Next Steps After

Your Diagnosis:

Finding Information

and Support
The mission of the Agency for Healthcare Research and Quality (AHRQ) is

to improve the quality, safety, efficiency, and effectiveness of health care for all

Americans. The Agency works to ensure that its research findings are put

into practice—that is, that doctors and other clinicians use the scientific

evidence to make health care the best it can be.

AHRQ also helps consumers to become better informed and participate as

partners in their own health care—and get safer, higher quality care. See

inside back cover for a list of AHRQ’s consumer publications.

Take charge: Be an active health care consumer.
Table of Contents

Introduction.....................................................................................................

Step 1: Take the time you need........................................................................

Step 2: Get the support you need. ...................................................................

Step 3: Talk with your doctor...........................................................................

Step 4: Seek out information............................................................................

Step 5: Decide on a treatment plan. .................................................................

Where to find more information ......................................................................

For easy access to the Web sites and links referenced in this document,

refer to the on-line version at www.ahrq.gov/consumer/diaginfo.htm

i

This booklet includes selected organizations and other resources that

provide information and support to people with a wide range of diseases

and disorders. The listings are not intended to be comprehensive. Nor

does inclusion of any particular resource, outside of those sponsored by

the Federal Government, imply endorsement by AHRQ or the

Department of Health and Human Services. AHRQ advises that no

information from any resource in this booklet should take the place of

medical advice from your doctor.

Introduction

Your doctor* gave you a diagnosis that could change your life. This booklet

can help you take the next steps.

Every person is different, of course, and every person’s disease or condition

will affect them differently. But research shows that after getting a diagnosis,

many people have some of the same reactions and needs.

About this Booklet

Next Steps After Your Diagnosis offers general advice for people with almost any

disease or condition. And it has tips to help you learn more about your

specific problem and how it can be treated. 

The information in this booklet is presented in a simple way to help you scan

the material and read only what you need right now. Organizations,

publications, and other resources are included if you would like to know

more. The on-line version www.ahrq.gov/consumer/diaginfo.htm has many

additional resources and their Internet links. 

Five Basic Steps

This booklet describes five basic steps to help you cope with your diagnosis,

make decisions, and get on with your life.

Step 1: Take the time you need.

Do not rush important decisions about your health. In most cases, you

will have time to carefully examine your options and decide what is best

for you.

Step 2: Get the support you need. 

Look for support from family and friends, people who are going through

the same thing you are, and those who have “been there.” They can help

you cope with your situation and make informed decisions.

1

* Your medical care might come from a doctor, nurse, physician assistant,

or another kind of clinician or health care practitioner. To keep it simple,

in this booklet we use the term “doctor” to refer to any of these

professionals with whom you might interact. 
Step 3: Talk with your doctor. 

Good communication with your doctor can help you feel more satisfied

with the care you receive. Research shows it can even have a positive

effect on things such as symptoms and pain. Getting a “second opinion”

may help you feel more confident about your care. 

Step 4: Seek out information.

When learning about your health problem and its treatment, look for

information that is based on a careful review of the latest scientific findings

published in medical journals. 

Step 5: Decide on a treatment plan. 

Work with your doctor to decide on a treatment plan that best meets your

needs.

As you take each step, remember this: Research shows that patients who are

more involved in their health care tend to get better results and be more

satisfied.

2

Although most of the published research referred to in this publication

focuses on cancer, it likely is relevant to people with other diseases and

conditions as well.
Step 1:

Take the time you need.

3

A diagnosis can change your life in an instant.

Like so many other people in your situation, you might be feeling one or

more of the following emotions after getting your diagnosis:

Take time to breathe.

Don’t panic, and don’t

feel pressured into making

a rush decision.

Alexis, cancer survivor

• Afraid

• Alone

• Angry

• Anxious

• Ashamed

• Confused

• Depressed

• Helpless

• In denial

• Numb

• Overwhelmed

• Panicky

• Powerless

• Relieved (that you finally 

know what’s wrong)

• Sad

• Shocked

• Stressed

It is perfectly normal to have these feelings. It is also normal, and very

common, to have trouble taking in and understanding information after you

receive the news – especially if the diagnosis was a surprise. And it can be

even harder to make decisions about treating or managing your disease or

condition.
Take time to make your decisions.

