m 1DI7 nT)lr r%V LITT LI nYl 'nrlf'Tf%l@AT %g VI i:iEL-JICATL PROGRAMS NEE6S REGISTRY PROGRAMS AND TRAINING I troduct-2 on The survey reported here was undertaken to meet two objectives. The first was to identify tumor registry programs being carried out under the auspices of Regional Medical Programs as well as their purposes and characteristics. The second objective was to assess the need for training by RMP registries, including such'as pIects as content, mode, duration, and location of training. Methods A questionnaire (see Appendix A) was developed And mailed to the 71 regional and area coordinators of Regional Medical Programs identified in the Regional Medical Programs Service Communication issue of June 11, 1970 (Volume 4. No. 28 S). A second mailing of the questionnaire was sent to those not responding within two months to the first mailing. Responses were received from 65 (91.5%) of the 71 regions or areas. Four area coordinators responding indicated that their registry@activi- ties were carried out within the framework of a Regional Program and that the response fr'm the regional coordi ator would provide the 0 n required information. Thus the following findings and discussion relate to the 61 remaining questionnaires returned to us. Findings Number of PM Supported Registries Twenty-.sdven regions or areas (Table 1) indicated that they sup- port tumor registry programs. Of these, 24 are currently funded and data is currently being entered into 23 of these systems. Types of Registries Twenty-three of the 27 registries within RMP programs are central registries, while 1 is a single hospital-registry program. Three of the 27 programs regard themselves as specialized in function. Of the latter, one (New Jersey) assists primarily in the organiza- tion and maintenance of individual hospital re istries, a second 9 (Missouri) will include only breast and colon cancer ca ses, the third (California-Area I) will include o ly cases seen by radia- n tion therapy departments. lSurvev carri-pri- nllt-- by General Tumor Registry, Cancer Research Institute, University of California, San Francisco, under Contract No. HSM 110-70-350 Except for basal and/or squamous cell cancer of the skin, all but two of the registries (one which did not answer the question and the Missouri registry referred to above as including only breast and colon cancer) include all sites of cancer, in the tumor registry system. Of 26 registries responding, half (13) indicated that they register.some benign tumors. Twenty-six (96%) of the registry sys- tems (all except New Jersey) include regular follow-up of all cases in the registry. Of the 27 registries reporting, 11 (Table 2) identified themselves as population based. In this list there is some overlap in that the Intermountain Registry includes several of the other registries identified, i.e. Idaho, Nevada, Wyoming. However the Intermountain Registry also includes Utah which is not listed elsewhere. These i overlapping programs are treated independently within this report since it is not unusual for active smaller programs to be components of larger programs. An excellent example of this would be the End Results Program of the National Cancer Institute which brings together data provided by active registry programs including the Connecticut Tumor Registry, the California Tumor Registry, as well as a number of individual hospital registries. Registry Size Table 3 gives the frequency distribution of the approximate number of new cases entered into each registry each year for the 22 r.egis- tries which provided this information. Only 2 registries add less than 1,000 cases per year while 10 regis' tries accession more than 3,000 cases. The 3 largest systems each enter between 9,000 and,10,000 cases per year. Purposes of Registry Programs A check list of 6 purposes of registries was included on the questionnaire. Responses to the questionnaire indicated that all registry programs were established to serve at least 3 of the purposes included on the list. All 27 of the @ supported registries are for the purpose of helping to assure, continued medical supervision of the cancer patient through follow-up and, also to assist in the continued cancer education of the medical Community. Twenty-fiv6 (93%) of the registry systems are to assist in planning activi- ties, i.e. to assess the magnitude of the cancer problem in the hospitals and/or community represented by the registry. Twenty (74%) plan to con- tribute to the evaluation of increased frequency of early diagnosis and improved cancer mana ement following the advent of RNP. Research on' the 9 natural history of cancer as well as on the epidemiology of cancer is to be carried out by 17 (63%) of the registry programs. Four registries identified goals other than those described above. Three of these are in the area of therapy evaluation and the other directs attention to studying the relationship between environment anticancer. Training Needs Of the 25 registries responding to this section od training needs, :18 (72%) stated that they would be interested in sending registry.. personnel to San Francisco for training in our Tumor Registry Training Program. Sixteen registries (61%) out of 24 responding indicated that they would be interested in sponsoring a 3-5 day rkshop in their own