The experiences of people starting haemodialysis: A qualitative study.

BACKGROUND AND OBJECTIVE: Starting dialysis is a life-changing transition for people living with kidney disease. People feel overwhelmed with diet changes, medications and surgical interventions, and often experience high levels of anxiety, depression and hospital admissions. The objective of this study was to explore and describe the experiences and perspectives of people starting dialysis. STUDY DESIGN: Observational qualitative study using audio-recorded, individual, semi-structured interviews. PARTICIPANTS: We conducted 20 semi-structured interviews with English-speaking adults who were within 90 days of starting in-centre haemodialysis at centres of a nonprofit dialysis provider in Northern California. APPROACH: Trained qualitative researchers conducted interviews that were deidentified and transcribed verbatim before being inductively coded into codes, categories, and themes. RESULTS: Three overarching themes emerged from the interviews. Being overwhelmed when starting dialysis, realises the emotional unpreparedness of patients starting dialysis and how the centre's environment (waiting and treatment areas) and staff behaviour impact the dialysis start experience. Making sense of it all, covers how the patient's symptoms, behaviour, and dialysis-related experiences impact the dialysis start. Moving forward, describes how education informed optimal decision-making, and can provide hope for a longer and better life. LIMITATIONS: Predominantly college-educated participants were recruited from a single dialysis organisation which may limit the transferability of results. CONCLUSION: Understanding the life-changing experiences that patients encounter when starting dialysis assist dialysis clinicians to help patients adjust and develop long-term coping strategies.

Modifiable Physical Factors That Influence Physical Function for People Receiving Peritoneal Dialysis.

Introduction: People receiving peritoneal dialysis experience physical function decline, impairing their ability to complete everyday activities, leading to poorer quality of life. Physical factors, including cardiorespiratory fitness, muscle strength, physical activity, and sedentary behavior are associated with physical function. However, little is known about this relationship, or temporal changes of these factors in this cohort. This study aimed to explore modifiable physical factors that are associated with physical function, identify which factor has the strongest influence, and explore temporal changes. Methods: Adults receiving peritoneal dialysis underwent objective and self-reported physical function, cardiorespiratory fitness, muscle strength, physical activity and sedentary behavior assessments 3 times over a 12-month observation period (at baseline, 6 months, and 12 months). Results: Eighty-two participants underwent assessments. All modifiable physical factors were predominantly moderate to strongly associated with physical function at baseline. Cardiorespiratory fitness had the strongest and most consistent influence with every meter conferring a 0.08-unit (P < 0.01) and 0.01-unit (P < 0.05) increase in self-report and objective physical function score, respectively. Temporal changes were observed for modifiable physical factors with significant mean changes in cardiorespiratory fitness (-9.8%), quadricep strength (-5%), moderate-to-vigorous (-25.9%) and total (-16.2%) physical activity, and sedentary behavior (+7.1%). Conclusion: The results of this study indicate that cardiorespiratory fitness could be routinely monitored to detect risk of physical function decline and targeted through intervention to enhance physical function for people receiving peritoneal dialysis. Nevertheless, all factors should be considered when designing interventions to mitigate temporal changes and induce the numerous health benefits offered by being physically active.

Exercise perceptions and practices of people receiving peritoneal dialysis: An international cross-sectional survey.

BACKGROUND: Low physical activity and functional impairment are prevalent and unaddressed in people receiving peritoneal dialysis (PD). Exercise has been shown to improve physical function and mental health for people with kidney disease. METHODS: Cross-sectional descriptive survey aimed at identifying the exercise and physical activity perceptions and practice patterns of people receiving PD. The survey was developed and pretested with persons living with kidney disease, PD clinicians and exercise specialists. RESULTS: There were 108 respondents (people receiving PD) with the majority from Canada (68%) and the United Kingdom (25%). Seventy-one per cent were engaged in physical activity two or more times per week. Most (91.8%) believed that physical activity is beneficial, and 61.7% reported healthcare provider discussion about physical activity. Perceptions regarding weightlifting restrictions varied: 76% were told not to lift weight with a maximum amount ranging from 2 kg to 45 kg. Few (28%) were instructed to drain PD fluid prior to physical activity. Mixed advice regarding swimming ability was common (44% were told they could swim and 44% were told they should not). CONCLUSIONS: Knowledge gaps suggest that education for both healthcare providers and patients is needed regarding the practice of exercise for people living with PD. Common areas of confusion include the maximum weight a person should lift, whether exercise was safe with or without intrabdominal PD fluid in situ and whether swimming is allowed. Further research is needed to provide patients with evidence-based recommendations rather than defaulting to restricting activity.

