Table 1 RIGHT for PVG checklist

 1. Title/cover/copyright

1.1 Identify the document as a guideline version for patients and the public.

Example

Health services for people with sarcoma: Understanding NICE guidance—information for the public [15]

Parent Information Queensland Clinical Guidelines: Breastfeeding your baby [16]

1.2 Specify the topic (e.g., condition, technique, or medication) addressed in the PVG.

Example

Health services for people with sarcoma: Understanding NICE guidance—information for the public [15]

1.3 Specify the publication year and the version (if applicable) (e.g., first version, second version) of the PVG in the title, cover page, or copyright statement.

Examples

Kidney Cancer-NCCN Guidelines for Patients® Version 1.2015 [17]

 2. Contact information

2.1 Provide contact information of the developers of the PVG (e.g., affiliations, website, or address, phone number, or email address).

Example

You can read more about us by visiting www.sign.ac.uk or you can phone 0131 623 4720 and ask for a copy of our booklet “SIGN guidelines: information for patients, carers and the public.” [18]

 3. Summary

3.1 Provide a summary of the PVG, including the main recommendations.

Example [19]

Key points

• Breast cancer is rare in pregnancy.

• Most women who become pregnant after treatment for breast cancer have healthy pregnancies and healthy babies.

• If you have breast cancer, you will be looked after by a specialist team who will discuss your treatment options with you.

• If you are diagnosed with breast cancer while you are pregnant, your treatment will usually begin straight away. Neither the medications used nor surgery will harm your baby. You may have further treatment after your baby is born.

• If you hope to have a baby in the future, your treatment plan can take your wishes into account.

• It is usually safe to breastfeed after breast cancer, although surgery and radiotherapy may make it difficult.

• If you have had treatment for breast cancer, you may be advised to wait for 2 years before becoming pregnant.

 4. Introduction of the target topic

4.1 Introduce the target condition, including (as relevant) the definition, risk factors, signs, subtypes, complications, staging (progress), and epidemiology.

Example [17]

Part 1 Kidney cancer basics. What are the kidneys? How does kidney cancer start? How does kidney cancer spread? Review

4.2 Introduce the management, preventive, diagnostic, and other options.

Examples

1) Why is breastfeeding important? [16]

2) What are behavioral and pharmacotherapy interventions? [20]

 5. Purpose, scope, and target users

5.1 Describe the scope, purpose, intended use, and users of the PVG.

Example [17]

How to use this book: Who should read this book?

This book is about treatment for renal cell carcinoma—the most common type of kidney cancer in adults. It does not discuss transitional cell carcinoma, Wilms tumor, or renal sarcoma. Patients and those who support them—caregivers, family, and friends—may find this book helpful. The information in this book may help you talk with your treatment team, understand what doctors say, and prepare for treatment

Does the whole book apply to me?

The recommendations in this book are based on science and the experience of NCCN experts. However, each patient is unique and these specific recommendations may not be right for you. Your doctors may suggest other tests or treatments based on your health and other factors. This book does not replace the knowledge and suggestions of your doctors.

 6. Link to the source guideline

6.1 Provide a reference or link to the source guideline of the PVG, where the methods of the source guideline (e.g., the evidence review and recommendation development process) can be found.

Examples

1) If you would like to see the clinical guideline, please visit www.sign.ac.uk [18].

2) The medical information described in this document is based on the clinical practice guidelines of the European Society for Medical Oncology (ESMO) for the management of stomach cancer.

It has been written by a medical doctor and reviewed by two oncologists from ESMO including the lead author of the clinical practice guidelines for professionals. It has also been reviewed by patients’ representatives from ESMO’s Cancer Patient Working Group [21].

 7. Recommendations

7.1 Include for each recommendation: (a) the target populations or conditions; (b) the recommended treatment or management option (e.g., prevention plan, diagnostic strategy, or rehabilitation); (c) potential benefits and harms, especially those that are patients important; and (d) the specific settings where the options are recommended to be implemented

Examples

1) What can I do to help myself? How often should I have my eyes checked? [18]

If eye tests have shown that you have increased eye pressure, you should have your eyes checked every 2 years to make sure there is no glaucoma (strong recommendation)

If you have a close relative (e.g., brother, sister, mother or father) who has glaucoma, you should have a review every 2 years. If you also have other risk factors (outlined on page 8), you should have your eyes checked for signs of glaucoma every year (recommendation).

