Att 4_0706_PEI Results_2008

ATTACHMENT 4

NPCR Program Evaluation

Results Web Display

ATTACHMENT 4

National Program of Cancer Registries (NPCR) Program Evaluation Results 2006
View national results
Staffing
1. FTE staff positions funded at CCR
National	Filled	Vacant
NPCR-funded FTE positions	88.93% (381.10)	11.07% (47.45)
State-funded FTE positions	91.69% (316.75)	8.31% (28.70)
FTE positions funded by other sources	96.16% (142.65)	3.84% (5.70)
2. Percentage of FTEs with the following qualifications:
	National
FTE Certified Tumor Registrars (CTR)	42.02% (387.95)
FTE Epidemiologists (Ph.D., Dr.P.H., or Sc.D.)	4.36% (40.25)
FTE Epidemiologists (M.P.H.)	5.84% (53.90)
FTE Medical Doctors (M.D.)	1.79% (16.51)
FTE Statisticians (masters or doctoral level)	4.40% (40.60)
Other (B.A., B.S., no degree)	41.59% (383.95)
Legislation
3a. With the passing of Public Law 107-260 (the Benign Brain Tumor Cancer Registry Amendment Act), NPCR-funded registries are required to collect data on benign brain tumors beginning in diagnosis year 2004. Do regulations or legislation in your State or territory authorize you to collect data on benign brain tumors?
	National
	91.49% (43)
3b. If No, what are your plans, including timeframes, to modify your State or territory's legislation or regulations to allow you to collect benign brain tumor data?
	National
Modification of legislation or regulations in process	75%
Plan to be addressed after key position is filled	25%
4. Does your State or Territory have legislation or regulations prohibiting you from reporting county level data?
	National
	10.64% (5)
Data Quality And Completeness
5. Does your CCR have at least one staff member responsible for QC?
	National
	97.87% (46)
6. Does your CCR have at least one CTR who performs abstract review?
	National
	95.74% (45)
7. Does your CCR analyze information from edit procedures on a regular basis to identify trouble spots?
	National
	100.00% (47)
8. Has your CCR included reportable hematopoietic diseases in any case finding and quality control skills?
	National
	80.85% (38)
9. Does your CCR perform any of the following methods of acceptance sampling?
	National
Automated edit checks	91.49% (43)
Duplicate data entry	34.04% (16)
Duplicate coding	36.17% (17)
Duplicate abstracting	34.04% (16)
None	6.38% (3)
Total Respondents: 47
10. When abstracts are corrected or changed at your CCR, is information about the changes returned to the abstractor for review?
	National
	63.83% (30)
11. Does your CCR match all cancer causes of death against your registry data?
	National
	97.87% (46)
12a. Do you update your CCR database following death clearance matching?
	National
	97.87% (46)
12b. If “yes”, by which method do you perform this update?
	National
Manual	19.15% (9)
Electronic	78.72% (37)
Total Respondents: 47
13. Does your CCR perform follow back to or on the following sources of death clearance?
	National
Hospitals	97.87% (46)
Physician(s) / Medical Examiner	93.62% (44)
Nursing Homes	76.60% (36)
Hospices	59.57% (28)
Coroner	46.81% (22)
Resident, died out of state	31.91% (15)
Non-resident, died in state	8.51% (4)
Next of kin	2.13% (1)
None
Total Respondents: 47
14. Does your CCR receive cases from:
	National
All bordering States	91.49% (43)
Some bordering States	6.38% (3)
Out-of-State facilities	46.81% (22)
Total Respondents: 47
Computer Infrastructure
15. Listed below are commonly used software systems for central cancer registries. What is the primary software system used to process and manage cancer data in your CCR?
	National
RMCDS (Rocky Mountain Cancer Data System)	42.55% (20)
ELM (Premier) (IMPAC Medical Systems, Inc.)
CansurFacs (IMPAC Medical Systems, Inc.)
IMPAC (IMPAC Medical Systems, Inc.)	4.26% (2)
MRS (Medical Registry Services, Inc.)	4.26% (2)
OncoLog (Onco, Inc.)
ERS (Electronic Registry Systems, Inc.)