Ecological Momentary Assessment to Explore Fatigue, Mood, and Physical Activity Levels in People Receiving Peritoneal Dialysis.

Introduction: Fatigue is a frequent and debilitating symptom that contributes to poor quality of life for people receiving peritoneal dialysis. Ecological momentary assessment using mobile technology (mEMA) is a novel survey technique that can collect symptom data in real-time and has not been trialed in a peritoneal dialysis cohort. The study aimed to explore real-time fluctuations and associations between fatigue, mood, and physical activity using mEMA. Methods: Adults receiving peritoneal dialysis completed fatigue and mood scales, via a mobile application (app), 5 times daily for 7 days and, concurrently wore an accelerometer. A feasibility questionnaire was completed on the eighth day. Results: Forty-eight adults completed the study. Within-day fatigue fluctuations were observed with severity lowest during mid-morning to early afternoon and peaking at bedtime. Associations between fatigue and mood were observed with a 1-unit change in mood score conferring a 5.2-unit change in fatigue (P < 0.01). Higher volume of physical activity was associated with lower fatigue and enhanced mood. Overall adherence to the app-based surveys was 73% with most participants reporting mobile phones and the mEMA app being easy to use. Conclusion: People receiving peritoneal dialysis experience within day and day-to-day fluctuations in fatigue that appear highly variable. Higher fatigue severity was associated with poorer mood and lower physical activity levels with future studies required to explore if physical activity-based interventions could be a potential strategy for the management of these symptoms. Furthermore, mEMA, and mobile phones, were feasible to capture symptom data with potential to be employed in future research or, as part of improved care.

Patient activation in advanced chronic kidney disease: a cross-sectional study.

BACKGROUND: Patient activation refers to the knowledge, confidence and skills required for the management of chronic disease and is antecedent to self-management. Greater self-management in chronic kidney disease (CKD) results in improved patient experience and patient outcomes. AIM: To examine patient activation levels in people with CKD stage 5 pre-dialysis and determine associations with sociodemographic characteristics, treatment adherence and healthcare utilisation. METHODS/DESIGN: People with CKD stage 5 not receiving dialysis from one Australian kidney care service. Patient activation was measured using the 13-item Patient Activation Measure (PAM-13). Sociodemographic and clinical outcome data (emergency department visits, admissions) were collected from medical records. Morisky Medication Adherence Scale was used to determine self-report medication adherence. RESULTS: Two hundred and four participants completed the study. The mean PAM-13 score was 53.4 (SD 13.8), with 73% reporting low activation levels (1 and 2). Patient activation scores significantly decreased with increased age (P < 0.001) and significantly increased with higher educational levels (P < 0.001). Higher patient activation level was associated with fewer hospital emergency department visits (P = 0.03) and increased medication adherence (P < 0.001). CONCLUSION: Patient activation levels are low in people with CKD stage 5 not receiving dialysis suggesting limited ability for self-management and capacity for optimally informed decisions about their healthcare. Efforts to improve patient activation need to consider age and education level.

Characteristics and Frequency of Physical Activity and Exercise-Related Side Effects in People Receiving Peritoneal Dialysis.

