Tag Archive for: educated patient

Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado

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Cáncer de próstata avanzado: Cómo Ser Un Paciente Empoderado from Patient Empowerment Network on Vimeo.

¿Qué pasos puede dar para convertirse en un paciente de cáncer de próstata con capacidad de decisión? En este video animado, aprenderá herramientas de autoeducación y autodefensa que le ayudarán a participar en las decisiones sobre su tratamiento.

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See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Entendiendo Tu Diagnóstico del Cáncer de Próstata

 Construyendo una Relación con su Equipo de Atención Médica para el Cáncer de Próstata

Construyendo una Relación con su Equipo de Atención Médica para el Cáncer de Próstata

 Usted Tiene un Papel en Sus Decisiones de Atención del Cáncer de Próstata

Usted Tiene un Papel en Sus Decisiones de Atención del Cáncer de Próstata

Transcript: 

Niki: 

¡Hola! Soy Niki, y soy enfermera especializada en cáncer de próstata. Y este es Anthony, que vive con un cáncer de próstata avanzado.  

Juntos, vamos a guiarte a través de una serie de vídeos para ayudarte a aprender más sobre el cáncer de próstata y darte los pasos necesarios para desempeñar un papel activo en tu cuidado y en tus decisiones de tratamiento. 

En primer lugar, quiero presentarles la organización responsable de este vídeo: la Red de Empoderamiento del Paciente, o “PEN”.  

La misión de PEN es sencilla. Consiste en proporcionar a los pacientes con cáncer y a sus cuidadores los conocimientos y las herramientas necesarias para aumentar su confianza, para que tengan el control de su atención sanitaria y para ayudarles a conseguir su objetivo de recibir la mejor atención posible.  

[La experiencia de los pacientes representada en este vídeo es ficticia.] 

Anthony: 

Entonces, ¿qué significa ser un paciente empoderado? La Organización Mundial de la Salud lo define como “un proceso mediante el cual las personas adquieren un mayor control sobre las decisiones y acciones que afectan a su salud.”1  

Cuando me diagnosticaron el cáncer de próstata por primera vez, me sentí abrumado y no me sentía cómodo compartiendo mis preocupaciones y opiniones. Pero gracias a los conocimientos sobre mi enfermedad, a la colaboración con mi equipo y a que aprendí a defenderme a mí mismo, me sentí más controlado y con más confianza para hablar.. 

Niki: 

Exactamente, Anthony. Uno de los primeros pasos para convertirse en un paciente empoderado es informarse sobre su enfermedad. Puede empezar a aprender sobre su cáncer de próstata:  

  • Asegurarse de que puede acceder a su portal del paciente en línea, si está disponible, para poder ver sus registros médicos, comunicarse con su equipo de atención médica y acceder a los recursos cuando los necesite. Si no sabe cómo utilizar el portal del paciente, pregunte en la consulta de su médico, que debe tener un conjunto de instrucciones a la mano 
  • También puede visitar grupos confiables de defensa del cáncer de próstata para informarse sobre su enfermedad. Estas organizaciones suelen ser una excelente fuente de información y apoyo. Pida recomendaciones a su equipo sanitario.  

Recuerde que la información en línea nunca sustituye al consejo médico. Siempre debe consultar a su médico sobre lo que ha aprendido. Esto será más fácil a medida que vayas comprendiendo mejor tu enfermedad y te sientas más cómodo compartiéndola con tu equipo sanitario.  

Anthony: 

Así es, Niki. Pero, como aprendí de primera mano, hablar claro no siempre es fácil. He aquí algunos consejos que me ayudaron: 

  • Anote sus preguntas antes de las citas. Visite powerfulpatients.org/pc para acceder a planificadores de visitas al consultorio que le ayuden a organizar sus notas. 
  • Y trate de llevar a un amigo o un ser querido a sus citas para que le ayude a recordar la información y a tomar notas por usted. 
  • Otro consejo es que sea sincero sobre cómo se siente y comparta con su equipo médico los efectos secundarios del tratamiento o los síntomas que pueda tener. Su médico quiere saber cómo se encuentra y puede ayudarle si tiene problemas.  
  • También es una buena idea considerar una segunda opinión para ayudarle a sentirse seguro de su atención y para estar tranquilo. Esto es especialmente importante si siente que no se le escucha. 
  • Y, por último, usted tiene voz en las decisiones sobre sus cuidados. No dude en hacer preguntas: usted es su mejor defensor.   

