Ella Ford

Background: People with tic disorders (TDs)—such as Tourette syndrome—report poorer quality of life compared to non-TD peers, and experience considerable difficulties, including societal stigmatization and barriers to accessing health care and evidence-based interventions. Peer support can help improve psychological outcomes, and online support communities (OSCs) are one way to access psychological support. Empowerment involves improving an individual’s cognitive processes to increase their ability to assert control over their health condition. OSCs have been suggested to facilitate empowerment, but this has not yet been investigated in users of OSCs for TDs. Objective: This study aimed to explore empowerment processes and outcomes present in OSCs as perceived and reported by users of OSCs for TDs living with a TD. Methods: A web-based survey of current users of OSCs for TDs (n=39) was conducted in summer 2022. The survey included four free-text questions about the impact of using OSCs for TDs in relation to empowerment, such as how it has affected their interactions with health care professionals (HCPs), decisions about treatment, and their experiences of living with a TD. Survey responses were analyzed using deductive and inductive reflexive thematic analysis guided by an initial coding structure derived from the empowering processes and outcomes theoretical framework. Results: Analysis of responses identified a range of empowering processes (eg, exchanging information, encountering emotional support, finding recognition, and sharing experiences) and outcomes (eg, being better informed, feeling more confident in the relationship with HCPs and in making treatment decisions, and enhanced well-being) as related to OSC use in people with TDs that were consistent with the theoretical framework. Additionally, the process of changing stereotypes and stigma, the outcomes of raising awareness, and “one size does not fit all” were identified. A small number of disempowering processes and outcomes were identified, notably the outcome of feeling less confident in the relationship with HCPs. Conclusions: These findings contribute to evidence for empowerment processes and outcomes experienced by users of health OSCs generally and highlight unique aspects of empowerment for users of OSCs with TDs and how these affect their experiences. OSCs appear to be an important tool in improving mental well-being through validation and recognition from peers, related to the acknowledgment of feelings of imposterism. Using OSCs can expand knowledge through exchanging information and experiences they may not have otherwise had access to—increasing empowerment through improvements in self-management and confidence in treatment decisions. However, this can also decrease trust in HCPs and negatively impact relationships due to decreased hope of assistance and fear of stigmatization for using OSCs. The authors suggest that recommendations regarding the use of OSCs are presented in self-management guidelines concerning coping strategies and the importance of peer support in living with tics.

Background: We developed My Kidneys & Me (MK&M), a digital health intervention (DHI) that delivers specialist health and lifestyle education, to improve self-management in people with chronic kidney disease (CKD). Objective: We aimed to explore the uptake and usability of MK&M alongside patient experiences of using MK&M. Methods: Adult patients with CKD stages 3-4 were recruited from 26 hospital kidney services in England. Overall, 420 participants were randomized 2:1 to the intervention (MK&M) or control (usual care) group. Uptake and usage data were collected from the MK&M program. Perceived usefulness of the MK&M sessions and features were collected via web-based surveys (scores were rated out of 10, where 0=“not useful at all” and 10=“very useful”). Qualitative (semistructured and think-aloud) interviews were used to explore participants’ experiences of using and engaging with MK&M. Usage metrics were assessed using descriptive and frequency analyses. Qualitative data were analyzed using thematic analysis. Results: Overall, 280 participants were randomized to receive the MK&M intervention (age: mean 60.8, SD 12.8 y; n=161, 57.5% male; eGFR: mean 38.9, SD 18.5 mL/min/1.73 m

