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A Survey of Patients, Families and Providers about Care of Patients with Intellectual Disabilities

in Heather Douthitt Stief BS, Michael Clark MD, Articles

Heather Douthitt Stief, BS, Medical Student, Medical College of Wisconsin
Michael Clark, MD; Ministry Medical Group

Abstract

Background: Patients with intellectual and developmental disabilities (IDDs) often encounter additional challenges in accessing health care compared to the general population.  Moreover, many providers feel inadequately prepared to treat this population.

Objectives:  Our study aimed to identify areas where changes are needed to improve the health care of individuals with IDDs.

Methods: In partnership with Special Olympics Wisconsin (SOWI), we surveyed athletes/parents regarding their experiences with the health care system.  Additionally, we surveyed providers within a large multi-specialty medical group concerning their interactions with patients with IDDs.  Responses were collected from 151 athletes/parents and 57 providers.

Results:  While 92% of SOWI survey respondents indicated that their doctor understands their unique health care needs, 59.65% of providers felt they deliver an unequal quality of care to patients with IDDs.  The most noted challenges for patients were insurance, cost, provider availability and time constraints.  Providers most often noted that communication barriers and complexity of social and medical situations limited their ability to effectively deliver care.  Seventy percent of providers indicated interest in attending training on how to better serve this population.

Conclusions: Efforts at increasing education paired with broader health care system reform will likely result in progress toward equality of health care services for those with IDDs.

Introduction

Patients frequently report difficulties in comprehending information provided to them by their physicians and other health care providers.1 This problem can be magnified for populations with intellectual and developmental disabilities (IDD), who often have additional barriers to communication not experienced by other patients.2

Furthermore, individuals with IDDs make up a large population with many health care needs; however, many practitioners feel inadequately prepared to care for this population.3 White and colleagues4 suggest that illnesses that are readily apparent in persons without disabilities may remain undiagnosed in individuals with intellectual disabilities.  This likely contributes to the fact that individuals with IDDs continue have a lower life expectancy than non-disabled individuals, despite improvements over recent decades.5 Many factors influence this discrepancy, particularly barriers to communication, a lack of time, and poor continuity of care.3 The 2001 report “Closing the Gap,” published following the Surgeon General’s Conference on Health Disparities and Mental Retardation, highlights the disparities faced in accessing health care and sets a number of goals aimed at improving the standard of care and increasing research regarding the care of this population group.6  A few of these disparities include a disproportionate likelihood of living in low-income communities, inadequate experience of health care providers, and trouble accessing health care.6

Special Olympics International is one of the largest worldwide organizations focused on those with IDDs.  Their Healthy Athlete Initiative™ attempts to identify and address the health care disparities experienced by individuals with IDDs and connects them with health professionals in fields such as medicine, dentistry, vision, and podiatry.7 Special Olympics Wisconsin (SOWI), a state charter of Special Olympics International, serves nearly 10,000 athletes each year.8  Through the Healthy Athletes™ program, the organization has provided over 11,000 athlete screenings to  between 2005 and 2011.9 Special Olympic athletes are at least 8 years of age and have a cognitive disability or developmental disability with functional limitations.  In general, a cognitive disability is defined as an individual having an intelligence quotient below 70 with onset prior to the age of eighteen years.10 The term “cognitive disability” can be used interchangeably with the terms “mental retardation” and “intellectual disability.”

Although Special Olympics’ Healthy Athletes™ program provides health screenings for athletes, these screenings are not a replacement for the ongoing healthcare needs of athletes.  Many athletes and other individuals with IDDs utilize Medicare or Medicaid to access health care services, which poses limitations to access of needed care.

Our study sought to evaluate the perceived barriers to quality healthcare among individuals with IDDs.  Since quality health care depends on both the patient and the provider factors, we conducted a two-fold study.  First, we aimed to determine how individuals with IDDs, their families, and others who work closely with them perceive the health care they receive.  The second area of focus evaluated health care providers’ perception of their ability to treat persons with IDDs.