No matter how the news of your diagnosis has affected you, do not rush into

a decision. In most cases, you do not need to take action right away. Ask

your doctor how much time you can safely take. 

Taking the time you need to make decisions can help you:

• Feel less anxious and stressed.

• Avoid depression.

• Cope with your condition. 

• Feel more in control of your situation.

• Play a key role in decisions about your treatment. 

4
Step 2:

Get the support you need.

You do not have to go through it alone.

Sometimes the emotional side of illness can be just as hard to deal with as the

physical side. You may have fears or concerns. You may feel overwhelmed.

No matter what your situation, having other people to turn to will help you

know you are not alone. 

Here are the kinds of support you might want to seek: 

Family and friends.

Talking to family and friends you feel close to can help you cope with your

illness or condition. Just knowing that someone is there can be a comfort.

Sometimes it is hard to ask for help. And sometimes your family and friends

want to help, but they do not want to intrude, or they do not know how to

ask or what to offer. Think about specific ways people can help you. One

idea is to ask someone to come with you to a doctor’s appointment to help

ask questions, take notes, and talk with you afterward. 

If you do not have family or friends who can provide support, other

people or groups can.

5

I was shocked when I was

diagnosed with diabetes.

The extra support I got

from my friends and

support group really helped

me adjust to the new

lifestyle I had to adopt.

Richard, person with 

diabetes
Support or self-help groups.

Support groups are made up of people with the same disease or condition

who get together to share information and concerns and to help one another.

Support groups may or may not be led by experts. Self-help groups are

similar to support groups but usually are led by the participants. The names

“support group” and “self-help group” sometimes are used to refer to either

kind.

Research on support groups shows that participants feel less anxious,

experience less depression, have a better quality of life, and have more success

coping with their disease or condition. Similar findings have been reported

for self-help groups.

On-line support or self-help groups.

The Internet has support or self-help groups for people whose concerns and

situations may be similar to yours. You can also find “message boards,”

where you can post questions and get answers. These on-line communities

can help you connect with people who can give you support and provide

information.

But be careful. Not every idea or treatment you come across in these groups

will be scientifically proven to be safe and effective. If you read about

something interesting and new, check it out with your doctor.

Counselor or therapist.

A good counselor or therapist can help you cope with sadness, depression,

and feelings of being overwhelmed. If you think this kind of help might be

right for you, ask your doctor or other health care professional to recommend

someone in your area. 

People like you.

You might want to meet and talk with someone in your own situation.

Someone who has “been there” can talk about the real-life outcomes of their

treatment choices as well as how they have learned to live with their disease or

condition. Some advocacy or support groups can help you make this kind of

contact.

6
Help is available.

Take advantage of the support that is available to you. See “Where to Find

More Information” on page 20 for specific places to find support. An

expanded list appears in the on-line version of this booklet at

www.ahrq.gov/consumer/diaginfo.htm.

7

If only I had known what

it would be like to live

with the after-effects of

this type of surgery, I

might have chosen a

different kind.

Susan, who underwent 

surgery for a digestive 

disease

Step 3:

Talk with your doctor.

Your doctor is your partner in health care.

You probably have many questions about your disease or condition. The first

person to ask is your doctor. 

It is fine to seek more information from other sources; in fact, it is important

to do so. But consider your doctor your partner in health care—someone

who can discuss your situation with you, explain your options, and help you

make decisions that are right for you.

It is not always easy to feel comfortable around doctors. But research has

shown that good communication with your doctor can actually be good for

your health. It can help you to:

• Feel more satisfied with the care you receive. 

• Have better outcomes (end results), such as reduced pain and better

recovery from symptoms.

Being an active member of your health care team also helps to reduce your

chances of medical mistakes, and it helps you get high-quality care.

Of course, good communication is a two-way street. Here are some ways to

help make the most of the time you spend with your doctor.

9

I had trouble understanding what my doctor

was telling me. The words

were too technical, and there

was too much to absorb. I

finally asked her to slow

down and keep it simple.

That helped a lot.

Dana, person with 

heart disease 
Prepare for your visit. 

