The first step in data collection involved mailing a packet of self-administered questionnaires and standardized measurement scales to the participant's home. This packet also contained a cover letter explaining the contents of the packet and informing participants of their clinic date and the nature of clinical assessments they would receive. Every effort was made to schedule clinic appointments within four to eight weeks from the time of the initial letter. The cover letter instructed all participants to bring their completed packet with them at the time of their appointment and to fast (i.e., refrain from eating or drinking anything other than water) from midnight on the night before their appointment. In many cases, the letter also contained information on transportation arrangements. All participants were also called one or two days prior to the clinic visit to remind them of their appointment and of the need to fast.
The second phase of data collection involved participants attending the Gerontology Research Unit at RLAMC [Rancho Los Amigos Medical Center] where they received four basic clinical assessments. These included a family and social history, conducted by a medical sociologist; a psychological evaluation, conducted by a clinical psychologist; a medical history and physical exam, conducted by a certified geriatrician or geriatric fellow; and, a functional evaluation conducted by a physical therapist. The original proposal also stipulated a fifth assessment of bone density testing to screen for osteoporosis. Unfortunately, due to difficulties with the bone densitometer equipment in the Radiology Department at RLAMC not all of the 265 participants received this assessment. It was not until one and a half years into data collection that we were able to implement this procedure by making arrangements with a private facility located in Long Beach, CA. Through the director of this facility, Dr. Victor Ettinger, we arranged for participants to receive bone density testing free of charge in exchange for whatever payment Dr. Ettinger could obtain from their health insurance coverage. In those cases where the participant was on Medicaid or had no insurance, Dr. Ettinger agreed to provide this assessment free of charge in exchange for access to the data. Once basic data collection was completed for the total sample, all subjects who participated in the study prior to our arrangement with The Bone Diagnostic Center, except those in the SCI subsample, were notified of their eligibility to receive bone density testing free of charge. In some cases we were even able to provide transportation for this follow up evaluation. Through this strategy we were able to recover an additional 30 participants, primarily from the polio and control samples, for whom we otherwise would have had missing data.
Unfortunately, reliance on an outside facility for bone density testing resulted in missing data for those individuals who could not transfer to the examining table either independently or with the help of two assistants. This occurred because the Bone Diagnostic Centre was not equipped with a Hoyer Lift to accommodate individuals with server disabilities. All together we lost data from 22 participants (12 polio and 10 stroke) because of this barrier.
Despite this obstacle, bone diagnostic testing turned out to be a very popular feature of our study. In fact, in many cases, particularly for the polio sample, willingness to participate was motivated primarily by the desire to receive the results of a free bone density evaluation.
The research clinic for the LLE Study was held weekly on Wednesdays and was scheduled to begin with the arrival of three participants between 8:45 and 9:00 A.M. Unfortunately, delays were a frequent occurrence due to traffic congestion, occasional inclement weather, and the difficulties of transporting disabled individuals from as far away as 25 miles. Clinic procedures began with the processing of each participant's paper work to make sure all consent forms had been signed and the packet of self-administered questionnaires was complete. Every effort was made during the clinic to fill in missing data, whose frequency varied considerably by subsample, with stroke participants having the highest incidence of incomplete questionnaires. Photographs of all participants were also taken at the start of clinic as a way of refreshing clinicians' memories when it came time to dictate the results of their assessments. The next step was the collection of blood and urine samples for laboratory analysis. The blood sample was drawn by a certified phlebotomist from RLAMC, while urine specimens were coordinated by the nursing attendant. After these samples were collected, participants were given a glass of fruit juice, a bran muffin and a cup of coffee or tea to break their fast. Although the time allocated for these preliminary procedures was approximately 30 minutes, it frequently extended longer due to difficulties participants had in voiding and the logistics associated with accommodating non-ambulatory individuals. Ideally, the first round of assessments was scheduled to begin at 9:30, this allowing all three participants to be seen by all four clinicians for a 30 to 45 minute evaluation by approximately 12:00 noon. Lunch was then served between 12:15 and 1:00 P.M., prior to transporting participants to the Bone Diagnostic Center. Hen the schedule was delayed, it could be as late as 2:00 P.M. before participants were ready to make the 18 mile trip to Long Beach, CA. On these occasions, it was sometimes necessary to re-schedule the bone density testing for another day, which was both time consuming and expensive in transportation costs.
A final and unplanned data collection procedure involved conducting follow up telephone interviews and re-mailing questionnaires to fill in missing data. This was particularly necessary for those subjects who participated during the first year of data collection prior to the change of project director/principal investigator and the re-conceptualization of the study to incorporate the life course perspective. During this phase, which lasted about six months, approximately 100 participants were re-interviewed to obtain more accurate information ion their history of disability and their experience of later-life effects or secondary conditions.
From Page 31 of the full report:
Two sets of variables derived from this assessment are utilized in the Results section of this report. The first, represents within and between sample differences in the temporal structure of disability and includes: Age at Acute Onset, Length of Initial Hospitalization and Recovery Period (for Polio); Age at Period of Physical Best (For Polio); Length of Initial Hospitalization and Duration of In-Patient and Out-Patient Rehabilitation (for Stroke; Age at Onset of New Symptoms and Functional Decline/PPS (for Polio; and Current Chronological Age at T.O.M. The second set consists of additional measures of impairment and disability, and was used to fill in gaps in the medical history information. Specific variables in this category include: Severity of Initial Impairment, as measured by the number of body areas effected and the degree of muscle weakness or paralysis (both Polio and Stroke); Presence/Absence of Initial Respiratory Involvement (for Polio); Severity of Residual Impairment, measured at time of physical best for Polio and T.O.M. for Stroke; and, Type of Rehabilitation Received (e.g., Sister Kenny for Polio and physical, occupation, and/or speech therapy for Stroke. Information contained in the Social History Evaluation on the impacts of disability on work and family careers has yet to be coded and analyzed.
Bone Density Screening for Osteoporosis. This assessment involved scanning two areas of the body, the hip and lumbar spine, using Dual Energy X-ray Absorptometry and a Hologic QDR 1000W machine. This methodology calculates the Anterior-Posterior (AP) bone mineral density, or BMD, for each body area scanned, which is equal to the total bone mass measured in grams divided by the squared cubic millimeter of area scanned. To create a measure of the risk of fracture due to osteoporosis, the MBD score for each region of the hip and spine is converted into a percentage of bone mineral loss. This is done by comparing the observed BMD values to normative data for "healthy" young individuals of the same sex and race/ethnicity. Because of the greater risks of osteoporosis for women, only data from female polio survivors and non-disabled controls are presented in this report. To control for the effects of disability-related osteoporosis within the Polio sample in all but three cases the hip used in the bone density scan was affected by polio at acute onset. The three exceptions include two women with no lower extremity involvement, and one where the unaffected hip was mistakenly scanned.
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