NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE

Patient/carer organisation statement (MTA)

[Insert appraisal title here]

Thank you for agreeing to give us your views on the treatment(s) being evaluated by NICE in this appraisal and how it/they could be used in the NHS. Patients, carers and patient organisations can provide a unique perspective on conditions and their treatment that is not typically available from other sources. We are interested in hearing about:

the experience of having the condition or caring for someone with the condition

the experience of receiving NHS care for the condition

the experience of having specific treatments for the condition

the outcomes of treatment that are important to patients or carers (which might differ from those measured in clinical studies, and including health-related quality of life)

the acceptability of different treatments and how they are given

expectations about the risks and benefits of the treatment(s).

To help you give your views, we have provided a questionnaire. You do not have to answer every question — the questions are there as prompts to guide you. The length of your response should not normally exceed 10 pages. If you think your response will be significantly longer than this, please contact the NICE project team to discuss.

When answering the questions from section 3 onwards, please make sure to say which treatment (s) you are commenting on.

About you and your organisation

Your name:
Name of your organisation:
Your position in the organisation:
Brief description of the organisation:

(For example: who funds the organisation? How many members does the organisation have?)

We are asking for your collective view as an organisation and will be asking patient experts for their individual input separately. If you have the condition, or care for someone with the condition, you may wish to complete a patient expert questionnaire to give your individual views as well.

Living with the condition

What is it like to live with the condition or what do carers experience when caring for someone with the condition?

Current practice in treating the condition

Which treatment outcomes are important to patients or carers? (That is, what would patients or carers like treatment to achieve?) Which of these are most important? If possible, please explain why.

What is your organisation’s experience of currently available NHS care and of specific treatments for the condition? How acceptable are these different treatments and which are preferred and why?

What do patients or carers consider to be the advantages of the treatment(s) being appraised?

Benefits of a treatment might include its effect on:

the course and/or outcome of the condition

physical symptoms

pain

level of disability

mental health

quality of life (such as lifestyle and work)

other people (for example, family, friends and employers)

ease of use (for example, tablets rather than injection)

where the treatment has to be used (for example, at home rather than in hospital)

any other issues not listed above

Please list the benefits that patients or carers expect to gain from using the treatment(s) being appraised.

Please explain any advantages described by patients or carers for the treatment(s) being appraised compared with other NHS treatments in England.

If you know of any differences in opinion between patients or carers about the benefits of the treatment(s) being appraised, please tell us about them.

What do patients and/or carers consider to be the disadvantages of the treatment(s) being appraised?

Disadvantages of a treatment might include:

aspects of the condition that the treatment cannot help with or might make worse

difficulties in taking or using the treatment (for example, injection rather than tablets)

side effects (for example, type or number of problems, how often, for how long, how severe. Please describe which side effects patients might be willing to accept or tolerate and which would be difficult to accept or tolerate)

where the treatment has to be used (for example, in hospital rather than at home)

impact on others (for example, family, friends and employers)

financial impact on the patient and/or their family (for example, the cost of travel to hospital or paying a carer)

any other issues not listed above

Please list any concerns patients or carers have about current NHS treatments in England.

Please list any concerns patients or carers have about the treatment(s) being appraised.

If you know of any differences in opinion between patients or carers about the disadvantages of the treatment(s) being appraised, please tell us about them.

Patient population

Are there any groups of patients who might benefit more from the treatment(s) than others? If so, please describe them and explain why.

Are there any groups of patients who might benefit less from the treatment(s) than others? If so, please describe them and explain why.

Research evidence on patient or carer views of the treatment

Is your organisation familiar with the published research literature for the treatment(s)?

☐	Yes	☐	No

If you answered ‘no’, please skip the rest of section 7 and move on to section 8.

Please comment on whether patients’ experience of using the treatment(s) as part of their routine NHS care reflects the experiences of patients in the clinical trials.

Do you think the clinical trials have captured outcomes that are important to patients? Are you aware of any limitations in the assessment of the treatment(s) in clinical trials?

If already available in the NHS, are there any side effects associated with treatment(s) being appraised that were not apparent in the clinical trials but have emerged during routine NHS care?

Are you aware of any relevant research on patient or carer views of the condition or existing treatments (for example, qualitative studies, surveys and polls)?

☐	Yes	☐	No

If yes, please provide references to the relevant studies.

Equality

NICE is committed to promoting equality of opportunity, eliminating unlawful discrimination and fostering good relations between people with particular protected characteristics and others. Protected characteristics are: age; being or becoming a transsexual person; being married or in a civil partnership; being pregnant or having a child; disability; race including colour, nationality, ethnic or national origin; religion, belief or lack of religion/belief; sex; sexual orientation.

Please let us know if you think that recommendations from this appraisal could have an adverse impact on any particular groups of people, such as:

excluding from full consideration any people protected by the equality legislation who fall within the patient population for which the treatment is/will be licensed;

having a different impact on people protected by the equality legislation than on the wider population, e.g. by making it more difficult in practice for a specific group to access the treatment;

any adverse impact on people with a particular disability or disabilities.

Please let us know if you think that there are any potential equality issues that should be considered in this appraisal.

Are there groups of patients who would have difficulties using the treatment(s) being appraised or currently available treatments? Please tell us what evidence you think would help the Committee to identify and consider such impacts.

Other issues

Do you consider the treatment(s) being appraised to be innovative?

☐	Yes	☐	No

If yes, please explain what makes it significantly different from other treatments for the condition. (If this applies to more than one treatment that is being appraised, please give reasons for each one.)

Are there any other issues that you would like the Appraisal Committee to consider?

Key messages

In no more than 5 bullet points, please summarise the key messages of your submission.