region. wo Training Content For the registries interested in training for their personnel, we requested information on desired training content by job category .of persons to be trained. We defined the following job classifica- tigns: central registry supervisor, data collectors data analyzers, and individual hospital registry secretaries. Data collectors are persons such as abstractors and coders. Data Analyzers are registry personnel who function as statisticians or computer programmers. T-taining content was divided into two major areas. The first relates to registry operations and the second'deals with knowledge of the medical aspects of cancer. The training areas related to registry operations are: central registry management, single hospital regis- try management, abstracting and staging, follow-up, data coding and processing, survival analysis, and preparation of reports. Training areason the medical aspects of cancer include: human anatomy, path- ology, epidemiology,'methods of diagnosis, treatment rationale, and cancer of specific sites and systems. Table 4 gives the number of registries interested in sending personnel within a given job classification to San Francisco for training. Thus 17 of the 20 registries desiring training @require this training for central registry supervisors. Fifteen desire training for data col- -lectors, 12 for data analyzers and 13 for individual hospital secre- taries. It should be emphasized that these,figures represent numbers of registries rather than individual trainees. The desired training content by personnel category is given in Table,5 and is summarized below: Central Registry Supervisors a) Registry Operations Seventeen regions with central registries indicated a need for training for their supervisors. The 2 most frequently requested training areas were central registry management and preparation of reports. Such training was desired by 15 regions. Twelve regions desired training in follow-up techniques and survival analysis. Next most frequently C.; t rcquc5tcA- was training ijrL abstracting and staging and s'L]:Lgle hospital registry management. b) Medical Aspects of Cancer There was considerable uniformity in the response to each of the training areas listed. Between 8 and 12 registries desired training in each of the subjects listed. Data Collectors a) Registry Operations Of 15 registries expressing a need for training of data col- lectors (coders or abstractors),'14 desired instruction in abstracting and stagingi In order of decreasing frequency the other training content requested'wdre follow-uplprepara- tion of reports, data coding and processing, central registry management, single reg@stry management, and'survival analysis. b) Medical Aspects of Cancer Other than epidemiology which was requested by only 1 registry, all of the other topics were almost uniformly in demand in that from 9 to 12 regions indicated a need for their inclusion. Data Analyzers a) Registry Operations Twelve registries indicated the need for training of data analyzers (programmers or statisticians). Eight of these desired training in data coding and processing followed, in declining frequency, by preparation of re orts and survival p @ysis, follow-up, central registry management, and abstract- ing and coding. b) Medical Aspects of Cancer Five of the 12 registries responding desired inclusion of epidemiology in the training of their data analyzers. Next most in demand were lectures on pathology and treatmentrationale followed by human anatomy, cancer of specific sites and systems., and methods of diagnosis. individual Hospital Registry Secretary a) Registry Operations Thirteen registries indicated the need for the training of individual hospital registry secretaries. Ten of these 13 desired training in each of the areas of single hospital registry management, abstracting and staging, and follow- up. Seven requested training in preparation of reports, 5 in survival analysis, 2 in data coding and processing and 1 in central registry management. b) Medical Aspects of Cancer Other than epidemiology for which there were no requests, each of the other medical topics were in uniform demand with either 8 or 9 registries desiring training in these areas. Length of Training The questionnaire included a section for Regions to check the period for which their personnel would :be availab le for training in San Francisco. Two-weeks of training was the most frequently checked period for each of the 4 personnel cat egories. Overall this was followed in turn by one- month,, one-week and two-months of training, respectively. Mode of Training In developing self-instructional programs in registry methodology the respondents indicated a clear preference for a programmed instruction text, followed, in turn, by a packaged video-tape and film strip pro- gram, and finally by a correspondence course. Discussion The present survey shows that there are 26 central registry programs and 1 single hospital registry program supported by Regional Medical Programs indicating the considerable extent to which RMP is involved in the cancer registry field. Of the activities referred to, 23 of the systems are actually operational at the present time in the sense that data are entering into these programs. The size of the registry systems, is also quite