Why was this study done?

The purpose of this study was to understand the availability of psychosocial services across ImproveCareNow.

There have been calls by ImproveCareNow, medical providers, and young persons living with Inflammatory Bowel Disease and their families for increased access to psychosocial services. Psychosocial services are provided by social workers and psychologists with specialized training and skills to support the unique needs of young people living with Inflammatory Bowel Disease and their families. For example, psychosocial providers can teach coping skills to manage and navigate through everyday stressors that accompany living with Inflammatory Bowel Disease (for example, learning how to swallow pills, or screen for symptoms of depression or anxiety), provide coaching for techniques to tolerate symptom flares during treatment (for example, learning relaxation strategies), and help young people prepare for medical procedures (for example, create a coping plan before scopes). Psychosocial providers can also connect patients and families with important resources in the community and support young persons in gaining more independence in their care as they transition into adulthood (for example, learning how to speak up in a doctor’s visit). Understanding the availability of these psychosocial services helps us know how the psychosocial needs are being met for our young persons living with Inflammatory Bowel Disease and their families.

How was the study designed?

This study provides results from a 10-item survey on the availability of psychosocial services across ImproveCareNow that was developed by members of the Social Work and Psychology (SWAP) workgroup of ImproveCareNow. This survey was developed following a request from the ImproveCareNow Community Council to gain a better understanding of the availability of psychosocial services across ImproveCareNow. We want to provide our special thanks to the ImproveCareNow Communications Team who helped send this survey out and collect responses from ImproveCareNow Care Centers. We also want to express our thanks to all the ImproveCareNow Care Center points of contact that completed the survey.

What were the results?

The survey was sent to 102 ImproveCareNow Care Centers, with 58 centers completing the survey (56.9% response rate). Although the response rate was favorable, meaning greater than 50%, this might still represent a lower estimation of psychosocial services available across ImproveCareNow Centers. Although the survey was sent to US and international ImproveCareNow Care Centers, only Centers located within the US responded to this current survey. The majority of responding Centers were Academic Medical Centers (53%), followed by Health Systems (regional hospitals, 40%), private practices (5%), and those that selected unidentified types (2%). Across the 58 responding Care Centers, there were 52 social workers, 37 psychologists, and one Licensed Professional Counselor. Also, most psychosocial service providers used telehealth, or virtual options to connect with families, with more than 25% using telehealth services for half the time or more to connect with families.

What does this mean for patients, families and clinicians?

A key takeaway from this study is that most ImproveCareNow Care Centers reported that psychosocial services were available (52 out of the 58 Centers who took the survey, 89.7%), however nearly half (47.9%) reported availability of these services was limited to one day per week or less. One day or less per week means that the amount of time pediatric patients with Inflammatory Bowel Disease and their families may have access to psychosocial services remains quite limited even for Centers with psychosocial services available. In other words, even with a psychosocial provider working with an Inflammatory Bowel Disease Care Center, there are likely patients and families that may need psychosocial care who were not able to receive it.

The information gathered from this current study calls important attention to the need for greater availability of psychosocial services for youth with Inflammatory Bowel Disease and their families across the ImproveCareNow network. Discussing the results from this study could be helpful if used by medical teams, hospital leaders, patients, and families in advocating for increased access to psychosocial services where they receive their Inflammatory Bowel Disease specific medical care.

Study authors

Winnick, Joel B. PhD, ABPP; Jacobs, Noel PhD; David, Jennie G. PhD; Moua, Mai Ku MSW; Saeed, Shehzad A. MD, FAAP, AGAF

Study status

Publication date is November 2023. You can locate it:

  • On our website and online in JPGN Reports
  • JPGN Reports 4(4):p e349, November 2023. | DOI: 10.1097/PG9.0000000000000349
  • This is an open access article distributed under the Creative Commons Attribution License 4.0 (CCBY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

About ICN Research Explained

We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with patients and parents/caregivers to create and share accessible summaries of completed research called ICN Research Explained

Prepared by: Joel B. Winnick, PhD, ABPP and Jennie G. David, PhD with input from the ICN Research Committee


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