Kidney symptom questionnaire: Development, content validation and relationship with quality of life

Brown, Stephanie; Tyrer, Freya; Clarke, Amy L.; Lloyd-Davies, Laetitia H; Niyi-Odumosu, Faatihah; Nah, Ryan; Stein, Andrew; Tarrant, Carolyn; Smith, Alice C.

doi:10.1111/jorc.12247

Cited by 12 publications

(16 citation statements)

References 32 publications

(72 reference statements)

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“…According to Mallamaci et al [12], exercise suggests a beneficial effect on physical performance and health endpoints which are achieved by improvement in aerobic and walking capacity. The results of the survey (HEM preday : 0:82 ± 0:94, HEM day : 0:95 ± 0:83, and HEM postday : 1:41 ± 1:82, km/day) are not in line with those of Brown et al [7] who reported a decrease in patients' physical activity after hemodialysis. However, the findings of the research are in line with those of Bonner et al [13] who showed the strong influence of the disease on work, daily life, and in general the lifestyle of patients while at the same time identifying differences between them due to their different lifestyles.…”

Section: Discussioncontrasting

confidence: 81%

“…Abstinence from professional activities is also an important parameter in patients' lives, and their inability to meet their obligations creates feelings of impotence. The requirement to stay in the artificial kidney for several hours daily does not obviously allow patients to work normally and fall short of even light weight work capacity [ 7 ].…”

Section: Discussionmentioning

confidence: 99%

“…The hemodialysis (3 to 5 hours and 3 times per week) process ensures the survival of patients and is the most widely used method of renal replacement, and it is based on the passage of large amounts of blood through thin tubes that are continuously immersed in solutions [6]. At the same time, the intense fatigue associated with the reduced energy the patient feels causes him to give up on several of his previous activities, and it is quite difficult to maintain an earlier life planning [7].…”

Section: Introductionmentioning

confidence: 99%

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Physical Activity and Quality of Sleep in Patients with End-Stage Renal Disease on Hemodialysis: A Preliminary Report

et al. 2020

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Chronic kidney disease significantly impairs patients’ daily lives and worsens their quality of life. The aim of this study was to investigate the physical activity and quality of sleep, during three days (previous day of dialysis, on the day of dialysis and after day of dialysis), in patients with end-stage renal on hemodialysis. 12 hemodialysis patients were included in our study, answered the Pittsburgh Sleep Quality Index (PSQI) questionnaire, and for each patient were used a smart bracelet for three days (day-pre- and posthemodialysis and day at hemodialysis) to record daily physical activity (steps, distance) and estimate the quality of sleep. Results showed differences between three days average of steps and distance and PSQI parameters “…engaging in social activity?” (steps, p=0.006, distance, p=0.006) and “…enthusiasm to get things done?” (steps, p=0.029, distance, p=0.030). Our study suggests interrelationship between sleep quality and physical activity.

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Section: Discussioncontrasting

confidence: 81%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Physical Activity and Quality of Sleep in Patients with End-Stage Renal Disease on Hemodialysis: A Preliminary Report

et al. 2020

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“…The 11-item Leicester Uraemic Symptom Scale (LUSS) [21, 22] evaluated the number, frequency (0 = ‘never’ to 4 = ‘every day’) and intrusiveness (symptom impact) (0 = ‘not at all intrusive’ to 4 = ‘extremely intrusive’) of uraemic symptoms. Each individual symptom was scored out of four, and summative scores were generated: Total symptom number (LUSS-1): total number of symptoms experienced (out of 11).Total symptom frequency score (LUSS-2): frequency of each 11 symptoms rated 0–4 (out of 44).Total symptom intrusiveness score (LUSS-3): perceived intrusiveness of each 11 symptoms rated 0–4 (out of 44).…”

Section: Methodsmentioning

confidence: 99%

“…The LUSS has been widely used to determine symptom burden in renal populations [7, 12, 19, 21] and has recently been validated by our group [22].…”

Section: Methodsmentioning

confidence: 99%

Twelve weeks of supervised exercise improves self-reported symptom burden and fatigue in chronic kidney disease: a secondary analysis of the ‘ExTra CKD’ trial

