Caring for someone who has IPF

Transcription

1 CAREGIVER BROCHURE Caring for someone who has IPF TAKE ACTION WITH OFEV

2 Table of Contents IPF and treatment with OFEV About being a caregiver About IPF About OFEV Managing treatment Advanced planning Resources If you are reading this guide, you are taking care of someone with idiopathic pulmonary fibrosis (IPF) who has been prescribed OFEV (nintedanib). This guide can help you prepare for the journey ahead. Up to 3 million people worldwide may have IPF. Compared with asthma, which affects about 235 million people worldwide, IPF is rare. The symptoms of IPF occur over time. The progress of the disease may be different for every person. Some people maintain the same level of function for many years. Others get worse quickly. Although there is currently no cure for IPF, there are treatments available that can help slow disease progression. It can be upsetting to find out that someone you are close with especially a loved one has IPF. As the caregiver, you will face many challenges. You may need to help make difficult decisions. This guide suggests ways to help the person you are caring for cope with this progressive disease and get the most from treatment with OFEV. 2 3

3 Caring for yourself is critical when providing care A big part of being a good caregiver is taking care of yourself too both mentally and physically. If your own health is poor, then you may have a hard time providing care. Make sure you are up to taking care of someone else. Caring for someone who has IPF is emotionally tough, especially if that person is a loved one. It is common to feel like you have taken on more than you can handle. You may feel depressed, angry, or unable to sleep or eat well. These are often clues that you are overwhelmed. Here are some tips to help you cope Give yourself a break and hire an aide to provide short-term care Use a nursing home or assisted living facility for vacations of a week or longer Have a friend or family member help with chores, such as shopping or cleaning Find caregiver support groups in your area. See the resource list at the end of this guide If you do not feel you can provide enough care, talk with the person you are caring for and other family members. In some cases, a nursing home or assisted living facility may be the best option. 4 5

4 Communication is key Share information with all caregivers Some caregivers live with a patient. Many caregivers do not they rely on friends and paid help. You should always be able to tell other caregivers important information about the current treatment. Involve the doctor in the conversation As IPF gets worse, the treatment plan will change. Be sure to ask the doctor questions each step of the way. Discuss whatever is important to you and the person you care for. Talking about the future is easier if you address these concerns at every visit to the doctor. The doctor will understand your priorities and can spend more time discussing them with you. Don t be afraid to ask for help Friends and family members will offer to help. Take them up on it. You can ask each person to help with a task that matches his or her skills. If you have a friend who is a good cook, ask that person for a homemade meal. If another friend is handy with repairs, ask him or her to fix things around the house. Several organizations offer assistance and support to people with IPF as well as their families, friends, and caregivers. For more information, please see the list of resources on page 22. Now that you know more about your role as a caregiver, find out what you need to know about IPF and OFEV. 6 7

5 What is IPF? Signs and symptoms of IPF IPF stands for idiopathic pulmonary fibrosis. In IPF, the lung tissue becomes thickened, stiff, and permanently scarred. The medical term for this scarring is fibrosis. Sometimes, doctors can find out what is causing lung scarring. For example, contact with certain pollutants or medicines can cause the disease. The word idiopathic is used when the cause cannot be found. IPF gets worse over time. As the lung tissue becomes more and more scarred, it becomes harder to breathe. This is because less oxygen is able to enter the body. That is why you may notice that the person in your care feels out of breath during daily activities. Symptoms of IPF may be different for every person. Common symptoms include: A frequent cough and shortness of breath that may get worse during ordinary activities Tiredness Weakness Loss of appetite Weight loss Widening and rounding of fingertips (finger clubbing) caused by lack of oxygen Cough Finger clubbing Tiredness Shortness of breath Healthy alveoli (air sacs) Damaged alveoli Weakness Loss of appetite Weight loss Allow oxygen to enter body Less oxygen enters body As IPF progresses, there is no way to reverse its damage (except for a lung transplant). But there are treatments that help slow disease progression. Be an active caregiver. Learn about IPF and treatment with OFEV (nintedanib). 8 9