impressive in that all but 2 of the reported systems enter at least 1,000 cases per year and the 3 largest systems enter between 9,000 and 10,000 cases per year. All of the reported registry systems are intended to serve a variety of purposes. The most common-purposes to be served are the assurance of continued medical supervision through follow-up and assistance in the continued cancer education of the medical community. ' Large pro- portions are also intended to help in planning And for evaluation of early diagnosis and improved cancer management. ;Aore than 60% of the regi stry programs are intended to be active in research on the natural history of cancer and on the epidemiology of cancer. The magnitude of the registry Activities supported by RMP as well as the important purposes to be served by these registries indicate a need for facilities for training of registry personnel. This is recognized by the RNP areas themselves in that 72% of the programs with registries were interested in sending personnel to San Francisco for training within our program. Sixty-seven percent of the regis- tries responding expressed an interest in sponsoring training work- shops to be conducted by our staff within their own RNP areas. in response to questions concerning desired content of training for their personnel, it was demonstrated that the needs vary considerably according to the role to be carried out within a registry programi Those in a supervisory position place more emphasis on training in management procedures than those performing jobs as data collectors, analyzers or individual hospital registry secretaries. Even with different areas of emphasis by -job category there was nevertheless within each job classification considerable dema@for a.broad sp6c-, trum of training content. Thus it was well recognized that in addi- tion to a knowledge of basic registry operations, there is an impor- tant need for the personnel of a tumor registry program to have a strong understanding of the subject matter of cancer including topics such as anatomy, pathology, epidemiology, methods of diagnosis, and treatment rationale in addition to knowledge of cancer of individual sites and systems. It has been the philosophy of the training program at San Francisco that the quality of the data recorded within A registry system prim- arily reflects the competence of the personnel and their understanding of cancer. In a field such as cancer in which definitions and classi- fication systems are not yet standarized, the demands on registry personnel in terms of an understanding of the subject of cancer are particularly heavy. The registry system itself may become the key to making progress in the required standardization of terms. For example there is much emphasis currently on standardizing rules for staging of cancer. If a particular stage category is,to include those patients with a similar prognosis, knowledge of the required gr uping of cases can emerge only through registry systems set up to study pro- blems of this kind. A further corollary of this is that in order to do such a study, it is necessary to assure that the registry is geared to the recording of the necessary information and that the quality of the information recorded is high. Of equal importance with the-need to know the technical operational aspects of a registry program, it is extremely important that registry personnel be aware of functions that a registry program can serve as well as those uses for which a registry program may be inappropriate. For example, most registry programs would be on extremely tenuous grounds if they felt that through their activities they could pro- vide definitive information regarding therapy evaluation. Without controlled clinical trials this is not possible. On the other hand there are important contributions of registry pro- grams which are sometimes not apparent. For example as a result of research activities on the natural history of various forms of cancer carried out by tumor registries, it has been noted that there has been an improvement in the quality of medical record keeping in hospitals participating in such studies. It is also of importance that registry personnel and those guiding registry policy, should recognize that with the changing concepts in.the field of cancer, procedures within registry programs must be adaptable to changes reflecting our improved understanding of these diseases as well As improved technology in data storage and retrieval methods. Tumor registries have in the pa@t been criticized as not being of adequate service,to the individual physician. How best to serve the physician and to encourage his interest and participation in registry work is an area yet to be pursued more actively. Perhaps through regular reports presented in an interesting and brief form there may be some additional impact. Perhaps through presenting the physician with a list of each of his cancer patients with their latest follow- up status, there might be some improvement in the.relationship between the registry and the physician. This issue is of extreme importance since each of the registry programs identified in the present survey have indicated their hope that the registry would contribute to the continued cancer education of the medical community. What must be