Exercise and nutrition interventions for renal cachexia.

PURPOSE OF REVIEW: Renal cachexia is a deleterious condition characterized by weight loss, muscle wasting and loss of physical function, quality of life, and increased mortality. Multimodal treatment strategies utilizing exercise and nutrition interventions have been recently suggested although the evidence base is still in its infancy. This paper aimed to review the current literature surrounding the use of exercise and nutrition for renal cachexia. MAIN FINDINGS: Evidence from systematic reviews and narrative reviews indicates that resistance training (RT) is proven to have beneficial effects on improving muscle strength and in some cases physical function, although effects on muscle mass are mixed and inconclusive. Further, combined RT and aerobic training (AT) may have also beneficial effects on overall functional capacity and there appears to be no superior mode of protocol (inter/intra-dialysis vs. home-based). For nutrition, there is new data from systematic review of studies indicating that oral nutritional supplementation (ONS) may have beneficial effects on nutritional status (e.g. body mass index, plasma albumin and handgrip strength). Omega-3 fatty acids have been shown to have anti-inflammatory effects in haemodialysis patients from two recent systematic reviews, and evidence from other populations groups indicate they may be beneficial for improving muscle mass and strength. SUMMARY: Evidence is accumulating for individual exercise and nutrition components but specific multimodal treatment studies in renal cachexia need to be urgently undertaken.

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.

Current nursing and midwifery contribution to leading digital health policy and practice: An integrative review.

AIM: To review the current nursing and midwifery contribution to leading digital health (DH) policy and practice and what facilitates and/or challenges this. DESIGN: Integrative literature review. METHODS: Pre-defined inclusion criteria were used. Study selection and quality assessment using the appropriate critical appraisal tools were undertaken by two authors, followed by narrative synthesis. DATA SOURCES: Six databases and hand searching for papers published from 2012 to February 2024. FINDINGS: Four themes were identified from 24 included papers. These are discussed according to the World Health Organization's Global Strategic Directions for Nursing and Midwifery and indicate nurses/midwives are leading DH policy and practice, but this is not widespread or systematically enabled. CONCLUSION: Nurses and midwives are ideally placed to help improve health outcomes through digital healthcare transformation, but their policy leadership potential is underused. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nurses/midwives' DH leadership must be optimized to realize maximum benefit from digital transformation. A robust infrastructure enabling nursing/midwifery DH policy leadership is urgently needed. IMPACT: This study addresses the lack of nursing/midwifery voice in international DH policy leadership. It offers nurses/midwives and health policymakers internationally opportunity to: drive better understanding of nursing/midwifery leadership in a DH policy context; enhance population outcomes by optimizing their contribution; Develop a robust infrastructure to enable this. REPORTING METHOD: Reporting adheres to the EQUATOR network, Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Strengthening the role of the executive nurse director: A qualitative interview study.

AIM: To explore the challenges and opportunities facing executive nurse directors in the UK and identify factors to strengthen their role and support more effective nurse leadership. DESIGN: A qualitative descriptive study using reflexive thematic analysis. METHODS: Semi-structured, telephone interviews were carried out with 15 nurse directors and 9 nominated colleagues. RESULTS: Participants described a uniquely complex role with a broader scope than any other executive board member. Seven themes were identified: preparation for the role, length of time in role, role expectations, managing complexity, status, being political and influencing. Strengthening factors included successful working relationships with other board colleagues, development of political skills and personal status, coaching and mentoring, working within a supportive team culture and having strong professional networks. CONCLUSION: Executive nurse leaders are key to the transmission of nursing values and the delivery of safety and quality in healthcare settings. To strengthen this role, the limiting factors and the recommended shared learning identified here should be recognized and addressed at an individual, organizational and professional level. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Given the pressure on all health systems to retain nurses, the role of executive nurse leaders needs to be seen as an important source of professional leadership and their value in actioning health policy into practice recognized. IMPACT: New insights have been provided into the executive nurse director role across the UK. Findings have demonstrated challenges and opportunities to strengthen the executive nurse director role. These include recognition of the need for support, preparation, networking and more realistic expectations of this unique nursing role. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution.

