Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 Indications for starting dialysis

1.1.1 Follow the recommendations on referral criteria in NICE's guideline on chronic kidney disease in adults.

1.1.2 Consider starting dialysis when indicated by the impact of symptoms of uraemia on daily living, or biochemical measures or uncontrollable fluid overload, or at an estimated glomerular filtration rate (eGFR) of around 5 to 7 ml/min/1.73 m2 if there are no symptoms.

1.1.3 Ensure the decision to start dialysis is made jointly by the person (or, where appropriate, their family members or carers) and their healthcare team.

1.1.4 Before starting dialysis in response to symptoms, be aware that some symptoms may be caused by non-renal conditions.

To find out why the committee made the recommendations on indications for starting renal replacement therapy and how they might affect practice, see rationale and impact.

1.2 Preparing for renal replacement therapy or conservative management

When to assess

1.2.1 Start assessment for renal replacement therapy (RRT) or conservative management at least 1 year before therapy is likely to be needed, including for those with a failing transplant.

To find out why the committee made the recommendation on preparing for renal replacement therapy or conservative management – when to assess and how they might affect practice, see rationale and impact.

How to assess

1.2.2 Involve the person and their family members or carers (as appropriate) in shared decision-making over the course of assessment to include:

  • clinical preparation

  • psychosocial evaluation, preparation and support

  • the person's individual preferences for type of RRT and when to start

  • how decisions are likely to affect daily life.

1.2.3 Consider further assessment by a clinical psychologist or psychiatrist for:

  • all children and young people being considered for a transplant, and

  • adults being considered for a transplant if risk factors for poor outcomes have been identified; these may include:

    • lack of social support

    • neurocognitive issues

    • non-adherence (medicines, diet, hospital appointments)

    • poor understanding of process and complexities of treatment

    • poorly controlled mental health conditions or severe mental illness

    • substance misuse or dependence.

To find out why the committee made the recommendations on preparing for renal replacement therapy or conservative management – how to assess and how they might affect practice, see rationale and impact.

1.3 Choosing modalities of renal replacement therapy or conservative management

1.3.1 Offer a choice of RRT or conservative management to people who are likely to need RRT[1].

1.3.2 Ensure that decisions about RRT modalities or conservative management are made jointly with the person (or with their family members or carers for children or adults lacking capacity) and healthcare team, taking into account:

  • predicted quality of life

  • predicted life expectancy

  • the person's preferences (see recommendations in section 1.8)

  • other factors such as co-existing conditions.

1.3.3 Offer people (and their family members or carers, as appropriate) regular opportunities:

  • to review the decision regarding RRT modalities or conservative management

  • to discuss any concerns or changes in their preferences.

Transplantation

1.3.4 Discuss the individual factors that affect the risks and benefits of transplantation with all people who are likely to need RRT, and their family members or carers (as appropriate).

1.3.5 Include living donor transplantation in the full informed discussion of options for RRT.

1.3.6 Offer a pre-emptive living donor transplant (when there is a suitable living donor) or pre-emptive listing for deceased donor transplantation to people considered eligible after a full assessment.

1.3.7 Do not exclude people from receiving a kidney transplant based on BMI alone.

Choice of dialysis modalities

1.3.8 Offer a choice of dialysis modalities at home or in centre ensuring that the decision is informed by clinical considerations and patient preferences (see recommendation 1.3.2).

1.3.9 Offer all people who choose peritoneal dialysis a choice of continuous ambulatory peritoneal dialysis (CAPD) or automated peritoneal dialysis (APD), if this is medically appropriate.

1.3.10 Consider peritoneal dialysis as the first choice for children 2 years or under.

1.3.11 For people who choose haemodialysis/haemodiafiltration (HD/HDF):

  • Consider HDF rather than HD if in centre (hospital or satellite unit).

  • Consider HDF or HD at home, taking into account the suitability of the space and facilities.

To find out why the committee made the recommendations on choosing modalities of renal replacement therapy or conservative management and how they might affect practice, see rationale and impact.