recognized however, is that a cancer registry activity must not be confused @ith the cancer program. The cancer registry activity is only part of a cancer program and its activities should be quided by the purposes of that entire program. Therefore the burden of defining the registry program falls primarily on those defining the cancer pro- gram itself. Hopefully this guidance to the registry will also include indications of ways in which it may be most useful in serving the medi- cal community. Since all of the registry programs surveyed plan to assure continued medical supervision of the cancer patient through folloiv-up, it is important that attention be paid to various,approaches to follow-up as well as possibilites in varying follow-up schedule, perhaps accor- ding to type of cancer involved. With the progress that is occurring in the medical management of cancer patients, it is furthermore impor- tant that the concept of follow-up of cancer patients should provide for assessment of the patient's status in order to gain some insight into the quality as well as quantity of survival. More than 60% of the registries indicated their intention to carry out research on the natural history of cancer andtalso on the epi- demiology of cancer. In view of the fact that approximately 0 of the registries reporting indicated that they are population based, the potential for epidemiologic studies for these registries may be quite good. However it is of importance to recognize.that research of this nature requires personnel with training and exper- tise both in the subject matter of cancer and in the statistical and epidemiologic methodology to be employed. Implications For Tumor Registry Training Program The extent of development of tumor registry programs under sponsor- ship of Regional Medical Programs suggests a need for a continuing and developing program that will help meet the teed for training resulting from these activities. The nature of the training program must be responsive to the purposes to be served by the various registry programs. Thus it would appear.that since the preponderance of the M2 supported registries are centralized systems that further develop- ment of the training program to meet the needs of central registry per- sonnel should be given due consideration. On the other hand training needs of personnel of individual hospitals must also be met since the backbone of any central registry program is the quality of the source material from the individual participating institutions. There was recognition by the regions surveyed of the need for training. Considerable interest was expressed by RMP supported registry programs in sending registry personnel to San Francisco for a period of intensive training. Increased emphasis on two-wedk programs 'of training appears indicated from the responses to desired duration of training in San Francisco. From the responses to the question dealing with training content, it is now possible to better plan for the category of trainees who will come,to San Francisco as well as the desired training content In addition to training in San Fratcisco, approximately two-thirds of the regions responding indicated their interest in sponsoring a 3 to 5 day workshop in the local area. Such workshops offer a mechanism for providing limited training to large numbers of registry personnel. The favorable response to such workshops suggests the value of continued development of training material and teaching techniques to optimize the benefit to participants in such workshops. Additional emphasis on developing workshops that will be profitable to both inexperienced and experienced registry personnel may be indicated. Training at two levels was offered at the workshop held at the Univ6rsity of California in Los Angeles in January of 1971. Pursuing this a step further, it may also be useful to plan for training of administrators and physicians in a workshop of one or two days to provide for them an overview of the .@registry field, its problems, and potential. ,@The response to the question on self-instructional material, points @up the desirability of further work to be carried out in the prep- -.@aration of a programmed instruction text as well as the material @:for a packaged video -tape and film strip program. Table 1. PM-Support@d Registries California-Area I Colorado-Wyoming Georgia Greater Delaware Valley Illinois Intermountain Iowa Kansas Metropolitan Washington D.C. Missouri Mt. States-Idaho Mt. States-Montana Mt. States-Nevada Mt. States-Wyoming New Jersey New Mex co Nortl; Carolina North Dakota Oklahoma Puerto Rico South Carolina Susquehanna Valley Tennessee Mid-South and Memphis Texas Virginia Washington/Alaska-Seattle Western New York Table 2. Population-Based Registries 1. Intermountain 2. Iowa 3. Kansas 4. Metropolitan Washington, D.C. 5. Mt. States-Idaho 6. Mt. States-Nevada 7. Mt. States-Wyoming 8. Puerto Rico 9. Susquehanna Valley 10. Tennessee Mid-South and Memphis 11. Western New York Table 3 Registry Size No. of New Cases Per Y6ar Number of Registries (1000's) 2 1-2 5 2-3 5 3-4 4-5 .2 5-16 Total 22 Tab le 4. Registries Requesting Training by Personnel Category Personnel CategoU No. of Registries Central Registry Supervisors 17 Data Collectors 15 Data Analyzers 12 Individual Hospital Registry Sedretarieg, 13 Total Number of Registries Requ6sting Training 20 Table 5. Number of Registries Regilpstfng Spt-.cifir Training Content by Personnel Category I Central Data Collector Data Analyzer Individual Personnel Registry (Coder, (Programmer, Hospital Registry Category Supervisor Abstractor) Statistician) Secretary .Training Content Number of Registries Registry Operations 1. Central Registry @Management 15 5 1 2. 