Registry Plus Products	14.89% (7)
In-house software (developed specifically for your State)	23.40% (11)
Other	10.64% (5)
None
Total Respondents: 47
15a. Please indicate which Registry Plus Products software are used primarily to process and manage cancer data in your CCR?
	National
Abstract Plus	77.78% (7)
Prep Plus	77.78% (7)
CRS Plus	66.67% (6)
TLC Plus	66.67% (6)
Link Plus	66.67% (6)
NAACCR Record Conversion Utility	66.67% (6)
Registry Plus Online Help	77.78% (7)
Total Respondents: 47
16. Listed below are commonly used registry software systems. What software systems are used by most of your reporting sources as the primary software for managing cancer data?
	National
RMCDS (Rocky Mountain Cancer Data System)	51.06% (24)
Abstract Plus	27.66% (13)
Registry Plus Online Help	12.77% (6)
Precis Central (IMPAC Medical Systems, Inc.)	19.15% (9)
IMPAC (IMPAC Medical Systems, Inc.)	82.98% (39)
SHACRS (Scotts Hill Associates Cancer Registry Systems)	4.26% (2)
ERS (Electronic Registry Systems, Inc.)	53.19% (25)
MRS (Medical Registry Services, Inc.)	61.70% (29)
In-house software (developed specifically for your State)	21.28% (10)
Other	48.94% (23)
Total Respondents: 47
17. Is your CCR able to receive encrypted cancer abstract data from reporting sources via the Internet?
	National
Yes	65.96% (31)
Currently being developed and/or implemented	23.40% (11)
No, not able to receive encrypted data via Internet from reporting sources	10.64% (5)
Total Respondents: 47
18. Which edit programs are used by your CCR to check cases?
	National
CDC EDITS (batch)	93.62% (44)
CDC EDITS (interactive)	61.70% (29)
Other in-house	51.06% (24)
Other vendor	59.57% (28)
None
Total Respondents: 47
19. On which edit sets are your edits based?
Percentages do not equal 100
	National
NPCR - Required	100.00% (47)
NPCR - Supplemental	78.72% (37)
State Example with NPCR RX	10.64% (5)
CoC (any CoC sets)	42.55% (20)
NAACCR call-for-data	95.74% (45)
Extent of disease	14.89% (7)
Verify ICD-0-2 to 3 conversion	42.55% (20)
Recodes	8.51% (4)
SEER	40.43% (19)
TEXT	17.02% (8)
Staging	21.28% (10)
In-house	29.79% (14)
Other	23.40% (11)
Total Respondents: 47
20. How are edits applied at your CCR?
	National
Source records	4.26% (2)
Consolidated records	4.26% (2)
Both source and consolidated records	91.49% (43)
Total Respondents: 47
21a. Do you perform record consolidation on your data?
	National
	97.87% (46)
21b. If "yes", do you perform record consolidation on the following:
National	Electronic	Manual	Both
Patient	12.77% (6)	10.64% (5)	74.47% (35)
Treatment	8.51% (4)	27.66% (13)	57.45% (27)
Follow-up	14.89% (7)	6.38% (3)	61.70% (29)
22a. Do you provide a registry-specific edit set to your reporting facilities and/or vendors for use prior to data submissions to your CCR?
	National
	46.81% (22)
22b If yes, do you require facilities to run registry-specific edits prior to their data submission to your CCR?
