Health care disparities have been documented in cancer screenings of adults with intellectual and other developmental disabilities. Developmental disabilities nurses were surveyed to better understand and improve this deficiency. Two thirds of respondents believed that adults with intellectual and developmental disabilities received fewer cancer screenings compared with the general population. The most frequently cited barriers to cancer screenings were as follows: patient need for sedation, unsuccessful attempts at screening, and failure of the primary care clinician to order cancer screening tests. Nurses observed that health care providers frequently did not tailor cancer screening recommendations to individuals' family histories, life expectancies, or their disability-specific cancer risks. The authors suggest interventions to improve cancer screening centered around education and training, accessibility, financing–insurance, modification of procedures, and patient tracking.
A rich literature is emerging in nursing, medicine, public health, and disabilities policy studies that documents disparities in the health and health care of individuals with intellectual and other developmental disabilities (Kopac, Fritz, & Holt, 1998; Krahn & Drum, 2007; Lewis, Lewis, Leake, King, & Lindeman, 2002; Ouellette-Kuntz et al., 2005; U.S. Public Health Service, 2001). These studies have shown disparities in the entire spectrum of cancer control, from prevention, screening, and early detection to treatment and end-of-life care (Ellison & Rosielle, 2008; Iezzoni et al., 2008; Krahn, Hammond, & Turner, 2006; McCarthy et al., 2007; O'Regan & Drummond, 2008; Tuffrey-Wijne, 2003; Wilkinson, Culpepper, & Cerreto, 2007). As individuals with intellectual and developmental disabilities achieve longer life expectancies, suboptimal cancer screening practices will contribute to an even greater cancer burden to the patient and caregiver.
Compared with the general population, adults with intellectual and developmental disabilities have lower rates of cancer screening, particularly breast and cervical cancers (Havercamp, Scandlin, & Roth, 2004; Sullivan et al., 2003; Wilkinson & Cerreto, 2008). Traditionally, conceptual frameworks developed to understand cancer screening disparities have centered on patient, provider, health care system, and financial factors (Polite, Dignam, & Olopade, 2006). Whether these conceptual models adequately elucidate disparities in cancer screening of adults with disabilities has not been explored.
Nurses engage with adults with intellectual and developmental disabilities in educational, workplace, residential, recreational, as well as health care settings and are involved in cancer screening through patient, family, and service-provider education, referral, advocacy, and through ordering and conducting cancer screening tests themselves (Melville et al., 2005). In these ways, nurses offer unique perspectives regarding the factors that promote and those that impede cancer screening in this population.
The purpose of this study was to better understand barriers and potential opportunities to improve cancer screening in adults with intellectual and developmental disabilities through a survey of nurses working in developmental disabilities settings.
Nurses attending an annual continuing education program in developmental disabilities nursing in Cleveland, Ohio, on April 10, 2008, were surveyed regarding their experiences and views on cancer screening in adults with intellectual and developmental disabilities. Initial drafts of the survey were designed by the authors, after conducting a review of the literature on cancer screening in persons with intellectual and developmental disabilities, as well as relevant articles related to cancer screening disparities and barriers in the general population. The survey was further modified in an iterative fashion through consultations with the steering committee of nurses responsible for coordinating the educational program and after pilot testing by several developmental disabilities nurses. The 25-item written survey included demographic information about the respondent's professional credentials and work affiliation; views about cancer screening quality, barriers, and disparities; and suggested interventions for improvement. Questions about the quality of cancer screening were posed in a 5-point Likert-type scale, from 1 (never) to 5 (always), to describe how often the primary care provider tailored cancer screening recommendations according to the individual's family cancer history, health risk behaviors, estimated life expectancy, prior cancer history, and disability-specific cancer risks. The study was approved by the first author's (C.V.T.) sponsoring hospital's institutional review board.
Demographic and close-ended responses were summarized by standard descriptive statistics. Binary coding of itemized barriers to cancer screening was used to determine whether respondents commonly endorsed specific combinations of barriers. Items related to the quality of cancer screening were compared between nurses who did and those who did not believe that there were disparities in cancer screening in adults with intellectual and developmental disabilities. Open-ended items were categorized thematically by the authors and summarized.
