Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

The purpose of this report is to provide a brief summary of the research about the feasibility of

implementing a comprehensive health assessment for adults with intellectual disability in Manitoba.

This feasibility study was conducted by Dr. Shahin Shooshtari & Dr. Beverley Temple from the University of Manitoba and funded by the

Canadian Institute of Health Research (CIHR). The main aim of the study was to gain the perspective of

key stakeholders about the feasibility of implementing the Comprehensive Health

Assessment Program (CHAP) for adults with intellectual disability in the Province of

Manitoba.

AuthorsCeleste WaldmanResearch Assistant University of Manitoba

Shahin Shooshtari, PhDUniversity of Manitoba St. Amant Research Centre

Beverley Temple, PhDUniversity of Manitoba St. Amant Research Centre

Sneha AbrahamResearch Assistant University of Manitoba Hélène Ouellette-Kuntz, PhDQueen’s University Nicholas Lennox, PhDUniversity of Queensland

Leanne Fenez St. Amant Inc.

Klaus Dittberner, M.D.St. Amant Inc. Leslie Udell Winnserv Inc. Charmayne Dubé, PhD New Directions

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

STUDY OBJECTIVES:

- Assess the attitudes of General Practitioners (GPs), Nurse Prac-titioners (NPs), service providers and family members providing care to adults with ID towards the implementation of the CHAP;

- Explore the specific needs of GPs, NPs and staff/family members providing care to adults with IDs in using the CHAP;

No matter the

degree of a

person’s

limitations, they

have the right to

be included in

society and to

have access to

services and

supports to help

them be as

functional and

independent as

possible.

( Convention on

the Rights of

Persons with

Disabilities)

http://www.dinf.ne.jp/doc/english/other/gh/image3.jpg

“We may be simply missing screening opportunities for associated illnesses.” (General Practitioner)

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

BACKGROUND:

Intellectual Disability (ID) is characterized by significant limitations in both intellectual functioning and in adaptive behaviour, which covers many everyday social and practical skills. Individuals can be affected in different ways and to different degrees, and people may have more than one condition simultaneously. ID’s reportedly affect approximately 300, 000 people in Canada, with close to half of those severely affected (Bradley et al., 2002; Ouellette-Kuntz et al., 2005).

Research from Canada and abroad shows that:• Significant health disparities exist between persons with and without ID (see Ouellette-Kuntz et al., 2005, for a comprehensive review). • Despite poorer health and higher health-care needs, persons with ID experience more difficulty accessing proper health care than the general population [e.g., Janicki et al., 2002; Krahn, et al., 2006; Bigby, 1998; Robertson et al., 2011).• Different strategies have been suggested to reduce health disparities faced by persons with ID. For example: Comprehensive health assessments.

A comprehensive health assessment involves a systematic collection of information about an individual’s health history, access to health care (including preventive care) and the treatments and interventions received.

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

HEALTH ASSESSMENT TOOL: The Comprehensive Health Assessment Program (CHAP), an Australian-developed tool, was designed to help minimize barriers to access primary health care for persons with an intellectual disability (ID) by prompting comprehensive health reviews. The CHAP is a two-part booklet. The caregiver, support worker and/or the family member completes the first part. The GP or Nurse Practitioner (NP) will complete the second part.

FACTS ABOUT THE CHAP:

The effectiveness of the CHAP was established through well- designed studies (Lennox et al., 2007). Findings included:

• Those participants who received a comprehensive health assessment based on the CHAP experienced increased health promotion, disease prevention and case-finding activity.

•30-fold increase in hearing testing; 9-fold increase in rates of immunization; 8-fold increase in women’s health screening, and increased detection of new disease (e.g., diabetes, heart disease) by 60 per cent.

Canadian consensus guidelines on primary care of adults with DDs make a number of recommendations. One of the evidence-based recommendations is to “… perform an annual comprehensive preventive care assessment, including physical examination, and use guidelines and tools adapted for adults with DD” (Sullivan et al., 2011, p.544). The CHAP is one such tool.

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

DATA COLLECTION METHOD:Individual interviews and group discussions were conducted with caregivers of persons with ID and primary care providers. The interview and the focus group questions were based on the in-terview guide used in research on the CHAP in Australia. (Lennox, 2006)

SAMPLE QUESTIONS ASKED:

• In your experience with persons with an intellectual disability, would you say that their health, compared to the rest of the population is: better, same or worse? Why do you think this is so?

• Do you think their health could be improved?

• If anything, what do you think carers of adults with an intellectual disability would gain from participating in a formalized health assessment program?

• If anything, what do you think your patients with an intellectual disability would gain from participating in a formalized health assessment program?

• In your view, what are the barriers to implementing a formalized health assessment?

• What factors would facilitate your use of the CHAP as a formalized health assessment tool?

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

STUDY PARTICIPANTS: In this study there were 5 primary health care professionals, 4 family members and 14 support workers/ caregivers individually interviewed. There were 2 focus group discussions conducted. One focus group consisted of 11 physicians and the other focus group consisted of 7 support workers.

STUDY PARTICIPANTS’ DEMOGRAPHICS*:

* participants that were interviewed individually only

INDIVIDUAL INTERVIEWS:

2 Physician Interviews

3 Nurse Practitioner Interviews

14 Support Worker Interviews

4 Family Members

FOCUS GROUPS:

1 Physician Focus Group (N=11)

1 Support Worker Focus Group (N=7)

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

Question: Do you think the health of adults with an intellec-tual disability is better, the same, or worse compared to the rest of the population?