	National
	29.79% (14)
Reporting Completeness
23. Types of facilities and healthcare providers reporting:
National	No. required	Total	Reporting	Reporting
	to report	reporting	electronically	by paper
Non-Federal Hospital Cancer Registries	1582	98.74%	99.87%	0.13%
Non-federal Hospitals with no cancer registry	2769	97.87%	76.05%	23.95%
CoC Approved Hospital Registries	1327	100.00%	99.70%	0.30%
In-State Reference Pathology Laboratories	1973	53.47%	49.00%	51.00%
Out-of-State Reference Pathology Laboratories	406	70.44%	62.59%	37.41%
Radiation Therapy Centers	798	66.79%	78.05%	21.95%
Dermatologists	4855	50.26%	35.37%	64.63%
Urologists	4910	34.28%	33.04%	66.96%
Oncologists	3642	48.90%	39.02%	60.98%
Hematologists	1974	54.00%	33.21%	66.79%
Other Physicians	252484	6.86%	5.57%	94.43%
VA Hospitals	132	88.64%	94.02%	5.98%
Military Hospitals	80	96.25%	96.10%	3.90%
Indian Health Services (IHS) Hospitals	25	76.00%	73.68%	26.32%
IHS Health Centers	33	9.09%	0.00%	100.00%
Tribally Owned Hospitals	12	66.67%	62.50%	37.50%
Tribally Owned Health Centers	63	30.16%	0.00%	100.00%
Surgery Centers	2134	47.70%	63.65%	36.35%
Other	832	84.13%	16.86%	83.14%
24. Of the anatomical pathology lab reports your CCR receives, what percentage of these reports is in the CAP cancer protocol checklist format?
	National
100%	2.13% (1)
75% - 99%	6.38% (3)
50% - 74%	8.51% (4)
10% - 50%	21.28% (10)
None	61.70% (29)
Total Respondents: 47
25. Do you require non-analytic (classes 3 and 4) cases be reported to your CCR?
	National
	82.98% (39)
26. Do you require historical cases to be reported to your CCR?
	National
	27.66% (13)
Use of Registry Data
27. Is an analytic data set that meets NPCR standards for data completeness and quality available for research within 24 months after the completion of the diagnosis year?
	National
	93.62% (44)
28a. Will an electronic data file or report be produced this year of cancer incidence in your central registry?
	National
Yes, using 12-month-old data	19.15% (9)
Yes, using 24-month data	93.62% (44)
No Annual Report will be produced this year (Skip to Q28)
Total Respondents: 47
28b. If "Yes", in which format(s) is the most recent "report" available?
	National
Hardcopy	53.19% (25)
Electronic word-processed or pdf file	85.11% (40)
Web page or query system	63.83% (30)
Other	4.26% (2)
Total Respondents: 47
28c. Also, to which population were most recent incidence rates standardized?
	National
2000 U.S. standard population	97.87% (46)
Other	4.26% (2)
Total Respondents: 47
29a. Registry data used for planning and evaluation of cancer control objectives in at least three ways in the past on year:
	National
	95.74% (45)
29b. If “yes”, methods selected:
	National
Additional detailed incidence/mortality estimates	78.72% (37)
Linkage with a statewide cancer screening program to improve follow-up of screened patients	70.21% (33)
Health event investigations	82.98% (39)
Needs assessment/program planning	82.98% (39)
Program evaluation	70.21% (33)
Epidemiologic studies	87.23% (41)
Total Respondents: 47
30a. CCR’s maintaining a log of data requests made for the use of registry data
	National
	100.00% (47)
30b. If “yes”, how many requests per year?
	National
Less than 10 per year	4.26% (2)
11 - 49 per year	31.91% 15)
50 - 99 per year	36.17% 17)
100 - 199 per year	12.77% (6)
200 - 299 per year	8.51% (4)
299 or greater per year	6.38% (3)
Total Respondents: 47
Self Assessment
31. Reasons for any difficulties your CCR experiences in meeting NPCR program objectives for data completeness, quality, and timeliness.
National	Important/	Relevant	Not Relevant/
	Critical		Important
Not enough staff	14.89% (7)	27.66% (13)	44.68% (21)
Not enough staff with the necessary qualifications	23.40% (11)	25.53% (12)	34.04% (16)
Software inadequate	44.68% (21)	34.04% (16)	4.26% (2)
Hardware inadequate	65.96% (31)	17.02% (8)	0.00% (0)
State data exchange not happening	44.68% (21)	25.53% (12)	12.77% (6)
Reporting facilities lack adequate staff	4.26% (2)	21.28% (10)	59.57% (28)
Other	2.13% (1)	10.64% (5)	19.15% (9)
None of the above, our CCR does not have difficulty meeting this objective	8.51% (4)	0.00% (0)	2.13% (1)
32. Which of the following reasons are responsible for any difficulties your CCR experiences in meeting NPCR program objectives for data use.