Should I have a patient-held record?

There is not enough research evidence to tell us if a patient-held record (a patient’s personal copy of their glaucoma medical records) is of benefit to patients who have or are at risk of glaucoma. Some people may find having one helpful, but other people may not (not enough research evidence to tell us if something is of benefit).

2) Key recommendations: Prompt referral for expert diagnosis is crucial [15]

7.2 Describe what options, if any, are available to deal with undesirable outcomes.

Example [21]

What happens after treatment?

It is not unusual to experience treatment-related symptoms once the treatment is over.

● It is not rare that anxiety, sleeping problems, or depression are experienced in the post-treatment phase. Patients who experience these symptoms may benefit from psychological support.

● Memory deficiencies and difficulties in concentrating are common side effects of chemotherapy* and are generally reversible within a few months.

● Fatigue can last for months after treatment. Most patients find their energy levels are back to normal within 6 months to a year.

After gastrectomy, the patient has to develop new eating habits. A nutritionist* can help patients adjust to this. Due to the removal of the upper part of the stomach, the body will absorb less vitamin B12 from food. Regular blood tests are advised, and often substitution with vitamin B12 injections is necessary. It is common to have diarrhea for some months after stomach surgery. Some patients also suffer from heartburn and abdominal pain.

Removal of the spleen may lead to a reduced immunity. Therefore, the patient will receive several vaccinations, before and after the removal of the spleen and antibiotics to take every day. It is also important to be aware that any infection carries a greater risk and should be a reason to see a doctor and sometimes start taking antibiotics.

7.3 Describe the self-management options, if any are reported in the source guideline.

Example [18]

What can I do to help myself?

Have your eyes tested regularly

Glaucoma is often picked up by a routine eye test so you should have your eyes checked regularly. When you have an eye test, your optometrist will check your sight and will look for signs of eye disease such as glaucoma. You should have the routine tests described on page 13. The cost of an eye test is covered by the NHS so it is FREE when you have it.

 8. The strength of the recommendations and certainty of the evidence

8.1 Provide a clear and simple explanation of the meaning of terms related to the strength of recommendations and quality of the evidence (e.g., by using commonly understood symbols).

Examples [18, 20]

1) Use to express strong recommendation, use to represent recommendation, and use to say not enough evidence (see page 3 in reference [18]).

2) Use Grade A, B, C, D, I statement to stand for recommended, recommended, recommendation depends on the patient’s situation, not recommended, and not enough evidence to make a recommendation (see page 4 in reference [20]).

 9. Questions to ask

9.1 Suggest a list of questions for patients to ask their healthcare providers if relevant.

Example [17]

Questions to ask your doctors

Questions about testing

1) What tests will I have? How often will I be tested?

2) Where will the tests take place? Will I have to go to the hospital?

3) How long will it take? Will I be awake?

4) Will it hurt? Will I need anesthesia?

5) What are the risks? What are the chances of infection or bleeding afterward?

6) How do I prepare for testing? Should I not take aspirin? Should I not eat beforehand?

 10. Terms and abbreviations

10.1 Provide a list of terms and abbreviations used in the PVG.

Example [22]

Part 11: Dictionary

Ablation: Removal of diseased or unwanted tissue by surgery or other means.

Add-back therapy: Hormonal therapy to minimize side effects of medications that suppress estrogen (such as leuprolide acetate); add-back therapy usually decreases hot flashes and also helps prevent bone loss.

 11. Funding

11.1 Describe the funding source(s) of the PVG and of the source guideline and their roles or any influences, in the PVG or guideline development processes, respectively.

Example

Supported by NCCN Foundation [15]

The NCCN Foundation supports the mission of the National Comprehensive Cancer Network® (NCCN®) to improve the care of patients with cancer. One of its aims is to raise funds to create a library of books for patients. Learn more about the NCCN Foundation at NCCN.org/foundation.

Funding: The consensus meeting in Zürich was financially supported by EULAR. There are no other financial disclosures. The sponsors had no role in voting, or in developing the final document [23].

 12. Conflicts of interest

12.1 Report the conflicts of interests of contributors to the PVG and the source guideline in a format that the patients and the public can understand, and how they were managed.

Example

Competing interests: None [23].