Health Practices and Secondary Conditions Project

Principal Investigators: Laurie Powers, Ph.D.,
Charles Drum, Ph.D., J.D.
Oregon Health & Science University

 

Introduction

There are many demographic, general and disability-related health maintenance, and contextual factors that appear associated with the presence of secondary conditions among persons with disabilities. However, the relative influence of these factors requires clearer understanding if appropriate health prevention and promotion strategies are to be identified. The purpose of this study is to investigate the relationship of key disability-related health maintenance practices and contextual factors to the presence of secondary conditions.

The prevention of secondary conditions is a critical health maintenance goal for persons with disabilities (NIDRR, 1999). Although some secondary conditions are common across disabilities with similar functional limitations (e.g., joint and muscle pain or pressure sores for persons who are sedentary), other secondary conditions tend to be more often associated with specific disabilities (e.g., urinary tract infections with spinal cord injury or balance problems with cerebral palsy) (Marge, 1994).

Like the general health of persons with disabilities, secondary conditions are thought to be impacted by the interaction of a multitude of person and contextual factors. Evidence suggests that these factors include demographic characteristics, such as gender, age, income, culture, education and severity of disability (Marge, 1994; Nosek et al., 1997; Pope & Tarlov, 1991). For example, mobility, sensory and intellectual secondary conditions more likely to emerge at older ages (Marge, 1994).

Likewise, general health maintenance practices (i.e., physical activity, healthy diet, not smoking, weight control, adequate sleep, participating in health screening and primary care, moderate consumption of alcohol) impact the development of secondary conditions (Pope & Tarlov, 1991). Passaro, et. al., (1998) found that North Carolina adults with disabilities were somewhat more likely to be smokers, to be sedentary, and to be overweight than those without disabilities. Ehrenkrantz, Miller and Sergeant (1999) found women with disabilities to be less likely to have had a CBE, mammogram or pap smear.

In addition to demographic characteristics and general health maintenance practices, there is emerging evidence that other disability-related health maintenance practices and contextual factors are likely related to the prevention of secondary conditions and general health status among persons with disabilities. The higher level of use of complementary and alternative medicine (CAM) among persons with disabilities at least suggests that individuals perceive CAM as having a positive impact on their health (Krauss, Godfrey, Kirk, & Eisenberg, 1998). Barriers to health maintenance, such as lack of information about health promotion opportunities, environmental inaccessibility or inadequate access to personal assistance services and assistive technology, has also been identified as important (Brandt & Pope, 1997; Passaro et al., 1998; & Pope & Tarlov, 1991).

Due to the multivariate nature of these research questions and the variation in secondary conditions that are associated with different disabilities, we propose to focus this study on persons with cerebral palsy, one of the specific conditions targeted by the priority and one with which our research staff have extensive expertise. However, we believe that the knowledge gained through this focused study will enhance our understanding of key factors that may be associated with the presence of secondary conditions among other disability groups.

Objectives:

Objective 1 Develop the research protocols
Objective 2 Conduct survey study
Objective 3 Disseminate findings

Research Questions & Hyphotheses:

To what extent are identified disability-related health maintenance practices and contextual factors important for health maintenance?

Key disability related-health maintenance practices and contextual factors identified as important by persons with disabilities will be significantly associated with the presence of secondary conditions among individuals with cerebral palsy.

When demographic factors (i.e., gender, age, income, culture, education and severity of disability) are considered as one set of independent variables, and general health maintenance practices (i.e., physical activity, healthy diet, not smoking, weight control, adequate sleep, participating in health screening and primary care, moderate consumption of alcohol) are considered as another set of independent variables, disability-related health maintenance practices and contextual factors identified as important by persons with disabilities will continue to be significantly associated with the presence of secondary conditions among individuals with cerebral palsy.

Methods

Sample: Males and females who are 18 years of age or older, with a diagnosis of cerebral palsy will be recruited for the study. The precise number of participants needed for the study is, in part, dependent on the number of independent variables we will be investigating. This number is determined for the demographic (N = 6) and general health maintenance (N = 7) sets. However, the number of variables that will be included in the disability-related health maintenance set and the contextual factors set will be a function of the findings from RTDs 1 and 5 and additional research evidence that emerges from the field. For the purposes of this proposal, we will estimate that 12 variables will be included in the health maintenance and contextual factors sets. Based on this estimate, our goal will be to recruit approximately 300 participants. This sample size is sufficient to detect a moderate effect size of .30 at an alpha level of p <.05. On the basis of this analysis, statistical power exceeds .80 (Cohen, 1988).