National	Important/	Relevant	Not Relevant/
	Critical		Important
Not enough staff	10.64% (5)	19.15% (9)	31.91% (15)
Not enough staff with the necessary qualifications	17.02% (8)	12.77% (6)	31.91% (15)
Software inadequate	44.68% (21)	6.38% (3)	4.26% (2)
Hardware inadequate	51.06% (24)	4.26% (2)	0.00% (0)
Other	0.00% (0)	6.38% (3)	14.89% (7)
None of the above, our CCR does not have difficulty meeting this objective.	23.40% (11)	4.26% (2)	8.51% (4)
Outcome Measures - Data Items/Format
33. Does your central registry collect or derive information on cancer cases that includes all data elements currently required by the NPCR?
	National
	100.00% (47)
34. Were the following NPCR recommended data items collected for 2003 cases? Refer to NAACCR standards, Vol II, for description of 2003 data items.
	National
RX Summ - Surg Primary Site	97.87% (46)
RX Summ - Scope Reg LN Sur	97.87% (46)
RX Summ - Surg Oth Reg/Dis	95.74% (45)
Reason for No Surgery	85.11% (40)
RX-Summ-Surg/Rad Seq	78.72% (37)
RX Summ-Chemo	89.36% (42)
RX Summ-Horm	87.23% (41)
RX Summ-BRM	87.23% (41)
RX Summ-Other	87.23% (41)
Rad-Regional RX Modality	82.98% (39)
RX Summ-Transplnt/Endocr	80.85% (38)
Primary Payer at DX	65.96% (31)
Total Respondents: 47
35. Does your CCR collect treatment data from:
	National
Non-CoC approved facilities	97.87% (46)
Freestanding treatment facilities	87.23% (41)
Ambulatory surgery centers	78.72% (37)
Physicians offices	85.11% (40)
None of the above
due to lack of resources
due to lack of training
Total Respondents: 47
36. Does your CCR currently have the ability to collect data on:
	National
Advanced directives	4.26% (2)
Quality of survival (#1780)	14.89% (7)
Pain (or other symptom) management	4.26% (2)
Total Respondents: 47
37. Does your CCR collect data on family history of cancer, NAACCR data item # 360?
	National
	42.55% (20)
38a. Does your CCR have the ability to collect site-specific data on chemotherapy agents used?
	National
	44.68% (21)
38b. If "YES", how are you able to collect these data?
	National
Text	66.67% (14)
Database Field	14.28% (3)
Other	19.05% (4)
39. Does your CCR submit census tract data to NPCR as required?
	National
	70.21% (33)
40. If you cannot submit census tract data to NPCR because of existing legislation in your State, are steps being taken to change this legislation?
	National
41 a. Receives data from DOD’s ACTUR data set
	National
	70.21% (33)
41 b. If yes, frequency
	National
Every quarter	7.69% (3)
Every 6 months	33.33% (13)
Once/year	35.90% (14)
Other	7.69% (3)
Total Respondents: 47
41 c. If yes, have these data proven to be helpful in finding new incident cases?
	National
	76.92% (30)
41 d. If not, why not?
	National
Data are incomplete	5.71% (2)
Data are not in the proper format for us to consolidate with existing records
We don't have time to deal with it
Other	5.71% (2)
Total Respondents: 47
42. Number of VA facilities being sent staff for data collection/abstracting
	National
	6
43. Number of VA facilities where data collected by combo of VA staff and CRR staff
	National
	25
44. How many VA facilities currently report to the central registry indirectly from the VA central cancer registry?
	National
	15
45. If there are VA facilities not reporting, please explain why?
	National
No VA registry	2.13%
VA data rejected due to poor quality	2.13%
VA registry backlog	2.13%
No VA registry staff	4.26%
VA resources and priority	2.13%
VA HIPAA concerns	6.38%
Lack of VA cooperation	8.51%
46. Based on historical data, how many cases per diagnosis year do you estimate are missed (i.e., not ever received) by your CCR because of non-reporting by VA facilities?
	National
	10211
Advanced Activities
54 a. Does your central registry conduct at least one of the following advanced activities:
	National
	91.49% (43)
54 b. If Yes, which activities?
