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

In patients with cerebral palsy (CP) and difficulties with feeding, what is the effectiveness of of anti-reflux procedure (since often done in conjunction with gastrostomy placement) or type of tube (J-tube or G-J tube versus typical PEG or surgical gastrostomy)and feeding interventions (food thickeners, nutritional supplementation, gastrostomy, behavioral interventions, etc) in improving nutrition, growth, health, and quality of life Health outcomes should include hospitalizations, episodes of pneumonia, asthma or other respiratory markers. I think we should specifically look mortality as an outcome as well.

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:

Food thickeners, nutritional supplementation, gastrostomy, behavioral interventions, etc, versus standard oral feeding for nutrition.

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.)

All patients with CP, of any age or gender, who have difficulties with oral feeding.

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

Severe CP (measured by GMFCS or other standardized measure of function) may be an important subgroup for efficacy and effectiveness of treatment.

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

Improvements in primary outcomes such as growth, quality of life, functional improvements, participation, survival, avoidance of hospitalization. Improvements in other outcomes such as nutritional status, decreased time spent in feeding-related activities, physical and mental health of primary caregiver.

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

Harms from complications of surgical interventions, chest infections, morbidity, and mortality.

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

• Children
• 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)
• Other

Importance

Describe why this topic is important.

Cerebral palsy (CP) can affect the ability of affected persons to suck, chew, and swallow, leading to under-nutrition, aspiration, decreased quality of life, and mortality. Improvements in delivering nutrition to patients with impaired oral feeding have increased the options for patients, but not without possible harms. Furthermore, it is unclear which subgroups of patients with CP would gain the most benefits from different types of interventions. Systematic reviews of gastrostomy feeding have been performed in the last 5 years; however, to our knowledge, there have been no recent reviews of other feeding interventions such as behavioral modification, nutritional supplements, etc. A systematic review focusing on feeding interventions may provide clinicians and researchers with clear indications for the use of feeding interventions. It may also highlight important outcomes and interventions that should be studied in greater detail before definitive statements on efficacy can be made.

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.)

Stakeholders participating in the AHRQ Issues Exploration on Cerebral Palsy strongly encouraged systematic research into feeding interventions for CP.

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:

There are considerable variations in clinical care regarding the use of feeding interventions for specific populations at specific times. For example, there is variation in indications and timing for feeding gastrostomy and whether or not an anti-reflux procedure should also be done or whether a G-J tube is preferable.

Potential Impact

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

Feeding interventions can be costly and/or dangerous for patients and must be balanced against the morbidity of oral-motor dysfunction. A systematic review of feeding interventions for CP will provide information to clinicians who will make decisions about whether to provide feeding interventions in a specific patient, and when to provide the intervention.

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

As soon as possible.

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

Cerebral palsy affects children and adults, and can be especially disabling for patients without access to health care resources. Feeding interventions may require significant caregiver support, which can limit the ability of children or independent adults to access and/or maintain the intervention.

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)

Feeding interventions can be costly and/or dangerous for patients and must be balanced against the morbidity of oral-motor dysfunction. A systematic review of feeding interventions for CP will provide information to clinicians who will make decisions about whether to provide feeding interventions in a specific patient, and when to provide the intervention.

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

Organization

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