Association of cognitive impairment with the interaction between chronic kidney disease and depression: findings from NHANES 2011-2014.

BACKGROUND: Cognitive impairment (CoI), chronic kidney disease (CKD), and depression are prevalent among older adults and are interrelated, imposing a significant disease burden. This study evaluates the association of CKD and depression with CoI and explores their potential interactions. METHOD: Data for this study were sourced from the 2011-2014 National Health and Nutritional Examination Survey (NHANES). Multiple binary logistic regression models assessed the relationship between CKD, depression, and CoI while controlling for confounders. The interactions were measured using the relative excess risk of interaction (RERI), the attributable proportion of interaction (AP), and the synergy index (S). RESULTS: A total of 2,666 participants (weighted n = 49,251,515) were included in the study, of which 700 (16.00%) had CoI. After adjusting for confounding factors, the risk of CoI was higher in patients with CKD compared to non-CKD participants (odds ratio [OR] = 1.49, 95% confidence interval [CI]:1.12-1.99). The risk of CoI was significantly increased in patients with depression compared to those without (OR = 2.29, 95% CI: 1.73-3.03). Furthermore, there was a significant additive interaction between CKD and depression in terms of the increased risk of CoI (adjusted RERI = 2.01, [95% CI: 0.31-3.71], adjusted AP = 0.50 [95% CI: 0.25-0.75], adjusted S = 2.97 [95% CI: 1.27-6.92]). CONCLUSION: CKD and depression synergistically affect CoI, particularly when moderate-to-severe depression co-occurs with CKD. Clinicians should be mindful of the combined impact on patients with CoI. Further research is needed to elucidate the underlying mechanisms and assess the effects specific to different CKD stages.

Patient activation and psychological coping strategies to manage challenging circumstances during the COVID-19 pandemic in people with kidney disease.

BACKGROUND: Coping with health problems requires some degree of self-management; however, an individual's ability to self-manage can be threatened during challenging times, such as the COVID-19 pandemic. Exploring differences and changes in psychological well-being and coping strategies between those with low and high patient activation may inform appropriate interventions to support psychological coping. METHODS: People with chronic kidney disease (CKD) (non-dialysis and transplant) were recruited from 11 hospital sites across England between August and December 2020. Participants responded to an online survey study, including the Brief Coping Orientation to Problem Experienced (COPE) Inventory, Depression, Anxiety and Stress Scale (DASS-21), Short Health Anxiety Index (SHAI), and Patient Activation Measure (PAM-13). A follow-up survey was conducted 6-9 months later. Paired t tests assessed within-group changes, and chi-squared tests compared coping strategies utilised by low- and high-activated participants. General linear modelling was performed to determine the relationship between patient activation and coping strategies, and covariates. RESULTS: Two hundred and fourteen participants were recruited (mean age: 60.7, 51% male, mean eGFR: 38.9 ml/min/1.73 m2). Low-activated participants were significantly more anxious than high-activated participants (P = 0.045). Health anxiety significantly decreased (i.e., got better) for high-activated participants (P = 0.016). Higher patient activation scores were associated with greater use of problem-focused strategies (ß = 0.288, P < 0.001). Age (ß = - 0.174, P = 0.012), sex (ß = 0.188, P = 0.004), and education level (ß = 0.159, P = 0.019) significantly predicted use of problem-focused strategies. DISCUSSION: Those with higher activation had lower levels of anxiety, and more frequently used adaptive coping strategies during the pandemic. Targeted support and interventions may be required for people with CKD to enhance patient activation, encourage more positive adaptive coping strategies, and mitigate maladaptive coping strategies.

General practitioners' representation of early-stage CKD is a barrier to adequate management and patient empowerment: a phenomenological study.

