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The NHF sponsors an ongoing quality improvement initiative called the Comprehensive Care Sustainability Collaborative (CCSC). Based on findings from some recent CCSC activities, the recognized value of HTCs is limited among payers and employers (purchasers of plans). In many situations employers and their health plans are unaware that HTCs existed or do not know about the breadth of services provided (and data collected). This can result in payers having narrow network contract strategies that may exclude HTCs.

CCSC Advisors have developed this survey to help identify key data currently collected and services provided by HTC’s.  This type of information, when shared with purchasers of health care, can help them to recognize the value of including HTC’s and their pharmacy programs in their network. The survey is being distributed to all HTCs. Results will be reported in aggregate and individual HTCs will not be identified.
It should take approximately 20 minutes to complete the survey. We are requesting for the survey to be completed by July 10.

If you have any questions please contact us at ccsc@impactedu.net.
Q1.1
Q1.2
Q1.3
 
Q1.4 May we contact you for clarification or further information regarding your center?
 
Q1.5
Q1.6
Q1.7
Q1.8 Are you the best contact at your center for further information?
 
Q1.9
Q1.10
Q1.11
Q1.12 What type of patient population does your center provide integrated comprehensive clinics for? (Choose all that apply)
 
 
 
 
   
 
 
 
   
Q1.13 How many patients in total are treated at your center and receive care in an integrated comprehensive clinic?
 
Q1.14 Which affiliation best describes your treatment center? (Choose all that apply)
 
  Q1.14a. Please describe other.
Q1.15 Please select the age groups treated by your center.
 
Q1.16 What type of pharmacy does your center have?
 
Q1.17 Which of the following accreditations does your clinic currently have? (Choose all that apply)
 
  Q1.17a.Please describe other.
Q1.18 Which of the following accreditations does your pharmacy currently have? (Choose all that apply)
 
  Q1.18a.Please describe other.
Q1.19 How important are the clinic and pharmacy accreditations listed above in order to obtain clinic and/or pharmacy contracts (with health plans) for patients to be best served?
 
Q1.20 Who decides to apply for certifications/accreditations at your clinic?
 
Q1.21 Who decides to apply for certifications/accreditations at your pharmacy?
 
Q1.22 Do you perform Immune Tolerance Induction (ITI) at your center?
 
Q1.23 Do you provide for 24/7/365 emergency care for patients at your own facility or in another center?
 
Q1.24 If you answered yes above, are the HTC clinicians on-call or are non-HTC clinicians on-call?
 
Q1.25 Are patients informed by your center whom they should contact in the event of medical emergency or in case treatment is needed outside normal working hours?
 
Q1.26 Are patients informed by your center whom they should contact in the event of a pharmacy emergency or in case treatment is needed outside normal working hours?
 
Q1.27 Does your center provide 24/7/365 expert hemophilia medical coverage? (i.e. can patients be seen and if required admitted on a 24/7/365 basis and the opinion of a senior hemophilia expert be obtained from either an HTC physician or Non-HTC physician hemophilia expert)
 
Q1.28 Does your center have an in-house coagulation laboratory that provides services that include: Molecular genetic tests, vWD panels, PK levels, etc.
 
Please indicate which of the following diagnostic tests are performed by your center (via access to a laboratory, either internally or externally) and what is the turnaround time (TAT) by marking yes/no and provide any comments as necessary.
* TAT (turnaround time: completion time from sample collection to result reporting)
** by inhibitor screen it is accepted that this could be an APTT mixing study and measurement of FVIII:C
Q1.29 PT, APTT, Thrombin time and mixing studies
     
  Performed by your center    
  TAT within 3 hours    
  24 hour service    
Q1.30
Q1.31 Factor VIII and IX assays
     
  Performed by your center    
  TAT within 6 hours    
  24 hour service    
Q1.32
Q1.33 Inhibitor screen**
     
  Performed by your center    
  TAT within 12 hours    
  24 hour service    
Q1.34
Q1.35 Fibrinogen, von Willebrand factor and factors V, VII, X, XI and XIII assays
     
  Performed by your center    
  TAT within 12 hours    
  24 hour service    
Q1.36
Q1.37 Platelet aggregation
Performed by your center
 
 
Q1.38
Q1.39 VWF multimers
Performed by your center
 
 
Q1.40
Q1.41 Which of the following specialists provide service at your center?
 
  Q1.41a.Please specify this type of care.
How many of each of the following specialists provide service at your center? (please approximate if you are not sure)
Q1.42 Hematologists
 
 
 
 
 
 
Q1.43 Physician’s Assistant/ Advanced Registered Nurse Practitioner
 
 
 
 
 
 
Q1.44 Nursing
 
 
 
 
 
 
Q1.45 Orthopedist
 
 
 
 
 
 
Q1.46 Pharmacist
 
 
 
 
 
 
Q1.47 Physical Therapist
 
 
 
 
 
 
Q1.48 Genetic Counselor
 
 
 
 
 
 
Q1.49 Dentist/Oral Surgeon
 
 
 
 
 
 
Q1.50 Social Worker
 
 
 
 
 
 
Q1.51 Psychologist
 
 
 
 
 
 
Q1.52 Nutritionist
 
 
 
 
 
 
Q1.53 Other Type of Care
 
 
 
 
 
 
Q1.54 Please indicate whether the following aspects of Coordination of Care and Case Management are provided by your center. (check all that apply)
 
  Q1.54a. Please describe other services.
Q1.55 Please indicate whether the following Patient/Family Education and Patient Family Support services are provided by your center. (check all that apply)
 
  Q1.55a. Please describe other services.
Q1.56 Please indicate whether the following Outreach Clinic and Tele-Medicine services are provided by your center. (check all that apply)
 
  Q1.56a. Please describe other services.
Q1.58 Please indicate whether the following data is currently collected, or is available to be reported as needed, by your center. Please also specify if data is currently being reported to a payer(s)/insurer(s) in an aggregate de-identified format.
       
  Number of joint bleeding events      
  Prescribed factor dose as IU/kg/dose      
  Number of prescription units ordered vs. units dispensed      
  Number of prescription units dispensed (if HTC supplies the factor concentrate)      
  Mean percent from the prescribed dose      
  Bleed-related days of school/work missed (as a secondary phase of patient-reported outcomes [PROs])      
  Number of all types of HTC encounters per patient (e.g., clinic visits, telephone contacts or telemed, emails, text messages, etc.)      
  Number of hospitalizations with a primary or secondary diagnosis of bleeding      
  Number of emergency department (ED) visits with a primary or secondary diagnosis of bleeding      
  Infusion logs      
  Home inventory quantities      
On behalf of the NHF, thank you for assisting us to help HTCs’ become better recognized for the services and quality of care provided to persons with bleeding disorders.
 
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