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B-CLL SPECIFIC QUESTIONNAIRE EMPHASIZING RISK FACTORS ASSOCIATED WITH ENVIRONMENTAL EXPOSURES AND FAMILY HISTORY   J LYBARGER   INTRODUCTION  
    The collection of medical information has historically been the central component of medical practice. The medical history has been critical in the development of a diagnosis for patient care. With the expansion of public health investigations and research, this idea has been maintained, and the counterpart of the medical history has become the community health survey.  As the practice of clinical medicine and public health have progressed, the need for better questionnaires, forms and record systems for the collection, analysis and maintenance of medical information has been recognized. Therefore, most medical systems, ranging from the routine physician's practice to the most sophisticated epidemiological study, use developed medical history forms or questionnaires.
  DESIGN  
    The design of a questionnaire is a sophisticated activity not to be conducted haphazardly. The purpose of a standardized format for the routine collection, analysis, and maintenance of health information is to obtain accurate information. It is well recognized that the manner and wording of asking questions may easily influence the understanding and response of the respondent, whether that person is a patient, survey participant, or study subject.  Inaccuracies generated by these factors may have important implications to the physician's ability to reach an accurate diagnosis, and will prevent the epidemiologist from reaching an accurate conclusion from a study. Such inaccuracies in epidemiology are called biases. Epidemiologists attempt to prevent some types of biases through the use of well designed questionnaire forms.  These questionnaires should be designed and reviewed by experienced researchers and tested to identify questions which are ambiguous, socially influenced, or may otherwise result in incorrect answers. This is further complicated in health research where control or reference populations are also interviewed. For these studies, the questionnaire should not lead to artificial differences in the responses in the two groups. It is the recommendation of this workshop that a questionnaire be considered by researchers conducting clinical evaluations or research studies of persons with B-cell lymphoproliferative disorders. The use of a standardized research tool would improve the ability to combine data for analysis and study findings from multiple sources.  Sources might include the combination of multiple cases or case series, the participant information from several studies, or the integration of findings and conclusions from several studies, such as a meta-analysis. However, it must be recognized that clinical evaluations and many types of health studies will be conducted, each with varying designs and analytic hypotheses. Although it would be useful if all activities would obtain the identical and detailed medical information, logistical, fiscal, and other realistic considerations make this type of effort unlikely. In order to facilitate the collection of a minimum set of core elements for research projects of B-cell lymphoproliferative disorders, a set of recommended data elements has been developed. It is suggested that information be collected for each of these elements as a first step in obtaining similar data.
  CORE QUESTIONNAIRE DATA SECTIONS  
      I. Identifying Information. Name, Address, City, State, Zip Code, Telephone Number,
         Social Security Number, Relationship to the Subject (if needed for surrogate interviews).
    II. Demographics. Age, Date of Birth, Gender, Race, Ethnicity, Socioeconomic Status,
         Education Level, Income.
   III. Household Information. Number of Persons in the Household.
   IV. Family History. Identification of Parents, Siblings and Grandparents, Vital Status, Cause
         of Death, Age (or at time of death), Identification of Illnesses of interest in immediate or
         extended family.
    V. Review of Systems Medical History.
  VI. Residential History. Home/Geographic Environment, Lifetime Household residential
         location, and # of years at each residence.
 VII. Occupation. Usual Lifetime Occupation Listing of Lifetime Jobs, Exposures to Hazardous
         Substances, Listing of Substances.
VIII. Medications Chronic Use medications. Medications of concern.
   IX. Diet.
    X. Environmental Factors. Electromagnetic Fields, Energy Sources, Hobbies, Hazardous
         Substances, Residential Area, Household herbicides/pesticides, Personal Products,
         Cosmetics, Hair dyes, Lotions, Health Products Medicinal herbs, Home remedies, and
         Pets/Pet Illnesses.
  SUPPLEMENTAL QUESTIONNAIRE:  
    Family History Purpose: The purpose of this supplement to the questionnaire is to develop full pedigree/family tree information in order to link family members with illness or other genetic risk factors.
  I. Identify Family Members. Parents, Siblings, Grandparents, and Aunts/Uncles/Cousins.
II. Risk Factor Identification. Age of Each Member, Vital Status of Each Member, Age at
     Death, Cause of Death, and Identification of Members with Illness of interest.
 
    Each research project or clinical evaluation may require a different degree of detail for each of these elements. For example, a clinically based research project evaluating the influence of a family history may require detailed knowledge of all family members for several generations including all causes of death, ages, and relationships in order to develop pedigrees for each participant.  But, an epidemiologic study of environmental risk factors for developing B-cell lympho-proliferative disorders may require only a limited knowledge of whether a participant does have a family history of a similar disorder.  Therefore, recommending a common set of data elements does not assure complete consistency of the data nor eliminate biases generated by the manner of data collection. Questionnaires for studies with similar designs and analytic hypotheses would benefit by the standardization of some minimal set of data and question design. Researchers should seek colleague and identify opportunities to standardize data collection tools when possible.
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