Methods

In order to evaluate the perceived disparities in health care access, we developed a survey for distribution to all Class A volunteers within Special Olympics Wisconsin.  Class A volunteers include individuals who have recurring interactions with athletes.11  Many of these individuals are parents as well as other community members who interact with the IDD population on a regular basis.  Additionally, some individuals in this capacity are Special Olympics athletes themselves who either have transitioned from competition to coach or coach one sport and compete in another.  Prior to the administration of the survey, it was distributed to several clinical directors of the SOWI Healthy Athletesä program for feedback.  Changes were made to make the survey more pertinent to the concerns that had been noted previously as well as to make the questions more clear.

Survey Monkey,12 an online survey interface, was utilized to create and administer the survey. Survey Monkey allowed the survey questions to be tailored to person taking it based on their relationship to athletes.  Questions on the survey focused on the athlete’s ability to access care, the quality of care received, general health perceptions, awareness of his or her medical conditions and utilization of services provided by SOWI Healthy Athletes.  The answer choices were based from common limitations noted in the literature as well as observations by Healthy Athletes Program™ staff.  The core concepts of the questions remained the same but the wording was varied based on whether the survey taker was a parent, athlete or volunteer.  The survey was distributed primarily via an email by Special Olympics Wisconsin using an existing email distribution list for Class A volunteers that contained a link to the online survey.  Those who received the link were encouraged to forward the email to other athletes and families with whom they interact.  This was especially useful as many coaches and agency managers, who are Class A volunteers, interact with upwards of twenty athletes.  In addition, a link to the survey was posted on the Special Olympics Wisconsin Facebook page and responses were collected in-person at a regional Outdoor Sports Tournament in Milwaukee on July 16, 2011.  No personal information was requested on the survey.  The online survey was available for a two-week period.

A second survey was conducted to evaluate the perceptions of health care providers within Ministry Medical Group regarding the provision of care to individuals with intellectual disabilities.  Ministry Medical Group is a multispecialty group composed of approximately 300 physicians and advanced practice clinicians located in central and north central Wisconsin.  This is the medical group in which the physician preceptor is employed.  For this survey, an email was sent to all physicians and advance practice clinicians within Ministry Medical Group who were on a pre-existing email distribution list.  The email contained a description of the survey purpose as well as a link to the online survey.  Survey Monkey12 was utilized for the administration of this survey as well.  Questions for the Ministry survey focused on frequency with which patients with IDDs were seen, perceived quality of care delivered, and provider comfort in delivering care, as well as what factors limit the treatment of individuals with IDDs.  Additionally, questions assessed what factors might improve their ability to treat this patient population and whether the providers were interested in further education about the population.  Two weeks were allowed for responses.

Given that data collection was via voluntary anonymous surveys, Ministry Medical Group and Special Olympics-Wisconsin leadership determined the project to be IRB exempt.

Results:

Our initial survey addressed health care concerns within SOWI.  The survey was distributed to 3,729 individuals who were categorized as Class A volunteers.  Because survey recipients were encouraged to forward the survey to other individuals within the SOWI program and because the survey link was also available via social media, the total number of persons to whom the survey was available is unknown.  The survey was available for a two-week period during July of 2010.  Two hundred fifty individuals started the survey, however, 27 of those were eliminated due to failure to complete questions beyond their role within SOWI (22 volunteers, 3 parents, 2 athletes).  Sixteen of the surveys were collected in person at the Outdoor Sports Tournament (5 athletes, 10 parents and 1 non-parent volunteer), which accounted for 7.17% of total responses.  Of the 223 surveys that were completed adequately to extract data, 123 were completed by parents or guardians, 72 by non-parent volunteers, and 28 by athletes.  Because many of the volunteer surveys indicated that they were unfamiliar with the aspects of the athletes’ health at which we were inquiring, analysis was focused on the parents and athletes for a total of 151 respondents.  An overview of the questions included in the survey as well as the responses of parents and athletes are available in Figure 1.

Figure 1: Survey Responses by SOWI Athletes and Parents. Percentages refer to percent of each category of respondents.

