Living with a chronic condition, like a bleeding disorder, can often mean yearly visits to a Hemophilia Treatment Center, frequent visits to doctor’s offices, and hospitals. Becoming a good self-advocate and developing good communication skills with providers can lead to better health outcomes. This toolkit offers resources to help you be a better partner in your or your child’s healthcare.
- presentations (recorded webinars, videos)
- downloads (articles, documents)
- links to other resources
|Voices of 5,000+ Patients: The First National Survey on Experience of Care at U.S. HTCs: Shared decision making and a positive patient/healthcare provider relationship foster patient satisfaction, which is a core patient-reported outcomes measure that is critical to clinical care, quality, and research. Historically, U.S. Hemophilia Treatment Centers (HTCs) have individually assessed patient satisfaction. However, a national, standardized survey to enable comparison of HTC characteristics, trends over time, and variation by region was lacking. To remedy this information gap, in 2015, the U.S. HTC Network devised and conducted the first ever national HTC patient satisfaction survey.
In this webinar, the panelists described the strategies used to develop and pilot the survey, administer the survey to HTC patients, and management and analysis of the data collected from respondents. Presenters described key national results and showed how regional differences in participant demographics and diagnoses influence patient satisfaction.
|Diagnosis in 16 Years: A Woman’s Health, Public Health Crisis: Quality clinical services, specifically for women and girls with bleeding disorders, are key to accurate diagnosis, reducing complications and diminished quality of life, and improving women’s health. The Hemophilia Federation of America’s (HFA) Blood Sisterhood program in partnership with the Foundation for Women & Girls with Blood Disorders (FWGBD) produced this important webinar to learn how the FWGBD is working to ensure proper diagnosis, optimal management and treatment of women and girls with blood disorders through special initiatives with the 135 federally funded Hemophilia/Hemostasis and Thrombosis Treatment Centers (HTCs) across the country. This webinar provides an introduction and overview of WGBD Clinics of Excellence Initiative and Directory Project. The Directory identifies HTCs that offer services for women and girls, and those that have specific Women & Girls Bleeding Disorder Clinics.|
|Big Decisions: Are Clinical Trials Right for You?: As the market for new treatments for the bleeding disorders community continues to grow, more clinical trials are open to patients and their families than ever before. While participation in these trials is important to medical and scientific advancement, not all clinical trials are right for every patient. This HFA Families webinar will include an explanation of the clinical trial process and an overview of the different phases of clinical trials. Participants will learn where to find reliable information and how to weigh the pros and cons of a trial that they may be interested in.|
|Comprehensive Clinic Checklist: As part of your or your child’s bleeding disorders management, it is customary to be seen by your healthcare provider or Hemophilia Treatment Center at least once a year for a comprehensive clinic visit. This fillable resources will help you organize your questions and concerns before, during and after your clinic visit.|
|Managing Your Bleeding Disorder: Managing a bleeding disorder can mean that you see many providers throughout the year. It can be challenging to keep all of the appointment information, medications, and contact information organized. Using our Managing Your Bleeding Disorder, fillable log pages, can help keep everything in one place. From your Clinic to your Dentist, it’s all there! Special thanks to Kasie Kolosik, LMSW & the Iowa Hemophilia and Thrombosis Center for requesting this resource and providing suggestions in its development.|
|Creating a Calm Clinic Visit: This resource is designed to help guide you through a comprehensive clinic visit. Comprehensive care examines the whole person, including both physical and mental health. This resource, combined with our Comprehensive Clinic Visit Checklist, will help ease the anxiety of the first clinic visit.|
|Medical Consent Form: This customizable document is an example of a medical consent form. It could be used for minor children if the parent/guardian leaves the child in the care of another adult.|
|Bleeders Bill of Rights: This tool, developed by HFA’s Care Access Working Group (CAWG), is about self-advocacy and empowerment. Use it to remind yourself of your rights, your choices, and your power.|
|Dear Addy: HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance. The following are Dear Addy questions and answers about emergency care, finding a hematologist, and informed consent.|
|Dateline Federation Article: Information is Key: Whether you are newly diagnosed with a bleeding disorder or are looking to make a change in your treatment or service provider, it’s important to examine and thoroughly understand what is important to your family in terms of service. This Dateline article reviews all of the stakeholders in the care and treatment of bleeding disorders. It also reviews what to expect from your treatment center and homecare company.|
|Infusion Log: Medical professionals and insurance companies often ask for records of infusions to help determine the best course of treatment. This log can be printed for recording infusions.|
LINKS TO OTHER RESOURCES
|MASAC: NHF’s Medical and Scientific Advisory Council (MASAC) was created in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community. The following are recommendations about emergency care:|
|The Foundation for Women and Girls with Bleeding Disorders: A directory of clinics and services, across the nation, for women and girls with bleeding disorders.|
|YOU: The Smart Patient: This book by famed Drs. Michael F Rozien and Mehmet Oz offers tips and tricks on how you can get the best health care.|
|CDC, Centers for Disease Control & Prevention: The CDC Division of Blood Disorders offers many resources to learn more about bleeding disorders, including a directory of the federally funded Hemophilia Treatment Centers (HTC) across the United States.|