First report of factors associated with satisfaction in patients with neurofibromatosis

Abstract

Patient satisfaction is an integral part of quality health care. We assessed whether health literacy and psychosocial factors are associated with patient satisfaction among adults with neurofibromatosis. Eighty adults (mean age = 44 years; 55% female, 87% white) with NF (50% NF1, 41% NF2, and 9% schwannomatosis) completed an adapted Functional, Communicative, and Critical Health Literacy Questionnaire (FCCHL), the Health Literacy Assessment, a series of Patient Reported Outcome Measures Information System (PROMIS) psychosocial tests, and demographics before the medical visit. After, participants completed two measures of satisfaction: the Medical Interview Satisfaction Scale (MISS) to assess satisfaction with the medical visit, and an adapted version of the Consumer Assessment of Healthcare Providers and Systems Health Literacy Item Set (CAHPS-HL) to assess satisfaction with communication with the provider. Although higher FCCHL health literacy (r = 0.319, P = 0.002), male gender (t = 2.045, P = 0.044) and better psychosocial functioning (r = -0.257 to 0.409, P < 0.05) were associated with higher satisfaction with the medical visit in bivariate correlations, only male gender and higher health literacy remained as significant predictors in multivariable analyses. Higher FCCHL health literacy, less pain interference, fewer pain behaviors, and higher satisfaction with social roles and social discretionary activities (r = -0.231 to 0.331, P < 0.05) were associated with higher satisfaction with the communication with the provider in bivariate analyses. Results support the use of psychosocial and health literacy measures in clinical practice. Referrals to psychosocial treatments in addition to brief interventions focused on increasing health literacy may also be beneficial. © 2017 Wiley Periodicals, Inc.

CRISPR/Cas9 editing of Nf1 gene identifies CRMP2 as a therapeutic target in neurofibromatosis type 1-related pain that is reversed by (S)-Lacosamide

“…12,16 The prevalence of pain in patients with NF1 is unknown but quality of life-based questionnaires in Australia, Brazil, France, Italy, the United Kingdom, and the United States consistently identify both the intensity and quality of pain as having a major impact on patients with NF1. 1,11,21,22,30,54,63,64…”

Enrollee Experience with Providers in the Arkansas Medicaid Expansion Program

“…29 Individuals with higher health needs, like our Medicaid cohort, experience both greater health insurance and health illiteracy than those who are relatively healthier. 30,31 Furthermore, health-related literacy deficits can drive both delayed care and emergent care 32,33 impacting the ability to build interpersonal relationships and effective communication with providers 34,35 -factors associated with patient satisfaction. 35 Our results were not significant for specialty care providers, but Medicaid participants generally report less access to specialty providers.…”

“…30,31 Furthermore, health-related literacy deficits can drive both delayed care and emergent care 32,33 impacting the ability to build interpersonal relationships and effective communication with providers 34,35 -factors associated with patient satisfaction. 35 Our results were not significant for specialty care providers, but Medicaid participants generally report less access to specialty providers. 36 Regarding results on electronic communication, literature suggests that patient knowledge and use of healthcare portals is limited and varies as a result of the "digital divide" by age, education, race/ethnicity, and income.…”

CRMP2–Neurofibromin Interface Drives NF1-related Pain

“…Chronic idiopathic pain is a major symptom and comorbidity factor in the neurological disorder Neurofibromatosis type 1 (NF1) (Creange et al, 1999; Drouet et al, 2004). The prevalence of pain in NF1 patients is unknown but qualities of life-based questionnaires consistently identify both the intensity and quality of pain as having a major impact on NF1 patients (Bicudo et al, 2016; Crawford et al, 2015; Ferner, 2007; Ferner et al, 2017; Kodra et al, 2009; Riklin et al, 2017; Wolkenstein et al, 2001; Wolters et al, 2015). The first direct evidence of a causal relationship between neurofibromin, a protein encoded by the Nf1 gene, and pain responses was demonstrated by using a genome editing approach in vivo (Moutal et al, 2017a; Moutal et al, 2017f).…”