Psychometric validation of the 15-item Patient Health Questionnaire - Anxiety and Depression Scale (PHQ-ADS) to assess psychological distress in breast cancer survivors.

OBJECTIVE: Psychological distress persists amongst breast cancer survivors, so reliable assessment of symptoms is essential. The Patient Health Questionnaire Anxiety and Depression Scale (PHQ-ADS) is a composite measure of depression and anxiety and has been used to measure distress. This study aimed to evaluate the psychometric properties of the PHQ-ADS within breast cancer survivors. METHOD: Breast cancer survivors (N = 280) were recruited online and followed up at 12-months. Depression (PHQ-8) and anxiety (GAD-7) items formed the composite PHQ-ADS score. Additional measures included: distress thermometer (convergent validity), fear of cancer recurrence and COVID distress (discriminant validity), and self-compassion (predictive validity). Confirmatory factor analysis (CFA) using weighted least squares mean and variance adjusted estimation was undertaken. RESULTS: One, two, and bifactor models underlying the PHQ-ADS were evaluated. The bifactor model had the most appropriate model fit overall. Omega hierarchical for the general distress factor was 0.914, accounting for 82% of explained variance. This suggests the PHQ-ADS is sufficiently unidimensional to warrant use of a total composite score. The PHQ-ADS demonstrated strong convergent and moderate discriminant validity. Self-compassion was an independent predictor of distress at 12-months. CONCLUSIONS: The PHQ-ADS is a valid measure for psychological distress in breast cancer survivors prescribed hormone therapy.

The identification and management of depression in UK Kidney Care: Results from the Mood Maps Study.

BACKGROUND: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care. OBJECTIVES: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care. DESIGN: Online survey. METHODS: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision. RESULTS: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long-term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident. CONCLUSIONS: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue.

The development and internal pilot trial of a digital physical activity and emotional well-being intervention (Kidney BEAM) for people with chronic kidney disease.

This trial assessed the feasibility and acceptability of Kidney BEAM, a physical activity and emotional well-being self-management digital health intervention (DHI) for people with chronic kidney disease (CKD), which offers live and on-demand physical activity sessions, educational blogs and videos, and peer support. In this mixed-methods, multicentre randomised waitlist-controlled internal pilot, adults with established CKD were recruited from five NHS hospitals and randomised 1:1 to Kidney BEAM or waitlist control. Feasibility outcomes were based upon a priori progression criteria. Acceptability was primarily explored via individual semi-structured interviews (n = 15). Of 763 individuals screened, n = 519 (68%, 95% CI 65 to 71%) were eligible. Of those eligible, n = 303 (58%, 95% CI 54-63%) did not respond to an invitation to participate by the end of the pilot period. Of the 216 responders, 50 (23%, 95% CI 18-29%) consented. Of the 42 randomised, n = 22 (10 (45%) male; 49 ± 16 years; 14 (64%) White British) were allocated to Kidney BEAM and n = 20 (12 (55%) male; 56 ± 11 years; 15 (68%) White British) to the waitlist control group. Overall, n = 15 (30%, 95% CI 18-45%) withdrew during the pilot phase. Participants completed a median of 14 (IQR 5-21) sessions. At baseline, 90-100% of outcome data (patient reported outcome measures and a remotely conducted physical function test) were completed and 62-83% completed at 12 weeks follow-up. Interview data revealed that remote trial procedures were acceptable. Participants' reported that Kidney BEAM increased their opportunity and motivation to be physically active, however, lack of time remained an ongoing barrier to engagement with the DHI. An randomised controlled trial of Kidney BEAM is feasible and acceptable, with adaptations to increase recruitment, retention and engagement.Trial registration NCT04872933. Date of first registration 05/05/2021.

Approaches to the identification and management of depression in people living with chronic kidney disease: A scoping review of 860 papers.