All 93 conference attendees returned the survey. Of these, 55 (59%) were registered nurses, 30 (32%) were licensed practical nurses, 2 (2%) were advanced practice nurses, and 2 (2%) were student nurses. Three respondents did not specify their professional designation, and 1 was a (non-nurse) qualified mental retardation professional (QMRP). Three of the nurses were certified with the Developmental Disabilities Nurses Association, and 3 nurses were also certified as QMRPs. Although 50% of nurses identified Cuyahoga county (encompassing Cleveland, Ohio) as the location for their professional work, attendees represented 21 counties, of which 17 (81%) were urban and the remaining rural. The most common work affiliations reported were county board of developmental disabilities (47%), residential service provider (25%), ICF/MR (intermediate care facility; 10%), supported living (10%), home and community-based service (3%), hospital–medical clinic setting (3%), and state agency (2%). Many respondents reported multiple work affiliations.
Two thirds of respondents (66%) believed that adults with intellectual and developmental disabilities, compared with the general population, receive less cancer screening, 24% believed they received about the same, and 10% believed they received more.
Table 1 lists by rank order those barriers that nurses believed were the greatest impediments to cancer screening. Over half of respondents (54%) identified three or four barriers to cancer screening; binary coding revealed no frequently endorsed combination of specific barriers.
Figure 1 portrays to what degree nurses believed cancer screening tests were being tailored to patients' syndrome-specific cancer risk, personal cancer history, estimated life expectancy, behavioral risks for cancer, and family cancer history. The percentages of nurses rating each quality criterion “almost always” or “always” varied from 75% for “personal cancer history” to only 30% for “estimated life expectancy.” Interestingly, nurses who believed there were no overall disparities in cancer screening did not report any better tailoring of cancer screening for any of the above five risk factors. There was no relationship between the perceived quality of cancer screening and the professional self-designation or work affiliation of the nurse.
Fifty-four percent of respondents had encountered an individual with intellectual and developmental disabilities who developed cancer and who had never been screened prior to diagnosis. There were no differences in the above cancer screening measures reported by the nurses who had encountered an individual diagnosed with cancer without prior screening and those who had not.
Proposed interventions to improve cancer screening of adults with intellectual and developmental disabilities are summarized in Table 2. On average, each nurse identified two interventions to improve cancer screening. Of the 214 written suggestions, nearly two thirds were related to education or training.
Substantive improvements in the cancer screening of adults with intellectual and developmental disabilities require understanding the perspectives of many individuals, including those both directly and indirectly involved in the provision, receipt, and monitoring of these services. This study solicited the invaluable perspectives of developmental disability nurses who are critically positioned to better understand, and improve, the cancer screening disparities that are known to exist in this population of individuals.
Nurses identified widespread education as a cornerstone to improving cancer screening by targeting patients, advocates, direct support professionals, agencies, hospital technicians, and primary care providers. Critical to this education is a shared understanding of the value of preventive health care in these individuals, who have long suffered from a diagnostic [and therapeutic] overshadowing of their health care by a preoccupation with the disability rather than a whole-person perspective (Reiss, Levitan, & Szyszko, 1982). Respondents discussed screening within the context of health care experiences in general, citing “bad experience with [health] care…lack of service by technicians, derogatory comments, frustrated and overwhelmed testing staff.” Education needs to be tailored to the needs, attitudes, demands, and roles of each group involved in the cancer screening process.
Nurses recommended identifying in advance potential obstacles to successful completion of screening procedures by anticipatory dialogues among the client, caregiver, and primary care provider. They recognized the necessity for readily available equipment to assist with transfers from wheelchairs to examination tables, the need for streamlined sedation protocols, and the value of desensitization to frightening and/or uncomfortable procedures (Altabet, 2002; Prangnell & Green, 2008; Prevatt, 1998).
