Carolyn Evans, Sarah Cook, Joanne Taylor - Review Date Jan 2016
Chronic kidney disease (CKD) is thought to occur in 14% of males, and 13% females; with 5% males, and 7% females having stages 3 – 5 CKD (Roderick et al, 2011). And, as the prevalence of CKD is higher in older people (Stevens et al, 2007), with an ageing population, the prevalence in the UK is likely to increase, as has been observed in the USA (Coresh et al, 2007).
Nephrologists are generally involved in patients with more advanced CKD (stages 3b – 5) and with those patients on renal replacement therapy. These patients often have multiple co-morbidities such as cardiovascular disease, hypertension, diabetes, renal bone disease and renal anaemia - so that medical management is challenging. Patients on renal replacement therapy may progress through periods on dialysis and transplantation with all their associated restrictions and complications.
Inevitably, because of the complexity of patient management, limited nursing and medical time is focussed on dealing with treatment related issues. Clinic appointments very rarely offer the time and opportunity to delve into the psychological impact of kidney failure, especially in patients on renal replacement therapy. Consequently, it is important to have services in place that can provide the appropriate adjunctive psychological assessment and interventions that CKD patients require.
The author was initially employed in early 2008 as the sole clinical psychologist in order to develop the service and this document outlines the five year development of psychological services within a rural county hospital, which is the hub for the provision of renal care in Dorset.
Historically, the literature in this area has tended to focus on the epidemiology of depressive disorders in this population. In this review, Kimmel (2002) suggested that the prevalence of depression in dialysis patients varies widely from zero to 100% according to the patient population studied, end stage renal disease (ESRD) therapy modality, diagnostic criteria and the screening tool used. However, following their examination of the literature, Cohen et al (2007) concluded that it is important to distinguish between the diagnosis of major depressive disorder, which is a serious condition lasting for a period of at least two weeks (with clearly defined diagnostic criteria) and the less severe presentations that might include lowered mood.
The authors concluded that more RCTs are needed to determine the optimal approach to the treatment of depression in patients with ESRD. Cukor has (2007) conducted randomised controlled trials (RCT) of cognitive behavioural therapy (CBT), which is currently recommended as the appropriate psychological therapy for depression - according to the National Institute for Health and Clinical Excellence (NICE). This approach has shown some promising results (Cukor, 2007).
Three notable papers have been published in the last three years which summarise the current perspectives on the incidence and treatment of depression and other psychological conditions, within the renal population in the United Kingdom. Bradley (2010) reviewed the work of Cukor, Peterson, Cohen, Kimmel and other authors (2006); and concluded that there is an increased incidence of depression in haemodialysis patients - of around 10%. He estimated that this figure would increase to 20-30% if all depressive disorders are included. Bradley’s review also pointed out that the recent research suggests that the presence of depression in patients with CKD predicts poorer outcomes; namely, an increased risk of hospitalisation, death and initiation of dialysis (Heyadati, 2010). In haemodialysis patients, depression is a predictor of mortality, withdrawal from therapy and hospitalisation (Lopes et al, 2002).
However, Attfield (2010) encouraged caution in focusing too much on the assessment and treatment of clinical depression, over the sub-threshold presentation of distress that may be more common in renal patients (and those with other long term conditions). It was suggested that anxiety disorders such as panic disorders and specific phobias, as well as adjustment disorders and family distress, are also evident in this population. These authors argue that services should provide appropriate evidence-based interventions for all forms of psychological distress.
In their audit of reasons for referral to a renal clinical psychology service, Coyne and Bebb found that over 30% of the referrals presented with adjustment difficulties and 20% with low mood. The others concerned difficult decision making, concordance issues, trauma, anxiety/panic, fear/phobias, bereavement, confusion, denial and weight management. However, they do not mention if they diagnosed their patients using psychometric tools or through clinical interview alone - so their data needs to be interpreted with caution.