OBJECTIVE: People receiving peritoneal dialysis may receive health benefits from physical activity or exercise. However, on-going uncertainty and fear regarding safety may result in this population missing out on the health benefits of participation. The aim of this study was to explore the characteristics and frequency of physical activity and/or exercise-related side effects (e.g., symptoms such as pain or shortness of breath) and negative health events (e.g., stroke or hyper/hypoglycemia) experienced by people receiving peritoneal dialysis. METHODS: An international online survey involving adults receiving peritoneal dialysis was conducted with questions related to nature, occurrence, and impact of side effects and/or negative health events experienced during or soon after participation in physical activity or exercise. RESULTS: Fifty-two people completed the survey reporting 151 side effects that were related to physical activity and exercise and 67 that were possibly related. Fatigue (58% of respondents), muscle/joint soreness or pain (54%), and dizziness (43%) were the most frequently reported side-effect types. The majority occurred occasionally (58% of all side effects), if not rarely (24%) and participation in on-going physical activity or exercise was typically prevented only occasionally (39%) or not at all (31%). Side effects were mainly self-managed (54% of all side effects) or did not require treatment (19%) and had low (38%) or no effect (30%) on ability to do daily activities. CONCLUSIONS: People receiving peritoneal dialysis generally experience side effects that can be considered a normal response to physical activity or exercise engagement. Furthermore, the risk of serious or peritoneal dialysis-specific side effects as a result of physical activity or exercise appears to be low. The results add to the emerging evidence suggesting physical activity and exercise appear to be safe for people receiving peritoneal dialysis.

Feasibility of Symptom monitoring WIth Feedback Trial (SWIFT) for adults on hemodialysis: a registry-based cluster randomized pilot trial.

BACKGROUND: Patients with kidney failure on hemodialysis (HD) experience considerable symptom burden and poor health-related quality of life (HRQoL). There is limited use of patient reported outcome measures (PROMs) in facility HD units to direct immediate care, with response rates in other studies between 36 to 70%. The aim of this pilot study was to evaluate feasibility of electronic PROMs (e-PROMs) in HD participants, with feedback 3-monthly to the participants' treating team, for severe or worsening symptoms as identified by the Integrated Palliative Outcome Scale (IPOS-Renal), with linkage to the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, compared with usual care. METHODS: This is a registry-based cluster-randomized controlled pilot trial involving all adults receiving HD in 4 satellite units in Australia over a 6-month period. HD units were cluster randomized 1:1 to the control (HRQoL data collection only) or intervention arm (symptom monitoring with feedback to treating team every 3 months). Feasibility was assessed by participant response rate (percentage of eligible HD participants, including new incident participants, who completed the questionnaire at each time point); retention rate (percentage of participants who completed the baseline questionnaire and all subsequent measures); and completion time. HRQoL and symptom burden scores are described. RESULTS: There were 226 unique participants who completed the e-PROMs (mean age 62 years, 69% males, 78% White-European, median dialysis vintage 1.62 years). At 6 months, response rate and retention rate for the intervention arm were 54% and 68%, respectively, and 89% and 97% in the control arm. Median time to complete IPOS-Renal was 6.6 min (5.3, 10.1) at 3 months, and when combined with the outcome measure (EQ-5D-5L), the median time was 9.4 min (6.9, 13.6) at 6 months. CONCLUSIONS: Electronic symptom monitoring among HD participants with feedback to clinicians is feasible. Variations in response and retention rates could be potentially explained by the lengthier questionnaire, and higher frequency of data collection time points for participants in the intervention arm. A definitive national RCT is underway. TRIAL REGISTRATION: ACTRN12618001976279 (07/12/2018).

Nurses' perceptions of point-of-care ultrasound for haemodialysis access assessment and guided cannulation: A qualitative study.

