At the end of 2017, 64,887 patients with end-stage kidney disease (ESKD) were receiving kidney replacement therapy in England [1]. ESKD is a chronic condition in which treatment is life-saving but not curative [2]. Patients with ESKD face numerous challenges related to their health status and ongoing treatment that introduces substantial uncertainty into their lives [3]. Consequently, patients can experience a plethora of emotional and psychological problems [4]. The prevalence of depression and anxiety in patients with chronic conditions is around 1.5 to 4 times greater than in the general population [5, 6], and anxiety is among the top patient and caregiver priorities for outcomes in Chronic Kidney Disease [7]. Approximately 20–30% of dialysis patients [8], and 25% of transplant patients [9] experience depression and anxiety. Similar ranges have been shown in people with other long-term conditions such as type two diabetes (18 to 35%) [10]; and Chronic Obstructive Pulmonary Disease (COPD) (20%) [11]. Results from the cross-sectional survey element of this study showed that 33.3% of people with ESKD met criteria for mild to moderate distress [12]. Similarly, a recent analysis of haemodialysis patients [13] showed 39% of patients demonstrated depression using the validated Patient-Health Questionnaire-9 [14].

Appropriate support for patients who experience emotional and psychological problems is central to UK policy on managing long-term conditions [15] and kidney disease [16]. Both the Department of Health (DH) and National Institute for Health and Care Excellence (NICE) mandate the provision of emotional and psychological support within their national kidney guidelines [17, 18], and patients with ESKD also support embedding effective treatment of emotional difficulties within kidney units [19]. However, patient support is generally targeted towards patients requiring psychological or psychiatric intervention, and lower-level needs (‘distress’) in kidney patients may remain unrecognised or untreated [20]. This is particularly problematic given that lower-level problems may be associated with poorer outcomes [21, 22].

Definitions of distress originate in the field of oncology, where distress has been argued to “extend along a continuum ranging from common normal feelings of vulnerability, sadness and fears, to problems that can become disabling such as depression, anxiety, panic and social isolation” [23]. Whilst multiple studies have explored patient experience of anxiety and depression within the context of kidney failure [24], there is little research describing patients’ experience of living with distress and undergoing treatment for ESKD. This study used semi-structured interviews to explore patients’ experience of mild-to-moderate distress in ESKD.

This study was approved by the NRES West Midlands Coventry and Warwickshire Research Ethics Committee (Ref: 15/WM/0288) and the Health Research Authority (IRAS Ref: 184996). Approval was also obtained from the Research Governance office of each of the participating National Health Service (NHS) Trusts.

The detailed study methodology is available in the published protocol [25]. Briefly, semi-structured, in-depth qualitative interviews were undertaken with clinically stable adult patients (aged 18 and over) being treated at four kidney units with diverse patient populations located in urban areas in the West Midlands, England. Eligible patients were those receiving dialysis treatment (in-centre haemodialysis–HD; home haemodialysis–HHD, peritoneal dialysis–PD); patients who were yet to start treatment, and patients with a kidney transplant.

Patients were recruited following a survey which used the distress and emotion thermometers [26] to identify respondents who met the criteria for mild-to-moderate distress i.e. scores of between 4 and 7 on the distress thermometer (DT) or between 0 and 3 on the DT and between 4 and 7 on one or more of the four domains measured by the emotion thermometers (anxiety, depression, anger, perceived need for help). Patients meeting these criteria, who also indicated willingness to be interviewed and provided contact details in their survey return were purposively sampled in order to achieve maximum variation by age, sex, ethnic group and treatment type.

Eligible patients were telephoned by a member of the research team to confirm their willingness to be interviewed and to record their preference for a face-to-face or telephone interview. Patients were then posted a consent form and Participant Information Sheet (PIS) which explained the purpose of the interview and what participation would involve. A further telephone call was made a week later to confirm participation and arrange an interview time. Telephone (n = 43) or face-to-face interviews in the patient’s home (n = 3) were undertaken between April 2016 and May 2017 by two female qualitative academic researchers (FT, EK), who were qualified to Masters level and employed by the University of Birmingham. The interviewers had no personal experience of, or particular personal interest in the research topic. Written consent was obtained from all participants.

All interviews lasted between 25 and 55 minutes and involved one interviewer and one interviewee at a time. Interviews were structured around a topic guide informed by the literature, kidney patients with an advisory role on the study, and clinicians and academics on the project advisory group. The topic guide was designed to explore issues related to distress, coping, adjustment and support [25]. Patients were asked about their experience of distress and the support they felt they needed, staff recognition of distress and support offered, and whether they could make any recommendations about how kidney units could improve the recognition of, and response to patients’ emotional challenges. In the case of participants undergoing in-centre HD, interviews were always scheduled to take place on a different day to a planned HD session to avoid the likelihood of post-dialysis fatigue impacting on participants’ emotional perspectives. Data saturation was reached after 46 interviews had been completed. No participants chose to withdraw from the study. Interviews were audio-recorded and professionally transcribed verbatim, with transcripts proofread against the recordings to ensure accuracy. Interviewees were not given the opportunity to check transcripts.