BACKGROUND: In high-income countries, chronic kidney disease (CKD) affects over 10% of the population. Identifying these patients early is a priority, especially as new treatments are available to reduce the risk of cardiovascular and renal morbidity. We aimed at understanding the management and care pathway of patients with early-to-moderate CKD defined as an estimated glomerular filtration rate (eGFR) ≥ 45 mL/min/1.73 m2 (CKD-EPI), by analyzing the experience of general practitioners in a region in France. METHODS: This qualitative semiopragmatic phenomenological study analyzed in-depth interviews held with a purposive sample (age, gender, training, type of practice, rural/urban context) of 24 general practitioners, with triangulation of research until data saturation. RESULTS: From diagnostic, etiological and prognostic viewpoints, the general practitioners enrolled in our study perceived CKD as a complex, poorly-defined clinical entity in asymptomatic and multimorbid patients. They distinguished it from a rare condition they considered as 'mainly renal'. The fact that they did not perceive early-stage CKD as a disease was a hindrance to patient care, which should protect the kidneys with a preventive approach. Indeed, general practitioners perceived CKD patient management as a pathway requiring a personalized, integrative model, common to all chronic diseases, without necessarily involving a nephrologist, at least in the early stages. CONCLUSIONS: This study shows how the general practitioners' representations influence their attitudes and interventions. Clarifying the concept of early-stage CKD by taking factors like age and etiology into account would facilitate personalized management of this heterogeneous, often multimorbid, population. Finally, organizational models to support patient empowerment in an integrative care pathway must be established and validated.

Examining the acceptability and feasibility of the Compassionate Mindful Resilience (CMR) programme in adults living with chronic kidney disease: the COSMIC study findings.

BACKGROUND: Individuals with chronic kidney disease experience difficult physical and psychological symptoms, that impact quality of life, and are at increased risk of anxiety and depression. Access to specialist psychological support is limited. This study aimed to support a new service development project, in collaboration with Kidney Care UK, to implement the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, which provides accessible mindfulness techniques and practices to enhance compassion and resilience, and explore its feasibility for people living with stage 4 or 5 kidney disease and transplant. METHODS: A multi-method feasibility design was utilised. Participants over 18 years, from the UK, with stage 4 or 5 kidney disease or post-transplant, and who were not currently undergoing psychotherapy, were recruited to the four-week CMR programme. Data was collected at baseline, post-intervention and three-months post to measure anxiety, depression, self-compassion, mental wellbeing, resilience, and mindfulness. The acceptability of the intervention for a kidney disease population was explored through qualitative interviews with participants, and the Mindfulness Teacher. RESULTS: In total, 75 participants were recruited to the study, with 65 completing the CMR programme. The majority were female (66.2%) and post-transplant (63.1%). Analysis of completed outcome measures at baseline and post-intervention timepoints (n = 61), and three-months post intervention (n = 45) revealed significant improvements in participant's levels of anxiety (p < .001) and depression (p < .001), self-compassion (p = .005), mental wellbeing (p < .001), resilience (p.001), and mindfulness (p < .001). Thematic analysis of interviews with participants (n = 19) and Mindfulness Teacher (n = 1) generated three themes (and nine-subthemes); experiences of the CMR programme that facilitated subjective benefit, participants lived and shared experiences, and practicalities of programme participation. All participants interviewed reported that they found programme participation to be beneficial. CONCLUSION: The findings suggest that the CMR programme has the potential to improve psychological outcomes among people with chronic kidney disease. Future randomized controlled trials are required to further test its effectiveness.

Network of depressive symptoms before and after a diagnosis of chronic kidney disease.