AIM: To explore nurses' perceptions of using point-of-care ultrasound for assessment and guided cannulation in the haemodialysis setting. BACKGROUND: Cannulation of arteriovenous fistulae is necessary to perform haemodialysis. Damage to the arteriovenous fistula is a frequent complication, resulting in poor patient outcomes and increased healthcare costs. Point-of-care ultrasound-guided cannulation can reduce the risk of such damage and mitigate further vessel deterioration. Understanding nurses' perceptions of using this adjunct tool will inform its future implementation into haemodialysis practice. DESIGN: Descriptive qualitative study. METHODS: Registered nurses were recruited from one 16-chair regional Australian haemodialysis clinic. Eligible nurses were drawn from a larger study investigating the feasibility of implementing point-of-care ultrasound in haemodialysis. Participants attended a semistructured one-on-one interview where they were asked about their experiences with, and perceptions of, point-of-care ultrasound use in haemodialysis cannulation. Audio-recorded data were transcribed and inductively analysed. FINDINGS: Seven of nine nurses who completed the larger study participated in a semistructured interview. All participants were female with a median age of 54 years (and had postgraduate renal qualifications. Themes identified were as follows: (1) barriers to use of ultrasound; (2) deficit and benefit recognition; (3) cognitive and psychomotor development; and (4) practice makes perfect. Information identified within these themes were that nurses perceived that their experience with point-of-care ultrasound was beneficial but recommended against its use for every cannulation. The more practice nurses had with point-of-care ultrasound, the more their confidence, dexterity and time management improved. CONCLUSIONS: Nurses perceived that using point-of-care ultrasound was a positive adjunct to their cannulation practice and provided beneficial outcomes for patients. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Haemodialysis clinics seeking to implement point-of-care ultrasound to help improve cannulation outcomes may draw on these findings when embarking on this practice change. REPORTING METHOD: This study is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Patients were not directly involved in this part of the study; however, they were involved in the implementation study. TRIAL AND PROTOCOL REGISTRATION: The larger study was registered with Australian New Zealand Clinical Trials Registry: ACTRN12617001569392 (21/11/2017) https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373963&isReview=true.

An International Survey of Peritoneal Dialysis Exercise Practices and Perceptions.

Introduction: Low activity levels and poor physical function are associated with technique failure and mortality in people receiving peritoneal dialysis (PD). Adequate levels of physical function are required to maintain independence for people choosing this predominantly home-based therapy. The objective of this study was to identify the exercise-related perceptions and practices of PD clinicians globally. Methods: We conducted a cross-sectional survey of PD clinicians from English-, Thai-, Spanish-, and Portuguese-speaking PD-prevalent countries exploring clinicians' perceptions and practices of swimming, activity following PD catheter insertion, lifting, and falls prevention. This study was convened by the International Society of Peritoneal Dialysis and Global Renal Exercise Network between July and December 2021. Results: Of 100 of the highest PD-prevalent countries, 85 responded and were represented in the findings. A total of 1125 PD clinicians (448 nephrologists, 558 nephrology nurses, 59 dietitians, and 56 others) responded from 61% high-income, 32% upper middle-income and 7% lower middle-income countries. The majority (n = 1054, 94%) agreed that structured exercise programs would be beneficial for people receiving PD. Most respondents believed people on PD could perform more exercise (n = 907, 81%) and that abdominal strengthening exercises could be safely performed (n = 661, 59%). Compared to clinicians in high-income countries, clinicians from lower middle-income status (odds ratio [OR], 5.57; 1.64 to 18.9) are more likely to promote participation in physical activity. Conclusion: Clinicians know the importance of physical activity in people receiving PD. Exercise counseling and structured exercise plans could be included in the standard care of people receiving PD to maintain independence.

The effectiveness of patient activation interventions in adults with chronic kidney disease: A systematic review and meta-analysis.

BACKGROUND: Chronic kidney disease (CKD) is a complex health condition that profoundly impacts an individual's general health and well-being throughout their entire lifetime. People with CKD require the knowledge, confidence, and skills to actively self-manage their health. This is referred to as patient activation. The efficacy of interventions to increase patient activation in the CKD population is unclear. AIM: This study aimed to examine the effectiveness of patient activation interventions on behavioral health-related outcomes among people with CKD stages 3-5. METHODS: A systematic review and meta-analysis of randomized controlled trials (RCTs) of patients with CKD stages 3-5 was performed. MEDLINE, EMCARE, EMBASE, and PsychINFO databases were searched between 2005 and February 2021. Risk of bias was assessed using the Joanna Bridge Institute critical appraisal tool. RESULTS: Nineteen RCTs that enrolled 4414 participants were included for synthesis. Only one RCT reported patient activation using the validated 13-item patient activation measure (PAM-13). Four studies demonstrated strong evidence that the intervention group developed a higher level of self-management compared to the control group (standardized mean differences [SMD] = 1.12, 95% CI [0.36, 1.87], p = .004). Eight RCTs led to a significant improvement in self-efficacy (SMD = 0.73, 95% CI [0.39, 1.06], p < .0001). There was weak to no evidence on the effect of the strategies shown on the physical component and mental components of health-related quality of life, and medication adherence. LINKING EVIDENCE TO ACTION: This meta-analysis highlights the importance of including tailored interventions using a cluster approach including patient education, goal setting with individualized action plan, and problem-solving to engage patients to be more actively involved in the self-management of their CKD.