Interview data were analysed thematically [27]. Two researchers (GC, KS) independently coded eight of the 46 patient transcripts. Following comparison and discussion, an initial coding framework was developed, which was used by KS to code the remaining transcripts using NVivo software. During coding, regular discussion of ordinate and subordinate notes led to refinement of the detailed coding structure. Where data did not fit existing themes, new codes were developed or existing ones revised. A random selection of 10% of transcripts was coded independently by GC to check for consistency, with minor amendments subsequently made to the coding framework. Thematic analysis was then used to compare and cluster codes so that emerging themes could be identified. These were discussed by the research team, and the findings were refined in an iterative process.

A total of 46 interviews were undertaken. Table 1 describes key participant characteristics.

Five key themes were identified (Table 2). Three themes focus on patients’ experience of distress and the extent to which patients were able to develop coping strategies; two further themes describe patients’ views about the kidney unit itself, and the support offered by staff.

This study has shown that distress and emotional difficulties are commonly experienced by patients with ESKD, particularly with regard to the rigours of dialysis treatment and the restrictions that this places on patients’ daily lives. Participants described many problems and potential sources of distress, but their accounts were dominated by the difficulties they perceived in being able to cope with the often unanticipated impact of ESKD and its treatment, particularly in terms of the likelihood that they would experience emotional challenges. Patients who described feeling in control of their condition, and who had strong family and friend support networks reported being better able to manage their distress, and those who had long-standing positive relationships with staff on the kidney unit talked about the effective and welcome support they received.

However, many participants felt unable to raise emotional issues with healthcare staff, due to a perception that staff did not have the time to discuss non-medical issues, or that they lacked the relevant skills to handle any emotional issues raised. Added to this, the deliberately upbeat atmosphere on the kidney units–whilst positive and comforting for some–may have inadvertently created an environment in which patients felt it was inappropriate to talk about distress, and many participants described being embarrassed about addressing emotional issues and deliberately avoiding disclosing any information about their distress. Other research has found that for many patients with emotional difficulties, fear of the stigma of being perceived as suffering from a mental health issue is a significant barrier to sharing feelings with staff and/or taking up the offer of supportive interventions [28]. In the case of patients that have limited contact with kidney staff, such as those on home dialysis or transplant patients who may attend follow-up appointments relatively infrequently, the opportunities to raise emotional issues are correspondingly reduced and may add to patients’ reluctance to disclose distress to their healthcare professionals on the occasions that they do attend the kidney unit [29].

This study has a number of implications for how kidney units could improve the support offered to patients. Pre-dialysis education about both the physical and emotional impacts of treatment would help to manage patients’ expectations about what they may experience, and could go some way towards ‘normalising’ distress within ESKD and preparing patients for some of the potentially negative emotional consequences of treatment [30]. Helping patients to develop adjustment and coping mechanisms is also essential. This could be achieved through patient referral to renal psychology services, or by ensuring that healthcare staff are trained in the skills necessary to recognise and respond to distress in their patients. Existing models of adaptation to chronic illness give examples of factors that enable good or poor adjustment [31, 32]. Good adjustment may involve feeling a sense of control regarding disease management, acceptance of one’s illness, and high social support (cognitive factors) combined with problem-focused coping strategies, positive health behaviours and adherence to treatment (behavioural factors). In our data, the absence of explicit coping strategies was striking, and where coping strategies were being used at all, they tended to be passive strategies of suppressing distressing thoughts and feelings. This has been found in other studies of adjustment to chronic conditions [33, 34]. There have been positive reports about the benefits of peer support, in which shared experience has been found to help patients with Chronic Kidney Disease to come terms with their condition and develop appropriate coping mechanisms for distress. Thus, the encouragement of such mutual support amongst patients with ESKD may be beneficial [35].

In terms of how patients can be guided about coping with distress, there seems to be a missing link between patient needs and staff behaviour [30]. Staff may avoid talking about distress because they are unsure of how to help and may feel unable to resolve patients’ emotional issues. The offer of formal psychological support may benefit some patients, however, our data showed that patients may simply want to talk to a sympathetic listener rather than necessarily reaching a solution to their problems. Kidney services should work to remove the barriers to patients feeling able to disclose emotional issues, and the mutual recognition that such issues are normal and to be expected within a chronic condition like ESKD is essential. This could be aided by open and transparent communication between healthcare professionals and patients at all stages of ESKD, so that expectations about the likelihood of distress could be managed, and challenges in dealing with RRT, along with strategies to help minimise problems, could be discussed with patients and their caregivers.

Despite UK national policy and guidelines which mandate the integration of emotional and psychological health into routine care for patients with chronic conditions, this study suggests that there is still progress to be made in the case of chronic kidney disease. Patient distress was substantial and few patients were able to develop appropriate coping strategies to manage their emotional issues. Instances in which kidney unit staff had offered effective emotional support to patients were rarely raised by participants, and those that were described were largely due to the input of particular staff with whom patients had long-standing relationships rather than this support being routinely offered by kidney units. The findings of this study are likely to be relevant to other long-term conditions where levels of distress are known to be high.