Niki: 

¡Es un gran consejo, Anthony! Hemos hablado mucho. Así que no te olvides de descargar la guía que acompaña a este vídeo –– puede ayudarte a recordar lo que hemos tratado. 

Anthony: 

Y visita powerfulpatients.org/PC para ver más vídeos con Niki y conmigo. ¡Gracias por acompañarnos! 

The Importance of Acute Myeloid Leukemia Patient Empowerment

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The Importance of Acute Myeloid Leukemia Patient Empowerment from Patient Empowerment Network on Vimeo.

Why is acute myeloid leukemia (AML) patient empowerment vital? How can acute myeloid leukemia (AML) patients become empowered? AML expert Dr. Catherine Lai from Penn Medicine explains how she helps empower her patients and why educating patients is a vital part of their care.

[ACT]IVATION TIP from Dr. Lai: “Don’t be afraid to ask questions, don’t be afraid to ask about resources and other ways to get information, you want the right resources, so not necessarily…everything on Google is accurate, but there are lots of good resources out there that can give you the information needed so that you can make educated decisions.”

Download Resource Guide

Download Resource Guide en español

See More from [ACT]IVATED AML

Related Resources:

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

Long-Term Effects Acute Myeloid Leukemia Patients Should Know

AML Treatment Approaches Expand for Older and High-Risk Patients

 A Look at Lower Intensity Chemotherapy in Untreated AML

Transcript: 

Dr. Lai: 

It’s important to empower patients so that we’re making the best decision for them…that’s in line with their goals. I think that one of the main reasons why I love what I do is because I’m able to participate in the patient’s journey, and that journey doesn’t always mean that a patient has to live longer.

So I try to ask patients or do as patients, what are their…short- and long-term goals, do they have life events that they want to get to, is there a wedding coming up, a grandchild or something that I can help them get them to so that we can make a decision together that is taking into consideration their life outside of clinic and outside of the hospital.

I like to try to spend a lot of time with my patients educating them. Some people say I sometimes give them too much information, but I don’t feel like patients can make good decisions without being properly informed. So an educated patient makes a much better…makes a much better decision than somebody who doesn’t have the information.

And then I would also say it’s important to emphasize that you and your provider and our advanced practice provider and the social worker, we’re all a part of the same team that we all want the best outcome for the patient. And so knowing that, that you have a team of people that are taking care of you and that you really need to embrace learning and understanding as much as possible so that you can make the best decision about your short-term and long-term plan for yourself. So activation tip here is don’t be afraid to ask questions, don’t be afraid to ask about resources and other ways to get information, you want the right resources, so not necessarily…everything on Google is accurate, but there are lots of good resources out there that can give you the information needed so that you can make educated decisions.

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What Questions Should You Consider Asking Your Prostate Cancer Care Team?

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What Questions Should You Consider Asking Your Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients have engaged conversations with their healthcare team? This animated video reviews key questions patients can ask to help them navigate their treatment and care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, Niki and I are going to walk you through key questions to ask your prostate cancer team as you navigate your care decisions. 

First of all, it’s helpful to ask your physician how much experience they have treating prostate cancer patients. If appropriate, you may want to consider a second opinion. 

Niki: 

And it’s important to also have a deeper understanding of your disease by asking: 

  • What stage and grade is the prostate cancer? Has it spread beyond the prostate? 
  • Are there additional tests that you should undergo to provide a fuller picture of your disease? 
  • What educational resources are recommended to learn more about prostate cancer? 

Anthony: 

Once you understand more about your diagnosis and disease, then it’s time to really understand what steps could be next.  

And, if – and when – your disease does need to be treated, you should feel engaged in deciding on your treatment plan.  

Niki: 

That’s right. You can start by asking if treatment needs to begin right away or if you will be monitored for any changes. 

  • Then, establish the goals of your treatment plan. Based on your diagnosis and stage of disease, is the goal to try to cure the cancer or to manage the disease symptoms?  
  • Ask what treatment options are available to you and which approach is recommended for YOUR disease? 
  • And inquire if there is a clinical trial that could be right for you.  
  • Finally, ask what your options are if the initial treatment doesn’t appear to be effective or if your disease progresses. 

Once you know your options, ask about the potential short term and long-term side effects of each approach and how they may be managed. 