A recent audit of our referral data supported the findings of Coyne and Bebb with the majority of the referred patients in our service actually fulfilling the Diagnostic and Statistical Manual of Mental Disorders criteria (DSM-IV; 1994) for adjustment disorders as opposed to clinical mood or anxiety disorders. This condition is known to occur following traumatic or stressful events and is characterised by mixed symptoms of low mood and depression; where neither set of symptoms alone would be considered sufficient to fulfill the diagnostic criteria for a depressive or anxiety disorder.
Symptoms tend to resolve spontaneously when trauma or stress is over. However, as is frequently case with renal patients, if the trauma continues, the symptoms are maintained. Other patients presented with low mood, phobias and disease/treatment related distress. A significant minority presented with adjustment problems associated with co-morbid or pre-morbid psychological issues, such as personality disorder and substance abuse. A minority of patients described symptoms consistent with a depressive disorder as defined by the DSM-IV.
When the author came into post, there were relatively few clinical psychologists employed in renal services, despite growing evidence of widespread psychological problems in this population. Although the author was integrated into the renal team of doctors, nurses, dieticians, occupational therapists and social workers, isolation from colleagues in the profession of clinical psychology was an issue for the first two or three years. It was immediately evident that services (historically) had been primarily medically oriented; and this was further confirmed when many of the early referrals received requested help with improving patient compliance with treatment. It was decided to assess as many of the referrals as possible: in order to gather information about the nature and causes of the psychological distress experienced by patients with end stage renal disease (ESRD).
In 2002, the British Renal Society (BRS) Workforce Planning Group published guidelines for the provision of psychological services to renal patients and proposed a hierarchical approach, which immediately proved helpful when considering our service development (BRS, 2002). They recommended that initial interventions should be the provision of basic emotional support at ward/team level (Level 1). After that, basic counselling support should be provided by senior specialist clinicians (Level 2); with specialist psychological support provided by psychologists, counselling psychologists and specialist counsellors at Level 3.
More recently in the UK, the National Institute for Health and Clinical Effectiveness (NICE) has published two sets of guidelines for the psychological care of patients with chronic health conditions and those admitted to hospital with acute or critical illness (CG91 and CG50). The former also proposes a stepped-care approach to psychological support as shown in Figure 1.
Figure 1. Stepped approach to psychological care. Reproduced from NICE CG91 p. 111.
Further problems include the fact that there are currently numerous NICE guidelines promoting the provision of psychological care for renal patients and those with a LTC. There is frequently an expectation that initial assessment and screening of patients - and the provision of lower intensity levels of stepped care - should be routinely provided by junior staff. However, in our experience, hospital staff may not have the time or skills to assess and intervene with distressed patients; and there is a risk that psychological needs are not met. Furthermore, it is not always possible for staff to be released from busy dialysis units and wards to attend formal training in psychological skills; and consequently, it is a challenge to devise new ways of up-skilling junior staff.
Lastly, renal teams are also subject to, and usually prioritise, current medical guidelines. And, within the renal specialty, these guidelines appear to take little account of psychological or quality of life issues; and indeed can result in further distress and reduced quality of life in renal patients. An example of this is the Renal Association Haemodialysis Guideline (BRA 12/2009), which advocates the need for haemodialysis patients to dialyse for four hours, three times a week. This appears to fly in the face of other medical guidelines, which advocate patient choice, empowerment and involvement in negotiating an individualised package of care (e.g. Academy of Medical Royal Colleges, 2008).
The barriers to be overcome included closing the gap between medical (curative) discourses of disease management and psychological/psychiatric discourse.These focus predominantly on how the renal patient is adjusting to and coping with the disease and its management. There is also a difference in emphasis in the psychological and psychiatric discourse about how best to intervene in this population. Some focus on the diagnosis of clinical disorders and advocating pharmacological and/or talking therapies (to date), have much of their evidence base in mental health services. Psychologists working with this population have started to identify and intervene in quality of life issues that may be associated with clinically sub-threshold symptomatology - yet potentially still have a significant impact on patient well-being.