 

Parent Responses
(n=123)

Athlete Responses
(n=28)
Athlete’s Age
8-12
13-18
19-25
26-30
30-40
40-50
50 and older


9 (7.32%)
14 (11.38%)
35 (28.46%)
25 (20.33%)
26 (21.14%)
16 (13.01%)
8 (6.50%)


1 (3.57%)
2 (7.14%)
6 (21.43%)
3 (10.71%)
11 (39.29%)
4 (14.29%)
1 (3.57%)


Athlete Makes Own Health Care Decisions
11 (8.94%)12 (42.86%)
Primary Doctor Understands Health Needs111 (90.24%)28 (100%)
Athlete Receives Adequate Care?
Primary Care
Dental Care
Vision Care
Specialty Services
Preventative Care


122 (99.19%)
101 (82.11%)
107 (86.99%)
94 (76.42%)
97 (78.86%)


27 (96.43%)
22 (78.57%)
24 (85.71%)
18 (64.29%)
20 (71.43%)
What Limits Athlete’s Access to Care?
Insurance
Cost
Scheduling
Transportation
Communication
Access to Providers
Other

24 (19.51%)
18 (14.63%)
3 (2.44%)
2 91.63%)
8 (6.53%)
8 (6.53%)
15 (12.20%)

9 (32.14%)
8 (28.57%)
2 (7.14%)
5 (17.86%)
1 (3.57%)
2 (7.14%)
0
Provider Provides Good Health Education106 (86.18%)24 (85.71%)
What Would Improve Health Care Experience?
Doctor Could Spend More Time
Doctor Could be More Understanding
Receive Better Treatment
Receive More Information
More Provider Options
Other


15 (12.20%)
9 (7.32%)
7 (5.69%)
15 (12.20%)
31 (25.20%)
19 (15.45%)


9 (32.14%)
5 (17.86%)
4 (14.29%)
9 (32.14%)
7 (25.00%)
2 (7.14%)

How is Athlete’s Overall Health?
Very Good
Good
Neither Good nor Bad
Poor
No Response

49 (39.84%)
63 (51.22%)
7 (5.69%)
4 (3.25%)
1 (0.81%)

14 (50.00%)
11 (39.29%)
2 (7.14%)
0
1 (3.57%)
Understands Athlete’s Health Conditions
All Conditions
Some Conditions
None
No Response

107 (86.99%)
16 (13.01%)
0
0

17 (60.71%)
8 (28.57%)
2 (7.14%)
1 (3.57%)
Knows Athlete’s Medications
All Medications
Some Medications
None
No Response

121 (98.37%)
2 (1.63%)
0
0

21 (75.00%)
3 (10.71%)
2 (7.14%)
2 (7.14%)
Knows Athlete’s Medications Indications
All Medications
Some Medications
None
No Response

118 (95.93%)
5 (4.07%)
0
0

17 (60.71%)
7 (25.00%)
2 (7.14%)
2 (7.14%)

The majority of respondents indicated that the athlete does not make his or her own health care decisions (83.44%). Most respondents indicated that their primary doctor understands the unique heath care needs presented by the athlete (92.05%).  Furthermore, most athletes and parents believed that they/their athlete received all the primary care services that were needed (98.66%).  The percentage of athletes who received adequate dental, vision, specialty, and preventative care services was somewhat lower ranging from 48% for preventative care to 81% for dental care.

When questioned as to what limits the athletes’ ability to access care, the most common response was insurance (21.85%) followed by cost (17.22%).  Although scheduling, transportation, communication and inability to find a doctor were also included in the answer set, these choices received considerably fewer responses.

Nonetheless, when asked what could be done to improve the athlete’s experience with healthcare providers, the most commonly indicated answer was “More health care providers willing to see me/my athlete” (25.17%).  The next most common choices were “health care provider could spend more time with me/my athlete” and “I could receive more information about my/my athlete’s conditions.”   For these questions, survey responders were permitted to select all applicable answers.

Most athletes with respect to whom information was collected were considered to be in “good” or “very good” health (49.01% and 41.72%, respectively).  Additionally, the majority of athletes and parents/guardians who responded to the survey indicated they understood the athlete’s conditions and knew what medications the athlete takes and why they take those medications.

Within the allowed comment spaces, the most often noted need was for dentists who will accept Medicaid patients, particularly in rural areas.  Six comments to this effect were collected between the parent and volunteer response sets.

A second survey campaign was directed at health care providers within Ministry Medical Group (MMG).  The email list utilized for MMG contained 316 individuals.  Of these 57 responses were collected (37 physicians, 12 nurse practitioners, and 8 physician assistants).  Nearly one-third of responses were from physicians, nurse practitioners and physician’s assistants in Family Practice (see Figure 2).

Figure 2: Ministry Medical Group Survey Respondents. Distribution of survey respondents based on field of practice. Percentages refer to the percent of total responses (n=57).