2

Background and Aims The COVID-19 pandemic resulted in widespread psychological distress, including depression, anxiety, and stress, especially in clinically vulnerable people such as those with chronic kidney disease (CKD). In the UK, high rates of infection, severe illness and death, and profound changes to usual activities and healthcare delivery imposed by social distancing and isolation persisted throughout 2020 and only began to abate after the introduction of the COVID-19 vaccination programme early in 2021. We conducted a survey to assess levels of general depression, anxiety, stress and health anxiety in people with non-dialysis CKD (ND-CKD), kidney transplant recipients (KTRs), and their significant others (SOs) at two timepoints: during the Autumn of 2020 when COVID-19 levels and social restrictions were high, and in May 2021 after the majority of the population had been vaccinated. We hypothesised that the mental health status of people affected by CKD would improve after receiving the vaccine. Method 11 hospital sites in England invited local patients and their SOs to complete an online survey in Autumn 2020, and a follow-up in May 2021. The survey included two validated mental health questionnaires: the Depression, Anxiety and Stress Scale (DASS-21) and the Short Health Anxiety Index (SHAI). Higher scores are indicative of higher levels of depression, stress and anxiety, and health anxiety respectively. One-way ANOVA was used to compare questionnaire scores between the three participant groups, and paired sample t-tests were used to assess changes between the two timepoints for each group. Results 381 participants completed the Autumn 2020 survey: 123 ND-CKD (61% male, mean age 64[SD:14] years), 150 KTRs (51% male, 59[SD:12] years), and 108 SOs (39% male, 60[SD:13] years). 318 completed the May 2021 follow-up survey. 174 participants completed both surveys. In Autumn 2020, people with ND-CKD had significantly higher DASS-21 anxiety scores than SOs (p = 0.029). Both ND-CKD and KTRs had significantly higher health anxiety scores than SOs at baseline (P<0.001), and at follow-up (ND-CKD, P = 0.006; KTR, P = 0.010). In May 2021, 95% of participants had received the COVID-19 vaccine. There were no significant changes in DASS-21 subscale scores or SHAI scores between the Autumn 2020 and May 2021 timepoints for any of the participant groups. Conclusion Our results show that during the COVID-19 pandemic, people living with ND-CKD and KTRs had higher levels of health-related anxiety than their SOs. As the COVID-19 vaccine programme reduced health risks and allowed relaxation of social restrictions, it may be expected to result in improved population mental health. However, in May 2021, we found no improvement in depression, anxiety, stress, or health anxiety among people living with CKD or their SOs despite nearly all the participants having received the vaccine. It is likely that increased social mixing and marked reduction in public mask-wearing led to persistently high anxiety levels in clinically vulnerable people and those who live with them. Today, the majority of the public have returned to “normal” social behaviour and masks are rarely worn, but COVID-19 remains a threat to people with CKD. There is an urgent need for better mental health support among the kidney community.

Background and Aims Throughout the majority of 2020, the COVID-19 pandemic forced the UK population, and especially clinically vulnerable people such as those with chronic kidney disease (CKD), to isolate and cease their usual activities outside the home. The COVID-19 vaccine became available in early 2021, with the aim of protecting against COVID-19 infection, reducing the risk of serious illness or death, and consequently allowing a return to more normal social behaviours. In May 2021 we conducted a survey to explore perceptions of increased COVID-19 safety and resultant changes in social mixing behaviour in people with non-dialysis CKD (ND-CKD), kidney transplant recipients (KTRs), and their significant others (SOs) after receiving the COVID-19 vaccination. Method ND-CKD, KTR and SO participants from 11 hospital sites across England were invited to complete an online survey in May 2021. The survey included items asking about changes to their feelings of COVID-19 risk and safety, and their social behaviours after receiving the COVID-19 vaccine. Participants ranked questions on 7-point Likert scales (perceived COVID-19 safety, 1: feel not safe at all to 7: feel completely safe; changes in social behaviour, 1: no change to 7: complete change), and provided free-text explanations for their ranked responses. Question ratings were analysed by ANOVA, and free-text responses by content analysis to identify common themes. Results 114 ND-CKD (mean age 65.5 (±1.2) years, 59% male), 120 KTR (60.95 (±9.9) years, 51% male), and 77 SO (63 (±11.08) years, 62% male) participants completed the survey. In total, 109/114 (96%) ND-CKD, 116/120 (97%) KTR, and 71/77 (92%) SO participants had received the COVID-19 vaccine. There were no significant differences between the groups for perceived COVID-19 safety, with all three groups reporting feeling safe from the virus (mean perceived safety rating 6.0 [±1.3] out of a maximum of 7). However, all groups reported limited changes in behaviour after receiving the vaccine (scale rating 3.6 [±1.3]/7). Common reasons identified for perceived feelings of safety were ‘risk perception’ e.g. reduced risk of severe illness, death and hospitalisation and ‘availability of vaccine evidence’ e.g. data that supported the safety of the vaccine being available to the public as well as trust in science and health care professionals. ‘Relaxed shielding’, ‘compliance with government guidance’, and ‘using own discretion’ were common reasons underlying changes in social behaviour. Conclusion These results show that the majority of participants had received at least one dose of the COVID-19 vaccine by May 2021. Participants did report feeling safer from COVID-19, but despite this, changes to isolation and social mixing behaviour were limited. The free text responses provided explanations for this: participants stated they felt safer after receiving the vaccine due to reduced risk of severe illness and hospitalisation, and new variants. However, despite feeling safer, changes in social behaviour were limited. This may be partly explained by the continuation of some government restrictions at the time of the survey. However, increased social mixing and abandonment of mask-wearing by the general public potentially increased risk for the clinically vulnerable. Together with uncertainty around vaccine efficacy in clinical populations, this resulted in ongoing social avoidance behaviour. These factors persist in today's environment and highlight the need for communication of high-quality research evidence to encourage uptake of booster COVID-19 and flu vaccines, and effective public education campaigns, to allow clinically vulnerable people to confidently return to pre-pandemic social activity.