Disease-related malnutrition in chronic kidney disease.

PURPOSE OF REVIEW: Disease-related malnutrition has complex and multifactorial pathophysiology. It is common in patients with chronic kidney disease (CKD) and has a devastating impact on morbidity and mortality. Given the rising numbers of patients diagnosed with CKD, disease-related malnutrition is an escalating clinical challenge. This review summarises current knowledge in relation to the development, screening and treatments for disease-related malnutrition in CKD. RECENT FINDINGS: New research has identified other potential causes for the development of malnutrition in CKD, including changes in taste and smell, and effects of polypharmacy. Screening and assessment studies have investigated different tools in relation to the new Global Leadership Initiative on Malnutrition (GLIM) criteria. Different modalities of low protein diets and the potential use of pre and probiotics are being explored. Furthermore, the importance of nutritional support, and possibly exercise during dialysis is being examined in terms of reducing anabolic resistance and catabolism. SUMMARY: Further research is required to better understand the nuances of the pathophysiology of disease-related malnutrition in CKD. This work should inform not only consistent terminology and the application of assessment tools specific to disease-related malnutrition in CKD but also the development of novel interventions that reflect its multifaceted pathophysiology and impact.

Exploring the prevalence, impact and experience of cardiac cachexia in patients with advanced heart failure and their caregivers: A sequential phased study.

BACKGROUND: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. AIM: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. DESIGN: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. SETTING/PARTICIPANTS: Two healthcare trusts within the United Kingdom. RESULTS: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. CONCLUSIONS: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.

Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study.

BACKGROUND: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. AIM: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. DESIGN: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. SETTINGPARTICIPANTS: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. RESULTS: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. CONCLUSIONS: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.

'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

Young Adults Rehabilitation Needs and Experiences following Stroke (YARNS): A review of digital accounts to inform the development of age-appropriate support and rehabilitation.

AIMS: To explore younger adults' experiences of stroke rehabilitation to inform practice, education and future health policy. DESIGN: Qualitative analysis of digital and other media sources on public platforms. METHODS: Between March and June 2020, the experiences of younger adult stroke survivors aged 18 to 45 at the time of the stroke were collected. Data were gathered from publicly available sources, including social media, and from English-speaking users. In total, 117 accounts from 103 participants were identified from films, autobiographical books, blogs, websites, videos, Twitter and Instagram. Data analysis followed narrative and multimodal analysis with a focus on rehabilitation needs. RESULTS: Younger adult stroke survivors make sense of their experience by reflecting on how stroke has impacted their lives. Accounts reflected an emotional journey between the past self, the present self and evolving self, as well as associated challenges such as the impact on relationships and careers. The majority of accounts presented transitions as problematic, including the receipt of the initial diagnosis, or sometimes misdiagnosis, to returning home and achieving long-term rehabilitation goals. Specialist stroke nurses were considered essential in the rehabilitation process. CONCLUSION: A complex process of recovery follows stroke for younger adult stroke populations. Challenges to the rehabilitation process need to be better understood and the role of nursing highlighted in future service provision. A series of age-related challenges were highlighted that require attention to improve the care and support offered. IMPACT: This article informs clinicians, educators, and policymakers of the age-related needs of young adult stroke survivors. Focusing on the individual and the development of age-appropriate person-centred stroke care is important. The study highlights the role of stroke nursing and challenges the current policy focus on older stroke populations as well as arguing for greater awareness of age-appropriate stroke rehabilitation in younger adults following stroke.

Using a generic definition of cachexia in patients with kidney disease receiving haemodialysis: a longitudinal (pilot) study.