Anthony: 

You should also find out how your lifestyle may be impacted. For instance: 

  • Find out how each approach could impact your daily life, including your sex life, and for how long. 
  • You may also inquire about how treatment may impact fertility and if you should speak with a fertility specialist. 
  • Ask about the financial implications of each approach and whether there are resources for financial assistance. 

Niki: 

That’s great advice, Anthony. We hope these questions give you a good starting point for engaged conversations with your team. Remember, you may have more questions related to your individual situation, these are just a starting point to help.

Anthony: 

Don’t forget to download the guide that accompanies this video. It will have a comprehensive list of the questions we have reviewed. 

And visit powerfulpatients.org/PC to access more videos with Niki and me. 

You Have a Role in Your Prostate Cancer Care Decisions

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You Have a Role in Your Prostate Cancer Care Decisions from Patient Empowerment Network on Vimeo.

What role do patients play in their prostate cancer care decisions? This animated video reviews the shared decision-making process and outlines steps for patients to engage in their care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.   

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, we’re going explain why you should take an active role in your prostate cancer care and review steps to help you engage in the decisions that need to be made. 

Niki: 

That’s right, Anthony.  

Which leads me to the term “shared decision-making.” You may have heard of this term already – basically, it means that you and your healthcare team collaborate on care decisions and the goal is to have YOU be at the center of these decisions. 

Anthony: 

That’s right! For example, when it was time to discuss my care plan, my doctor walked me through the considerations of each approach and how each option could impact my lifestyle. I asked questions and shared my goals during the conversations. And I felt HEARD. 

Niki: 

Exactly – that’s shared decision-making in action. When you are living with cancer, often the risks and benefits need to be weighed to decide which course of action could be best for your individual disease. So why is it so vital to be an active participant? Studies show that patients who engage in their care may have better outcomes and experiences1. And it will help you learn more about your disease and move forward with confidence. 

Anthony: 

Now that you know what shared decision-making IS and why you should become a partner in your care, let’s review steps that will help you become more engaged: 

The first, and most important step, is to educate yourself about your disease.  

Niki: 

Your doctor’s office can be a great source of information and resources, so it’s a good place to start. And there are also several advocacy groups that provide educational materials, for instance: [links on screen as they are read]: 

  • Patient Empowerment Network, the creator of this video. 
  • The Prostate Cancer Foundation. 
  • The Prostate Cancer Research Institute. 
  • The Prostate Health Education Network, which focuses on services and support for Black men. 
  • And ZERO-The End of Prostate Cancer. 

Anthony: 

Once you learn more about your prostate cancer through resources like these, you will feel more empowered to voice your opinions. Remember, it’s important to speak up and ask questions at each stage. 

Niki: 

So, what else can you do to be a partner in your decisions? 

  • First, make sure you understand and communicate the goals of your care before making any decisions. 
  • Then, make sure you are informed about your options and ask for supporting materials if you need clarity. 
  • And ask how your lifestyle may be impacted by each approach. 
  • You should also discuss the risks and benefits of each option. 
  • Request resources to aid in decision-making and information that can help determine the best route for your individual disease. 
  • As always, bring a friend or family member and discuss your options with loved ones. 
  • Finally, remember YOU are at the center of your care. You should feel comfortable with any choice before you move forward. 

Anthony: 

Now that you’ve watched this video, make sure to download the guide that contains highlights of this discussion – and you can print it out or save it on your computer to reference in the future. 

Niki: 

Visit powerfulpatients.org/PC to access more videos with Anthony and me. Thanks for joining us! 

Building a Relationship With Your Prostate Cancer Healthcare Team

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Building a Relationship With Your Prostate Cancer Healthcare Team from Patient Empowerment Network on Vimeo.

Who are the potential members of your prostate cancer team? This animated video reviews the key providers who may be involved in your care and provides tools for confidently communicating with team members.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer. Thanks for joining us! 

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’re going to walk you through the members of your prostate cancer healthcare team – and share tips for building strong relationships and communicating more effectively. 

Niki: 

When it comes to prostate cancer, you need a team that collaborates on all aspects of your care. And it’s vital that you utilize ALL the members. After all, they are there to help you. 

So, who IS on your team? 