BACKGROUND: Depression is prevalent across the spectrum of Chronic Kidney Disease and associated with poorer outcomes. There is limited evidence regarding the most effective interventions and care pathways for depression in Chronic Kidney Disease. OBJECTIVES: To investigate how depression is identified and managed in adults with Chronic Kidney Disease. DESIGN: Scoping review. METHODS: Systematic search of eight databases with pre-defined inclusion criteria. Data relevant to the identification and/or management of depression in adults with Chronic Kidney Disease were extracted. RESULTS: Of 2147 articles identified, 860 were included. Depression was most identified using self-report screening tools (n = 716 studies, 85.3%), with versions of the Beck Depression Inventory (n = 283, 33.7%) being the most common. A total of 123 studies included data on the management of depression, with nonpharmacological interventions being more frequently studied (n = 55, 45%). Cognitive Behavioural Therapy (n = 15) was the most common nonpharmacological intervention, which was found to have a significant effect on depressive symptoms compared to controls (n = 10). However, how such approaches could be implemented as part of routine care was not clear. There was limited evidence for antidepressants use in people with Chronic Kidney Disease albeit in a limited number of studies. CONCLUSIONS: Depression is commonly identified using validated screening tools albeit differences exist in reporting practices. Evidence regarding the management of depression is mixed and requires better-quality trials of both pharmacological and nonpharmacological approaches. Understanding which clinical care pathways are used and their evidence, may help facilitate the development of kidney care specific guidelines for the identification and management of depression.

Psychosocial and Clinical Associations of Fatigue Severity and Fatigue-Related Impairment in Kidney Transplant Recipients.

Debilitating fatigue is common in people living with kidney disease and often persists after a kidney transplant. Current understanding of fatigue is centered around pathophysiological processes. Little is known about the role of cognitive and behavioral factors. The aim of this study was to evaluate the contribution of these factors to fatigue among kidney transplant recipients (KTRs). A cross-sectional study of 174 adult KTRs who completed online measures of fatigue, distress, illness perceptions, and cognitive and behavioral responses to fatigue. Sociodemographic and illness-related information was also collected. 63.2% of KTRs experienced clinically significant fatigue. Sociodemographic and clinical factors explained 16.1% and 31.2% of the variance in the fatigue severity and fatigue impairment, respectively, increasing by 28% and 26.8% after adding distress. In adjusted models, all the cognitive and behavioral factors except for illness perceptions were positively associated with increased fatigue-related impairment, but not severity. Embarrassment avoidance emerged as a key cognition. In conclusion, fatigue is common following kidney transplantation and associated with distress and cognitive and behavioral responses to symptoms, particularly embarrassment avoidance. Given the commonality and impact of fatigue in KTRs, treatment is a clinical need. Psychological interventions targeting distress and specific beliefs and behaviors related to fatigue may be beneficial.

Association Between Optimism and Incident Stroke Among Stroke Survivors: Findings From the English Longitudinal Study of Ageing.

BACKGROUND: Personality has been implicated in stroke death. However, the role of personality in stroke incidence is unclear. PURPOSE: Our primary aim was to investigate associations between optimism, determination, control, and the "Big Five" personality traits on incident stroke. A secondary aim was to assess the potential mediating role of health behaviors in the personality-stroke relationship. METHODS: A total of 3,703 stroke-free participants from the English Longitudinal Study of Ageing provided data on personality using the Midlife Development Inventory at Wave 5 (2010/11). Self-reported incident stroke was assessed from Waves 6 to 8 (2012-2017). Associations were modeled using discrete-time survival proportional odds logistic models. Analyses were adjusted for sociodemographic factors, history of other cardiometabolic diseases, and health behaviors. RESULTS: Over 6 years follow-up there were 125 incident strokes. Higher optimism (hazard ratio [HR] = 0.66; 95% confidence interval [CI] 0.53, 0.82), openness (HR = 0.72; 95% CI 0.53, 0.98), and conscientiousness (HR = 0.59; 95% CI 0.42, 0.84) were associated with reduced incident stroke risk in unadjusted models. After adjustment for sociodemographic factors and history of cardiometabolic disease, only the association between optimism and incident stroke remained significant (HR = 0.72; 95% CI 0.57, 0.92). The effect of optimism remained significant in a final model adjusting for health behaviors (HR = 0.75; 95% CI 0.60, 0.96). There was evidence of a small but significant mediating effect of physical activity. CONCLUSIONS: Higher trait optimism was associated with reduced stroke risk. This association was partially mediated by physical activity albeit the effect was small, and caution warranted inferring causality. The interplay of personality, behavior, and clinical risk factors in stroke incidence and survivorship needs further investigation.

