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The MDPH engaged in a variety of community outreach efforts to increase study awareness among the South Boston community and encourage study participation among both potential cases and controls. The MDPH worked with several current/former South Boston residents diagnosed with SSc and community advocates to organize the community advisory committee. The CAC consisted of South Boston residents as well as representatives from the South Boston Community Health Center, recognized community leaders, local medical professionals, Congressman Stephen Lynch (who helped launch the study while he was still with the Massachusetts State Senate) and State Senator Jack Hart as well as representatives from the MDPH/BEH. The CAC facilitated a working partnership between the community and the MDPH. In addition, the CAC provided a means for community members to provide input and actively participate in the investigation. The CAC met regularly at the South Boston Community Health Center during the past 9 years so that meetings were accessible to all community members.
During this time, written progress reports were also prepared by MDPH in an effort to keep the CAC apprised, particularly during the analytic and report preparation period. As mentioned, with input from the CAC, the MDPH developed the outreach flyer aimed at recruitment of study participants.
Given the passive recruitment process, potential controls were provided the opportunity to refuse study participation by simply not responding to contact letters and thus terminating future attempts by MDPH at study recruitment. Therefore, the MDPH conducted a variety of community outreach efforts in order to increase study awareness and successfully recruit study participants. The CAC took an active role in determining outreach efforts to bring awareness of the study to the community. The committee developed a list of community organizations and centers, churches, schools, local business establishments and media outlets to target outreach efforts. The CAC then established subcommittees to canvas each of these groups with flyers. The MDPH and CAC members also participated in several community fundraisers and events to increase study awareness, including local charity walks and road races.
Outreach efforts in South Boston began during the summer of 2001. A flyer blitz was coordinated in January 2002. The bulk of the outreach activities were conducted during the spring of 2002 and included a media spot on cable news and neighborhood flyer drop campaign in March, a table at South Boston Environmental Health Night, a BEH website press release in April, and a resident letter from local legislators in June 2002.
Further, the MDPH’s Associate Commissioner and Director of the Bureau of Environmental Health participated in a community talk show for cable television with local state legislators and Liz Lombard, a CAC member who initially asked that MDPH conduct the study, to explain the investigation and encourage participation from South Boston residents. The study was featured in several media stories by local and national news organizations including features on ABC Nightline and was highlighted in a Self Magazine article in June 2001.
H. Study Participation/ Response Rate
Physical examinations and medical record review identified 45 individuals who had a confirmed diagnosis of SSc or SLE and were either current or former residents of South Boston during the period 1950 to 2000. Of the 45 individuals with a confirmed diagnosis of SSc or SLE, 41 agreed to participate in the study and were enrolled as cases (91%). Of the 830 individuals selected as potential controls, 219 agreed to participate in the study (26%). Of these, 154 met study eligibility criteria and were matched to cases. The total study sample therefore consists of 195 individuals. The study sample included 41 confirmed cases of SSc and SLE and 154 matched controls. The overall response rate for the study was 22% (195 study participants/875 eligible population).
I. Data Collection 1. Questionnaire
Once the study participation form was received, study participants were contacted by telephone to schedule a personal interview or a proxy interview in the case of deceased study participants with MDPH/BEH research staff. MDPH staff trained in standardized non-directive interviewing techniques administered structured questionnaires via personal interview. A rigorous, standardized method was used for all cases and controls in obtaining information by self-report, including personal and family medical history. Signed consent to participate in research was obtained at interview. Interviews were approximately 60 minutes in length and interviewers were blinded to the study hypothesis and to the disease status of the participants. Interviews were conducted at various locations within the South Boston Community (i.e., the South Boston Community Health Center, the Neighborhood House and the South Boston Action Center). Study participants had the opportunity to schedule an interview during the weekdays, weeknights and weekends.
The questionnaire elicited information from study participants about demographics, residential history, occupational history, family history, medical history, reproductive history and questions regarding hobbies and recreational activities in South Boston. Approximately one week prior to the interview appointment, study participants were mailed a reminder and confirmation notice of the interview. A response log and contact sheet was used to record the outcome of each contact attempt. If a study participant failed to keep their scheduled interview appointment, a follow-up letter and telephone calls were made to reschedule the interview. If there was no response after several attempts to contact a study participant by telephone, a follow-up letter was sent by certified mail to the individual requesting that they contact MDPH to reschedule the interview. After no response to certified mail, the participant was considered as a refusal and unenrolled.
2. Data Management
Each study participant was assigned a unique numerical identifier to protect the confidentiality of study participants. At the completion of data collection through study participant interviews, all questionnaires were reviewed for data coding. MDPH/BEH research staff reviewed the individual questionnaires to check the completeness of the responses and accuracy of the collected data. If information was missing, ambiguous or erroneous, study participants were contacted by telephone for follow up and the correct information noted and initialed on the questionnaire. After completed questionnaires were reviewed for quality and completeness, the data was entered into a Microsoft Access database and then exported to a SAS dataset for statistical analysis. All confidential data was password protected and kept in locked files.
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