OBJECTIVE: A diagnosis of chronic kidney disease (CKD) may increase the risk for depression. The network perspective focuses on dynamic relationships among individual symptoms, which could advance our understanding of the development of depression during the transition to a diagnosis of CKD. The aim of this study was to use network analysis to examine the longitudinal associations of depressive symptoms from before to after a diagnosis of CKD. METHOD: The analytic sample included 1,386 participants from the Chinese Health and Retirement Longitudinal Study. Participants were aged 45 years or older and reported a doctor's diagnosis of CKD in any wave of interviews between 2011 and 2018. Depressive symptoms were measured by the 10-item version of the Center for Epidemiological Studies Depression. Cross-lagged panel network analysis was conducted to examine relationships between symptoms at three time points: prediagnosis; onset of diagnosis, and postdiagnosis). RESULTS: After controlling for other symptoms and covariates, feeling unable to get going and less happiness at prediagnosis were the most predictive of other symptoms at the diagnosis of CKD. Feeling effortful to do everything and depressed mood at the diagnosis of CKD were the most predictive of other symptoms at postdiagnosis. CONCLUSIONS: Fatigue (i.e., feeling unable to get going, feeling effortful to do everything), less happiness, and depressed mood were central symptoms during the transition to a diagnosis of CKD. These findings highlight the benefits of identifying and managing these central symptoms to reduce the risk of activating other depressive symptoms. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Mental Health and Quality of Life in Chronic Kidney Disease Patients with Mild-to-Moderate Depression: A Retrospective Cohort Study of Mindfulness-Based Stress Reduction Therapy

Background: Chronic kidney disease (CKD) patients may experience pessimism, and even despair, due to long-term nature of the condition, which increases the risk of depression. Mindfulness-based stress reduction (MBSR) can relieve depression. This retrospective cohort study aimed to investigate the effects of MBSR on mental health and quality of life in CKD patients with mild-to-moderate depression, so as to provide guidance for clinical nursing programs. Methods: The clinical data of 100 CKD patients with mild-to-moderate depression who were treated in Jiading District Central Hospital Affiliated Shanghai University of Medicine & Health Sciences from January 2021 to March 2023 were retrospectively analyzed. Based on nursing method received, the patients were divided into the conventional group (conventional management) and the MBSR group (MBSR therapy was implemented in addition to conventional management). After matching, there were 35 cases in each group. The scores for the self-rating depression scale (SDS), Connor-Davidson Resilience Scale (CD-RISC), Five-factor Mindfulness Questionnaire (FFMQ), Pittsburgh Sleep Quality Index (PSQI), and 36-item Short Form Health Survey (SF-36) were compared between the two groups. Results: After management, the SDS and PSQI scores of the MBSR group were lower than those of the conventional group, and the CD-RISC, FFMQ and SF-36 scores were higher than those of the conventional group (p < 0.05). Conclusion: MBSR can improve the mental health, sleep quality, and quality of life of CKD patients with mild-to-moderate depression, and improve psychological resilience and mindfulness. (AU)

Patient delay in chronic kidney disease: A qualitative study.

This study aimed to investigate the reasons for patient delay in chronic kidney disease (CKD) and provide a scientific basis for implementing effective interventions. With the adoption of the phenomenological method in qualitative research, semi-structured, face-to-face interviews were conducted with 14 cases, and the Colaizzi seven-step analysis method was used to analyze the interview data and refine the themes. A total of 4 themes were obtained, namely, a cognitive explanation of illness, negative psychological emotions, socioeconomic levels, and limited medical resources. The current status of patient delay in chronic kidney disease is serious, and there are various reasons for it. Health management departments and healthcare providers at all levels should pay attention to this situation and provide targeted supportive interventions and health education to help patients establish the correct awareness of medical consultation and effectively improve their quality of survival.

Assessment of Health-Related Quality of Life in Chronic Kidney Disease Patients: A Hospital-Based Cross-Sectional Study.