• Think about what you want to get out of your appointment. Write down

all your questions and concerns. Some suggested questions are listed on

page 12. 

• Prepare and bring to your doctor visit a list of all the medicines you take.

• Consider bringing along a trusted relative or friend. This person can help

ask questions, take notes, and help you remember and understand

everything once you leave the doctor’s office.

Give information to your doctor. 

• Do not wait to be asked. 

• Tell your doctor everything he or she needs to know about your health—

even the things that might make you feel embarrassed or uncomfortable.

• Tell your doctor how you are feeling—both physically and emotionally.

• Tell your doctor if you are feeling depressed or overwhelmed.

Get information from your doctor. 

• Ask questions about anything that concerns you. Keep asking until you

understand the answers. If you do not, your doctor may think you

understand everything that is said.

• Ask your doctor to draw pictures if that will help you understand

something.

• Take notes.

• Tape record your doctor visit, if that will be helpful to you. But first ask

your doctor if this is okay.

• Ask your doctor to recommend resources such as Web sites, booklets, or

tapes with more information about your disease or condition. 

Also see “Ten Important Questions to Ask Your Doctor After a Diagnosis,”

on page 12.

10
Do not hesitate to seek a second opinion.

A second opinion is when another doctor examines your medical records and

gives his or her views about your condition and how it should be treated.

You might want a second opinion to: 

• Be clear about what you have.

• Know all of your treatment choices.

• Have another doctor look at your choices with you. 

It is not pushy or rude to want a second opinion. Most doctors will

understand that you need more information before making important

decisions about your health. 

Check to see whether your health plan covers a second opinion. In some

cases, health plans require second opinions.

Here are some ways to find a doctor for a second opinion: 

• Ask your doctor. Request someone who does not work in the same office,

because doctors who work together tend to share similar views.

• Contact your health plan or your local hospital, medical society, or medical

school.

• Use the Doctor Finder on-line service of the American Medical

Association at www.ama-assn.org.

Get information about next steps.

• Get the results of any tests or procedures. Discuss the meaning of these

results with your doctor.

• Make sure you understand what will happen if you need surgery.

• Talk with your doctor about which hospital is best for your health care

needs.

Finally, if you are not satisfied with your doctor, you can do two things: 

(1) talk with your doctor and try to work things out, and/or (2) switch

doctors, if you are able to. It is very important to feel confident about your

care.

To learn more, see “Where to Find More Information” on page 20. The online version of this booklet includes additional resources.

11
12

Ten Important Questions to Ask Your Doctor After a Diagnosis

These 10 basic questions can help you understand your disease or

condition, how it might be treated, and what you need to know and do

before making treatment decisions.

1. What is the technical name of my disease or condition, and what 

does it mean in plain English?

___________________________________________________________

2. What is my prognosis (outlook for the future)?

___________________________________________________________

3. How soon do I need to make a decision about treatment?

___________________________________________________________

4. Will I need any additional tests, and if so what kind and when?

___________________________________________________________

5. What are my treatment options?

___________________________________________________________

6. What are the pros and cons of my treatment options?

___________________________________________________________

7. Is there a clinical trial (research study) that is right for me?

(See page 13.)

___________________________________________________________

8. Now that I have this diagnosis, what changes will I need to make 

in my daily life?

___________________________________________________________

9. What organizations do you recommend for support and 

information?

___________________________________________________________

10. What resources (booklets, Web sites, audiotapes, videos, DVDs, 

etc.) do you recommend for further information?

___________________________________________________________
Step 4:

Seek out information.

Now that you know your treatment options, you can learn which ones are

backed up by the best scientific evidence. “Evidence-based” information—

that is, information that is based on a careful review of the latest scientific

findings in medical journals—can help you make decisions about the best

possible treatments for you.

Evidence-based information comes from research on people like

you.

Evidence-based information about treatments generally comes from two

major types of scientific studies:

• Clinical trials are research studies on human volunteers to test new

drugs or other treatments. Participants are randomly assigned to

different treatment groups. Some get the research treatment, and

others get a standard treatment or may be given a placebo (a medicine

that has no effect), or no treatment. The results are compared to learn

whether the new treatment is safe and effective.

