Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

How should osteoporosis/osteomyelitis be screened for, followed and managed in people with chronic mobility and neurological disorders such as cerebral palsy and traumatic brain injury.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

diet/supplement/exercise medication (bisphosphonates oral vs. IV for those with swallow problems and aspiration risk; other medications for osteoporosis); how long to keep on meds; when to start; indications e.g. spontaneous fractures? diagnostic screening (value of DEXA in this population esp. with vit D deficiency from seizure disorders, lack of sunlight, medications or disability related problems that interfere with absorption) prevention (exercise for people who have very little mobility; spasticity or hypotonia etc., role of supplements like calcium and vit. D, formulation of vit D to give) when should treatment start or indications; screening and monitoring intervals.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

People with complex, long term disabilities who do not have progressive medical problems (e.g. not elders or in decline at end of life)

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

Developmental disabilities, brain and spinal cord injuries

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Less pain, fewer fractures, better function and participation

Describe any health-related risks, side effects, or harms that you are concerned about.

Osteonecrosis, kidney stones, esphagitis, ineffectiveness

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Developmental delays, attention-deficit hyperactivity disorder, and autism
• Functional limitations and disability

AHRQ Priority Populations

• Minority groups
• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

• Medicaid
• Medicare
• State Children's Health Insurance Program (SCHIP)

Importance

Describe why this topic is important.

People with disabilities have very high fracture rates. Risks include immobility, lack of sunlight, lack of exercise, medications esp. seizure and antipsychotics that impact vit D absorption, unsteady gait and other neuromuscular problems that create risks for falls, atypical pain behavior and lack of ability to self protect or communicate about distress, spasticity.

The cost of fractures to the system is very high as they are hard to recognize, hard to treat, decrease function which increases long term care costs and creates legal liabilities for caregivers.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

Don’t know how to take care of my patients and they are having bad outcomes.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

We know almost nothing about care of adults with developmental disabilities and fractures are a major health disparity and common problem that has a huge impact on function and cost of long term care and causes severe human suffering.

Describe the timeframe in which an answer to your question is needed.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

disabilities

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

We know almost nothing about care of adults with developmental disabilities and fractures are a major health disparity and common problem that has a huge impact on function and cost of long term care and causes severe human suffering.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program