Background: Health-related quality of life is rapidly becoming recognized as an important indicator of how a disease affects patient lives and for evaluating the quality of care, especially for chronic conditions such as chronic kidney disease (CKD). Objectives: This study is an attempt to assess the quality of life in patients with chronic kidney disease at MMIMSR and also identify characteristics that may be associated with their worsening quality of life. Materials and Methods: This cross-sectional investigation was conducted at the in-patient department (IPD) of the MMIMSR hospital. This study included 105 CKD patients and used a systematic random sampling method for quantitative analysis. This study utilized a 36-item short-form SF-36 (v1.3) questionnaire to assess HRQoL in CKD patients. Descriptive statistics were employed at the baseline. Chi square and ANOVA were used to draw comparisons between two groups or more than two groups, respectively. Logistic regression analysis was utilized to identify the potential QoL determinants. A p value of 0.05 or lower was used to determine statistical significance. Results: Among a total of 105 participants, the mean (±standard deviation) age was found to be 54.53 ± 13.47 years; 48 were male patients, and 57 were female patients. Diabetes Mellitus (61.9%), hypertension (56.2%), chronic glomerulonephritis (7.6%), chronic pyelonephritis (6.7%), and polycystic kidney disease (5.7%) were identified to be the most frequent disorders associated with CKD. The current study also demonstrated that the HRQoL score domains such as symptom problem list, the effect of kidney disease, and the burden of kidney disease decline significantly and progressively as the patient advances into higher stages of CKD (p = 0.005). A similar pattern was observed in work status, sleep, and general health (p < 0.005). Additionally, a statistically significant difference was noted for cognitive function, quality of social interaction, overall health, dialysis staff encouragement, patient satisfaction, social support, physical functioning, role of physical health, pain, emotional well-being, role of emotional health, social functioning, and energy fatigue (p < 0.005). The mean difference for PCS and MCS based on CKD stages was found to be statistically significant (p < 0.005). The PCS and MCS showed a positive correlation with GFR (r = 0.521), and Hb (r = 0.378), GFR (r = 0.836), and Hb (r = 0.488), respectively. Conclusions: The findings of this study demonstrated that a significant decrease in HRQoL was observed among CKD patients, with a progressive deterioration of HRQoL dimensions as the patient advances to end-stage renal disease. This study also revealed that CKD imposes various restrictions on patients' day-to-day lives, particularly in terms of their physical and mental functioning, even in the initial stages of the disease.

The Relationship Between Sleep and Brain Function in Older Adults With Chronic Kidney Disease and Self-Identified Cognitive Impairment.

Older adults with chronic kidney disease (CKD) are at risk for cognitive impairment and sleep disturbances. The purpose of the current study was to investigate the relationship between sleep and brain structure/function in older adults with CKD and self-identified cognitive impairment. The sample (N = 37) had a mean age of 68 years (SD = 4.9 years), estimated glomerular filtration rate of 43.7 mL/min/1.73m2 (SD = 10.98), median sleep time of 7.4 hours, and was 70% female. Sleeping <7.4 hours, compared to ≥7.4 hours, was associated with better attention/information processing (ß = 11.46, 95% confidence interval [CI] [3.85, 19.06]) and better learning/memory (ß = 2.06, 95% CI [0.37, 3.75]). Better sleep efficiency was associated with better global cerebral blood flow (ß = 3.30, 95% CI [0.65, 5.95]). Longer awake length after sleep onset was associated with worse fractional anisotropy of the cingulum (ß = -0.01, 95% CI [-0.02, -0.003]). Sleep duration and continuity may be related to brain function in older adults with CKD and self-identified cognitive impairment. [Journal of Gerontological Nursing, 49(7), 31-39.].

The Impact of the COVID-19 Pandemic on Patients With CKD: Systematic Review of Qualitative Studies.