• Outcomes research looks at the impact of treatments and other health

care on health outcomes (end results) for patients and populations.

End results include effects that people care about, such as changes in

their quality of life.

13

I’m really glad I took the

time to research my options.

It stopped me from

jumping into a treatment

that would have been

completely wrong for me.

Seth, prostate cancer 

survivor
Take advantage of the evidence-based information that is

available. 

Health information is everywhere—in books, newspapers, and magazines, and

on the Internet, television, and radio. However, not all information is good

information. Your best bets for sources of evidence-based information

include the Federal Government, national nonprofit organizations, medical

specialty groups, medical schools, and university medical centers. 

Some resources are listed below, grouped by type of information. See

“Where to Find More Information” on page 20 for additional ideas. The online version of Next Steps After Your Diagnosis lists many more, and includes

links to Internet sites.

Information.

Information about your disease or condition and its treatment is available

from many sources. Here are some of the most reliable:

• healthfinder®: www.healthfinder.gov/organizations/OrgListing.asp

The healthfinder® site—sponsored by the U.S. Department of Health and

Human Services—offers carefully selected health information Web sites

from government agencies, clearinghouses, nonprofit groups, and

universities.

• Health Information Resource Database:

www.health.gov/nhic/#Referrals

Sponsored by the National Health Information Center, this database

includes 1,400 organizations and government offices that provide health

information upon request. Information is also available over the telephone

at 800-336-4797.

• MEDLINEplus®: www.nlm.nih.gov/medlineplus

MedlinePlus® has extensive information from the National Institutes of

Health and other trusted sources on over 650 diseases and conditions.

The site includes many additional features.

• National nonprofit groups such as the American Heart Association,

American Cancer Society, and American Diabetes Association can be

valuable sources of reliable information. Many have chapters nationwide.

Check your phone book for a local chapter in your community. The

Health Information Resource Database (www.health.gov/nhic/#Referrals)

can help you find national offices of nonprofit groups. 

14
• Health or medical libraries run by government, hospitals, professional

groups, and other reliable organizations often welcome consumers. For a

list of libraries in your area, go to the MedlinePlus® “Find a Library” page

at http://www.nlm.nih.gov/medlineplus/libraries.html.

Current medical research.

You can find the latest medical research in medical journals at your local

health or medical library, and in some cases, on the Internet. Here are two

major online sources of medical articles:

• MEDLINE/PubMed®: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

PubMed® is the National Library of Medicine's database of references to

more than 14 million articles published in 4,800 medical and scientific

journals. All of the listings have information to help you find the articles

at a health or medical library. Many listings also have short summaries of

the article (abstracts), and some have links to the full article. The article

might be free, or it might require a fee charged by the publisher. 

• PubMed Central: http://www.pubmedcentral.nih.gov/

PubMed Central is the National Library of Medicine's database of journal

articles that are available free of charge to users.

Clinical trials.

Perhaps you wonder whether there is a clinical trial that is right for you. Or

you may want to learn about results from previous clinical trials that might be

relevant to your situation. Here are two reliable resources:

• ClinicalTrials.gov: http://clinicaltrials.gov/ct/g

ClinicalTrials.gov provides regularly updated information about federally

and privately supported clinical research on people who volunteer to

participate. The site has information about a trial's purpose, who may

participate, locations, and phone numbers for more details. The site also

describes the clinical trial process and includes news about recent clinical

trial results.

• Cochrane Collaboration: www.cochrane.org

The Cochrane Collaboration writes summaries (“reviews”) about evidence

from clinical trials to help people make informed decisions. You can search

and read the review abstracts free of charge at http://www.cochrane.org/

15
reviews/index.htm. Or you can read plain-English consumer summaries

of the reviews at www.informedhealthonline.org. 

The full Cochrane reviews are available only by subscription. Check with

your local medical or health library (see page 22) [link back to library section

in on-line version] to see whether you can access the full reviews there. 

Outcomes research.

Outcomes research provides research about benefits, risks, and outcomes (end

results) of treatments so that patients and their doctors can make better

informed decisions. The U.S. Agency for Healthcare Research and Quality

(AHRQ) supports improvements in health outcomes through research, and

sponsors products that result from research such as: 

• National Guideline ClearinghouseTM: www.guideline.gov

The National Guideline ClearinghouseTM is a database of evidence-based

clinical practice guidelines and related documents. Clinical practice

guidelines are documents designed to help doctors and patients make

decisions about appropriate health care for specific diseases or conditions.