6 Be aware of the symptoms What is an acute IPF exacerbation? A sudden and severe worsening of symptoms with no known cause is considered an acute IPF exacerbation. This can be serious and the person in your care may have to go to the hospital. OFEV (nintedanib) can help lower the risk of having an acute IPF exacerbation. Not everyone with IPF will experience an acute IPF exacerbation, but contact the doctor right away if the person in your care develops the following symptoms: Difficulty breathing (breathing requires much more effort than usual, and does not seem to get better) A cough that gets worse Fever or flu-like symptoms (such as body aches) Recognize signs of anxiety and depression People who have IPF may feel anxious or depressed. It can be hard for them to deal with a disease that makes it difficult to do things they enjoy. If the person you are caring for feels this way, there are ways you can help him or her cope. Learn about depression and anxiety Reach out to community or online support groups Ask a doctor about medicines that may help Do you see any changes in the behavior of the person in your care? Talk about whether he or she is feeling anxious or depressed. Knowing more about the condition of the person you care for can help you make informed decisions. Know what the tests show If you have visited the doctor with the person you are caring for, you may have seen some of the tests used to track treatment progress. Spirometry is the most common test used to measure lung function. Spirometry measures forced vital capacity, or FVC. FVC is the total amount of air blown out in 1 breath. The patient takes a deep breath and blows all the air into the spirometer as hard and as quickly as possible. This test shows how well the lungs are working

7 What to expect from treatment with OFEV What is OFEV? OFEV (nintedanib) is a prescription medicine used to treat IPF. Hundreds of people with IPF have taken OFEV in clinical trials, with promising results. What does OFEV do? OFEV slows the progression of IPF. That means symptoms will not worsen as quickly as they would without treatment. OFEV will not reverse lung damage. OFEV helps to slow the decline in lung function. This helps prevent breathing from getting worse. What could be the side effects? Generally, OFEV is well tolerated by most people. However, the person in your care may experience some side effects, including: Diarrhea: Unusually frequent and typically watery stools Nausea: A feeling of oncoming sickness (not to be confused with vomiting) Vomiting: Throwing up Upper abdominal pain: Pain anywhere between the chest and stomach Liver function changes: regular blood tests will assess changes in liver function. Tell the doctor if the person in your care has any of the following symptoms: Yellowing of the skin or the whites of the eyes Feeling more tired than usual Dark or brown (tea-colored) urine Nausea or vomiting that continues even after taking antinausea medicine Pain on the right side of the stomach Bleeding or bruising more easily than normal If the person in your care is having side effects, talk to the doctor about how to help manage them. Please see pages for more information. Attention: women who are pregnant should not take OFEV Women who are pregnant or breast-feeding or who may be pregnant or are planning to have a baby should ask their doctor or pharmacist for advice before starting treatment with OFEV. Women of child-bearing potential who are taking OFEV must use birth control, including barrier methods as a second form of birth control, during treatment and for at least 3 months after treatment. If the person in your care becomes pregnant while taking OFEV, tell the doctor right away, as OFEV can cause birth defects. OFEV should not be taken during breastfeeding

8 Talking to the doctor Tell the doctor about all medicines being taken by the person in your care. Be sure to mention all of the following: Prescription drugs Nonprescription drugs Over-the-counter medicines Vitamins Herbal supplements Dietary supplements It is especially important to tell the doctor if the person you are caring for is taking any of the following medications: A blood thinner (such as warfarin, phenprocoumon, or heparin) Antiseizure medicines (such as carbamazepine or phenytoin) Medicines that fight infections (such as erythromycin, ketoconazole, or rifampicin) Over- the- counter medicines (such as St. John s wort, which is commonly used to treat depression) Laxatives, stool softeners, or other medicines or dietary supplements, including fiber, that may cause diarrhea If you are not sure whether a certain medicine is listed above, ask the doctor or pharmacist. The doctor will explain exactly how OFEV should be taken As with all medications, it is important that the person in your care follows the doctor s exact recommendation for taking OFEV (nintedanib)