There are several different providers who may be involved with your prostate cancer diagnosis and care: 

  • Let’s start with a urologist. This is a doctor who specializes in the male reproductive organs and can perform prostate cancer surgery. Some are also trained oncologists – urologic oncologists – who are specially trained in cancer. 
  • Then there could be a radiation oncologist. This team member specializes in treating prostate cancer with radiation. 
  • Next, there may also be a medical oncologist. This is a physician who is trained in non-surgical prostate cancer approaches, such as hormonal therapy and chemotherapy. 
  • And, finally, your primary care physician should also be kept in the loop. 

Anthony: 

And beyond your doctors, there is a whole team of supportive professionals to help you along the way. For instance: 

  • A nurse like Niki can provide you with information to help with decisions and share advice for managing day-to-day issues, including symptoms and side effects. You may also want to work with a nurse navigator, who is specially trained to help guide you through your cancer care. 
  • A social worker can help you navigate the details of your care and suggest support resources for you and your family.  
  • And a palliative care specialist can work with you on helping to relieve symptoms, pain, and even stress-related issues like anxiety and depression. 

Niki: 

 There are several other team members you can rely upon, including: 

  • A pharmacist, who can dispense prescription medications and inform you of their use and potential side effects. 
  • A genetic counselor, who has special training in helping patients understand their genetic testing options and the potential impact of the results.  
  • And don’t forget mental health professionals. Treating your mental health is just as important as treating the prostate cancer itself.  

Anthony: 

Exactly. I struggled emotionally when I was diagnosed, so I reached out to the social worker, who connected me with a counselor and support groups. Seeing a professional and joining a group made feel less alone and more hopeful.  

Niki: 

And last, but not least, a care partner or loved one is another core member of your team.  

Anthony: 

Absolutely! Whether it’s a friend or family member, having someone with you at appointments or to talk about your options is beneficial. 

Now that you know who may be on your team, let’s talk about strengthening communication. By communicating effectively, you can learn about your disease and become an active partner in care decisions. Here are a few tips to help you: 

  • First, make sure everyone on your team is aware of your care goals. 
  • And bring someone to appointments to help you write down important information and make sure to request post-visit summaries to help you retain the information. 
  • Ensure you have access to your patient portal and use the messaging service to communicate directly with your team members. Ask follow-up questions about your appointment if necessary. 
  • Finally, it’s essential to speak up in appointments. Your team wants to hear your questions and know how you are doing. It could help them adjust your care plan. 

Niki: 

Thank you for joining us – we hope you feel more empowered! And remember to download the guide that accompanies this video to review what we discussed. 

Understanding Your Prostate Cancer Diagnosis

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Understanding Your Prostate Cancer Diagnosis from Patient Empowerment Network on Vimeo.

What do you need to know about your prostate cancer diagnosis? This animated video reviews the diagnosis process and provides steps for working with your healthcare team to understand your individual disease.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’ll help you understand prostate cancer and how it is diagnosed and staged. 

Niki: 

So, what is prostate cancer exactly? It starts when cells in the prostate gland grow out of control, forming a cancerous tumor.  

It’s the second most common cancer in American men. And while it can be serious, there are options available for prostate cancer care.  

Anthony: 

And there are certain risk factors that may make you more likely to develop prostate cancer, such as: 

  • Your age. 
  • Your race and ethnic background. For instance, Black men are more likely to be diagnosed with prostate cancer than men of other races. 
  • Your family history and your genetics.  

Niki: 

That’s right, Anthony. Now that we have a better understanding of what prostate cancer is, let’s move on to how it is diagnosed.  

Your healthcare team will use a variety of tests to better understand your disease. 

For example, A PSA test [PSA: Prostate-Specific Antigen on screen] and a biopsy may be used to confirm a diagnosis. And imaging tests—like an MRI or CT scan—are used to find out if the cancer has spread. 

These test results also help your doctor stage your disease. Staging helps indicate the location of the cancer, whether it has spread beyond the prostate, and its impact on other areas of the body. It may also assist in guiding a patient’s treatment plan.  

When staging prostate cancer, doctors may consider: 

  • The size of the primary tumor and where it is located. 
  • They’ll also factor in if the cancer has spread to nearby lymph nodes or other parts of the body. 
  • The patient’s PSA level is also used in staging. This test measures the amount of prostate-specific antigen in the blood. 
  • And finally, the cancer’s grade, which is based on the Gleason score. A Gleason score measures how likely the cancer is to spread and whether it is aggressive. 

Anthony: 

Thanks for explaining that, Niki. So, what are the stages of prostate cancer?  

