Survey of exercise testing and training in cystic fibrosis clinics in the UK: a decade of progress.

OBJECTIVES: Regular exercise testing is recommended for people with cystic fibrosis (pwCF), as is the provision and regular review of exercise training programmes. A previous survey on exercise testing and training for pwCF in the UK was conducted over a decade ago. With the landscape of CF changing considerably during this time, this survey aimed to evaluate UK-based exercise testing and training practices for pwCF a decade on. DESIGN: Cross-sectional, online survey. PARTICIPANTS: A survey was distributed electronically to UK CF clinics and completed by the individual primarily responsible for exercise services. Descriptive statistics and qualitative analyses were undertaken. RESULTS: In total, 31 CF centres participated, representing ~50% of UK specialist clinics. Of these, 94% reported using exercise testing, 48% of which primarily use cardiopulmonary exercise testing. Exercise testing mostly occurs at annual review (93%) and is most often conducted by physiotherapists (62%). A wide variation in protocols, exercise modalities, normative reference values and cut-offs for exercise-induced desaturation are currently used. All centres reportedly discuss exercise training with pwCF; 94% at every clinic appointment. However, only 52% of centres reportedly use exercise testing to inform individualised exercise training. Physiotherapists typically lead discussions around exercise training (74%). CONCLUSIONS: These data demonstrate that the majority of respondent centres in the UK now offer some exercise testing and training advice for pwCF, representing a marked improvement over the past decade. However, continued efforts are now needed to standardise exercise practices, particularly regarding field testing practices and the translation of test results into personalised training programmes for pwCF.

Experiences of adults living with a kidney transplant-Effects on physical activity, physical function, and quality of life: A descriptive phenomenological study.

BACKGROUND: Although kidney transplantation is the best treatment for kidney failure, scarce research has examined its effects on physical activity, physical function and quality of life. OBJECTIVES: To investigate the experiences of a group of adults living with advanced kidney disease focusing on quality of life, physical activity and function and to see how findings differ in a group of kidney transplant recipients. APPROACH: Individual semi-structured interviews were conducted with adults with advanced kidney disease (n = 10; 70.5 ± 8.9 years) and adults who had received a kidney transplant (n = 10; 50.7 ± 11.5 years; transplant age: 42.7 ± 20.9 months). Interviews were transcribed verbatim, thematically analysed and composite vignettes developed. FINDINGS: Individuals with advanced kidney disease described a sense of loss and alteration to their life plans. Kidney transplant recipients reported increased freedom, independence and a return to near normality, with improved quality of life, physical activity and function compared with their pre-transplant lives. However, transplant recipients also described living with anxiety about the health of their transplant and fear it may fail. CONCLUSION: Whilst adults living with advanced kidney disease often experience a reduced quality of life, physical activity and function, kidney transplantation can help facilitate a return to pre-disease levels of physical activity, physical function and quality of life. However, transplant recipients also reported living with anxiety around their new kidney failing. This study demonstrates the variability in the lived experiences of adults living with advanced kidney disease or a kidney transplant and highlights the need for patient-centred care.

Exploring patients' experiences of the impact of dialysis therapies on quality of life and wellbeing.

BACKGROUND: When people with chronic kidney disease reach kidney failure, renal replacement therapy is usually required to improve symptoms and maintain life. Although in-centre haemodialysis is most commonly used for this purpose, other forms of dialysis are available, including home haemodialysis and peritoneal dialysis. OBJECTIVES: We aimed to explore the experiences of adults living with chronic kidney disease who were either approaching the need for dialysis or had reached kidney failure and were receiving a form of dialysis. In particular, we explored how different forms of dialysis affect their quality of life, wellbeing, and physical activity. METHODS: Individual semistructured interviews were conducted with 40 adults with kidney failure, comprising four groups (n = 10 each): those receiving in-centre haemodialysis, home haemodialysis or peritoneal dialysis, or predialysis. Interviews were transcribed verbatim, thematically analysed, and then composite vignettes were subsequently developed to present a rich narrative of the collective experiences of each group. FINDINGS: Compared with adults who were predialysis, quality of life and wellbeing improved upon initiation of their home haemodialysis or peritoneal dialysis. Conversely, minimal improvement was perceived by those receiving in-centre haemodialysis. Low physical activity was reported across all four groups, although those receiving home haemodialysis and peritoneal dialysis reported a greater desire and ability to be physically active than those in-centre. CONCLUSION: These findings highlight that dialysis modalities not requiring regular hospital attendance (i.e., home haemodialysis and peritoneal dialysis) improve independence, quality of life, wellbeing, and can facilitate a more physically active lifestyle.

Understanding the Impact of Initial COVID-19 Restrictions on Physical Activity, Wellbeing and Quality of Life in Shielding Adults with End-Stage Renal Disease in the United Kingdom Dialysing at Home versus In-Centre and Their Experiences with Telemedicine.

Early in the coronavirus-2019 (COVID-19) containment strategy, people with end-stage renal disease (ESRD) were identified as extremely clinically vulnerable and subsequently asked to 'shield' at home where possible. The aim of this study was to investigate how these restrictions and the transition to an increased reliance on telemedicine within clinical care of people living with kidney disease impacted the physical activity (PA), wellbeing and quality of life (QoL) of adults dialysing at home (HHD) or receiving in-centre haemodialysis (ICHD) in the UK. Individual semistructured telephone interviews were conducted with adults receiving HHD (n = 10) or ICHD (n = 10), were transcribed verbatim and, subsequently, thematically analysed. As result of the COVID-19 restrictions, PA, wellbeing and QoL of people with ESRD were found to have been hindered. However, widespread support for the continued use of telemedicine was strongly advocated and promoted independence and satisfaction in patient care. These findings highlight the need for more proactive care of people with ESRD if asked to shield again, as well as increased awareness of safe and appropriate PA resources to help with home-based PA and emotional wellbeing.