RATIONALE & OBJECTIVE: COVID-19 disproportionately affects people with comorbidities, including chronic kidney disease (CKD). We describe the impact of COVID-19 on people with CKD and their caregivers. STUDY DESIGN: A systematic review of qualitative studies. SETTING & STUDY POPULATIONS: Primary studies that reported the experiences and perspectives of adults with CKD and/or caregivers were eligible. SEARCH STRATEGY & SOURCES: MEDLINE, Embase, PsycINFO, CINAHL searched from database inception to October 2022. DATA EXTRACTION: Two authors independently screened the search results. Full texts of potentially relevant studies were assessed for eligibility. Any discrepancies were resolved by discussion with another author. ANALYTICAL APPROACH: A thematic synthesis was used to analyze the data. RESULTS: Thirty-four studies involving 1,962 participants were included. Four themes were identified: exacerbating vulnerability and distress (looming threat of COVID-19 infection, intensifying isolation, aggravating pressure on families); uncertainty in accessing health care (overwhelmed by disruption of care, confused by lack of reliable information, challenged by adapting to telehealth, skeptical about vaccine efficacy and safety); coping with self-management (waning fitness due to decreasing physical activity, diminishing ability to manage diet, difficulty managing fluid restrictions, minimized burden with telehealth, motivating confidence and autonomy); and strengthening sense of safety and support (protection from lockdown restrictions, increasing trust in care, strengthened family connection). LIMITATIONS: Non-English studies were excluded, and inability to delineate themes based on stage of kidney and treatment modality. CONCLUSIONS: Uncertainty in accessing health care during the COVID-19 pandemic exacerbated vulnerability, emotional distress, and burden, and led to reduced capacity to self-manage among patients with CKD and their caregivers. Optimizing telehealth and access to educational and psychosocial support may improve self-management and the quality and effectiveness of care during a pandemic, mitigating potentially catastrophic consequences for people with CKD. PLAIN-LANGUAGE SUMMARY: During the COVID-19 pandemic, patients with chronic kidney disease (CKD) faced barriers and challenges to accessing care and were at an increased risk of worsened health outcomes. To understand the perspectives about the impact of COVID-19 among patients with CKD and their caregivers, we conducted a systematic review of 34 studies involving 1,962 participants. Our findings demonstrated that uncertainty in accessing care during the COVID-19 pandemic exacerbated the vulnerability, distress, and burden of patients and impaired their abilities for self-management. Optimizing the use of telehealth and providing education and psychosocial services may mitigate the potential consequences for people with CKD during a pandemic.

The Role of Spirituality in Anxiety and Psychological Resilience of Hemodialysis Patients in Turkey.

Chronic kidney disease (CKD) is a significant health problem that affects millions of people worldwide and its end-stage manifestation requires hemodialysis treatment, which can have a considerable impact on patients' mental health and quality of life. This study aims to examine the relationship between spirituality and anxiety, as well as spirituality and psychological resilience among hemodialysis patients using the iterative weighted least squares method. Participants included 91 hemodialysis patients, consisting of 49 females and 42 males, whose ages ranged from 20 to 82 years, with a mean age of 48 (SD = 14). The data were collected using the Beck Anxiety Inventory, Spirituality Scale, and Brief Psychological Resilience Scale. Results indicated a weak positive relationship between spirituality and psychological resilience (t = 1.35, P = .183) and a moderate negative relationship between spirituality and anxiety (t = -2.84, P = .006). Furthermore, spirituality accounted for a 1% variance in psychological resilience and a 5% of the variance in anxiety. Additionally, patients' education level, gender, and whom they live with were relatively stronger correlates of psychological resilience, while the patient's education level, gender, marital status, whom they live with, presence of another patient at home receiving hemodialysis treatment were strong correlates of anxiety. This study emphasizes the need for comprehensive care that addresses both physical and psychological aspects of CKD management to improve patient outcomes and quality of life.

Adult Renal Dysfunction and Risk of Dementia or Cognitive Decline: Brain-Kidney Axis Hypothesis Based on a Systematic Review and Meta-Analysis.

