The Matrix for Infant Eating (MIF) is a development project sponsored by ICAP and overseen by CIREAS.  There are a significant number of practices that have the ability to generate and share data for research purposes that can advance the state of knowledge and the quality of ankyloglossia science.  This represents a significant untapped resource, but it requires coordination and development of infrastructure.  What is lacking currently are standardized tools and agreed-upon methodology that can be utilized in a variety of clinical settings, by a variety of clinicians or staff from different fields.  CIREAS is now developed enough to oversee and help with deployment and utlization of SyMIE across different practice types globally.  MIF is a standardized list of symptoms with evidence-based methodology instructions for data collection that can act as a template for practices involved in data collection for inter-professional research projects.  Ideally, MIF will be:

-          Have methodology/instructions supported by science and evidence that will create meaningful research data

-          easy to use, with simple instructions

-          efficient to administer, with minimal time usage

-          complementary to the clinical encounter – you can use MIF as a standalone template, or use it in conjunction with other symptom resolution data collection

-          provide a standardized set of data collected with standard methodology that will allow comparison of different intakes methods, different treatment methods

METHODOLOGY/TIMELINE

MIF will be developed with input from ankyloglossia clinicians, but primarily by IBCLCs who work with the tongue tie community seeing breastfeeding patients. Input for improvements to the working template will be collected via google survey and anyone can provide input by clicking on the link to get started. The google form for input can be found at this web address below.  Participants are asked to provide name and email for contact/follow-up purposes, and location of practice (State and Country).  Feedback will be used to develop culturally appropriate and relevant verbiage, which can differ from region to region.  For informational purposes, we will also ask if are a member of ICAP or ASTOT – your information will NOT be used to solicit membership from you or any other junk mail.  You do not need to be a member of either organization to give input, so you may share the links with anyone who you feel could provide valuable input.

The end date for deliverable development and formatting is May 2, 2024. The tool will be made use free or charge and will be the intellectual property of the nonprofit group ICAP.   Input will be solicited in 3 rounds:

Round 1 – focus on symptom inclusion/exclusion, verbiage.   March 18 – March 29, 2024
Now open!  Click on this link:  https://forms.gle/zcHkpepsGoVZoao3A

Round 2 – focus on order of symptoms as listed, and instructions for use.   April 1-April 11, 2024

Round 3 – Comments on final draft of deliverable. April 15-24, 2024

Revisions and changes will be made by consensus, so we need a lot of IBCLC input to help us get the tool to where it will be useful and valuable to clinicians working with breastfeeding infants.  Not all changes will be able to be included, but we anticipate the vast majority of suggestions can be accommodated.

Informed Consent Form

Title of Study: Development of Matrix of Infant Feeding Symptoms

Principal Investigator(s): Raymond J. Tseng DDS, PhD, Sharon Smart PhD, GCInnHE, CPSP, FHEA 

Purpose - the purpose of this study is to gain a better understanding of what lactation consultants think when it comes to what breastfeeding symptoms are important to measure in order to assess an intervention's effectiveness. Before you decide whether or not to participate, it is important for you to understand why the research is being done and what your participation will involve.

Study Procedures:

If you agree to participate, you will be asked to complete an online survey. The survey will ask you questions about your breastfeeding experiences, including any symptoms you may have experienced that are not directly related to a specific medical condition. The survey is estimated to take approximately 20 minutes to complete.  Your responses will help shape the MIF tool so that it can be used across different clinical practices to help measure changes in breastfeeding success. 

Risks and Benefits:

Participation in this study involves minimal to no risk. If you experience any distress, you may choose to discontinue your participation in the survey at any time without penalty. There are no direct benefits to you for participating in this study, but your responses may help researchers gain a better understanding of how to measure breastfeeding symptoms and subsequent resolution.  Your help contributes to improving support for breastfeeding mothers in the future.

Confidentiality:

Your participation in this study is confidential. Your responses will be stored securely and will only be accessible to the research team. Any information obtained in connection with this study that can identify you will remain confidential and will not be disclosed without your permission, except as required by law.

Voluntary Participation:

Your participation in this study is voluntary. You are free to decline to participate or to withdraw from the study at any time without penalty. 

Contact Information:

If you have any questions or concerns about the study, you may contact the principal investigator, Raymond J. Tseng DDS, PhD, at raymond.tseng@curtin.edu.au. 

INFORMED Consent: By completing the survey, you indicate that you have read this consent form, understand the risks and benefits of participation, and voluntarily agree to participate in this study.

The final deliverable will be the intellectual property of the non-profit group ICAP, and will be provided free of charge to anyone who wants it via downloadable PDF.  Research is about collaboration and making these types of resources available to everyone, for the sake of improving patient care outcomes.

The projected date of completion of the MIF deliverable is May 2, 2024 with availability for download by the end of May 2024. 

This project is a joint venture between the International Consortium of oral Ankylofrenula Professionals (ICAP), the ICAP Committee for Interprofessional Research, Education and Ankyloglossia Science (CIREAS) with coordinated involvement from the Australasian Society for Tethered Oral Tissues (ASTOT).  CIREAS is the custodian of project development, and all queries can be submitted to Dr. Raymond Tseng.  ASTOT specific queries can be directed to Dr. Sharon Smart.