived neighborhood health was associated with greater hypertension self-care among Black individuals with hypertension, particularly among those with greater in-home food availability. Thus, optimizing hypertension self-management may require multifaceted interventions targeting both the patients' perceived contextual neighborhood barriers to self-care and availability of healthy food resources in the home.

Association of Age and Gender With Concerns About Live Donor Kidney Transplantation Among Black Individuals.

Black individuals are less likely to receive live donor kidney transplantation (LDKT) compared to others. This may be partly related to their concerns about LDKT, which can vary based on age and gender. We conducted a cross-sectional, secondary analysis of the baseline enrollment data from the Talking about Living Kidney Donation Support trial, which studied the effectiveness of social workers and financial interventions on activation towards LDKT among 300 Black individuals from a deceased donor waiting list. We assessed concerns regarding the LDKT process, including their potential need for postoperative social support, future reproductive potential, recipient and donor money matters, recipient and donor safety, and interpersonal concerns. Answers ranged from 0 ("not at all concerned") to 10 ("extremely concerned"). We described and compared participants' concerns both overall and stratified by age (≥45 years old vs <45 years old) and self-reported gender ("male" versus "female"). The participants' top concerns were donor safety (median [IQR] score 10 [5-10]), recipient safety (5 [0-10]), money matters (5 [0-9]), and guilt/indebtedness (5 [0-9]). Younger females had statistically significantly higher odds of being concerned about future reproductive potential (odds ratio [OR] 3.77, 95% CI 2.77, 4.77), and older males had statistically higher mean concern about postoperative social support (OR 1.79, 95% CI 0.19, 3.38). Interventions to improve rates of LDKT among Black individuals should include education and counseling about the safety of LDKT for both recipients and donors, reproductive counseling for female LDKT candidates of childbearing age, and addressing older males' needs for increased social support.

The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial.

BACKGROUND: Living related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown. METHODS/DESIGN: We report the protocol of the Providing Resources to Enhance African American Patients' Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients' and families' proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor). DISCUSSION: Results from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.

Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions.

BACKGROUND: Few educational resources have been developed to inform patients' renal replacement therapy (RRT) selection decisions. Patients progressing toward end stage renal disease (ESRD) must decide among multiple treatment options with varying characteristics. Complex information about treatments must be adequately conveyed to patients with different educational backgrounds and informational needs. Decisions about treatment options also require family input, as families often participate in patients' treatment and support patients' decisions. We describe the development, design, and preliminary evaluation of an informational, evidence-based, and patient-and family-centered decision aid for patients with ESRD and varying levels of health literacy, health numeracy, and cognitive function. METHODS: We designed a decision aid comprising a complementary video and informational handbook. We based our development process on data previously obtained from qualitative focus groups and systematic literature reviews. We simultaneously developed the video and handbook in "stages." For the video, stages included (1) directed interviews with culturally appropriate patients and families and preliminary script development, (2) video production, and (3) screening the video with patients and their families. For the handbook, stages comprised (1) preliminary content design, (2) a mixed-methods pilot study among diverse patients to assess comprehension of handbook material, and (3) screening the handbook with patients and their families. RESULTS: The video and handbook both addressed potential benefits and trade-offs of treatment selections. The 50-minute video consisted of demographically diverse patients and their families describing their positive and negative experiences with selecting a treatment option. The video also incorporated health professionals' testimonials regarding various considerations that might influence patients' and families' treatment selections. The handbook was comprised of written words, pictures of patients and health care providers, and diagrams describing the findings and quality of scientific studies comparing treatments. The handbook text was written at a 4th to 6th grade reading level. Pilot study results demonstrated that a majority of patients could understand information presented in the handbook. Patient and families screening the nearly completed video and handbook reviewed the materials favorably. CONCLUSIONS: This rigorously designed decision aid may help patients and families make informed decisions about their treatment options for RRT that are well aligned with their values.

The potential of mHealth for older adults on dialysis and their care partners: What's been done and where do we go from here?

Self-care, or the dynamic, daily process of becoming actively involved in one's own care, is paramount to prevent and manage complications of end-stage kidney disease. However, many older dialysis patients face distinctive challenges to adequate engagement in self-care. One promising strategy for facilitating self-care among older dialysis patients and their care partners is the utilization of mobile health (mhealth). mHealth encompasses mobile and wireless communication devices used to improve healthcare delivery, patient and care partner outcomes, and patient care. In other disease populations, mHealth has been linked to maintenance of or improvements in self-management, medication compliance, patient education, and patient-provider communication, all of which can slow disease progression. Although mHealth is considered feasible, acceptable, and clinically useful, this technology has predominately targeted younger patients. Thus, there is a need to develop mHealth for older dialysis patients and their care partners. In this article, we describe current mHealth usage in older dialysis patients, including promising findings, challenges, and research gaps. Given the lack of research on mHealth among care partners of older dialysis patients, we highlight lessons learned from other disease populations to inform the future design and implementation of mHealth for these key stakeholders. We also propose that leveraging care partners represents an opportunity to meaningfully tailor mHealth applications and, by extension, improve care partner physical and mental health and decrease caregiver burden. We conclude with a summary of future directions to help older dialysis patients and their care partners receive recognition as target end-users amid the constant evolution of mHealth.