Participants will be identified through independent living centers, United Cerebral Palsy Association (UCPA) programs, and medical centers, such as those at Baylor College of Medicine, the National Rehabilitation Hospital, and Kaiser Permanente (letters of collaboration found in Appendix B). Our goal is that at least one-third of the participants will be ethnically and culturally diverse; consistent with their distribution in the disabled population (Bowe, 1993). Based on these population estimates, we will target our recruitment efforts to involve at least 60 African Americans, 30 Hispanic Americans, 10 Asian Americans and 10 Native Americans. Invitations to participate in the study will be sent to potential participants by the recruiting organizations. Individuals who are interested in participating will be asked to complete and mail a stamped response card. A recruitment invitation will also be posted on the RRTC consumer web site at ILRU.

Data Collection and Measurement Techniques: Participants will be mailed a survey packet and sent follow-up reminder postcards within a month. The survey tool, incorporating the following components, will be developed, pilot-tested, revised and administered.

Demographic factors: A demographic questionnaire will be developed to obtain participant age, ethnicity/culture, gender, income, age and severity of disability. Severity of disability will be assessed with questions validated through the BRFSS. The BRFSS Disability Module assesses whether or not the respondent has a functional limitation and whether routine activities and needs are affected by the impairment or health problem.

General health maintenance practices: Respondent participation in general health maintenance activities will be assessed with validated measure(s) of health access and health promotion (e.g.,. BRFSS; Health Practices Questionnaire, Branch & Jette, 1984).

Disability-related health maintenance practices and contextual factors: A questionnaire will be developed that lists each of the health maintenance practices and contextual factors identified through RTDs 1 and 5, integrated with any additional research evidence that emerges from the field. Participants will be asked to rate the importance of each practice and factor, their extent of use or demonstration of each practice, and the extent to which each contextual factor has been a barrier to health maintenance. Likert scaling and multiple-choice formats will be used.

Secondary conditions: A checklist of secondary conditions commonly associated with cerebral palsy will be developed based on the information provided by Marge (1994) and others. The checklist will include items such as mobility limitations, joint and muscle pain, contractions, problems with balance, incontinence, spasticity changes, and pressure sores.

Data Analysis Methods: Descriptive data will be generated for the demographic variables, to address question 1, and to present basic findings. An exploratory examination of the internal consistency and factor structure of the disability-related health maintenance and contextual factors questionnaire will be conducted. Simultaneous multiple regression of the practices and factors on prevalence of secondary conditions will be used to test hypothesis one. Stepwise multiple regression involving first the entry of the set of demographic variables, followed by the entry of the set of general health maintenance variables, followed by the set of disability-related health maintenance practices and contextual factors will be used to test the second hypothesis.

Progress: The research tool and protocol are under final development and an application to the IRB is being prepared. We are investigating distribution of the survey through DME providers and we have decided to focus on individuals with spinal cord injury as there are validated methods available for measuring their experience of secondary conditions and we believe that focusing on one population will add precision to this study.

Conclusions

We anticipate that this study will provide substantive clarification regarding the relative importance of specific demographic, general health maintenance, disability-related health maintenance, and contextual factors, and their association with the presence of secondary conditions for persons with cerebral palsy. We expect each of the hypotheses to be confirmed; that is, disability-related health maintenance practices and contextual factors will be significantly associated with the presence of secondary conditions and this association will remain significant even when demographic factors and generic health maintenance practices are also considered.

The findings will provide the foundation for several follow-up research studies to investigate the impact of these factors on the secondary conditions experienced by persons with other disabilities, as well as their impact on additional areas of health and wellness, such as general health status, independence, and quality of life. The findings will also provide the basis for RTD 15, aimed at validating a screening tool to assist persons with disabilities to self-assess their health promotion practices.

 

Acknowledgements

The RRTC would like to thank the organizations that made this project possible (CARE Medical Equipment Inc. and Wheelchair Works, Inc., serving Oregon and Washington, and Medstar). We truly appreciate your contributions and committment to research to improve the lives of people living with spinal cord injuries.