Further guidelines propose that increasing patient choice and their involvement in treatment decision making is important (NHS Kidney Care, 2013). Bray (2011) suggests that solution-focused, patient-centred practice is essential for the prevention of depression and other forms of psychological distress. They argue that,
“the medical/disease model, from which much professional practice is drawn (including, for example, conventional cognitive behavioural therapy), has traditionally assumed that problems must be fully aired before progress can be made. The next step is usually some form of prescription to address the problems, whether in the form of medication or other physical treatment, advice on techniques that can change behaviour, cognition or affect, or all of these things. It may be apparent that such an approach potentially places a considerable burden on the professional who, after inviting (in the case of depression) exploration of the bleak landscape, is then in the role of the expert charged with knowing at least something about how it will go away” (p. 28).
The actual evidence base for psychological interventions in renal services (and all LTC) is sparse, as much of this work has focused on non-renal populations. There are promising results from early RCTs with CBT. But if it is the case that the majority of patients are not diagnosable as clinically anxious or depressed, this approach will be of little use (or could potentially even be harmful to them). Furthermore, routinely offering CBT to renal patients has considerable practical and resource implications in the UK as Improving Access to Psychological Therapy (IAPT) clinicians will require additional training to up-skill them in the specialist area of LTCs; or local renal services will have to employ (and possibly train) their own CBT therapists.
However, having spent five years “exploring the landscape”, it is the view of the author that a low cost and effective approach to psychological care is the answer within renal (and other LTC) services and is entirely possible with some planning and organisation.
Based on the British Psychological Society (BPS, 2007), it was decided to start to build the tiers of psychological service within the Dorset Renal Service (see Figure 2).
In terms of Level 1 services, an early attempt at a patient support group was unsuccessful as some of the patients were unable to attend due to demands of dialysis and clinic appointments. This later evolved into the Dorset Kidney Buddies befriending group with their aim of supporting each other with information and emotional support. This also proved challenging as they were required to be employed by the Trust as volunteers and to undergo Criminal Records Bureau (CRB), occupational health checks and other bureaucratic delays - that sometimes took up to a year to process. No funding was available to pay expenses and the buddies soon lost interest as their attention was also diverted by their need to manage their own conditions
Currently, the Dorset Kidney Buddies is a Facebook page, still very much in its early stages but with great potential for development as a low intensity and no cost support and befriending service. With the recent development of robust local Expert Patient programmes, it is hoped that all renal patients will be routinely offered the opportunity to attend and learn how to self-manage their condition, as well as feel more empowered and supported.
Figure 2: Renal patient pathway to psychological care at Dorset County Hospital
Nurse-led routine screening of psychological history
Patient education days have been found to be effective if offered at the right stage, and consequently these are now offered to all pre-dialysis patients. They are run by the clinical nurse specialists and include an opportunity for patients to learn about their condition and the available treatment options. These sessions also provide an opportunity for patients to meet the team and other patients
Level 2/3 Interventions
In respect to Level 2/3 services, trainee counsellors from local colleges were accepted onto year-long placements within renal (and other) services within the hospital. Again, this service involves no cost, and each trainee can give up to four hours of patient contact each week. In return, they are provided with regular training and supervision from the author. The trainees are usually mature and experienced individuals who come equipped with various life skills that have proved invaluable to the service. The trainee counsellors work primarily at Levels 2 (solution-focused) and 3 (person-centred counselling).
Solution-focused interventions are short term (1-2 sessions; face to face or via telephone) interventions in which the nature of the immediate problems are explored, and solutions are found through collaboration. Patients are empowered to implement the solutions themselves. But if this is not possible, advocacy and/or practical help is provided. This often takes the form of improving communications and reducing misunderstandings between patient and renal staff - with the aim of improving treatment concordance.
Person-centered therapy (PCT) is also known as person-centered psychotherapy, person-centered counseling, client-centered therapy and Rogerian psychotherapy (Rogers, 1951). PCT is a form of talking therapy and has the aim of providing clients with an opportunity to develop a sense of self; wherein they can realise how their attitudes, feelings and behaviour are being negatively affected, and can then make an effort to find their true positive potential. Therapists attempt to create a comfortable, non-judgmental environment by demonstrating congruence (genuineness), empathy, and unconditional positive regard toward their clients, while using a non-directive approach. This encourages clients to find their own solutions to their problems. In the UK, counsellors are not usually trained to conduct initial assessment sessions, but rather to “follow” the patient’s narrative from the start. In healthcare settings, however, we have found that it is important to fully assess and understand the impact of the disease (and its management) on the patient and family before beginning therapy.