Personality can influence health. Research has linked traits such as optimism with reduced risk of heart attack. This study set out to investigate whether optimism and other personality traits could also influence the risk of stroke. A total of 3,703 people aged 50 and over living in England filled in questionnaires on personality. They were then followed for 6 years to see who developed stroke. The study found that more optimistic people had a reduced risk of stroke. People who had more conscientious and more open personality types also had a lower risk of stroke. However, the strongest effects were found for optimism, where optimistic people had a lower stroke risk regardless of their clinical risk or health behaviors. It is unknown why optimism may help reduce stroke risk. One possibility coming from the study data suggests that optimistic people are more likely to be physically active which then helps reduce stroke risk. More research is needed to understand how personality might influence health behaviors to reduce the risk of people having a stroke.

Evaluating the effect of a digital health intervention to enhance physical activity in people with chronic kidney disease (Kidney BEAM): a multicentre, randomised controlled trial in the UK.

BACKGROUND: Remote digital health interventions to enhance physical activity provide a potential solution to improve the sedentary behaviour, physical inactivity, and poor health-related quality of life that are typical of chronic conditions, particularly for people with chronic kidney disease. However, there is a need for high-quality evidence to support implementation in clinical practice. The Kidney BEAM trial evaluated the clinical effect of a 12-week physical activity digital health intervention on health-related quality of life. METHODS: In a single-blind, randomised controlled trial conducted at 11 centres in the UK, adult participants (aged ≥18 years) with chronic kidney disease were recruited and randomly assigned (1:1) to the Kidney BEAM physical activity digital health intervention or a waiting list control group. Randomisation was performed with a web-based system, in randomly permuted blocks of six. Outcome assessors were masked to treatment allocation. The primary outcome was the difference in the Kidney Disease Quality of Life Short Form version 1.3 Mental Component Summary (KDQoL-SF1.3 MCS) between baseline and 12 weeks. The trial was powered to detect a clinically meaningful difference of 3 arbitrary units (AU) in KDQoL-SF1.3 MCS. Outcomes were analysed by an intention-to-treat approach using an analysis of covariance model, with baseline measures and age as covariates. The trial was registered with ClinicalTrials.gov, NCT04872933. FINDINGS: Between May 6, 2021, and Oct 30, 2022, 1102 individuals were assessed for eligibility, of whom 340 participants were enrolled and randomly assigned to the Kidney BEAM intervention group (n=173) or the waiting list control group (n=167). 268 participants completed the trial (112 in the Kidney BEAM group and 156 in the waiting list control group). All 340 randomly assigned participants were included in the intention-to treat population. At 12 weeks, there was a significant improvement in KDQoL-SF.13 MCS score in the Kidney BEAM group (from mean 44·6 AU [SD 10·8] at baseline to 47·0 AU [10·6] at 12 weeks) compared with the waiting list control group (from 46·1 AU [10·5] to 45·0 AU [10·1]; between-group difference of 3·1 AU [95% CI 1·8-4·4]; p<0·0001). INTERPRETATION: The Kidney BEAM physical activity platform is an efficacious digital health intervention to improve mental health-related quality of life in patients with chronic kidney disease. These findings could facilitate the incorporation of remote digital health interventions into clinical practice and offer a potential intervention worthy of investigation in other chronic conditions. FUNDING: Kidney Research UK.

Impact of COVID-19 on patient experience of kidney care: a rapid review.

INTRODUCTION: In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. METHODS: It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. RESULTS: The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. CONCLUSIONS: There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.

Body Mindsets are Associated With Pain and Threat-Related Risk Factors for Pain in Survivors of Childhood Cancer.