Kidney transplant recipients (KTR) have an increased burden of cardiovascular disease (CVD) and poor cardiorespiratory fitness (CRF) is associated with poorer clinical outcomes; particularly cardiovascular related. The aims of this study were: (1) to compare CRF parameters in KTR and age-sex matched healthy volunteers (HV), (2) explore the CRF related effects of 12-weeks of home-based exercise rehabilitation in KTR.

Poor sleep quality is common in chronic kidney disease (CKD). Understanding how symptoms (Sx) relate to sleep could help identify people who experience, or are at risk of experiencing, poor sleep quality. We explored the relationship between sleep quality and Sx experienced in people with living with CKD and their significant others (SO).

Background Psychological distress can be exacerbated by micro (personal) and macro (societal) worries, especially during challenging times. Exploration of this relationship in people with chronic kidney disease is limited. Objectives (1) To identify the types and levels of worries concerning people with chronic kidney disease in the context of the COVID-19 pandemic; (2) to explore the association of worries with psychological distress including depression, stress, anxiety, and health anxiety. Design and participants A cross-sectional online survey collected data at two time points (Autumn 2020, n = 528; Spring 2021, n = 241). Participants included kidney transplant recipients and people with non-dialysis dependent chronic kidney disease. Measurements The survey included questions about worry taken from the World Health Organisation COVID-19 Survey, the Depression, Anxiety and Stress Scale, and the Short Health Anxiety Index. Data were analysed using descriptive statistics and multiple regression. Results Worries about loved ones’ health, the healthcare system becoming overloaded, losing a loved one, economic recession, and physical health were the highest rated concerns. Worrying about mental health was associated with higher depression, stress, anxiety, and health anxiety. Worrying about physical health was associated with anxiety and health anxiety. Worrying about losing a loved one was associated with health anxiety, and worrying about not being able to pay bills was associated with stress. Conclusions People with kidney disease reported micro and macro worries associated with psychological distress during the COVID-19 pandemic. This study highlights factors that should be considered to improve the mental health and well-being of people with kidney disease.

We co-developed a digital health intervention (DHI) ‘My Kidneys & Me’ (MK&M) to support people with non-dialysis CKD to better self-manage health and lifestyle. MK&M includes theory-based educational and action (behaviour change) sessions about a healthy balanced diet, plus trackers for dietary goals. Here we report findings on dietary behaviours from a multicentre randomised control trial of MK&M. Methods: 420 participants aged ≥18 years with CKD stages 3-4 were recruited from 26 hospitals and randomised 2:1 to intervention (MK&M) (n=280) or control (n=140) groups. The UK Diabetes Diet Questionnaire (UKDDQ) was collected at baseline and 20-weeks via an online survey. The UKDDQ asks respondents how often they consumed certain foods and drinks over the last month. Items are scored on the frequency of consumption and classified into “healthy”, “less healthy” and “unhealthy” choices. Access to and usage data of MK&M were collected. Linear regression models, adjusted for baseline values, were conducted. Results: Of the 280 participants assigned to the intervention group, 225 (80%) used MK&M at least once. Over 20-weeks, the diet educational session was accessed by 107 (48%) participants and viewed 10.5 (±5.4) times for 11.0 (±15.0) minutes; the diet action session was accessed by 77 (35%) participants and viewed 12.1 (±5.7) times for 7.5 (±6.7) minutes. The healthy eating tracker was used by 32 (14%) participants. 30 (13%) participants set healthy eating goals (mean:1.6±1.2). At baseline, 44% MK&M (n=122) and 40% control (n=55) participants had a UKDDQ score in the healthy range (≥4) (mean:3.3±0.4). At 20-weeks, the proportion with a UKDDQ in the healthy range increased by 45% in MK&M group (44-64%, P<0.001) and 28% in control (40-51%, P<0.001). Significant between-group differences were observed for changes in the number of healthy (±0.8, P=0.024) and less healthy dietary choices (±0.5, P=0.027), with MK&M group increasing the number of healthy food choices (+0.7, P=0.005) and decreasing the number of less healthy food choices (-0.6, P=0.009). Conclusion: The use of MK&M DHI improved dietary food choices. People with CKD are interested in and actively engaged with DHIs to support healthy dietary habits. MK&M can be used to support people with CKD to improve their dietary behaviours.