1.4 Planning dialysis access formation

1.4.1 Discuss with the person, their family members and carers (as appropriate) the risk and benefits of the different types of dialysis access, for example, fistula, graft, central venous or peritoneal dialysis catheter.

1.4.2 When peritoneal dialysis is planned via a catheter placed by an open surgical technique, aim to create the access around 2 weeks before the anticipated start of dialysis.

1.4.3 When HDF or HD is planned via an arteriovenous fistula, aim to create the fistula around 6 months before the anticipated start of dialysis to allow for maturation. When deciding on timing, take into account the possibility of the first fistula failing or needing further interventions before use.

1.4.4 Offer ultrasound scanning to determine vascular access sites for creating arteriovenous fistulae for HDF or HD.

To find out why the committee made the recommendations on planning dialysis access formation and how they might affect practice, see rationale and impact.

1.5 Indications for switching or stopping renal replacement therapy

1.5.1 Offer information on all medically appropriate treatment options when discussing switching RRT modality.

1.5.2 Consider switching treatment modality or stopping RRT if medically indicated or if the person (or, where appropriate, their family members or carers) asks.

1.5.3 Plan switching treatment modality or stopping RRT in advance wherever possible.

1.5.4 Do not routinely switch people on peritoneal dialysis to a different treatment modality in anticipation of potential future complications such as encapsulating peritoneal sclerosis. However, monitor risk factors, such as loss of ultrafiltration.

1.5.5 Seek specialist advice on the need for switching treatment modality when women become pregnant or wish to become pregnant.

To find out why the committee made the recommendations on indications for switching or stopping renal replacement therapy and how they might affect practice, see rationale and impact.

1.6 Recognising symptoms

1.6.1 Recognise that people on RRT or receiving conservative management may have the symptoms in table 1 and that these may affect their day-to-day life.

Table 1 Possible symptoms in people on renal replacement therapy or conservative management

Category

Symptom

General

Breathlessness

Fatigue

Insomnia

Itching

Lethargy

Pain

Poor appetite

Swelling

Taste changes

Thirst

Weakness

Weight loss/gain

Gastro-intestinal/urological

Abdominal cramps

Change in bowel or urinary habits

Nausea

Musculoskeletal

Muscle cramps

Restless legs

Neurological

Cognitive impairment

Dizziness

Headaches

Psychological/behavioural

Anxiety

Body image concerns

Depression

Mood disturbances/fluctuations

Sexual dysfunction

1.6.2 Throughout the course of RRT and conservative management:

  • Ask people about any symptoms they have.

  • Explore whether symptoms are due to the renal condition, treatment or another cause.

  • Explain the likely cause of the symptoms and how well treatment may be expected to control them.

To find out why the committee made the recommendations on recognising symptoms and how they might affect practice, see rationale and impact.

1.7 Diet and fluids

1.7.1 Offer a full dietary assessment by a specialist renal dietitian to people starting dialysis or conservative management. This should include:

  • weight history

  • fluid intake

  • sodium

  • potassium

  • phosphate

  • protein

  • calories

  • micronutrients (vitamin and minerals).

1.7.2 After transplantation, offer dietary advice from a healthcare professional with training and skills in this area.

1.7.3 Re-assess dietary management and fluid allowance when:

  • a person's circumstances change (for example, when switching RRT modality), or

  • biochemical measures or body composition measures (for example, unintentional weight loss) indicate, or

  • the person (or, where appropriate, their family members or carers) asks.

1.7.4 Provide individualised information, advice and ongoing support on dietary management and fluid allowance to the person and their family members or carers (as appropriate). The information should be in an accessible format and be sensitive to the person's cultural needs and beliefs.

1.7.5 Follow the recommendations on dietary management and phosphate binders in NICE's guideline on chronic kidney disease (stage 4 or 5): management of hyperphosphataemia.

To find out why the committee made the recommendations on diet and fluids and how they might affect practice, see rationale and impact.