OBJECTIVE: The brain-kidney axis was proposed to emphasize roles of kidney functioning in modulating neurodegeneration. We aimed to evaluate the associations of renal diseases and blood markers with risk of dementia or cognitive decline among non-demented adults. METHODS: The PubMed, EMBASE, and Cochrane library were searched until February 1st, 2022, to include longitudinal studies. Multivariate adjusted effects were pooled by random-effects models. The robust error meta-regression models were used for dose-response analyses. The credibility of meta-analyses was graded and an innovative index (Sdifference) was developed to evaluate the evidence tendency. RESULTS: A total of 41 longitudinal studies (6,480,136 participants, mean age range: 58.5-83.5 years) were included, of which 33 were for meta-analyses. Though with low level of evidence, five indicators of kidney were associated with increased risk of dementia or cognitive decline, including acute kidney injury (hazard ratio [HR] = 2.24, p = 0.0001), chronic kidney disease (HR = 1.29, p = 0.0001), higher serum creatinine (HR = 1.35, p = 0.0001), higher urine albumin creatine ratio (UACR, HR = 1.23, p = 0.0001), and lower estimated glomerular filtration rate (eGFR, HR = 1.18, p = 0.0001). A linear relationship was revealed for eGFR (p = 0.0217) or UACR (p = 0.0006). Heterogeneity is a main concern to jeopardize the evidence robustness, especially for eGFR (Sdifference = 0.05). CONCLUSION: Some renal indicators were associated with a higher risk of dementia, though the evidence base warrants further strengthening. Renal function management might serve as a promising target for dementia prediction and prevention.

The experience of relatives and friends of patients with moderate to advanced chronic kidney disease: Insights from the CKD-REIN cohort study.

OBJECTIVES: The transition from chronic kidney disease (CKD) to kidney failure requiring kidney replacement therapy (KRT; i.e., dialysis or transplantation) to sustain life is a stressful event for patients. Families play a role in patients' treatment decision-making, but little is known about how they are involved. This study aimed to explore the experience of CKD among relatives and friends, their views and involvement in KRT choice. DESIGN/METHODS: We conducted a qualitative study among 56 relatives or friends of patients with moderate to advanced CKD who were enrolled in the CKD-REIN cohort study. A psychologist conducted semi-structured interviews about their experience with CKD, treatment decision-making and their role in this process. Data were analysed using statistical text analysis. RESULTS: The mean age of participants was 56.4 ± 14 years; 75% were women, 61% were patients' partners and 48% had a relative or friend with stage G4 CKD. The analysis yielded four lexical classes: listeners with an opinion, coping with CKD on a daily basis, narrating patients' nephrological monitoring and emotions behind facts. Participants reported a listening role in the decision-making period and information needs. Some reported that CKD had no impact on their own daily lives, but others talked about its current and future physical, psychological and social consequences on them, the patients and their relationships. CONCLUSIONS: Most relatives/friends reported having little influence on KRT decision-making but expressed opinions on these treatments. Including relatives/friends in education on KRT and providing them with decision aids, especially when family members are supportive, may allow for more suitable decisions.

Identification of illness representational patterns and examining differences of self-care behavior in the patterns in chronic kidney disease.

Self-care behavior is considered important for preventing the progression of chronic kidney disease (CKD). Although lifestyle interventions are popular, they have not been sufficiently effective. According to studies on other chronic diseases, illness representation has been found to formulate a pattern, and self-care behavior could differ depending on the pattern, which suggests difference in self-care behavior based on illness representation. This study examined what kind of illness representational patterns exist among CKD patients and whether there is a difference in self-care behavior depending on the pattern. A survey was conducted from the beginning of June to the end of October 2019 on 274 CKD patients who were either outpatients or hospitalized at general hospitals in Western Japan. The Illness Perception Questionnaire-Revised was used to assess illness representation and the Japanese Chronic Kidney Disease Self-Care scale was used to assess self-care behavior. Two-stage cluster analysis was used to identify clusters. Cluster features were examined using analysis of variance and Tukey HSD tests. Differences in self-care behavior scores among identified clusters were investigated. Two hundred and forty-four questionnaires were received, and 212 were analyzed. Participants were aged 64.9±12.9, and the estimated glomerular filtration rate was 33.7±15.8. Three clusters were identified: Cluster 1 represented the difficulty of making sense of the changed condition caused by the disease and easily falling into misunderstanding; Cluster 2 represented patients with disease conditions that impacted their daily life and emotional responses; Cluster 3 represented the controllability and understandability of the disease. Total self-care behavior scores indicated a significant difference between Cluster 1 (52.1 ± 9.7) and Cluster 3 (57.7 ± 8.2). In conclusion, we showed that three representational patterns exist among CKD patients. In addition, a difference was found in self-care behavior depending on the illness representational pattern, suggesting the need to focus on illness representation.