Niki:

Great question!  

  • Prostate cancer stages begin at stage I, which indicates a slower growing disease that is confined to the prostate. 
  • And stage II means the cancer is only in the prostate, but the disease may have an increased chance of growing or spreading.  
  • Stage III prostate cancer indicates that the tumor has spread to areas close to the prostate and may be considered locally advanced.  

Anthony:   

And I was diagnosed with stage IV prostate cancer, which means it has spread beyond the prostate and is considered advanced prostate cancer.  

Niki: 

That’s right. And because prostate cancer staging is complicated, it’s important to review test results with your doctor to understand your stage and grade. If you don’t understand your diagnosis, make sure to ask questions and request resources to help you.  

Anthony: 

Here are some additional steps you can take to feel more confident about understanding your diagnosis: 

  • First, ask about the stage of your prostate cancer and whether it is aggressive. 
  • And confirm that you have had all relevant testing to inform an accurate diagnosis, including genetic testing, if appropriate. 
  • Then, be sure to review the test results together with your team to make sure you understand how they impact your care and treatment options. 
  • Also, ask about your Gleason score and how it impacts your decisions.  

Niki:

And find out how experienced your physician is in treating your type of prostate cancer and consider seeking a second opinion with a prostate cancer specialist. 

Anthony: 

Finally, don’t hesitate to request support resources to help you cope emotionally with your diagnosis.  

Niki: 

Visit powerfulpatients.org/pc to view all the videos in this series and download the guide that accompanies this video to review what we’ve discussed.   

Anthony: 

Thanks for joining us! 

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

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Tools for Becoming an Educated and Empowered Prostate Cancer Patient from Patient Empowerment Network on Vimeo.

What steps can you take to become an empowered prostate cancer patient? In this animated video, you’ll learn tools for self-education and self-advocacy to help you partner in your care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

Together, we’re going to guide you through a series of videos to help you learn more about prostate cancer and give you steps to play an active role in your care and treatment decisions. 

First, I want to introduce you to the organization responsible for this video—the Patient Empowerment Network—or “PEN.”  

PEN’s mission is simple. It’s to provide cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in their goal of receiving the best, most personalized care available.  

[Patient experience depicted in this video is fictional.]

Anthony: 

So, what does it mean to be an empowered patient? The World Health Organization defines it as “a process through which people gain greater control over decisions and actions affecting their health.”1 

When I was first diagnosed with prostate cancer, I was overwhelmed, and I didn’t feel comfortable sharing my concerns and opinions. But through finding out more about my disease, working together with my team and learning to advocate for myself, I felt more in control and more confident speaking up. 

Niki: 

Exactly, Anthony. One of the first steps to becoming an empowered patient is to educate yourself about your disease. You can start learning about your prostate cancer by:  

  • Making sure you can access your online patient portal, if available, so you can view your medical records, communicate with your healthcare team, and access resources when you need them. If you don’t know how to use the patient portal, just ask your doctor’s office – they should have a set of instructions on hand. 
  • You can also visit credible prostate cancer advocacy groups to learn about your condition. These organizations are typically an excellent source of information and support. Ask your healthcare team for recommendations.  

Remember, online information is never a substitute for medical advice. You should always consult your doctor about what you’ve learned. This will become easier as you get a better understanding of your disease and feel more comfortable sharing with your healthcare team. 

Anthony: 

That’s right, Niki. But, as I learned firsthand, speaking up is not always easy. Here are some tips that helped me: 

  • Write down your questions before your appointments. Visit powerfulpatients.org/pc to access office visit planners to help you organize your notes. 
  • And, try to bring a friend or loved one to your appointments to help you remember information and to take notes for you. 
  • Another tip is to be honest about how you feel and share any treatment side effects or symptoms you may be having with your healthcare team. Your doctor wants to know how you are doing and may be able to help you if you are having issues.  
  • It’s also a good idea to consider a second opinion to help you feel confident in your care and to provide piece of mind. This is especially important if you feel like you are not being heard. 
  • And, lastly, you have a voice in your care decisions. Don’t hesitate to ask questions – YOU are your own best advocate.  

Niki: 

That’s great advice, Anthony! We’ve covered a lot. So don’t forget to download the guide that goes with this video—it can help you remember what we’ve discussed. 

Anthony: 

And visit powerfulpatients.org/PC to view more videos with Niki and me. Thank you for joining us!