BACKGROUND: Research indicates that cachexia is common among persons with chronic illnesses and is associated with increased morbidity and mortality. However, there continues to be an absence of a uniformed disease-specific definition for cachexia in chronic kidney disease (CKD) patient populations. OBJECTIVE: The primary objective was to identify cachexia in patients receiving haemodialysis (HD) using a generic definition and then follow up on these patients for 12 months. METHOD: This was a longitudinal study of adult chronic HD patients attending two hospital HD units in the UK. Multiple measures relevant to cachexia, including body mass index (BMI), muscle mass [mid-upper arm muscle circumference (MUAMC)], handgrip strength (HGS), fatigue [Functional Assessment of Chronic Illness Therapy (FACIT)], appetite [Functional Assessment of Anorexia/Cachexia Therapy (FAACT)] and biomarkers [C-reactive protein (CRP), serum albumin, haemoglobin and erythropoietin resistance index (ERI)] were recorded. Baseline analysis included group differences analysed using an independent t-test, dichotomized values using the χ2 test and prevalence were reported using the Statistical Package for the Social Sciences 24 (IBM, Armonk, NY, USA). Longitudinal analysis was conducted using repeated measures analysis. RESULTS: A total of 106 patients (30 females and 76 males) were recruited with a mean age of 67.6 years [standard deviation (SD) 13.18] and dialysis vintage of 4.92 years (SD 6.12). At baseline, 17 patients were identified as cachectic, having had reported weight loss (e.g. >5% for >6 months) or BMI <20 kg/m2 and three or more clinical characteristics of cachexia. Seventy patients were available for analysis at 12 months (11 cachectic versus 59 not cachectic). FAACT and urea reduction ratio statistically distinguished cachectic patients (P = 0.001). However, measures of weight, BMI, MUAMC, HGS, CRP, ERI and FACIT tended to worsen in cachectic patients. CONCLUSION: Globally, cachexia is a severe but frequently underrecognized problem. This is the first study to apply the defined characteristics of cachexia to a representative sample of patients receiving HD. Further, more extensive studies are required to establish a phenotype of cachexia in advanced CKD.

Experiences of renal healthcare practitioners during the COVID-19 pandemic: a multi-methods approach.

BACKGROUND: Globally, renal healthcare practitioners provide intensive and protracted support to a highly complex multi-morbid patient population however knowledge about the impact of COVID-19 on these practitioners is extremely limited. OBJECTIVE: This study aimed to explore the experiences of COVID-19 with renal healthcare practitioners during the first global lockdown between June 2020 and September 2020. METHODS: A multi-methods approach was carried out including a quantitative survey and qualitative interviews. This was a multinational study of renal healthcare practitioners from 29 countries. Quantitative: A self-designed survey on COVID-19 experiences and standardised questionnaires (General Health Questionnaire-12; Maslach Burnout Inventory). Descriptive statistics were generated for numerical data. Qualitative: Online semi-structured interviews were conducted. Data was subjected to thematic analysis. Renal healthcare practitioners (n = 251) completed an online survey. Thirteen renal healthcare practitioners took part in semi-structured interviews (12 nurses and 1 dietician). RESULTS: The majority of participants surveyed were female (86.9 %; n = 218), nurses (86.9 %; n = 218) with an average 21.5 (SD = 11.1) years' experience since professional qualification, and 16.3 years (SD = 9.3) working in renal healthcare. Survey responses indicated a level of preparedness, training and satisfactory personal protective equipment during the pandemic however approximately 40.3 % experienced fear about attending work, and 49.8 % experienced mental health distress. The highest prevalence of burnout was emotional exhaustion (35.9 %). Three themes emerged from the qualitative analysis highlighting the holistic complexities in managing renal healthcare, a neglected specialist workforce, and the need for appropriate support at work during a pandemic. CONCLUSIONS: Results have highlighted the psychological impact, in terms of emotional exhaustion and mental health distress in our sample of renal healthcare practitioners. As the pandemic has continued, it is important to consider the long-term impact on an already stretched workforce including the risk of developing mental health disorders. Future research and interventions are required to understand and improve the provision of psychological support for specialist medical and nursing personnel.

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients.

OBJECTIVES: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. METHODS: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. RESULTS: For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was "clearly the best for the patient" or that it was "not necessary to discuss treatment with the patient". Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). CONCLUSIONS: There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

Mindfulness as a well-being initiative for future nurses: a survey with undergraduate nursing students.