High rates of psychological distress, mental health diagnoses and suicide attempts in people with chronic kidney disease in Ireland.

BACKGROUND: People with chronic kidney disease (CKD) experience high levels of psychological distress, which is associated with higher mortality and adverse health outcomes. Little is known about the rates of a range of mental health difficulties or rates of suicide attempts in people with CKD. METHODS: Individuals with CKD (n = 268; age range 18-94 years, mean = 49.96 years) on haemodialysis (n = 79), peritoneal dialysis (n = 46), transplant recipients (n = 84) and who were not on renal replacement therapy (RRT; n = 59) were recruited through the Irish Kidney Association social media pages and three Irish hospitals. Participants completed surveys to gather demographics and mental health histories, the Hospital Anxiety and Depression Scale (HADS) and the 12-item Short Form Health Survey (SF-12) to measure health-related quality of life (HRQoL). RESULTS: A total of 23.5% of participants self-reported they had received a mental health diagnosis, with depression (14.5%) and anxiety (14.2%) being the most common, while 26.4% of participants had experienced suicidal ideation and 9.3% had attempted suicide. Using a clinical cut-off ≥8 on the HADS subscales, current levels of clinically significant anxiety and depression were 50.7% and 35.4%, respectively. Depression levels were slightly higher for those on haemodialysis compared with those with a transplant and those not on RRT. Depression, anxiety and having a mental health diagnosis were all associated with lower HRQoL. CONCLUSIONS: People with CKD in Ireland experience high levels of psychological distress, mental health difficulties, suicidal ideation and suicide attempts. The identification of and intervention for mental health difficulties in CKD should be prioritised in clinical care.

Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study.

BACKGROUND: Children with chronic kidney disease (CKD) generally have worse educational and psychosocial outcomes compared with their healthy peers. This can impair their ability to manage their treatment, which in turn can have long-term health consequences through to adulthood. We attempted to capture the experiences of children with CKD and to describe the perspectives of their parents and caregivers on access to educational and psychosocial support. METHODS: Children with CKD (n = 34) and their caregivers (n = 62) were sampled via focus groups from pediatric hospitals in Australia, Canada, and the USA. Sixteen focus groups were convened and the transcripts were analyzed thematically. RESULTS: We identified four themes: disruption to self-esteem and identity (emotional turmoil of adolescence, wrestling with the sick self, powerlessness to alleviate child's suffering, balancing normality and protection); disadvantaged by lack of empathy and acceptance (alienated by ignorance, bearing the burden alone); a hidden and inaccessible support system (excluded from formal psychological support, falling behind due to being denied special considerations); and building resilience (finding partners in the journey, moving towards acceptance of the illness, re-establishing childhood). CONCLUSIONS: Children with CKD and their caregivers encountered many barriers in accessing psychosocial and educational support and felt extremely disempowered and isolated as a consequence. Improved availability and access to psychosocial and educational interventions are needed to improve the wellbeing and educational advancement of children with CKD. A higher resolution version of the Graphical abstract is available as Supplementary information.

Ignorance is Not Bliss: The Case for Comprehensive Reproductive Counseling for Women with Chronic Kidney Disease.

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population.

Negotiating treatment and managing expectations in chronic kidney disease: A qualitative study in Argentina.

OBJECTIVES: To describe how patients with CKD negotiated assigned responsibilities in the management of their disease, resulting in potential relational nonadherence. METHODS: Qualitative study performed in two healthcare facilities in Buenos Aires, Argentina, including 50 patients and 14 healthcare providers. We conducted semistructured interviews which were analysed using a frame of reference with concepts of Burden of Treatment and Cognitive Authority theories. FINDINGS: Adherence to treatment defined "good patients". Patients needed to negotiate starting treatment, its modality and dialysis schedule, although most patients felt they did not participate in the decision process and that providers did not acknowledge implications of these decisions on their routine. Some patients skipped dialysis if concerns were not attended. Regularly, patients negotiated frequency of visits, doses, dietary restrictions and redefined relationships with their support networks, sometimes with devasting effects. As a result of overwhelming uncertainty some patients refused enrolling into a transplant program. When the frequency of complications increased, patients considered abandoning dialysis. CONCLUSION: When patients perceived demands were excessive or conflicting, they entered into negotiations. Relationally induced nonadherence may arise when professionals do not or cannot enter into negotiations over patients' beliefs or knowledge about what is possible for them to do.