Level 3 Intervention
Level 3 interventions are provided for patients who have been formally assessed as having mood and/or anxiety disorders and these usually take the form of CBT, clinical hypnotherapy and other integrative psychological therapies, as appropriate. Until recently, these have been provided by the author and the doctoral clinical psychology trainees,. However, the local Improving- Access-to-Psychological Therapies (IAPT) services are now becoming more equipped to offer CBT individually or in groups; and formal referral patient pathways and links are currently being developed. IAPT services can also provide counselling services. There are challenges to overcome, however, as the current screening tools, outcome measures and general accessibility of services need to be adapted to the needs of people with a long term condition (LTC). Furthermore, some renal patients have found the approach within IAPT services unhelpful due to the emphasis on the continuous assessment of risk and mental health. Further work is needed to continue to improve the local IAPT services for patients with a LTC.
Level 4 Intervention
Level 4 services take the form of an Intensive Support Register (ISR), in which patients with complex biopsychosocial needs are admitted onto the register; and receive a multidisciplinary team approach with collaborative care planning within the team (and involving outside agencies). Monthly meetings are held during which all the involved professionals share information and collaborate on care planning with the patients as necessary. Patients who have expressed a wish to discontinue treatment, and/or have been found to have co-morbid psychological/psychiatric conditions, poor prognosis or complex social needs are now routinely screened by all renal staff and admitted onto the ISR when necessary. The Holistic Assessment Tool (HAT) is a brief screen used routinely to identify any biopsychosocial difficulties that patients are currently experiencing. It is self-administered every three to six months.
The Renal Distress Thermometer is used as an alternative or additional screening tool. The Clinical Outcome in Routine Evaluation (CORE; Barkham, 2001) is a standardised measure used to determine severity of symptoms and can be also used as a pre and post intervention measure. The Intensive Support Register Screen is administered by clinicians with the patient when routine screening has shown that more significant distress is evident and may trigger admission onto the ISR. The HAT and ISR screen are based on and adapted from the pilot projects outlined in NHS Kidney Care’s “Getting it Right” document for end of life care in advanced kidney disease.
Over the past five years, the author has increasingly recognised the need to work systematically with the teams and families in renal services. This is particularly challenging as the current demand for payment-by-results and target-driven health care focuses primarily on measuring and evaluating direct patient response; and ignores the indirect, consultative role that many clinical psychologists increasingly adopt within teams (See NWW??). The ISR is a good example of this issue as quite challenging patients can heavily utilise our resources often without actual direct contact with the clinicians. The '80:20 Pareto' principle (see https://en.wikipedia.org/wiki/Pareto_principle) applies in this respect. In other words, 20% of the complex patients on ISR routinely take up 80% of clinical psychology time, whereas the 80% of patients with mild to moderate psychological problems may only require 20% of our direct input. It is quite a challenge for us to develop new methods of measuring and evaluating the efficacy of this input within teams and families.
Recent publications from the Department of Health (DoH) - eg in stroke care - advocate the economic advantages and benefits of clinical psychologists adopting a leadership role in the provision of psychological care within teams (Gilham, 2012). Many acute Trusts now have supervision policies in place encouraging nurses and allied health professionals to receive regular individual supervision sessions or reflective practice groups in the workplace; and clinical psychologists are well placed to provide this service due to our training and expertise in this area. Although the evidence base in this respect is only developing, and the evaluation of the effect on patient care is challenging, experience demonstrates that clinicians will further develop their psychological and communication skills through reflective practice. This, in turn, should reduce the number of patient complaints and potentially improve staff morale and reduce sickness rates. Future challenges include encouraging our medical colleagues to attend training and supervision events.
Since the publication of the white paper, Equity and Excellence: Liberating the NHS (2010), the government has turned its attention to the quality of care in the NHS; and the need to focus on outcomes, give power to the patients and develop power and accountability to the front line. It also recognised the need to make efficiency savings, due to the growing demand being place on the health service, and so the Quality, Innovation, Productivity and Prevention programme (QIPP), a national strategy from the Department of Health, was established to improve the quality and delivery of NHS care while reducing costs to make £20bn efficiency savings by 2014/15.