Pain is a common consequence of childhood cancer. While most research has examined biomedical predictors of post-cancer pain, biopsychosocial conceptualisations such as the cancer threat interpretation (CTI) model hold promise for guiding comprehensive pain management strategies. Guided by the CTI model, this cross-sectional study evaluated correlates of post-cancer pain in childhood cancer survivors including threat-related risk factors (bodily threat monitoring, fear of cancer recurrence, help-seeking) and mindsets about the body. In the preceding three months, 21.8% of the survivors reported chronic pain (>3 months), and 14.3% experienced pain most days. Greater bodily threat monitoring, more fear of cancer recurrence, and more help-seeking were associated with more pain. There was heterogeneity in the mindsets that survivors of childhood cancer hold about their bodies. Holding the mindset that the 'body is an adversary' was associated with more pain, greater bodily threat monitoring, and more fear of cancer recurrence. Holding the mindset that the 'body is responsive' was associated with less bodily threat monitoring, while the mindset that the 'body is capable' was associated with greater help-seeking. A path model demonstrated a significant combined indirect effect of the 'body is an adversary' mindset on pain through bodily threat monitoring and fear of cancer recurrence. Overall, this study supported that a sub-group of childhood cancer survivors experience persistent and interfering pain and provided cross-sectional support for threat-related correlates for pain aligning with the CTI model. Body mindsets were associated with pain and threat-related correlates and may represent a novel target to support survivors with pain. PERSPECTIVE: This article presents associations of body mindsets, threat-related risk factors, and pain in survivors of childhood cancer (aged 11-25), guided by the Cancer Threat Interpretation model. The study indicates that body mindsets may be novel targets to embed in comprehensive post-cancer pain management approaches to support young survivors with pain.

Impact of the COVID-19 pandemic on services for patients with chronic kidney disease: findings of a national survey of UK kidney centres.

BACKGROUND: Services for patients with kidney disease underwent radical adaptations in response to the COVID-19 pandemic. We undertook an online national survey of UK kidney centres to understand the nature, range, and degree of variation in these changes and to explore factors contributing to differing practice. METHODS: The survey was designed by a multidisciplinary team of kidney professionals, service users and researchers. It enquired about centre services and staffing, including psychosocial provision, and changes to these in response to the COVID-19 pandemic. Links to the survey were sent to all 68 UK kidney centres and remained active from December 2021 to April 2022, and a revised version to nurses in late 2022 for additional data. Quantitative data were analysed descriptively. Content analysis on free-text responses identified common themes. RESULTS: Analysable responses were received from 41 out of the 68 UK centres (60%), with partial data from an additional 7 (11%). Adaptations were system-wide and affected all aspects of service provision. Some changes were almost universal such as virtual consultations for outpatient appointments, with significant variation in others. Outpatient activity varied from fully maintained to suspended. Many centres reduced peritoneal dialysis access provision but in some this was increased. Centres considered that changes to transplant surgical services and for patients with advanced CKD approaching end-stage kidney disease had the greatest impact on patients. Few centres implemented adjustments aimed at vulnerable and underrepresented groups, including the frail elderly, people with language and communication needs, and those with mental health needs. Communication issues were attributed to rapid evolution of the pandemic, changing planning guidance and lack of resources. Staffing shortages, involving all staff groups particularly nurses, mainly due to COVID-19 infection and redeployment, were compounded by deficiencies in staffing establishments and high vacancy levels. Centres cited three main lessons influencing future service delivery, the need for service redesign, improvements in communication, and better support for staff. CONCLUSION: Kidney centre responses to the pandemic involved adaptations across the whole service. Though some changes were almost universal, there was wide variation in other areas. Exploring the role of centre characteristics may help planning for potential future severe service disruptions.

The impact of a diabetes diagnosis on health and well-being: Findings from the English Longitudinal Study of Ageing.