1.8 Information, education and support

1.8.1 To enable people, and their families and carers (as appropriate), to make informed decisions, offer balanced and accurate information about:

  • all treatments available to them (including RRT modalities and conservative management), and

  • how the treatments may affect their lives.

    See table 2 for more details.

Table 2 Information about treatments and how they may affect lifestyle

Information about treatments*

What they involve, for example, availability of assistance, time that treatment takes place, and number of sessions per day/week

Potential benefits

The benefits of adherence to treatment regimens and the potential consequences of non-adherence

Potential adverse effects, their severity and how they may be managed

The likely prognosis on dialysis, after transplant or with conservative management

The transplant listing process (when appropriate)

Switching the modality of RRT and the possible consequences (that is, the impact on the person's life or how this may affect future treatment or outcomes)

Reviewing treatment decisions

Stopping treatment and planning end of life care

Information about how treatments may affect lifestyle

The person or carer's ability to carry out and adjust the treatment themselves

The possible impact of dietary management and management of fluid allowance

How treatment may fit in with daily activities such as work, school, hobbies, family commitments and travel for work or leisure

How treatment may affect sexual function, fertility and family planning

Opportunities to maintain social interaction

How treatment may affect body image

How treatment may affect physical activity (for example, whether contact sports should be avoided after transplantation, whether swimming should be avoided with peritoneal dialysis)

Whether a person's home will need to be modified to accommodate treatment

How much time and travel treatment or training will involve

The availability of transport

The flexibility of the treatment regimen

Whether any additional support or services might be needed

* Treatments include RRT, conservative management and dietary intervention.

1.8.2 Recognise the psychological impact of a person being offered RRT or conservative management and discuss what psychological support may be available to help with decision-making.

1.8.3 Discuss with people which treatment options are available to them and explain why any options may be inappropriate or not advised.

1.8.4 Offer oral and written information and support early enough to allow time for people to fully understand their treatment options and make informed decisions. Information should be in an accessible format.

1.8.5 Direct people to other sources of information and support (for example, online resources, pre-dialysis classes and peer support).

1.8.6 Remember that some decisions must be made months before RRT is needed (for example, a fistula is created at least 6 months before starting dialysis).

1.8.7 Be prepared to discuss the information provided both before and after decisions are made, in line with the person's wishes.

1.8.8 Take into account information the person has obtained from other sources (such as family members and carers) and how this information has influenced their decision.

1.8.9 Ensure that healthcare professionals offering information have specialist knowledge about late stage chronic kidney disease and the skills to support shared decision-making (for example, presenting information in a form suitable for developmental stage).

1.8.10 Offer people who have presented late, or who started dialysis in an unplanned way, the same information as people who present at an earlier stage.

1.8.11 Follow the recommendations on enabling patients to actively participate in their care in NICE's guideline on patient experience in adult NHS services and on information and education in NICE's guideline on chronic kidney disease in adults.

To find out why the committee made the recommendations on information, education and support and how they might affect practice, see rationale and impact.

1.9 Coordinating care

1.9.1 Provide the person with the contact details of the healthcare professional responsible for their overall renal care:

  • before they start RRT or conservative management, and

  • when they switch from one modality to another.

1.9.2 Coordinate care to reduce its effect on day-to-day life and wellbeing (treatment burden). For example, take account of people's preferences and avoid scheduling appointments on non-dialysis days for people on hospital dialysis wherever possible.

1.9.3 Follow the recommendations on:

  • delivering an approach to care that takes account of multimorbidity in NICE's guideline on multimorbidity, and

  • continuity of care and relationships, and enabling patients to actively participate in their care in NICE's guideline on patient experience in adult NHS services.

To find out why the committee made the recommendations on coordinating care and how they might affect services, see rationale and impact.



[1] Conservative management for children should only be considered within appropriate regulatory frameworks. See NICE's guideline on end of life care for children and young people with life-limiting conditions.

  • National Institute for Health and Care Excellence (NICE)