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Barriers to Access Faced by Non-English Speaking Families of Children with Neuromuscular Condition or Cerebral Palsy: A Quality Improvement Project to Address the Disparity

Grant Recipient: Mara Karamitopoulos, MD, FAAOS

New York Univ Langone Orthopaedic Hospital
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Further Funding:
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Our goal was to construct a culturally sensitive, multi-language questionnaire for our Cerebral Palsy (CP) patients to identify the barriers their families have noted in their care. Our institution is in a unique position as we see a large percentage of patients that are non-English-speaking, foreign-born, and with varied cultural and socioeconomic backgrounds.  We had also noted that age of initial presentation to our Neuromuscular Clinic was 6 years old, and many of our patients had not seen an orthopedist prior to that point.  In our population, we noted that our patients from families where English was not the primary language in the home faced more barriers to care, had delayed diagnoses, less consistent care, and less access to specialists.
We generated a multiple choice questionnaire addressing demographics, initial diagnosis and treatment information, parent’s feelings regarding access to care, services available, services required but unable to be obtained, health insurance and coverage obstacles, cultural competency and challenges regarding coordination of care. With the financial help of the POSNA microgrant, we were able to translate our questionnaire into Spanish, Mandarin, Russian, and Bengali, which are the most frequently spoken non-English languages in our clinic.
A verified translating service that has worked extensively with our institution was used
Unfortunately, COVID took a large toll on our ability to collect data. Completion of translation and the logistics of ensuring questionnaire completion in the Neuromuscular clinic was streamlined only a couple of months before the COVID 19 pandemic forced the majority of our clinics to shut down. We attempted to send out the questionnaire via Redcap to patients and their families, but this proved too difficult and we could not reliably get completed questionnaires. In the last month, we restarted our collection and are now receiving 10-15 questionnaires a week. We are now back to a consistent clinic schedule along with consistent questionnaire collection. We expect our numbers to promptly increase.
We performed a preliminary analysis on our completed surveys. There were 25 completed English surveys and 8 completed Spanish surveys. We do not currently have any other non-English questionnaire filled out, and so the analyses are between English and Spanish speaking groups. A Fisher exact tests was performed on all questions (English v Spanish-speaking patients). All multiple choice questions had the answers collapsed so there were two options. For example, we combined “not difficult & somewhat difficult” and “very difficult & not possible”.
There were several question fields in our preliminary analysis that were statistically significant (P<0.05):
  • More English-speaking patients were diagnosed at < 2 years (88% v 50%, P 0.47)
  • Significantly more Spanish speaking patients answered yes to: During the past 12 months was there any time when this child needed health care but it was not received? (100% v 8% p< 0.001)
  • Significantly more English speaking patients compared to Spanish speaking patients received speech therapy (84% v 38%, p = 0.02)
  • More Spanish- speaking parents answered that it was either very difficult or not possible to get referrals for any additional care. (33% v 0%, p = 0.046)
  • Spanish-speaking families were more likely to feel that their child’s doctors/ healthcare providers did not spend enough time with them. (38% v 0%, p = 0.014)
  • Our Spanish-speaking families were more likely to leave their jobs or take a leave of absence because of their child’s health conditions. ( 75% v 30%, P =0.44)
These preliminary results confirm our concerns that minority groups have delayed diagnoses, more challenges in obtaining consistent care, and may feel greater financial hardships when trying to get their children all the care they need. As we continue to collect and analyze data from the surveyed population groups, we plan to modify and improve our care to each group to address these problems.
We have started gaining momentum and will continue data collection. Our goal is to have large enough groups in each language to compare them individually, in order to help us identify if there are any additional disparities particular to specific populations. This study has already inspired additional projects in our Department aimed at enhancing access to and quality of care for CP patients and their families. One of our residents has applied for an institutional research fellowship to continue our project. We are also applying for additional external grant funding.