Nurses' and medical doctors' attitudes towards exercise for people with chronic kidney disease in Denmark.

BACKGROUND: Implementation of exercise training in people with kidney failure may be affected by clinicians' attitudes. OBJECTIVES: To investigate Danish nephrology nurses' and medical doctors' attitudes towards: exercise for people undergoing dialysis; use of physical activity interventions in chronic kidney disease; and to compare Danish and previously reported Australian nurse attitudes. DESIGN: Cross-sectional survey. PARTICIPANTS: Nurses and medical doctors from the nephrology field in Denmark. MEASUREMENTS: The questionnaire attitudes towards exercise in dialysis, and questions about exercise advice, counselling and interventions. RESULTS: Nephrology nurses (n = 167) and 17 medical doctors (women 92%, age 47 ± 11 years) from 19 dialysis units participated. There were no differences between nurses' and medical doctors attitudes about training. Ninety-five % and 88% of nurses and medical doctors, respectively, agreed that most people undergoing dialysis could benefit from exercise. Exercise training was offered to people undergoing haemodialyses in 88% of 17 departments. Danish nurses reported more positive attitudes than Australian towards exercise (p < 0.05). Ninety-five % and 86% of the Danish and Australian nurses, respectively, agreed/strongly agreed that most people undergoing dialysis could benefit from exercise. Six % and 35% of the Danish and Australian nurses, respectively, agreed/strongly agreed that most people with dialysis were too sick to exercise. CONCLUSION: Danish nephrology nurses and medical doctors had mostly positive attitudes to exercise training to people undergoing dialysis, and exercise to people with dialysis was offered frequently. Danish and Australian nurses had positive attitudes to exercise to people undergoing dialysis, it was however more positive in Danish nurses.

Point-of-care ultrasound-guided cannulation versus standard cannulation in hemodialysis vascular access: A controlled random order crossover pilot feasibility study.

BACKGROUND: Standard cannulation practice for hemodialysis consists of inserting needles "blindly" through skin into an arteriovenous fistula (AVF), which is more likely to cause damage. Point-of-care ultrasound (POCUS) guided cannulation has potential for less damage; however, efficacy of this technique has not been explored. Our purpose was to test the feasibility and effectiveness of POCUS guidance for cannulation of AVFs in hemodialysis patients. METHODS: A random-order crossover research design was used; patients and nurses acted as their own control. Sample included 13 patients with functioning AVFs and 9 nurses, recruited from a single hemodialysis center. All nurses cannulated all patients using standard and POCUS-guided cannulation. Data were collected at each cannulation (time taken, nurse position, probe direction, pressures, patient satisfaction, pain scores). Ultrasound images of needle position were collected from which needle tip locations inside vessels were measured. Nurses were surveyed at three timepoints and were interviewed at conclusion of data collection. Analysis involved linear mixed-models for clinical data, descriptive statistics for binary and feasibility data, and content analysis for interview data. RESULTS: Eleven patients and seven nurses completed. Protocol adherence was 94.4%. Two miscannulations occurred, both during standard cannulation. Cannulation time using POCUS guidance was significantly higher than standard cannulation (p = 0.008, 95% CI 39-166). All other variables showed no statistically significant difference. Content analysis of interview data showed cultural shift toward use of POCUS; nurses gained confidence and become more proficient in their POCUS technique. CONCLUSIONS: Random-order crossover is a feasible design to measure differences in POCUS-guided and standard cannulation. It is also feasible to implement POCUS into hemodialysis centers and whilst POCUS guidance takes longer, nurses become more proficient, and confident with persistent use.

Patient Activation Among Prevalent Hemodialysis Patients: An Observational Cross-Sectional Study.