FieldPhysicians Nurse PractitionersPhysician’s AssistantsTotal
Family Practice10 (17.54%*)6 (10.53%)2 (3.51%)18 (31.58%)
Emergency Medicine6 (10.53%)1 (1.75%)1 (1.75%)8 (14.04%)
Anesthesiology4 (7.02%)1 (1.75%)--7 (12.28%)
Internal Medicine5 (8.77%)--1 (1.75%)6 (10.53%)
Obstetrics/Gynecology4 (7.02%)--1 (1.75%)5 (8.77%)
Pediatrics4 (7.02%)----4 (7.02%)
Urgent Care--1 (1.75%)2 (3.51%)3 (5.26%)
ENT1 (1.75%)----1 (1.75%)
Radiology1 (1.75%)----1 (1.75%)
Surgery1 (1.75%)----1 (1.75%)

Child/Adolescent Psychiatry

1 (1.75%)----1 (1.75%)
Occupational Health--1 (1.75%)--1 (1.75%)
Urology----1 (1.75%)1 (1.75%)

The majority of respondents indicated that they encounter a patient with an IDD at least once a week (33, 57.89%)—six of these individuals indicated that they encounter patients with IDDs on a daily basis (10.53%).  All respondents stated that they encounter patients with IDDs at least a few times a year.

Interestingly, despite noting that patients with IDDs are commonly seen in practice, 34 respondents (59.65%) indicated that they do not feel they are able to provide the same quality of care to patients with IDDs compared to their other patients.  While many reasons were cited for this discrepancy, the most common reasons noted were: “Communication barriers” (31, 54.39%), “Complex social or family situations” (27, 47.37%), and “Complicated or multiple medical conditions” (18, 31.58%).  Nonetheless, most providers stated that they do feel comfortable dealing with individuals with IDDs (36, 63.16%).

Other factors that limit the provision of care to individuals with IDDs that were frequently noted were: “Insufficient appointment time” and “Challenging appointment dynamics” (22, each, 38.60%).

The majority of health care providers who responded to the survey indicated that they would be interested in attending additional training regarding individuals with IDDs (40, 70.18%).  The main topic of interest was communication strategies (28, 49.12%), although managing multiple medical conditions and community services and support were also indicated as areas of interest (23, 40.35%; and 22, 38.60%, respectively).

Most health care providers also thought that having additional tools to improve communication (such as pictorial communication cards) would be helpful (40, 70.18%).  And nearly all respondents believed that if patients with IDDs maintained a more detailed record of their health, it would improve the quality of care they could administer (49, 85.96%).

Discussion

With regard to the SOWI survey, a bias may have existed whereby those individuals who are more proactive about their health care and the health care of their athlete(s) were more likely to complete the survey, particularly given the low response rate to the emailed survey.  A possible result of this effect could be that these individuals may be more satisfied with the health care they receive as they have sought out providers who deliver better quality care.  Moreover, individuals who participate in Special Olympics may be in better overall health than the broader population of individuals with IDDs.  Similarly, the increased percentage of athletes who make their own health care decisions when compared to the percentage within the parent/guardian completed surveys likely reflects a bias toward collecting information from athletes who function at a higher level.

The reduced percentage of athletes who were thought to receive adequate specialty and preventative care services may reflect a misunderstanding of the meaning of these questions.  Confusion regarding the meaning of those terms was noted during some of the in-person survey collection that was performed at regional Outdoor Sports Tournament.

Most likely the respondents to the health care provider survey self-selected for those providers who felt that patients with IDDs were pertinent in their practices.  This may account for the high frequency with which providers noted seeing patients with IDDs in their practice—over half stated that they see a patient with an IDD at least once per week.   Similarly, those practitioners who did not believe that the treatment of individuals with IDDs was applicable to their practice may have chosen not to complete the survey.

While self-selection of individuals who feel strongly about the issue of health care for individuals with IDDs likely played a role in our low response rates, several additional factors were likely implicated as well.  Both emails were sent via standard distribution lists, which are used for other news and information distribution as well.  Emails received by mass email may be more likely to be disregarded.  Moreover, the use of emailed survey links and an online survey likely selected for more technologically savvy respondents for both the MMG and the SOWI surveys.  In addition, the survey was administered for two weeks in the summer which may also have reduced level of participation as a result of increased number of people in both groups on vacation.