BACKGROUND: Poorer health and well-being are associated with diabetes risk. However, little is known about the trajectory of health and well-being from before to after diabetes diagnosis. We compared depressive symptoms, quality of life, self-rated health, and loneliness at three time points (prediagnosis, diagnosis, 2-4 years post diagnosis) in individuals who developed diabetes and a comparison group. METHODS: Health and well-being measures were self-reported by 3474 participants from the English Longitudinal Study of Ageing. Repeated measures analysis of variance and generalized estimating equations were used to investigate differences by group, time, and group-by-time interactions. RESULTS: A total of 473 (13.6%) participants developed diabetes. The diabetes group reported greater depressive symptoms (W2 (1) = 20.67, p < .001) and lower quality of life (F = 1, 2535 = 10.30, p = .001) and were more likely to rate their health as fair/poor (W2 (1) = 67.11, p < .001) across time points, adjusting for age, sex, and wealth. They also reported greater loneliness (F = 1, 2693 = 9.70, p = .002) in unadjusted analyses. However, this was attenuated to the null in adjusted analyses. The group-by-time interaction was significant for quality of life (F = 1.97, 5003.58 = 5.60, p = .004) and self-rated health (W2 (2) = 11.69, p = .003), with a greater decline in these measures over time in the diabetes group in adjusted analyses. CONCLUSION: People who received a diabetes diagnosis had greater depressive symptoms, lower quality of life, and poorer self-rated health than those who did not develop diabetes. Quality of life and self-rated health deteriorated more rapidly following a diagnosis. Screening for these factors around the time of diagnosis could allow for interventions to improve the health and well-being of those with diabetes.

Validation of symptom measures in patients under investigation for postural orthostatic tachycardia syndrome (POTS): The Orthostatic Grading Scale (OGS) and the Symptom Screen for Small-fiber Polyneuropathy (SSS).

OBJECTIVES: Postural Orthostatic Tachycardia Syndrome (POTS) presents with a range of poorly delineated symptoms across several domains. There is an urgent need for standardized symptom reporting in POTS, but a lack of validated symptom burden instruments. Our aim was to evaluate the psychometric properties of two symptom burden measures: the Orthostatic Grading Scale (OGS) and the Symptom Screen for Small-Fiber Polyneuropathy (SSS), in patients under investigation for suspected POTS. DESIGN: Psychometric validation study. METHODS: Confirmatory factor analysis (CFA) tested the factor structure of the SSS and OGS completed by 149 patients under investigation for POTS. Scale reliability and validity were assessed. The uni-dimensionality of the SSS was assessed through principal component analysis (PCA). RESULTS: CFA of the OGS revealed that a 1-factor structure had adequate fit. CFA of the SSS revealed that a 5-factor structure had generally appropriate fit supporting the originally proposed 5 factors (1: Gastrointestinal, 2: Somatosensory, 3: Miscellaneous, 4: Microvascular, and 5: Urological). In addition, the SSS demonstrated sufficient uni-dimensionality in the PCA, warranting use of a single total score. Omega coefficients of both measures indicated satisfactory internal reliability (0.668-0.931). Correlations with related constructs (distress (K10 score), r = 0.317-0.404, p < 0.001) and heart rate indices (with the OGS, r = 0.211-0.294, p < 0.05) suggested sound convergent and divergent validity. CONCLUSIONS: Initial evidence suggests that the OGS and SSS have good psychometric properties for use in populations with suspected and confirmed POTS.

A Randomized Trial of Intravenous Iron Supplementation and Exercise on Exercise Capacity in Iron-Deficient Nonanemic Patients With CKD.