The clearinghouse was originally created by AHRQ in partnership with the

American Medical Association and America’s Health Insurance Plans. 

Steer clear of deceptive ads and information.

While searching for information either on or off the Internet, beware of

“miracle” treatments and cures. They can cost you money and your health,

especially if you delay or refuse proper treatment. Here are some tip-offs that

a product truly is too good to be true:

• Phrases such as “scientific breakthrough,” “miraculous cure,” “exclusive

product,” “secret formula,” or “ancient ingredient.”

• Claims that the product treats a wide range of ailments.

• Use of impressive-sounding medical terms. These often cover up a lack of

good science behind the product.

• Case histories from consumers claiming “amazing” results.

• Claims that the product is available from only one source, and for a limited

time only.

16
• Claims of a “money-back guarantee.”

• Claims that others are trying to keep the product off the market.

• Ads that fail to list the company’s name, address, or other contact

information.

To learn more about finding evidence-based information, see “Where to Find

More Information,” page 20. The on-line edition of this booklet has many

additional resources.

17

Step 5:

Decide on a treatment plan.

At this point, you have learned about your disease or condition and how it

can be treated or managed. Your information may have come from the

following sources:

• Your doctor.

• Second opinions from one or more other doctors.

• Other people who are or were in the same situation as you.

• Information sources such as Web sites, health or medical libraries, and

nonprofit groups.

Work with your doctor to make decisions.

When you are ready to make treatment decisions, you and your doctor can

discuss:

• Which treatments have been found to work well, or not work well, for

your particular condition.

• The pros and cons of each treatment option.

Make sure that your doctor knows your preferences and feelings about the

different treatments – for example, whether you prefer medicine over surgery.

19

My doctor told me I had

done one of the hardest but

most important things a

patient has to do: Face up to

the diagnosis and make

decisions. It feels good to be

where I am now.

Bob, person with a 

neurological disorder
Once you and your doctor decide on one or more treatments that are right

for you, you can work together to develop a treatment plan. This plan will

include everything that will be done to treat or manage your disease or

condition—including what you need to do to make the plan work. 

Remember, being an active member of your health care team helps to reduce

your chances of medical mistakes, and it helps you get high-quality care.

Take another deep breath.

You have taken important steps to cope with your diagnosis, make decisions,

and get on with your life. Remember two things:

• Call on others for support as you need it. 

• Make use of evidence-based information for any future health decisions. 

Where to Find More Information

Get the support you need. 

American Self-Help Group Clearinghouse

http://mentalhelp.net/selfhelp/

National Board for Certified Counselors (NBCC)

3 Terrace Way, Suite D 

Greensboro, NC 27403-3660

336-547-0607.

www.nbcc.org

National Institute of Mental Health

Public Information and Communications Branch

6001 Executive Boulevard, Room 8184, MSC 9663

Bethesda, MD 20892-9663

Phone: 866-615-6464 (toll-free)

TTY: 301-443-8431 

http://www.nimh.nih.gov/HealthInformation/GettingHelp.cfm

20
Talk to your doctor. 

Be an Active Member of Your Health Care Team. Food and Drug

Administration. 2004. http://www.fda.gov/cder/consumerinfo/

active_member.htm. Phone: 888-INFO-FDA (888-463-6332). 

Be Informed: Questions to Ask Your Doctor Before You Have Surgery.

Agency for Healthcare Quality and Research. 1995.

http://www.ahrq.gov/consumer/surgery.htm. Phone: 800-358-9295.

Five Steps to Safer Health Care. Agency for Healthcare Research and Quality.

2003. http://www.ahrq.gov/consumer/5steps.htm. Phone: 800-358-9295.

Getting a Second Opinion Before Surgery. Centers for Medicare & Medicaid

Services. 2004. www.medicare.gov/Publications/Pubs/pdf/02173.pdf.

Phone: 800-MEDICARE (800-633-4227).