BACKGROUND: Mindfulness can potentially positively impact well-being and resilience in undergraduate nursing students. The psychological well-being of such students undertaking clinical training is paramount to ensure optimal learning, and to equip them with skills to manage their wellbeing in future clinical practice. The aim of our study was to explore the views of undergraduate nursing students in relation to understanding and engaging with mindfulness, and how mindfulness could best be delivered within their university programme. METHODS: An online survey was administered via a cloud-based student response system to a convenience sample of first year undergraduate nursing students completing a Bachelor of Science (BSc) Honours (Hons) degree in nursing at a University in the United Kingdom. Data were analysed using descriptive statistics and thematic analysis. RESULTS: The survey achieved a response rate of 78% (n = 208). Seventy-nine percent of participants had heard of mindfulness and were interested in taking part in a mindfulness programme. Respondents reported that the ideal delivery of the programme would consist of weekly 45-min, in person group sessions, over a 6-week period. Respondents also indicated that a mobile application could potentially facilitate participation in the programme. Thematic analysis of open-ended comments, and free text, within the survey indicated 4 overarching themes: 1) Perceptions of what mindfulness is; 2) Previous mindfulness practice experiences; 3) Impact of mindfulness in nursing; 4) The need for a future well-being initiative for undergraduate nursing students. CONCLUSIONS: Undergraduate nursing students perceived that a mindfulness programme has the potential to enhance well-being and future clinical practice. This student cohort are familiar with mindfulness and want more integrated within their undergraduate curriculum. Further research is required to examine the effectiveness of a tailored mindfulness intervention for this population that incorporates the use of both face-to-face and mobile delivery.

The development of a web-based resource to provide information and psychosocial support to informal cancer carers in hospitals in Vietnam.

OBJECTIVE: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. METHODS: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants. RESULTS: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine. CONCLUSION: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries.

Development of a psychosocial intervention to support informal caregivers of people with end-stage kidney disease receiving haemodialysis.

BACKGROUND: Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. METHODS: This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. DISCUSSION: The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers' preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.

A mixed-methods feasibility study of an arts-based intervention for patients receiving maintenance haemodialysis.

BACKGROUND: Haemodialysis can negatively impact quality of life and mental health. Arts-based interventions used successfully in other settings to improve health and well-being, could help address the impact of haemodialysis. This study aimed to evaluate the feasibility and acceptability of conducting a randomised controlled trial (RCT) of an arts-based intervention for patients receiving haemodialysis. METHODS: A parallel convergent mixed-methods design was used, including a pilot cluster RCT and qualitative process evaluation. Phase 1 evaluated recruitment and retention rates through a pilot cluster RCT at a single haemodialysis unit in Northern Ireland. Participants included patients who received haemodialysis for ESKD, were over the age of 18 and had the capacity to consent. These participants were randomised to the intervention or control group according to their haemodialysis shift. The intervention involved six one-hour, one-to-one facilitated arts sessions during haemodialysis. Phase 2 explored intervention and trial acceptability through a qualitative process evaluation using semi-structured interviews based on the RE-AIM framework. Participants included 13 patients who participated in phase 1 of the study, including 9 participants from the experimental group and four participants from the control group, and nine healthcare professionals who were present on the unit during implementation. RESULTS: Out of 122 outpatient haemodialysis patients, 94 were assessed as eligible for participation. Twenty-four participants were randomised, meaning 80% of the target sample size was recruited and the attrition rate at 3 months was 12.5% (n = 3). Participants viewed the arts as more accessible and enjoyable than anticipated following implementation. All participants who started the intervention (n = 11) completed the full six sessions. Qualitative benefits of the intervention suggest improvements in mental well-being. Patient choice and facilitation were important factors for successful implementation. CONCLUSION: An arts-based intervention for patients receiving haemodialysis is acceptable for both patients and healthcare professionals, and a definitive trial is feasible. The intervention may help improve mental-wellbeing in patients receiving haemodialysis, but this requires further investigation in a definitive trial. TRIAL REGISTRATION: The trial was prospectively registered on clinicaltrials.gov on 14/8/2018, registration number NCT03629496 .