Introduction: Patients with chronic kidney disease (CKD) are often iron deficient, even when not anemic. This trial evaluated whether iron supplementation enhances exercise capacity of nonanemic patients with CKD who have iron-deficiency. Methods: Prospective, multicenter double-blind randomized controlled trial of nondialysis patients with CKD and iron-deficiency but without anemia (Hemoglobin [Hb] >110 g/l). Patients were assigned 1:1 to intravenous (IV) iron therapy, or placebo. An 8-week exercise program commenced at week 4. The primary outcome was the mean between-group difference in 6-minute walk test (6MWT) at 4 weeks. Secondary outcomes included 6MWT at 12 weeks, transferrin saturation (TSAT), serum ferritin (SF), Hb, renal function, muscle strength, functional capacity, quality of life, and adverse events at baseline, 4 weeks, and at 12 weeks. Mean between-group differences were analyzed using analysis of covariance models. Results: Among 75 randomized patients, mean (SD) age for iron therapy (n = 37) versus placebo (n = 38) was 54 (16) versus 61 (12) years; estimated glomerular filtration rate (eGFR) (34 [12] vs. 35 [11] ml/min per 1.73 m2], TSAT (23 [12] vs. 21 [6])%; SF (57 [64] vs. 62 [33]) µg/l; Hb (122.4 [9.2] vs. 127 [13.2] g/l); 6MWT (384 [95] vs. 469 [142] meters) at baseline, respectively. No significant mean between-group difference was observed in 6MWT distance at 4 weeks. There were significant increases in SF and TSAT at 4 and 12 weeks (P < 0.02), and Hb at 12 weeks (P = 0.009). There were no between-group differences in other secondary outcomes and no adverse events attributable to iron therapy. Conclusion: This trial did not demonstrate beneficial effects of IV iron therapy on exercise capacity at 4 weeks. A larger study is needed to confirm if IV iron is beneficial in nondialysis patients with CKD who are iron-deficient.

Exploring Staff Attitudes Towards Unspecified Kidney Donors in the United Kingdom: Results From the BOUnD Study.

Unspecified kidney donation (UKD) has made substantial contributions to the UK living donor programme. Nevertheless, some transplant professionals are uncomfortable with these individuals undergoing surgery. This study aimed to qualitatively explore the attitudes of UK healthcare professionals towards UKD. An opportunistic sample was recruited through the Barriers and Outcomes in Unspecified Donation (BOUnD) study covering six UK transplant centres: three high volume and three low volume centres. Interview transcripts were analysed using inductive thematic analysis. The study provided comprehensive coverage of the UK transplant community, involving 59 transplant professionals. We identified five themes: staff's conception of the ethics of UKD; presence of the known recipient in the donor-recipient dyad; need for better management of patient expectations; managing visceral reactions about the "typical" unspecified kidney donor; complex attitudes toward a promising new practice. This is the first in-depth qualitative study of attitudes of transplant professionals towards UKD. The data uncovered findings with strong clinical implications for the UKD programme, including the need for a uniform approach towards younger candidates that is adhered to by all transplant centres, the need to equally extend the rigorous assessment to both specified and unspecified donors, and a new approach to managing donor expectations.

Donating a Kidney to a Stranger: Are Healthcare Professionals Facilitating the Journey? Results From the BOUnD Study.

Unspecified kidney donors (UKDs) are approached cautiously by some transplant professionals. The aim of this study was to interrogate the views of UK transplant professionals towards UKDs and identify potential barriers. A purposely designed questionnaire was validated, piloted and distributed amongst transplant professionals at each of the 23 UK transplant centres. Data captured included personal experiences, attitudes towards organ donation, and specific concerns about UKD. 153 responses were obtained, with representation from all UK centres and professional groups. The majority reported a positive experience with UKDs (81.7%; p < 0.001) and were comfortable with UKDs undergoing major surgery (85.7%; p < 0.001). 43.8% reported UKDs to be more time consuming and 52% felt that a mental health assessment should take place before any medical tests. 77% indicated the need for a lower age limit. The suggested age range was broad (16-50 years). Adjusted mean acceptance scores did not differ by profession (p = 0.68) but higher volume centres were more accepting (46.2 vs. 52.9; p < 0.001). This is the first quantitative study of acceptance by transplant professionals to a large national UKD programme. Support is broad, however potential barriers to donation have been identified, including lack of training. Unified national guidance is needed to address these.

Chronic kidney disease and severe mental illness: a scoping review.

