Guidance

Recommendations

Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about 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

1.1.2

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on indications for starting renal replacement therapy.

Full details of the evidence and the committee's discussion are in evidence review A: initiating renal replacement therapy.

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.

For a short explanation of why the committee made this recommendation and how it might affect practice, see the rationale and impact section on preparing for renal replacement therapy or conservative management – when to assess.

Full details of the evidence and the committee's discussion are in evidence review E: when to assess for renal replacement therapy.

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on preparing for renal replacement therapy or conservative management – how to assess.

Full details of the evidence and the committee's discussion are in evidence review F: how to assess people for renal replacement therapy.

1.3 Choosing modalities of renal replacement therapy or conservative management

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:

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on choosing modalities of renal replacement therapy or conservative management.

Full details of the evidence and the committee's discussion are in evidence review B: modalities of renal replacement therapy and evidence review C: sequencing modalities of renal replacement therapy.

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on planning dialysis access formation.

Full details of the evidence and the committee's discussion are in evidence review D: when to create access formation and/or list for transplantation and evidence review F: how to assess people for renal replacement therapy.

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on indications for switching or stopping renal replacement therapy.

Full details of the evidence and the committee's discussion are in evidence review G: indicators for transferring or discontinuing renal replacement therapy.

1.6 Recognising symptoms

1.6.1

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

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

General symptoms:

  • breathlessness

  • fatigue

  • insomnia

  • itching

  • lethargy

  • pain

  • poor appetite

  • swelling

  • taste changes

  • thirst

  • weakness

  • weight loss/gain.

Gastro-intestinal/urological symptoms:

  • abdominal cramps

  • change in bowel or urinary habits

  • nausea.

Musculoskeletal symptoms:

  • muscle cramps

  • restless legs.

Neurological symptoms:

  • cognitive impairment

  • dizziness

  • headaches.

Psychological/behavioural symptoms:

  • 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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on recognising symptoms.

Full details of the evidence and the committee's discussion are in evidence review H: symptom recognition.

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on diet and fluids.

Full details of the evidence and the committee's discussion are in evidence review I: dietary management and fluid restriction.

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 box 2 for more details.

Box 2 Information about treatments and how they may affect lifestyle

Information about treatments, including RRT, conservative management and dietary intervention:

  • 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.

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on information, education and support.

Full details of the evidence and the committee's discussion are in evidence review K: information, education and support.

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.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on coordinating care.

Full details of the evidence and the committee's discussion are in evidence review M: coordinating care.