Psychosocial Distress in Patients With Advanced CKD by Racial Group and Immigrant Status: A Canadian Cross-sectional Study.

RATIONALE & OBJECTIVE: Patients with advanced chronic kidney disease (CKD) have been reported to experience profound psychosocial distress. Other work has established that patients with CKD from marginalized populations (including individuals who on the basis of race often face racism and related discrimination, termed "racialization") experience health care inequities. Given limited information on the intersection of these 2 phenomena, we assessed the association of psychosocial distress with racialized status and immigrant status in Canadians with advanced CKD. STUDY DESIGN: Secondary analysis of cross-sectional data. SETTING & PARTICIPANTS: 536 patients with advanced CKD (estimated glomerular filtration rate<30mL/min/1.73m2, with or without kidney replacement therapy) from multiple clinical centers in Toronto. EXPOSURE: Racialized status (individuals who identify as Asian or as African, Caribbean, or Black Canadian), immigrant status, and combined immigrant-racialized status. OUTCOME: Psychosocial distress, defined as the presence of depression, anxiety, or social difficulties (ie, a score of≥10 points on the Patient Health Questionnaire 9, Generalized Anxiety Disorder 7, or Social Distress 16 scales, respectively). ANALYTICAL APPROACH: The independent associations of racialized status and immigrant status with psychosocial distress, depression, anxiety, and social difficulties were examined using univariable- and multivariable-adjusted logistic regression. RESULTS: Mean age of the 536 participants was 57±16 (SD) years, 62% were male, and 45% were immigrants. Of the sample, 58% were White, 22% were African, Caribbean, or Black Canadian, and 20% were Asian. Psychosocial distress was present in 36% of participants (depression in 19%, anxiety in 12%, and social difficulties in 31%). To assess the combined impact of racialized and immigrant status, we created a variable with mutually exclusive categories: White nonimmigrant, racialized nonimmigrant, White immigrant, and racialized immigrant participants. In our final multivariable-adjusted model, compared with White nonimmigrant participants, racialized immigrant participants were more likely to have psychosocial distress (OR, 2.96 [95% CI, 1.81-4.81]), depression (OR, 1.87 [95% CI, 1.05-3.34]), and social difficulties (OR, 3.36 [95% CI, 2.03-5.57]). Overall similar associations were seen for racialized nonimmigrants and for White immigrants. LIMITATIONS: Convenience sample; small subgroups; combined exposure variable grouping Asian and African, Caribbean, and Black participants together; lack of data about mechanisms. CONCLUSIONS: Both racialized and immigrant status based on self-report of demographic characteristics were associated with psychosocial distress among patients with advanced CKD. These patients may benefit from culturally competent psychosocial support. PLAIN-LANGUAGE SUMMARY: Psychosocial distress is frequent in patients with advanced chronic kidney disease and impacts quality of life and clinical outcomes. Psychosocial distress may be especially scarring in people who are racialized (marginalized on account of their membership in a particular racial group) and/or who are immigrants. We assessed the association of psychosocial distress with racialized and immigrant status in Canadians with advanced chronic kidney disease. Among 536 participants from multiple medical centers in Toronto, we found that racialized and immigrant participants were more likely to have psychosocial distress, depression, and social difficulties compared with White nonimmigrant participants. This is likely related to the multiple intersectional challenges, including experience with racism and discrimination that racialized immigrant patients may face. Further studies are needed to elucidate the specific factors that contribute to more distress. The potential impact of culturally competent and safe support for these patients will also need to be studied.