Patient activation is the product of knowledge, skills, and confidence that enables a person to manage their own healthcare. It is associated with healthy behaviors and improved patient outcomes. We surveyed prevalent hemodialysis (HD) patients at 10 centers using the Patient Activation Measure 13-item instrument (PAM-13). Activation was reported as scores (0-100) and corresponding levels (1-4). Of 1149 eligible patients, surveys were completed by 925 patients (92% response rate). Mean age was 62 ± 14 years, 40% were female, median vintage was 41 (IQR 19-77) months, and 66% had diabetes. Mean PAM score was 56 ± 13, with 14%, 50%, 25%, and 10% in levels 1 to 4, respectively. In adjusted analysis, older age and having diabetes were associated with lower activation, whereas higher educational levels and female gender were associated with higher scores. Significant variation in activation was observed among participants from different centers even after adjustment for other variables. In conclusion, low activation is common among prevalent HD patients.

Effect of Intradialytic Oral Nutritional Supplementation with or without Exercise Improves Muscle Mass Quality and Physical Function in Hemodialysis Patients: A Pilot Study.

BACKGROUND: Oral nutritional supplementation (ONS) with or without exercise (EX) could improve muscle mass (MM) in chronic kidney disease. METHODS: Patients were randomized into two groups: (1) ONS and (2) ONS + EX. Thigh muscle area (cm2) and intramuscular lipid content via attenuation were evaluated at baseline and 6 months with computed tomography (CT) to measure MM quantity and quality. Physical function was measured by six-minute walk test (6 MWT), gait speed, handgrip strength (HGS), and Time Up and Go test (TUG) at baseline and 3 and 6 months. RESULTS: The ONS group (n= 14) showed statistically significant improvement in gait speed and HGS; ONS + EX group (n = 10) showed differences in gait speed, in 6 MWT, and HGS. In the ANOVA (3 times × 2 groups), no differences were observed between groups. Greater effect sizes in favor to ONS + EX group were observed in the 6 MWT (d = 1.02) and TUG test (d = 0.63). Muscle quality at six months revealed a significant trend in favor of the EX-group (p = 0.054). CONCLUSIONS: Both groups had improved physical function, and greater effect sizes were seen in the ONS + EX group for the 6 MWT and TUG test. Neither MM quantity or quality was improved in either group.

The Symptom Monitoring with Feedback Trial (SWIFT): protocol for a registry-based cluster randomised controlled trial in haemodialysis.

BACKGROUND: Kidney failure prevalence is increasing worldwide. Haemodialysis, peritoneal dialysis or kidney transplantation are undertaken to extend life with kidney failure. People receiving haemodialysis commonly experience fatigue, pain, nausea, cramping, itching, sleeping difficulties, anxiety and depression. This symptom burden contributes to poor health-related quality of life (QOL) and is a major reason for treatment withdrawal and death. The Symptom monitoring WIth Feedback Trial (SWIFT) will test the hypothesis that regular symptom monitoring with feedback to people receiving haemodialysis and their treating clinical team can improve QOL. METHODS: We are conducting an Australia and New Zealand Dialysis and Transplant (ANZDATA) registry-based cluster randomised controlled trial to determine the clinical- and cost-effectiveness at 12 months, of 3-monthly symptom monitoring using the Integrated Palliative Outcome Scale-Renal (IPOS-Renal) survey with clinician feedback, compared with usual care among adults treated with haemodialysis. Participants complete symptom scoring using a tablet, which are provided to participants and to clinicians. The trial aims to recruit 143 satellite haemodialysis centres, (up to 2400 participants). The primary outcome is change in health-related QOL, as measured by EuroQol 5-Dimension, 5-Level (EQ-5D-5L) instrument. Secondary outcomes include overall survival, symptom severity (including haemodialysis-associated fatigue), healthcare utilisation and cost-effectiveness. DISCUSSION: SWIFT is the first registry-based trial in the Australian haemodialysis population to investigate whether regular symptom monitoring with feedback to participants and clinicians improves QOL. SWIFT is embedded in the ANZDATA Registry facilitating pragmatic recruitment from public and private dialysis clinics, throughout Australia. SWIFT will inform future collection, storage and reporting of patient-reported outcome measures (PROMs) within a clinical quality registry. As the first trial to rigorously estimate the efficacy and cost-effectiveness of routine PROMs collection and reporting in haemodialysis units, SWIFT will provide invaluable information to health services, clinicians and researchers working to improve the lives of those with kidney failure. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12620001061921 . Registered on 16 October 2020.