Wilkinson

Watson

Gould

et al. 2018

Clinical Kidney Journal

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BackgroundChronic kidney disease (CKD) patients experience a high symptom burden including fatigue, sleep difficulties, muscle weakness and pain. These symptoms reduce levels of physical function (PF) and activity, and contribute to poor health-related quality of life (HRQoL). Despite the gathering evidence of positive physiological changes following exercise in CKD, there is limited evidence on its effect on self-reported symptom burden, fatigue, HRQoL and physical activity.MethodsThirty-six patients [mean ± SD 61.6 ± 11.8 years, 22 (61%) females, estimated glomerular filtration rate: 25.5 ± 7.8 mL/min/1.73 m2] not requiring renal replacement therapy underwent 12 weeks (3 times/week) of supervised aerobic exercise (AE), or a combination (CE) of AE plus resistance training. Outcomes included self-reported symptom burden, fatigue, HRQoL and physical activity.ResultsExercise reduced the total number of symptoms reported by 17% and had favourable effects on fatigue in both groups. AE reduced the frequency of ‘itching’, ‘impotence’ and ‘shortness of breath’ symptoms, and the intrusiveness for symptoms of ‘sleep disturbance’, ‘loss of muscular strength/power’, ‘muscle spasm/stiffness’ and ‘restless legs’. The addition of resistance exercise in the CE group saw a reduction in ‘loss of muscular strength/power’. No changes were seen in subjective PF or physical activity levels. AE increased self-efficacy for physical activity.ConclusionsSupervised exercise had favourable effects on symptom frequency and intrusiveness, including substantial improvements in fatigue. Although the intervention did not improve self-reported physical activity levels, AE increased patients’ self-efficacy for physical activity. These favourable changes in self-reported outcomes support the important role of exercise in CKD.

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‘Self-Management Intervention through Lifestyle Education for Kidney health’ (the SMILE-K study): protocol for a single-blind longitudinal randomised control trial with nested pilot study

Lightfoot

Wilkinson

Yates

et al. 2022

Preprint

Self Cite

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IntroductionMany people living with chronic kidney disease (CKD) are expected to self-manage their condition. Patient activation is the term given to describe the knowledge, skills, and confidence a person has in managing their own health and is closely related to the engagement in preventive health behaviors. Self-management interventions have the potential to improve remote disease management and health outcomes. We are testing an evidence- and theory-based digital self-management structured 10-week programme developed for CKD patients called ‘My Kidneys & Me’. The primary aim of the study (SMILE-K) is to assess the effect on patient activation levels.Methods and analysisA single-blind randomised control trial (RCT) with a nested pilot study will assess the feasibility of the intervention and study design before continuation to a full RCT. Individuals aged 18 years or older, with established CKD stage 3-4 (eGFR of 15-59 ml/min/1.73m2) will be recruited through both primary and secondary care pathways. Participants will be randomised into two groups: intervention group and control group. The primary outcome is the Patient Activation Measure (PAM-13). The full RCT will assess the effect of the programme on online self-reported outcomes which will be assessed at baseline, after 10-weeks, and then after 20-weeks in both groups. A total sample size of n=432 participants are required based on a 2:1 randomisation. A sub-study will measure physiological changes (e.g., muscle mass, physical function) and patient experience (qualitative semi-structured interviews).Ethics and disseminationThis study was fully approved by the Research Ethics Committee-Leicester South on the 19/11/2020 (reference: 17/EM/0357). All participants are required to provide informed consent obtained online. The results are expected to be published in scientific journals and presented at clinical research conferences. This is protocol version 1.0 dated 27/01/2021.Trial registration numberThe study was prospectively registered as ISRCTN18314195 in December 2020.

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Kidney symptom questionnaire: Development, content validation and relationship with quality of life

Abstract: This work has provided a new, validated symptom score for patients with CKD not requiring RRT for clinical management and research purposes.

Cited by 12 publications

References 32 publications

Physical Activity and Quality of Sleep in Patients with End-Stage Renal Disease on Hemodialysis: A Preliminary Report

Physical Activity and Quality of Sleep in Patients with End-Stage Renal Disease on Hemodialysis: A Preliminary Report

Twelve weeks of supervised exercise improves self-reported symptom burden and fatigue in chronic kidney disease: a secondary analysis of the ‘ExTra CKD’ trial

‘Self-Management Intervention through Lifestyle Education for Kidney health’ (the SMILE-K study): protocol for a single-blind longitudinal randomised control trial with nested pilot study

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