Background: The natural world is beneficial to human health and wellbeing. People with CKD often experience psychological distress which can result in poor health outcomes. We explored the association between exposure to the natural environment and psychological wellbeing in CKD. Methods: 319 participants across CKD stages (188 non-dialysis, 70 kidney transplant recipients, 40 haemodialysis and 21 peritoneal dialysis) from 9 UK NHS hospitals completed an online survey comprising the Distress, Anxiety, Stress Scale (DASS-21), 12-Item Short Form Health Survey (SF-12) and bespoke questions relating to access to and time spent in the natural environment. Data were analysed using frequency analysis, multiple linear regression, and logistic regression. Results: Access to and time spent in the natural environment was similar for the different CKD groups. In the summer, 45% of participants spent more than an hour a day, at least five days a week, in the natural environment, whilst in the winter, this was only 19% of participants. Increased exposure to the natural environment was significantly associated with lower levels of depression (p<0.001), anxiety (P=0.002), and stress (p=0.029), and higher levels of mental health-related quality of life (HRQoL) (P<0.001). Participants reporting greater exposure to the natural environment were less likely to report experiencing stress (OR: 11.118, P=0.002) or depression (OR: 4.109, P<0.001). Conclusion: Greater exposure to the natural environment is associated with better psychological wellbeing and mental HRQoL in people with CKD, suggesting the value of the natural world. Healthcare professionals should support people with CKD to access and engage with the natural environment. This data could inform the development of nature-based interventions for people with CKD to improve HRQoL.

Background: Although tic disorders (TDs) such as Tourette syndrome are relatively rare, they can have a significant impact on those living with TDs, who report lower quality of life compared to the general population and experience considerable difficulties including societal stigmatization, and barriers to accessing healthcare and pharmacological or behavioral interventions. Peer support can help improve psychological outcomes for this group, and online support communities (OSCs) have been suggested as a novel way to access this support. Empowerment involves improving an individual’s cognitive processes to increase their ability to be in control of their lives and condition. OSCs have been suggested to facilitate empowerment but this has not yet been investigated in a TD population. Objective: The objective of this study was to explore the presence and types of empowerment processes and outcomes perceived and reported by users of OSCs for TDs who are living with a TD. Methods: Current users of OSCs for TDs responded to an online survey, which included free text questions about the impact of using OSCs for TDs in relation to empowerment. Survey responses were analyzed using deductive and inductive reflexive thematic analysis. Results: Thirty-nine participants completed the online survey. A range of empowering processes were identified including exchanging information, encountering emotional support, finding recognition, helping others, sharing experiences, and changing stereotypes and stigma. Multiple empowerment outcomes including being better informed, feeling more/less confident in the relationship with healthcare professionals, enhanced acceptance, self-esteem and mental well-being, feeling more confident about treatment decisions, increased control over the future, enhanced social well-being, raising awareness and ‘one size does not fit all’ were identified. A small number of disempowering processes and outcomes were also identified from participant responses. Conclusions: These findings contribute to evidence for empowerment experienced by users of OSCs and consider processes and outcomes unique to people with TDs and how these affect their experience living with a TD.

My Kidneys & Me (MK&M), a digital health intervention delivering specialist health and lifestyle education for people with CKD, was developed and its effects tested (SMILE-K trial, ISRCTN18314195, 18/12/2020). 420 adult patients with CKD stages 3–4 were recruited and randomised 2:1 to intervention (MK&M) (n = 280) or control (n = 140) groups. Outcomes, including Patient Activation Measure (PAM-13), were collected at baseline and 20 weeks. Complete case (CC) and per-protocol (PP) analyses were conducted. 210 (75%) participants used MK&M more than once. PAM-13 increased at 20 weeks compared to control (CC: +3.1 (95%CI: −0.2 to 6.4), P = 0.065; PP: +3.6 (95%CI: 0.2 to 7.0), P = 0.041). In those with low activation at baseline, significant between-group differences were observed (CC: +6.6 (95%CI: 1.3 to 11.9), P = 0.016; PP: +9.2 (95%CI: 4.0 to 14.6), P < 0.001) favouring MK&M group. MK&M improved patient activation in those who used the resource compared to standard care, although the overall effect was non-significant. The greatest benefits were seen in those with low activation.