Symptom-burden in people living with frailty and chronic kidney disease

Nixon, Andrew; Wilkinson, Thomas J.; Young, Hannah; Pendleton, Neil; Mitra, Sandip; Brady, Mark E.; Dhaygude, Ajay; Smith, Alice C.

doi:10.1186/s12882-020-02063-6

Cited by 29 publications

(24 citation statements)

References 49 publications

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“…In addition, the current review reported a higher level of informal caregiver burden in caregivers who had to assist patients with personal care needs and those patients on dialysis who suffered other chronic diseases. Ageing, frailty, and multi-morbidity are highly prevalent in ESKD [ 57 , 58 ] placing significant burdens on informal caregivers highlighting the urgent need for the development of supportive interventions.…”

Section: Discussionmentioning

confidence: 99%

Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

et al. 2021

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Background: Patients with end-stage kidney disease receiving haemodialysis rely heavily on informal caregivers to support them living at home. Informal caregiving may exact a toll on caregivers’ physical, emotional, and social well-being, impacting negatively on their overall quality of life. The aim of this narrative review is to report knowledge requirements and needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Methods: The review followed the Preferred Reporting Items for Reporting Systematic Reviews and Meta-analyses (PRISMA). Five electronic databases were searched: Web of Science, PsycINFO, Embase, Medline, and CINAHL to identify the experiences and unmet needs of informal caregivers of patients with end stage kidney disease (ESKD) receiving haemodialysis. Results: Eighteen papers were included in the review and incorporated a range of methodological approaches. There are several gaps in the current literature around knowledge and informational needs and skills required by informal caregivers, such as signs and symptoms of potential complications, dietary requirements, and medication management. Although most research studies in this review illustrate the difficulties and challenges faced by informal caregivers, there is a paucity of information as to which support mechanisms would benefit caregivers. Conclusion: Informal caregivers provide invaluable assistance in supporting people with ESKD undergoing haemodialysis. These informal caregivers however experience multiple unmet needs which has a detrimental effect on their health and negatively influences the extent to which they can adequately care for patients. The development of supportive interventions is essential to ensure that informal caregivers have the requisite knowledge and skills to allow them to carry out their vital role.

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Section: Discussionmentioning

confidence: 99%

Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

et al. 2021

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“…A more realistic sample size of 268 and 200 participants would be needed if using the SPPB or POS-S Renal, respectively. Physical function and symptom-burden are clinical outcomes relevant and important for people living with CKD and people living with frailty alike [14,15,[53][54][55]. Therefore, we suggest that either may be used as the primary outcome measure of interest in a RCT investigating the effectiveness of a home-based exercise programme in this patient population.…”

Section: Discussionmentioning

confidence: 99%

Home-based exercise for people living with frailty and chronic kidney disease: A mixed-methods pilot randomised controlled trial

et al. 2021

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Background Frailty is associated with adverse health outcomes in people with chronic kidney disease (CKD). Evidence supporting targeted interventions is needed. This pilot randomised controlled trial (RCT) aimed to inform the design of a definitive RCT evaluating the effectiveness of a home-based exercise intervention for pre-frail and frail older adults with CKD. Methods Participants were recruited from nephrology outpatient clinics to this two-arm parallel group mixed-methods pilot RCT. Inclusion criteria were: ≥65 years old; CKD G3b-5; and Clinical Frailty Scale score ≥4. Participants categorised as pre-frail or frail using the Frailty Phenotype were randomised to a 12-week progressive multi-component home-based exercise programme or usual care. Primary outcome measures included eligibility, recruitment, adherence, outcome measure completion and participant attrition rate. Semi-structured interviews were conducted with participants to explore trial and intervention acceptability. Results Six hundred and sixty-five patients had an eligibility assessment with 217 (33%; 95% CI 29, 36) eligible. Thirty-five (16%; 95% CI 12, 22) participants were recruited. Six were categorised as robust and withdrawn prior to randomisation. Fifteen participants were randomised to exercise and 14 to usual care. Eleven (73%; 95% CI 45, 91) participants completed ≥2 exercise sessions/week. Retained participants completed all outcome measures (n = 21; 100%; 95% CI 81, 100). Eight (28%; 95% CI 13, 47) participants were withdrawn. Fifteen participated in interviews. Decision to participate/withdraw was influenced by perceived risk of exercise worsening symptoms. Participant perceived benefits included improved fitness, balance, strength, well-being, energy levels and confidence. Conclusions This pilot RCT demonstrates that progression to definitive RCT is possible provided recruitment and retention challenges are addressed. It has also provided preliminary evidence that home-based exercise may be beneficial for people living with frailty and CKD. Trial registration ISRCTN87708989; https://clinicaltrials.gov/.

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“…• Kidney Symptom Questionnaire (KSQ): The KSQ assesses the frequency, intrusiveness, and total impact of a range of 13 common kidney disease-related symptoms. This questionnaire has been validated by our group 27 and used widely in the literature 28 .…”

Section: Secondary Outcomesmentioning

confidence: 99%

‘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

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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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Symptom-burden in people living with frailty and chronic kidney disease

Cited by 29 publications

References 49 publications

Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

Knowledge Requirements and Unmet Needs of Informal Caregivers of Patients with End-Stage Kidney Disease (ESKD) Receiving Haemodialysis: A Narrative Review

Home-based exercise for people living with frailty and chronic kidney disease: A mixed-methods pilot randomised controlled 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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