RESPONSES: The majority of participants felt that the health of adults with an intellectual disability is “worse” compared to the rest of the population.

Question: In general, do you think the health of adults with an intellectual disability could be improved?

RESPONSES: The majority responded “yes” they thought the health of adults with an intellectual disability could be improved.

Persons with intellectual disabilities have poorer physical, mental, and social health compared to persons without disabilities or the general population. (Ouellette-Kuntz et al., 2005)

FINDINGS

Benefits reported by Participants

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

“Continuity of

care is the most

important factor in

maintaining high

quality health care

for clients with

intellectual

disability.”

(General

Practitioner)

“Input from

family is important

because you get

to know the little

things about that

person that not

everybody might

know.” (Family

Member)

“First and foremost

implementing the

CHAP would be

a way of ensuring

that their general

health is looked at

on a regular basis

in a comprehen-

sive way.” (Nurse

Practitioner)

Barriers reported by Participants:

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

“Some follow up

testing may be

difficult to get done because of

behavior

difficulties. For example: blood

work, pap tests

and mammo-

grams. The more

invasive testing is

something we

would have to

look at more

closely.” (Family

Member)

“It’s not just the

money there are a

lot of demands on

time of a

physician.”

(General

Practitioner)

“Behaviours can

get in the way of

doing something

like this. You may

have to do the

assessment in

parts.” (Support

Worker)

Reported Facilitators by Participants:

Reported Needs by Participants:

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

“The CHAP could

be easily inserted

into the current

academic

program for

physicians.”

(General

Practitioner)

“Support work-

ers already have

protocols in place,

adding the CHAP

as a requirement

for patients with

intellectual disabili-

ties would fit well within the system

that is already in

place.”

(Support Worker

Focus Group)

“I would say this

tool is a great tool

for Nurse

Practitioners.”

(Nurse Practitioner)

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

If you would like to comment on this report or to find out more about the study, please contact:

DR. SHAHIN SHOOSHTARIDepartment of Family Social Sciences, Faculty of Human Ecology, University of Manitoba at (204) 474-052 or Shahin.Shooshtari @umanitoba.ca

NEXT STEPS:

1) To have discussions with Manitoba Department of Health about the reimbursement of GP’s 2) To establish a protocol for implementation of the CHAP in Manitoba.

3) To develop methods for evaluating the effectiveness of the CHAP using the provincial health administrative data from the Manitoba Centre for Health Policy Population Health Research Data Repository.

Thank You to:• Participants who willingly gave their time• St. Amant, New Directions and Winnserv• CIHR for the grant to fund this research

http://www.voa.org/ClientResources/Images/DD2.jpg

Comprehensive Health Assessments for Adults with Intellectual Disability (ID) in Manitoba:

A Feasibility Study

REFERENCES:Bigby, C. (1998). Shifting responsibilities: The patterns of formal service use by older people with intellectual disability in Victoria. Journal of Intellectual and Developmental Disability, 23(3), 229-243.

Bradley, E. A., Thompson, A., & Bryson, S. E. (2002). Mental retardation in teenagers: Prevalence data from the Niagara region, Ontario. Canadian Journal of Psy chiatry, 47(7), 652-659.

Council of Canadians with Disabilities. (2013). Canada UN convention on rights of person with disabilities. Retrieved from www.ccdonline.ca/en/international/ un

Janicki, M. P., Davidson, P. W., Henderson, C. M., McCallion, P., Taets, J. D., Force, L. T., ... & Ladrigan, P. M. (2002). Health characteristics and health services utilization in older adults with intellectual disability living in community residences. Journal of Intellectual Disability Research, 46(4), 287-298.

Krahn, G. L., Hammond, L., & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 70-82.

Lennox, N., Rey-Conde, T., & Cooling, N. (2006). Comprehensive health assessments during deinstitutionalization: an observational study. Journal of Intellectual Disability Research, 50(10), 719-724.

Lennox, N., Bain, C., Rey-Conde, T., Purdie, D., Bush, R., & Pandeya, N. (2007). Effects of a comprehensive health assessment program for Australian adults with intellectual disability: a cluster randomized trial. International Journal of Epidemiology, 36(1), 139-146.

Lennox, N., Bain, C., Rey-Conde, T., Taylor, M., Boyle, F. M., Purdie, D. M., & Ware, R.S. (2010). Cluster randomized-controlled trial of interventions to improve health for adults with intellectual disability who live in private dwellings. Journal of Applied Research in Intellectual Disabilities, 23(4), 303-311.

Ouellette-Kuntz, H. (2005). Understanding health disparities and inequities faced by individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 18(2), 113-121.

Robertson, J., Roberts, H., Emerson, E., Turner, S., & Greig, R. (2011). The impact of health checks for people with intellectual disabilities: a systematic review of evidence. Journal of Intellectual Disability Research, 55(11), 1009-1019.

Sullivan, W. F., Berg, J. M., Bradley, E., Cheetham, T., Denton, R., Heng, J., ... & McMillan, S. (2011). Primary care of adults with developmental disabilities Canadian consensus guidelines. Canadian Family Physician, 57(5), 541-553.