Psychological interventions have been shown to be cost effective for a number of long term health conditions including diabetes, cancer, chronic pain and medically unexplained symptoms (see Hunsley, 2002 for review). There is also support for the supposition that psychological interventions in behavioural medicine settings provide a cost benefit (by reducing overutilisation of health services), a cost utility benefit (by increasing positive health effects) and a cost offset (when a service saves money independent of health benefits; see Kaplan & Groessl, 2002). Although an essential role of psychological intervention is to improve patient’s lives, these concepts play an important role in policy decision making.
It is estimated that £1 in every £77 of NHS expenditure in England in 2009/10 was spent on CKD (Dorset CCG, 2012). In Dorset, it is estimated that the annual primary care expenditure directly attributable to CKD is £5,924,252 and the total direct cost of CKD in primary and secondary care is estimated to be £18,899,664 (Dorset Clinical Commissioning Group; CCG, 2012). There are a number of direct costs of assessing, diagnosing and treating patients with CKD, and there are also indirect costs of the disease including excess hospital stays, complications, stoke and heart problems. It is some of these indirect costs, such as excess hospitalisations in CKD, which add significant burden to the NHS (Kerr, 2012). The reasons for excess hospitalisations vary, and our experience in Dorset is that sometimes this can be due to psychological and social needs not being met, as well as non-adherence resulting in emergency admissions.
A range of clinical, sociodemographic and psychosocial factors have been found to be determinants of ESRD patient adherence behaviour (Christensen & Ehlers, 2002). Depression, perception of illness and perceived mental health are also variables which have been suggested as important mechanisms contributing to patient non-compliance (DeOreo, 1997; Kimmel, 1998; Kurtin, 1994). Having psychology embedded in the renal team, and a tiered approach to support, may reduce the costs that may be incurred if psychological issues are not addressed. According to Chiles (1999), when quality psychological care is offered in conjunction with quality medical care, patient’s psychological functioning improves and medical services are used more efficiently. The challenge in Dorset is accessing relevant data to calculate and show cost benefits, cost utility benefits and cost offsets,
Recent publications by the National Endowment for Science, Technology and the Arts (NESTA) have also focused on putting patients at the heart of healthcare through their “People Powered Health” innovation (NESTA, 2013). Broadly speaking, their key findings were:
- Care planning, pathway planning and wellbeing planning enables patients to identify their own goals and aspirations, and to navigate the services that will help to achieve them;
- The challenge is to harness collaborative working culture, spread and embed it in new settings, and including it as standard in primary care, acute services and in service governance;
- Prototyping is an approach to developing and testing ideas at an early stage before large-scale resources are committed to implementation. It is a quick way to evaluate and validate impact and manage risk;
- It is much easier to design a service than design a system. But designing a radically different service often requires redesigning the system - to provide the spaces, opportunities, capabilities and support for new services to be possible.
In these early days, this work shows promise as an exciting project. Though a culture shift may be necessary in the field (and in local CCGs) before this approach will be widely accepted and implemented.
Top Tip: Psychological distress in renal patients requires a stepped care approach from acute into community services
- Renal failure is a long-term unremitting condition, with treatment that offers health maintenance rather than cure; thus there are potential psychological and social consequences
- When patients are newly diagnosed, or go through a change of treatment modality (e.g. transplant back to dialysis), there is a process of psychological adjustment that necessarily occurs
- Psychological distress impacts upon a patient's ability to manage their condition, and can interfere with treatment adherence
- Transplantation is demanding and invasive. It requires psychological resilience, good social support, and good treatment concordance
- Mismanaging psychological distress in renal patients can result in increased costs of treatment and hospital admissions
- A stepped care approach to psychological support can help to reduce these costs
- It is advised that the appropriate services are set up to support patients from the point of diagnosis/treatment in the acute setting into community services
- The whole team is responsible for the psychological support of renal patients although referral on for specialist intervention may be required
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