Background/Purpose:

Psychosocial factors greatly impact the subjective disease experience and outcomes of children with rheumatic conditions. Attention to the psychosocial aspects of patients’ needs is essential in the multidisciplinary care of children with rheumatic disease. Such understanding can aid the assessment of presenting and persisting symptoms and shed light on barriers to treatment adherence.

In order to obtain baseline data regarding the psychosocial needs impacting pediatric rheumatology patients at our center, a quality improvement survey was undertaken. Here, we will discuss its implementation, review our findings, and outline modifications made to enhance multidisciplinary, patient-centered rheumatic care.

Methods:

Psychosocial needs assessment questionnaires are administered to every patient seen in the Rheumatology Program beginning in October 2016. We have reviewed 1714 questionnaires to date. Assessments ask about 8 areas of psychosocial concern frequently associated with social determinants of health: insurance, food insecurity, transportation to medical appointments, school concerns, housing instability/homelessness, safety, substance abuse, mental health/behavior, and coping with one’s medical condition. Responses can indicate concerns or no concerns in any area, and a follow-up question asks whether help addressing the concerns is desired. Questionnaires are completed by parents/caregivers or by adolescent/young adult patients. Patients can complete questionnaires at multiple office visits and can select as few or as many areas of concern as indicated. All questionnaires are administered in English.

Results:

Preliminary analysis demonstrates that approximately 25% of all questionnaires indicate concerns in at least one domain. In any given area of psychosocial concern, desires for help with addressing the need ranged from 0% (for assistance with substance abuse) to 100% (for assistance with food insecurity/homelessness). The areas of concern most often identified by families include school (61%), mental health/behavior (54%), and coping with rheumatic disease (46%). Overall, this means that 12% of questionnaires endorsed a concern for which social work assistance was requested.

Conclusion:

This quality improvement initiative demonstrates that a sizeable number of patients and families experience psychosocial stressors that may negatively impact the disease process and health outcomes. While we have a robust survey response rate and reproducible findings, there are limitations like self-presentation bias and the confines of the questionnaire design, including being available only in English. Nonetheless, we suspect these limitations lead to the under-reporting of need and requests for assistance. As a result of these findings, we have implemented programmatic changes to more effectively address our patients’ psychosocial needs. Specifically, the data gleaned from this quality improvement initiative is being used to enhance patient care through increased social work presence in the clinic, development of psychosocial support programs for patients and professional education for providers.

« Back to 2017 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-and-family-reported-psychosocial-areas-of-concern-within-pediatric-rheumatology-quality-improvement-data-and-implications-for-practice/