Estimating the Prevalence of Muscle Wasting, Weakness, and Sarcopenia in Hemodialysis Patients.

OBJECTIVES: Haemodialysis (HD) patients suffer from nutritional problems, which include muscle wasting, weakness, and cachexia, and are associated with poor clinical outcomes. The European Working Group for Sarcopenia in Older People (EWGSOP) and Foundations for the National Institute of Health (FNIH) have developed criteria for the assessment of sarcopenia, including the use of non-invasive techniques such as bioelectrical impedance assessment (BIA), anthropometry, and hand grip strength (HGS) dynamometry. This study investigated the prevalence of muscle wasting, weakness, and sarcopenia using the EWGSOP and FNIH criteria. METHODS: BIA was performed in 24 females (f) and 63 males (m) in the post-dialysis period. Total skeletal muscle mass and appendicular skeletal muscle mass were estimated and index values (i.e., muscle mass divided by height2 [kg/m2]) were calculated (Total Skeletal Muscle Index (TSMI) and Appendicular Skeletal Muscle Index (ASMI)). Mid-arm circumference and triceps skin-fold thickness were measured and mid-upper arm muscle circumference (MUAMC) calculated. HGS was measured using a standard protocol and Jamar dynamometer. Suggested cut-points for low muscle mass and grip strength were utilized using the EWGSOP and FNIH criteria with prevalence estimated, including sarcopenia. RESULTS: The prevalence varied depending on methodology: low TSMI (moderate and severe sarcopenia combined) was 55% for whole group: 21% (f) and 68% (m). Low ASMI was 32% for whole group: 25% (f) and 35% (m). Low MUAMC was 25% for whole group: 0% (f) and 30% (m). ASMI highly correlated with Body Mass Index (r = 0.78, P < .001) and MUAMC (r = 0.68, P < .001). Muscle weakness was high regardless of cut-points used (50-71% (f); 60-79% (m)). CONCLUSIONS: Internationally, this is the first study comparing measures of muscle mass (TSMM and ASMM by BIA and MUAMC) and muscle strength (HGS) using this specific methodology in a hemodialysis population. Future work is required to confirm findings.

Communicating with Adolescents and Young Adults about Cancer-Associated Weight Loss.

PURPOSE OF REVIEW: Over the past two decades, advances have been made in understanding the pathophysiology of cancer-associated weight loss, termed "cachexia." To date, there is no proven effective intervention to completely reverse cachexia and there are no approved drug therapies to treat it. This paper will review relevant literature in relation to communicating with adolescents and young adults about cancer-associated weight loss. RECENT FINDINGS: Adolescents and young adults (AYAs) who have cancer are a unique group of patients due to their stage of development and maturity. This article outlines issues specific to this patient cohort that need to be considered to better understand the impact of cachexia and explore pertinent matters when communicating with AYAs in relation to cachexia.

Interventions to improve psychosocial well-being in female BRCA-mutation carriers following risk-reducing surgery.