BACKGROUND: People who have severe mental illness experience higher rates of long-term conditions and die on average 15-20 years earlier than people who do not have severe mental illness, a phenomenon known as the mortality gap. Long-term conditions, such as diabetes, impact health outcomes for people who have severe mental illness, however there is limited recognition of the relationship between chronic kidney disease and severe mental illness. Therefore, the aim of this scoping review was to explore the available evidence on the relationship between chronic kidney disease and severe mental illness. METHODS: Electronic databases, including MEDLINE, Embase, CINAHL, and PsycINFO were searched. The database searches were limited to articles published between January 2000-January 2022, due to significant progress that has been made in the detection, diagnosis and treatment of both SMI and CKD. Articles were eligible for inclusion if they explored the relationship between SMI and CKD (Stages 1-5) in terms of prevalence, risk factors, clinical outcomes, and access to treatment and services. Severe mental illness was defined as conditions that can present with psychosis, including schizophrenia, schizoaffective disorder, bipolar disorder, and other psychotic disorders. Thirty articles were included in the review. RESULTS: The included studies illustrated that there is an increased risk of chronic kidney disease amongst people who have severe mental illness, compared to those who do not. However, people who have severe mental illness and chronic kidney disease are less likely to receive specialist nephrology care, are less likely to be evaluated for a transplant, and have higher rates of mortality. CONCLUSION: In conclusion, there is a dearth of literature in this area, but the available literature suggests there are significant health inequalities in kidney care amongst people who have severe mental illness. Further research is needed to understand the factors that contribute to this relationship, and to develop strategies to improve both clinical outcomes and access to kidney care.

Exploring biopsychosocial correlates of pregnancy risk and pregnancy intention in women with chronic kidney disease.

INTRODUCTION: Women with Chronic Kidney Disease (CKD) are at increased risk of adverse pregnancy and renal outcomes. It is unknown how women with CKD understand their pregnancy risk. This nine-centre, cross-sectional study aimed to explore how women with CKD perceive their pregnancy risk and its impact on pregnancy intention, and identify associations between biopsychosocial factors and perception of pregnancy risk and intention. METHODS: Women with CKD in the UK completed an online survey measuring their pregnancy preferences; perceived CKD severity; perception of pregnancy risk; pregnancy intention; distress; social support; illness perceptions and quality of life. Clinical data were extracted from local databases. Multivariable regression analyses were performed. Trial registration: NCT04370769. RESULTS: Three hundred fifteen women participated, with a median estimated glomerular filtration rate (eGFR) of 64 ml/min/1.73m2 (IQR 56). Pregnancy was important or very important in 234 (74%) women. Only 108 (34%) had attended pre-pregnancy counselling. After adjustment, there was no association between clinical characteristics and women's perceived pregnancy risk nor pregnancy intention. Women's perceived severity of their CKD and attending pre-pregnancy counselling were independent predictors of perceived pregnancy risk. Importance of pregnancy was an independent predictor of pregnancy intention but there was no correlation between perceived pregnancy risk and pregnancy intention (r = - 0.002, 95% CI - 0.12 to 0.11). DISCUSSION: Known clinical predictors of pregnancy risk for women with CKD were not associated with women's perceived pregnancy risk nor pregnancy intention. Importance of pregnancy in women with CKD is high, and influences pregnancy intention, whereas perception of pregnancy risk does not.

The Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ): Development, reliability and validity across several long-term conditions.