Like the general population, cancer screening for persons with intellectual and developmental disabilities requires explicit standards of care based on age and gender, further individualized by personal and family medical history and behavioral risk factors and informed by the knowledge of syndrome-specific cancer risk associations (Patja, Eero, & Iivanainen, 2001; Sullivan, Hussain, Threlfall, & Bittles, 2004). Unfortunately, even in the general population, relevant family history is often unknown to the patient, undocumented in the medical record, and underutilized in tailoring cancer screening recommendations (Tyler & Snyder, 2006). This is congruent with our respondents' perceptions, that even persons with intellectual and developmental disabilities receiving equal or more cancer screening compared with the general population were not receiving adequate risk assessment.
Limitations of this study primarily relate to its cross-sectional survey design and sampling frame of nurses attending a topic-related conference within a single Midwestern state. At the same time, a significant proportion of respondents worked in rural settings, and the variability in combination of barriers cited suggest that a variety of health care settings and experiences were captured. Their perceptions provide a valuable starting point on which further inquiry into the real-world practice of cancer screening can be investigated and improved.
This is not a direct observational study of cancer screening practices. Like the present study, more often than not, observational studies of screening practices (Schootman & Jeffe, 2003; Smeltzer, 2006; Sullivan et al., 2003) and survey-based research assessing physician attitudes (Verger et al., 2005) have shown that cancer screening in adults with intellectual and developmental disabilities is inadequate, even when risk factors for particular cancers are present at a higher rate than the general population (Wallace et al., 2004). Additional research involving actual cancer screening practices is needed to provide clinical evidence that confirms research based on health professionals' attitudes.
Much of the literature examines cancer screening in adults with disabilities in general, combining physical and cognitive disabilities into the same category. Although, as a group, adults with disabilities receive cancer screening less frequently than the general population (Schootman & Jeffe, 2003; Schopp et al., 2002; Smeltzer, 2006; Sullivan, et al. 2003), studies assessing screening practices for adults with specific disabilities would illuminate the unique reasons for disparities seen in particular subpopulations.
Ten percent of survey respondents believed that persons with intellectual and developmental disabilities received more cancer screenings than the general population. Analysis of Medical Expenditure Panel Survey (as cited in Wei et al., 2006) data of 3,183 community-dwelling women found higher rates of colorectal cancer screening among women with disabilities than those without disabilities but lower rates of screening for breast and cervical cancer (Wei, Findley, & Sambamoorthi, 2006). Additional study is needed to identify whether some persons with intellectual and developmental disabilities receive better than average care. This is certainly possible, given the fact that in the United States, 66.5% and 79.6% of women are screened for breast and cervical cancer, respectively, and just 46.8% of all adults are screened for colon cancer (American Cancer Society, 2009). Some individuals with disabilities enjoy the benefits of highly organized health care surveillance and tracking afforded by some residential service providers and institutions, continuous health insurance not dependent on the vagaries of competitive employment, and instrumental assistance with transportation and scheduling of care.
If indeed, as some of our respondents suggested, there are successful models of cancer screening already in practice, we need to identify, study, and replicate them. Perspectives of other stakeholders—self-advocates, direct support professionals, hospital technicians, and physicians—are needed to understand better other factors that contribute to disparities in cancer screening of persons with disabilities. As the nurses in this study outlined, progress will require tailored approaches that address the educational, logistical, and personal barriers to cancer screening.
We thank the nursing staff of the Cuyahoga County Board of Developmental Disabilities in the design and implementation of the survey. We also thank Sarah Schramm, MA, for her assistance in manuscript preparation. The project described was supported by Award Number R25CA111898 from the National Cancer Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.
Carl V. Tyler, MD, MS (E-mail: email@example.com), Clinical Assistant Professor, Department of Family Medicine, Case Western Reserve University, Cleveland, OH, and Coordinator, Geriatric Education and Research, Department of Family Medicine, Medicine Institute, Cleveland Clinic, Cleveland. Stephen J. Zyzanski, PhD, Professor, Department of Family Medicine, Case Western Reserve University, Cleveland, OH, and Department of Epidemiology and Biostatistics, Case Western Reserve University, Cleveland. Vanessa Panaite, BA, Research Assistant, Department of Family Medicine, Case Western Reserve University, Cleveland, OH. Linda Council, RN, BSN, Nurse Educator, Cuyahoga County Board of Developmental Disabilities, Cleveland, OH.
Editor-in-Charge: Steven J. Taylor