9 Managing side effects How you can help Gastrointestinal (GI) side effects diarrhea, nausea, stomach pain, and vomiting may occur in some people who take OFEV (nintedanib). Before the person you are caring for begins therapy with OFEV, tell the doctor if he or she is taking any medicines or dietary supplements that may cause or worsen side effects. These may include: Laxatives Stool softeners Fiber The doctor may want to stop these medicines to prevent or lessen GI side effects that may occur with OFEV. Tell the doctor immediately if GI side effects occur with OFEV. The next page suggests some ways to help control GI side effects. Talk to the doctor and keep track of what works best for the person in your care. DRINKING PLENTY OF WATER AND OTHER CLEAR LIQUIDS Diarrhea can cause the person in your care to become dehydrated. Drinking water and other clear liquids that are easy to digest, like juice, broth, and plain gelatin, can help prevent this EATING SIMPLE FOODS Foods like rice, bread, noodles, bananas, chicken (without skin), and turkey are plain and less likely to upset the stomach Some foods and drinks, such as milk and dairy products, spicy or greasy foods, orange juice, foods high in fiber or fat, caffeinated products, or alcohol could make GI side effects worse KEEPING TRACK OF MEDICINES It is important that the person you are caring for follows the doctor s exact recommendation for taking OFEV. The person in your care should follow the doctor s exact recommendation for taking OFEV Keep medicine in the house to help stop diarrhea; when you go out, make sure you or the person in your care carries some Make sure the person in your care is not taking laxatives or fiber supplements (unless the doctor has instructed him or her to do so) 16 17

10 Additional therapies to consider There is a lot you need to know when caring for someone who has IPF. Learning as much as possible about IPF and its treatments can help. You are already taking the right step by reading this guide. Talk with the doctor to develop a plan and act on it doing so gives you more control. Therapies that may help the person you care for Oxygen therapy: May make it easier to breathe and move around; may also lower blood pressure and improve sleep Pulmonary rehabilitation: A program that helps patients stay active; designed to fit specific needs and abilities Lung transplant: Surgery that replaces 1 or 2 of the patient s diseased lungs with healthy lungs from a donor; this can increase life span and quality. Certain criteria must be met to qualify for placement on the lung transplant waiting list Symptom management, or palliative care: Designed to ensure the patient s comfort by relieving pain and addressing other issues not directly caused by IPF. Examples of issues that require palliative care include breakdown of skin following extended bed rest and mouth dryness caused by oxygen treatments Your next steps as the caregiver Learn more about IPF using the list of resources at the back of this guide Develop a plan and be sure to inform all caregivers involved. You should decide: Under what conditions the person in your care wants to be taken to the hospital in an emergency Whether or not he or she wants CPR (cardiopulmonary resuscitation), a method used to restart the heart if it stops Keep track of the daily patterns of the person you care for. Use a daily log (like the one in the Patient Journal, included in this starter kit) and make sure he or she is taking medication as prescribed by the doctor 18 19

11 Advanced care planning Talking about advanced planning may be hard. But, having a clear idea of your loved one's wishes can bring you peace of mind. Talking about these wishes will help you plan what to do if an emergency occurs. The person in your care must be a part of this planning process if he or she is able. It is important to understand and agree about which steps to take. Talk about these choices with the doctor: Ventilators: Ventilators push air into and out of the lungs. Although they may keep a patient alive for a longer period of time, they can be uncomfortable and make it hard to talk or swallow. Many patients require sedation while on a ventilator Cardiopulmonary resuscitation (CPR): This is a method used to restart the heart if it stops. Some patients want a do-notresuscitate (DNR) order. This means doctors and nurses may not attempt to restart the heart. You and the person you care for can add a DNR order to his or her medical chart Supportive measures: Tube feedings, intravenous (IV) medicines, and antibiotics are also options you should discuss with the doctor and the person in your care. These are measures that may help someone with IPF live longer Legal matters: Consult with a social worker or family lawyer about legal requirements, both before and after death. A lawyer may also help plan financial matters, wills, and life insurance policies A complete advanced care plan should: Cover what should be done in different medical situations Name someone who can make decisions if the person in your care cannot communicate Be written down in a medical record Be available to any caregiver in the home, nursing home, or hospital 20 21

12 Resources Notes Remember that you are not alone. More and more people are taking care of loved ones who have a fatal disease such as IPF. Below is a list of resources available to you and the person in your care. Get in touch and keep in touch with these groups and ask for support. Use this space to write down questions you have for the doctor, or for notes about the treatment of the person in your care. Sponsored by Boehringer Ingelheim Life With IPF Pulmonary Fibrosis Foundation Coalition for Pulmonary Fibrosis European Lung Foundation EURORDIS: Rare Diseases Europe Breathing Matters Patients Like Me

13 Boehringer Ingelheim International GmbH. All rights reserved. January 2016