BACKGROUND: Women who carry a pathogenic mutation in either a BRCA1 DNA repair associated or BRCA2 DNA repair associated (BRCA1 or BRCA2) gene have a high lifetime risk of developing breast and tubo-ovarian cancer. To manage this risk women may choose to undergo risk-reducing surgery to remove breast tissue, ovaries, and fallopian tubes. Surgery should increase survival, but can impact women's lives adversely at the psychological and psychosexual levels. Interventions to facilitate psychological adjustment and improve quality of life post risk-reducing surgery are needed. OBJECTIVES: To examine psychosocial interventions in female BRCA carriers who have undergone risk-reducing surgery and to evaluate the effectiveness of such interventions on psychological adjustment and quality of life. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) in the Cochrane Library, MEDLINE and Embase via Ovid, CINAHL, PsycINFO, Web of Science up to April 2019 and Scopus up to January 2018. We also handsearched abstracts of scientific meetings and other relevant publications. SELECTION CRITERIA: We included randomised controlled trials (RCT), non-randomised studies (NRS), prospective and retrospective cohort studies and interventional studies using baseline and postintervention analyses in female BRCA carriers who have undergone risk-reducing surgery. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed eligibility studies for inclusion in the review. We used standard methodological procedures expected by Cochrane. MAIN RESULTS: We screened 4956 records from the searches, selecting 34 unique studies for full-text scrutiny, of which two met the inclusion criteria: one RCT and one NRS. The included studies assessed 113 female BRCA carriers who had risk-reducing surgery, but there was attrition, and outcome data were not available for all participants at final study assessments. We assessed the RCT as at a high risk of bias whilst the NRS did not have a control group. Our GRADE assessment of the studies was very low-certainty due to the paucity of data and methodological shortcomings of the studies. The primary outcome of quality of life was only measured in the RCT and that was specific to the menopause. Both studies reported on psychological distress and sexual function. Neither study measured body image, perhaps because this is most often associated with risk-reducing mastectomy rather than oophorectomy.The RCT (66 participants recruited with 48 followed to 12 months) assessed the short- and long-term effects of an eight-week mindfulness-based stress reduction (MBSR) training programme on quality of life, sexual functioning, and sexual distress in female BRCA carriers (n = 34) in a specialised family cancer clinic in the Netherlands compared to female BRCA carriers (n = 32) who received usual care. Measurements on the Menopause-Specific Quality of Life Questionnaire (MENQOL) showed some improvement at 3 and 12 months compared to the usual care group. At 3 months the mean MENQOL scores were 3.5 (95% confidence interval (CI) 3.0 to 3.9) and 3.8 (95% CI 3.3 to 4.2) for the MBSR and usual care groups respectively, whilst at 12 months the corresponding values were 3.6 (95% CI 3.1 to 4.0) and 3.9 (95% CI 3.5 to 4.4) (1 study; 48 participants followed up at 12 months). However, these results should be interpreted with caution due to the very low-certainty of the evidence, where a lower score is better. Other outcome measures on the Female Sexual Function Index and the Female Sexual Distress Scale showed no significant differences between the two groups. Our GRADE assessment of the evidence was very low-certainty due to the lack of blinding of participants and personnel, attrition bias and self-selection (as only one-third of eligible women chose to participate in the study) and serious imprecision due to the small sample size and wide 95% CI.The NRS comprised 37 female BRCA carriers selected from three Boston-area hospitals who had undergone a novel sexual health intervention following risk-reducing salpingo-oophorectomy (RRSO) without a history of tubo-ovarian cancer. The intervention consisted of targeted sexual-health education, body awareness and relaxation training, and mindfulness-based cognitive therapy strategies, followed by two sessions of tailored telephone counselling. This was a single-arm study without a control group. Our GRADE assessment of the evidence was very low-certainty, and as there was no comparison group in the included study, we could not estimate a relative effect. The study reported change in psychosexual adjustment from baseline to postintervention (median 2.3 months) using measures of Female Sexual Function Index (n = 34), which yielded change with a mean of 3.91, standard deviation (SD) 9.12, P = 0.018 (1 study, 34 participants; very low-certainty evidence). The Brief Symptom Inventory, Global Severity Index yielded a mean change of 3.92, SD 5.94, P < 0.001. The Sexual Self-Efficacy Scale yielded change with a mean of 12.14, SD 20.56, P < 0.001. The Sexual Knowledge Scale reported mean change of 1.08, SD 1.50, P < 0.001 (n = 36). Participant satisfaction was measured by questionnaire, and 100% participants reported that they enjoyed taking part in the psychoeducation group and felt "certain" or "very certain" that they had learned new skills to help them cope with the sexual side effects of RRSO. AUTHORS' CONCLUSIONS: The effect of psychosocial interventions on quality of life and emotional well-being in female BRCA carriers who undergo risk-reducing surgery is uncertain given the very low methodological quality in the two studies included in the review. The absence of such interventions highlights the need for partnership between researchers and clinicians in this specific area to take forward the patient-reported outcomes and develop interventions to address the psychosocial issues related to risk-reducing surgery in female BRCA carriers, particularly in this new era of genomics, where testing may become more mainstream and many more women are identified as gene carriers.