OBJECTIVES: Cognitive and behavioural responses to symptoms can worsen or maintain the severity of symptoms across long-term conditions (LTCs). Although the Cognitive and Behavioural Responses Questionnaire (CBRQ) has been used in research, its original development and psychometric properties as a transdiagnostic measure have not been reported. Our aim was to evaluate the psychometric properties of the CBRQ and a recently proposed short version, across different LTCs. DESIGN: Psychometric validation study. METHODS: Confirmatory factor analysis (CFA) tested the factor structure of the CBRQ in two datasets from the CBRQ's original development; (chronic fatigue syndrome, N = 230; and multiple sclerosis, N = 221) and in additional groups: haemodialysis (N = 174), inflammatory bowel disease (N = 182) and chronic dizziness (N = 185). Scale reliability and construct validity were assessed. The factor structure of the shortened CBRQ (CBRQ-SF) was also assessed. RESULTS: CFA revealed that a 7-or 8-factor structure had generally appropriate fit supporting the originally proposed 7 factors (Fear avoidance, Damage beliefs, Catastrophising, Embarrassment avoidance, Symptom focusing, All-or-nothing behaviour and Avoidance/Resting behaviour). Omega coefficients indicated satisfactory internal reliability. Correlations with related constructs suggested construct validity. The scale appeared sensitive to change. The CBRQ-SF also displayed good psychometric quality, with a better model fit than the CBRQ. CONCLUSIONS: The CBRQ and the shortened version were shown to be reliable and valid at assessing a range of cognitive and behavioural responses to symptoms, highlighting the multi-symptom, transdiagnostic properties of this questionnaire. Further research is necessary to determine the test-retest reliability and sensitivity to change of the CBRQ and CBRQ-SF and a thorough evaluation of the content validity of the items.

Easier, but not easy: Testing a grounded theory of breastfeeding experiences among women with larger birthweight infants.

OBJECTIVE: Grounded Theory has previously been used to explore breastfeeding practices amongst average birthweight infants and these working hypotheses can be 'tested' in new contexts. A pre-existing Grounded Theory was applied to the context of women who gave birth to larger birthweight infants (≥4,000 g) to understand whether perceptions and practices of infant feeding were distinct. DESIGN: A nested qualitative study analysed data from N = 10 women with a larger birthweight infant (≥4,000 g). Face-to-face, semi-structured interviews were audio-recorded and transcribed verbatim. Grounded Theory methodology was used to analyse data. RESULTS: A pre-existing Grounded Theory of breastfeeding experiences derived from women with average birthweight infants did not hold true among women with larger birthweight infants. An alternative Grounded Theory was therefore proposed comprised of three discrete themes: Infant Ability to Breastfeed; Attenuating Maternal Concerns; and Reality of Breastfeeding. CONCLUSIONS: Larger infant birthweight is potentially a protective factor against breastfeeding latch and lactation difficulties. It is associated with alleviating maternal concerns, helping to reduce disparities between expectations of breastfeeding and reality, but does not alleviate the demands breastfeeding places on women. Healthcare professionals help to attenuate women's concerns, however the support needs for women with larger birthweight infants may not differ from existing care recommendations.

Experiences of a cognitive behavioural therapy (CBT) intervention for fatigue in patients receiving haemodialysis.

BACKGROUND: A feasibility randomised-controlled trial found that a cognitive-behavioural therapy intervention for renal fatigue has the potential to reduce fatigue in patients receiving haemodialysis, but uptake was low. OBJECTIVES: Nested in the randomised-controlled trial (RC) qualitative interviews were undertaken to understand the acceptability of renal fatigue, the facilitators of, and barriers to, engagement, and the psychosocial processes of change. DESIGN: The trial included 24 participants at baseline. Semi-structured interviews were conducted with nine participants from the intervention arm (n = 12). Approach Interviews were carried out immediately following treatment (3 months post-randomisation). Data were analysed using inductive thematic analysis. FINDINGS: Five main themes were formulated. The overarching theme was a sense of coherence (whether the illness, symptoms and treatment made sense to individuals), which appeared to be central to acceptability and engagement. Two themes captured the key barriers and facilitators to engagement, cognitive and illness/treatment burdens and collaboration with the therapist. Participants described changes related to their activity, thoughts and social identity/interactions, which shaped perceptions of change in fatigue. Lastly, participants discussed the optimal delivery of the intervention. CONCLUSIONS: This study revealed the importance of patients' understanding of fatigue and acceptance of the treatment model for the acceptability of and engagement with a cognitive-behavioural therapy-based intervention for fatigue. Overall, there was an indication that such an intervention is acceptable to patients and the mechanisms of change align with the proposed biopsychosocial model of fatigue. However, it needs to be delivered in a way that is appealing and practical to patients, acknowledging the illness and treatment burdens.