	National
Receipt of encrypted case reports	50.98% (26)
Automated casefinding via interfacing with pathology reports, disease indices, or other data sources in addition to vital records	37.25% (19)
Survival analysis	23.53% (12)
Linkage with the National Death Index for survival analysis	19.61% (10)
Quality of care studies	35.29% (18)
Clinical Studies	13.73% (7)
Publication of research studies using registry data	58.82% (30)
Geocoding to latitude and longitude	66.67% (34)
Other innovative uses of registry data as determined by CDC	19.61% (10)
Total Respondents: 47
55. Do you receive electronic records from any of the following?
	National
Anatomical pathology labs	70.21% (33)
Hospital radiology departments	4.26% (2)
Physician offices	23.40% (11)
State-wide disease index	8.51% (4)
Freestanding radiology centers	29.79% (14)
Hospital disease indices	31.91% (15)
Nuclear medicine facilities	2.13% (1)
Other	12.77% (6)
None	17.02% (8)
Total Respondents: 47
56. If you receive electronic pathology laboratory reports, in which format do you receive them?
	National
NAACCR format for pathology reporting (NAACCR Vol. II, Version 10, Chapter VI)	29.79% (14)
HL7, Version 2.X	14.89% (7)
HL7, Version 3.0	10.64% (5)
Other	40.43% (19)
None	31.91% (15)
Total Respondents: 47
57. For which of the following needs of cancer surveillance have you been in contact with your Health Department's PHIN / NEDSS staff regarding?
	National
Anatomical pathology laboratory reporting	57.45% (27)
Physician disease reporting	23.40% (11)
Other healthcare data reporting	6.38% (3)
None of the above	38.30% (18)
Total Respondents: 47
58. Does your CCR geocode cancer cases by latitude/longitude to enable mapping or reporting of cancer cases?
	National
	76.60% (36)
59. How often does your CCR link to the National Death Index (NDI)?
	National
Every year	10.64% (5)
Every other year
Every 3 - 5 years	6.38% (3)
Never	70.21% (33)
Other	12.77% (6)
Total Respondents: 47
60. For which of the following has your NDI linkage proven to be useful?
	National
Casefinding	11.76% (2)
Survivorship	58.82% (10)
Data quality	23.53% (4)
Research	41.18% (7)
Other	17.65% (3)
Total Respondents: 47
61. Do you update your database following NDI linkage?
	National
	58.82% (10)
62. With which databases has your CCR linked its records in the past year (2005) for follow-up or some other purpose?
	National
State Vital Statistics	95.74% (45)
National Death Index	19.15% (9)
Department of Motor Vehicles	17.02% (8)
Department of Voter Registration	8.51% (4)
Medicare (Health Care Financing Administration)	12.77% (6)
Medicaid	10.64% (5)
Managed Care Organizations	6.38% (3)
Breast and Cervical Cancer	48.94% (23)
Blue Cross/Blue Shield	2.13% (1)
Hospital Discharge	25.53% (12)
Other	55.32% (26)
None	4.26% (2)
Total Respondents: 47
63. Has your registry downloaded any of the SNOMED International tools (the SNOMED CT CLUE Browser, the SNOMED CT Technical Reference Guide, the ICD-O topography to SNOMED CT Map, the SNOMED CT User's Guide, and the full set of the 42 SNOMED CT encoded CAP cancer protocols and checklists)
63a Does your registry use any of these tools?
	National
	17.02% (8)
63b If no, do you have plans to use them in the next year?
	National
	28.21% (11)
63c Do you need additional information or training on these tools?
	National
	65.96% (31)
64 Has your CCR planned or developed a cancer data collection system that will be integrated into a Public Health Information Network (PHIN) compatible health surveillance system?
	National
	25.53% (12)
65. Has registry data been used in the past year (can be ongoing) for the purpose of comprehensive cancer control planning, breast and cervical cancer programs, or any other cancer program implementation?
	National
Comprehensive Cancer Control (Planning or Implementation)	95.74% (45)
Breast and Cervical Cancer Program (Planning or Implementation)	87.23% (41)
Other Cancer Program (Planning or Implementation)	51.06% (24)
Total Respondents: 47
66. Have any of the above uses of data (Q65) been included in a journal publication?
	National
	21.28% (10)