How to Get a Second Opinion. National Women’s Health Information

Center. 2003. http://www.4woman.gov/pub/secondopinion.htm. Phone:

1-800-994-WOMAN.

Quick Tips – When Planning for Surgery. Agency for Healthcare Research

and Quality. 2002. http://www.ahrq.gov/consumer/quicktips/

tipsurgery.htm. Phone: 800-358-9295. 

Quick Tips – When Talking with Your Doctor. Agency for Healthcare

Research and Quality. 2002. http://www.ahrq.gov/consumer/quicktips/

doctalk.htm. Phone: 800-358-9295.

Talking with Your Doctor: A Guide for Older People. National Institute on

Aging. 2002. www.niapublications.org/pubs/talking/index.asp.

Phone: 800-222-2225. |

21
Seek out information. 

2005 Toll-Free Numbers for Health Information. National Health

Information Center. www.health.gov/nhic/pubs/tollfree.htm.

Phone: 800-336-4797.

AARP Health Guide. AARP. 2004. www.aarp.org/health/healthguide.

Phone: 888-OUR-AARP (888-687-2277).

HON Code of Conduct (HONcode) for Medical and Health Web Sites

Health on the Net Foundation. http://www.hon.ch/HONcode/

How to Evaluate Health Information on the Internet: Questions and

Answers. National Cancer Institute. 2003. http://cis.nci.nih.gov/fact/

2_10.htm. Phone: 800-4-CANCER (800-422-6237).

How to Find Medical Information. National Institute of Arthritis and

Musculoskeletal and Skin Diseases. 2001. http://www.niams.nih.gov/hi/

topics/howto/howto.htm. Phone: 877-22-NIAMS (877-226-4267) (tollfree).

JAMA Patient Page: Health Information on the Internet. The Medem

Network. http://www.medem.com/medlb/

article_detaillb.cfm?article_ID=ZZZLJLLLTMC&sub_cat=603

National Guideline ClearinghouseTM. Agency for Healthcare Research and

Quality. http://www.guideline.gov/

NOAH: New York Online Access to Health. 

http://www.noah-health.org/

A User’s Guide to Finding and Evaluating Health Information on the Web.

Medical Library Association. 2003. http://www.mlanet.org/resources/

userguide.html#1

Virtual Treatments Can Be Real-World Deceptions. Federal Trade

Commission. 2001. http://www.ftc.gov/bcp/conline/pubs/alerts/

mrclalrt.htm

Your Guide to Choosing Quality Health Care. Agency for Healthcare

Research and Quality. 2002. http://www.ahrq.gov/consumer/qntool.htm.

Phone: 800-358-9295.

22
AHRQ consumer publications:

20 Tips to Help Prevent Medical Errors—Practical tips and questions to ask.

(AHRQ 00-P038)

20 Tips to Help Prevent Medical Errors in Children (AHRQ 02-P034)

Five Steps to Safer Health Care—Shorter version of 20 Tips. 

(AHRQ 03-M007)

Ways You Can Help Your Family Prevent Medical Errors!—Easy-to-read

version, with drawings. (AHRQ 01-0017)

Your Guide to Choosing Quality Health Care—Based on research about the

information people want and need when choosing health plans, doctors,

treatments, hospitals, and long-term care. (AHRQ 99-012)

Improving Health Care Quality: A Guide for Patients and Their

Families—Short version of Your Guide to Choosing Quality Health Care.

(AHRQ 01-0004)

Quick Checks for Quality—Checklist to use when choosing health plans,

doctors, treatments, hospitals, and long-term care. (AHRQ 99-R027)

Quick Tips:

When Getting Medical Tests (AHRQ 01-0040b)

When Getting a Prescription (AHRQ 01-0040c)

When Planning for Surgery (AHRQ 01-0040d)

When Talking with Your Doctor (AHRQ 01-0040a)

To order AHRQ publications:

For electronic copies of these publications, go to the AHRQ Web site 

at www.ahrq.gov/consumer

For print copies, contact the AHRQ Publications Clearinghouse

at 800-358-9295.
U.S. Department of Health

and Human Services

Agency for Healthcare

Research and Quality

www.ahrq.gov

AHRQ Pub. No. 05-0049

July 2005