An interesting discrepancy between the SOWI survey and the MMG survey was that the majority of SOWI respondents felt that they received good quality primary care; however, the majority of MMG providers who responded did not feel that they were able to deliver the same caliber of care to their patients with IDDs.  One potential explanation for this may be that SOWI athletes tend to be in better health and higher functioning than the general population of individuals with intellectual disabilities.  Presumably the MMG providers are seeing a broader spectrum of individuals with IDDs.  This may be particularly true if as indicated above, the individuals who chose to respond to the survey are more proactive regarding the health of their athlete in general.  Moreover, the definition of high quality health care is highly subjective and may vary, not only between patients to providers, but also from provider to provider and from patient to patient.

The overall results of the surveys were encouraging.  Most of the respondents to the SOWI survey felt that they/their athlete is in good health and receives adequate health care.  Similarly, the majority of respondents to the MMG survey, whether they felt they delivered high quality care to patients with IDDs or not, were interested in learning ways to better treat this population.

By offering training programs both as continuing medical education and by instituting earlier education into the medical curriculum, improvements may be seen in the degree of comfort and the quality of care that is delivered.  Additionally, efforts by hospitals and clinics to provide tools to improve the ability of providers to communicate with patients with special needs, such as communication cards, may positively impact the quality of care that is provided.   Prater and Zylstra (2006) offer a concise set of recommendations regarding the care of individuals with IDDs which could be used as an introduction for clinicians who less familiar with these patients.13  This article both reviews common comorbid conditions for a variety of causes of IDDs as well as reminds the reader that some generally considerate behaviors, such as telling the patient what you are doing during the physical exam and including the patient in the decision making process are important for individuals with IDDs as well.13

While programs such as Healthy Athletesä work to improve athletes’ ability to receive screenings and needed health interventions, they are unable to provide the full spectrum of care that is needed.  Broader reform and improved reimbursement programs for treating the often complex patient with IDD will be necessary to eliminate the perceived inability to access care due to insurance limitations and provider inaccessibility.

References

  1. Castro CM, Wilson C, Wang F, Schillinger D. Babel babble: physicians' use of unclarified medical jargon with patients. American Journal of Health Behavior. Sep-Oct 2007;31 Suppl 1:S85-95.
  2. Chew KL, Iacono T, Tracy J. Overcoming communication barriers - working with patients with intellectual disabilities. Aust Fam Physician. Jan-Feb 2009;38(1-2):10-14.
  3. Office of the Surgeon General, National Institute of Child Health and Human Development, Centers for Disease Control and Prevention.  Closing the gap: A national blueprint to improve the health of persons with mental retardation. Washington, DC: US Department of Health and Human Services. 2002
  4. Lennox NG, Diggins J, Ugoni A. The general practice care of people with intellectual disability: barriers and solutions. Journal of Intellectual Disability Research. 1997;41(5):380-390.
  5. White P, Edwards N, Townsend-White C. Stress and burnout amongst professional carers of people with intellectual disability: another health inequity. Current Opinion in Psychiatry. 2006;19:502-507.
  6. Perkins, EA and Moran, JA. Aging Adults with Intellectual Disabilities. Journal of the American Medical Association. 2010;304(1):91-92.
  7. Healthy Athletes.  www.specialolympics.org/healthy_athletes.aspx. Accessed October 11, 2011.
  8. Special Olympics Wisconsin.  www.specialolympics.com/index.asp. Accessed October 5, 2011.
  9. Schoenbrodt, M. Athlete Wellness.  http://www.specialolympicswisconsin.org/general_healthy_athletes.html. Accessed October 5, 2011.
  10. VeDepo S. FAQ's regarding Special Olympics Wisconsin Eligibility and Required Paperwork.  www.specialolympicswisconsin.org/athlete_faq.html. Accessed October 5, 2011.
  11. Ellis C. Who is a Class A Volunteer?  http://www.specialolympicswisconsin.org/volunteers_class_a.html. Accessed October 5, 2011.
  12. SurveyMonkey.  www.surveymonkey.com. Accessed June 28, 2011.
  13. Prater, CD and Zylstra, RG. Medical care of adults with mental retardation.  American Family Physician.  2006;73:2175-2183.
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