'single Hospital Registry Management 2 10 3. Abstracting and Staging 10 14 1 10 4. Follow-up 12 7 10 5. Data Coding and Processin 10 6 2 9 6. Survival Analysis 12 6 7. Preparation of Reports 15 7 6 7 Medical Aspects of Cancer 1. Human Anatomy 10 12 3 9 '2. Pathology 11 12 4 8 3. Epidemiology 8 1 5 - 4. Methods of Diagnosis 2 5. Treatment Rationale 12 12 4 8 6. Cancer of Specific Sites and Systems 10 0 Total Number of Requesting Registries 17 15 12 13 OMB 68-S-70066 CANCER RESEARCH INSTITUTE (Approval Expires 1-31-71) UNIVERSITY OF CALIFORNIA SAN FRANCISCO SURVEY OF REGIONAL MEDICAL PROGRAM TUMOR REGISTRY ACTIVITIES AND TRAINING NEEDS PLEASE TYPE OR PRINT RMP Region: RMP Coordinator: Does your Region support a Tumor Registry Program? Yes- No if NO, PLEASE DISREGARD remaining questions and return questionnaire to us promptly. IF A TUMOR REGISTRY PROGRAM IS SUPPORTED BY YOUR REGION, PLEASE COMPLETE THE REMAINDER OF THE QUESTIONNAIRE. Name of Registry Program: Director: Address: CHARACTERISTICS OF REGISTRY PROGRAM Please fill in the blanks provided for all succeeding questions. I. Status of Registry Program a. Is your registry program currently funded by RMP? yes no b. Is data currently entering the registry system? If yes', yes no when did data collection begin? (Mo. yr.) II. Type of Registry a. Single hospital registry program (registry consists of yes no data from only one institution) b. Central registry program (registry consists of data from yes no more than one hospital) c. Other type of registry program, e.g. special purpose regis- yes no try. Describe: (if mote space is needed, use reverse side) III. Sizd and Scope of Registry a. Approximate number of new cases entered into your registry each year b. Are cancers of all sites included in your registry? If no, yes no indicate which cancers are excluded: c. Are you including selected benign tumors in your registry? ves no RMP @urvey page 2 d. Is your registry population-based, i.e. do you record all yes no cancers diagnosed in a geographically defined population group? (For example, the Connecticut Tumor Registry re- cords all diagnoses of cancer occurring among the entire population of the state of Connecticut.) e. Does your system include regular follow-up of all cases yes no in your registry? IV. Purposes of Registry (Check all that apply) -a. To assure continued medical supervision of the cancer patient through follow-up b. To assist the continued cancer education of your medical community c. Planning (to assess magnitude of the cancer problem in hospitals and/or community) d. Evaluation of increased frequency of early diagnosis and improved cancer management following the advent of RMP e. Research on the natural hist'ory of cancer -f. Research on epidemiology of cancer . Oth6r, (specify) TRAINING NEEDS I. Tumor Registry training programs of various duration are held in San Francisco. Would you be interested in sending any of your registry personnel to San Fran- cisco for participation in a training program? (Question IV provides a check- list of training content for various categories of registry personnel) Yes No II. In addition, a limited number of three to five day workshops may be offered out- side of San Francisco. Would you be interested in sponsoring such a workshop in your area? Yes No- III. Consideration is being given to the development of the following self-instruc- tional programs in registry methodology. Which do you feel might be most U66- ful in meeting your training needs. Please rank in order of preference (Ist, 2nd, 3id) a) Packaged video-tape and film strip program b) Programmed instruction text c) Correspondence course RNP turvey page 3 IV. If you would be interested in training for your registry personnel, please check the desired training content and time available for training for each personnel category to receive training. For your convenience, blanks are provided for further suggestions regarding training content in section on "Other Specific Topics". REG18TRY PERSONNEL CATEGORY 0 Cd -W 14 r4 cd 4J $4 $4 rn a) TRAINING CONTENT 0 0 -W $4 0 $4 44 m 4i U) a) M -H z u -H $4 -ri u N 14 fJ a) u -W > ul w rA $4 Cd CL 4i -Hw Ca 0) 0 m .r4 10 $4 00 ol 0 I " a) a) :I $4 4i -ri 4j U $4 (n a) bo Cd > m $4 co 10 (d 0 -W H r4 -W 0 -W $4 bo co a) 4J REGISTRY OPERATIONS M.D. non-M.D. H $4 0 1. Central registry management 2. Single hospital regis- try management 34 Abstracting and staging 4. Follow-up 5. Preparation of reports 6. Data coding and processing MEDICAL LECTURES 1. Human anatomy 2. Pathology 3. Methods of diagnosis I 4. Treatment rationale 5. Cancer of specific sites and systems Survey page 4 $4 0 ;4 -W w bo u N W $4 CD >1 $4 0 0 0 CO $4 u 0 4J fj -HW $4 CO Cd m m w 4i -W m 0 CO 0 OTHER SPECIFIC TOPICS M.D. non-M.D. 0 1. Epidemiology 2. Survival analysis 3. 4. PERIOD AVAILABLE FOR TRAINING 1. Two weeks 2. One month 3. Two months V. Remarks Date Signature