Volume 173, Issue 3 pp. 671-677
Original Article
Full Access

First report of factors associated with satisfaction in patients with neurofibromatosis

Eric Riklin

Eric Riklin

Department of Psychiatry, Benson-Henry Institute for Mind Body Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

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Mojtaba Talaei-Khoei

Mojtaba Talaei-Khoei

Hand and Upper Extremity Service, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

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Vanessa L. Merker

Vanessa L. Merker

Department of Neurology and Cancer Center, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

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Monica R. Sheridan

Monica R. Sheridan

Department of Neurology and Cancer Center, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

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Justin T. Jordan

Justin T. Jordan

Department of Neurology and Cancer Center, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

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Scott R. Plotkin

Scott R. Plotkin

Department of Neurology and Cancer Center, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

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Ana-Maria Vranceanu

Corresponding Author

Ana-Maria Vranceanu

Department of Psychiatry, Behavioral Medicine Service, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts

Correspondence to:

Ana-Maria Vranceanu, Ph.D., Department of Psychiatry, Behavioral Medicine Service, One Bowdoin Square, 7th floor, Suite 758, Boston, MA 02114.

E-mail: [email protected]

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First published: 17 February 2017
Citations: 10
Scott R. Plotkin and Ana-Maria Vranceanu share authorship.

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.

INTRODUCTION

Patient satisfaction is increasingly recognized as an important dimension of health outcome research, and a major component of quality of health care. Patients’ satisfaction with a medical visit predicts compliance with prescribed treatments [Martin et al., 2005], thus impacting both the effectiveness of treatment and health care costs. The level of satisfaction also predicts whether patients attend future medical appointments, and is associated with better overall health [Prakash, 2010]. Patient satisfaction is routinely surveyed in medical settings, and is considered an important indicator of the success of doctors and hospitals.

Patient satisfaction is a multidimensional construct influenced by both physician and patient characteristics [Bennett et al., 2011; Edwards et al., 2011; Adogwa et al., 2014]. Among patient specific factors, younger age, unmet expectations, negative health outcomes, and psychosocial distress (depression and anxiety) have been associated with lower ratings of satisfaction [Jackson et al., 2001; Bair et al., 2007; Vranceanu and Ring, 2011]. There is also evidence that patients’ level of health literacy—the capacity of individuals to access, understand, and use health information to make informed and appropriate health-related decisions [Ishikawa et al., 2008]—also influences ratings of patient satisfaction [Carrasquillo et al., 1999; Shea et al., 2007], such that low health literacy is associated with lower patient satisfaction.

In order to improve outcomes for both patients and physicians, it is important to understand individual factors associated with patient satisfaction. As health care is becoming increasingly market driven, with both adults and insurance companies comparing physician performance, those with lower patient satisfaction ratings may struggle to retain patients in their practice and assure reimbursement for their services. Furthermore, understanding modifiable factors associated with patient satisfaction can help providers address these issues within their medical visit, or provide referrals adjunct to the care they provide, thus continuing to engage patients in care and improving the quality of care they provide.

The current study tested the relationship of psychosocial characteristics, clinico-demographic variables, and health literacy to patient satisfaction in adults with neurofibromatosis—a group of progressive, genetic, chronic-incurable tumor suppressor syndromes. In order to provide a more comprehensive assessment of satisfaction, we measured both general satisfaction with a medical visit, and satisfaction with communication with the medical provider during the medical visit. We hypothesized that lower health literacy and higher psychosocial distress would be significantly associated with both lower satisfaction with the medical visit, as well as lower satisfaction with how the medical doctor communicated during the medical visit.

MATERIALS AND METHODS

Sample and Settings

The institutional review board approved this study, which took place in a neurofibromatosis outpatient clinic at a major medical center in Boston, Massachusetts between March 2015 and March 2016. The study inclusion criteria for neurofibromatosis patients were as follows: (i) 18 years of age or older; (ii) English fluency and literacy; and (iii) a confirmed diagnosis of neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis by the treating physician or medical record review. The exclusion criteria for neurofibromatosis patients were as follows: (i) severe active or untreated major mental illness that would interfere with study participation (i.e., untreated psychosis or suicidality); and (ii) inability or unwillingness to complete the assessments online.

Design

This study was a descriptive, cross-sectional, correlational study of the relationship of health literacy and psychosocial factors to satisfaction with a medical visit and satisfaction with communication with a medical provider, in adult patients with neurofibromatosis. Two research assistants (RAs) rounded in the neurofibromatosis outpatient clinic two days a week and identified adults diagnosed with neurofibromatosis. The RAs approached eligible patients in the waiting room to discuss the study. Patients were informed that participation is voluntary, that they can discontinue their participation at any time, and that withdrawal from the study would not compromise their medical care. Those who agreed to participate provided verbal informed consent.

A total of 96 new and follow-up patients were approached for participation. Of these, 86 agreed to participate. Five participants did not complete all of the study questionnaires and one participant was found to be ineligible because he did not speak English at a 6th grade level. Therefore, data from 80 participants was included in the final analysis.

Participants completed the following measures on an encrypted iPad while they were waiting to be seen by their physician: a demographic form, an adapted version of the Functional, Communicative, and Critical Health Literacy Questionnaire (FCCHL) [Ishikawa et al., 2008], the Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT) computer adaptive test (CAT) [Yost et al., 2009], and a series of Patient Reported Outcome Measures Information System (PROMIS) computer adaptive tests [Cella et al., 2010]. Participants needing additional time to complete the measures finished after their medical visit.

After the medical visit, patients completed the Medical Interview Satisfaction Scale (MISS) [Wolf et al., 1978] 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) [Agency for Healthcare Research and Quality, 2016] to assess the satisfaction with medical communication. Participants completed these measures on a paper survey at the clinic or via an email link at home. All data were entered directly into REDCap, a free, secure, and HIPAA-compliant web-based application immediately after completion of the questionnaires. On average, it took each participant between 1 and 5 min to complete the PROMIS measures, and about 20 min to complete the health literacy and satisfaction measures.

Measurement

Demographic form

Patient characteristics were assessed via self-report and included age, gender, race/ethnicity, diagnosis, status as a new or follow-up patient, and self-reported learning disability.

Functional, Communicative, and Critical Health Literacy Questionnaire (FCCHL)

The adapted FCCHL, based on the survey developed by Ishikawa et al. [2008], assessed an individual's experiences and behaviors related to three aspects of health literacy: functional literacy, the basic level of reading and writing skills that let someone function effectively in everyday situations; communicative literacy, the degree of information seeking behavior and the ability to derive meaning from different forms of communication; and critical literacy, more advanced skills for critically analyzing information and using information to exert greater control over healthcare events and situations. The scale was adapted based on cognitive interviews with United States patients to have 15 items scored using a 5-point Likert scale with responses ranging from 0 (“Never”) to 4 (“Always”) [unpublished data, courtesy of Sarah McDannold]. Several items were reverse coded in order to correct for negative wording. All items are summed and then divided by the total number of questions answered to determine one's health literacy. Scores range from 0 to 4, with higher scores indicating greater health literacy. Scores are provided for the total scale as well as for the three subscales of functional, communicative, and critical health literacy. The functional health literacy subscale consists of six items, the communicative health literacy subscale consists of five items, and the critical health literacy subscale consists of four items.

Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT)

The Health LiTT CAT was used to measure one's capacity to process and understand health-related information [Yost et al., 2009] through a series of performance based exercises. This self-administered multimedia touchscreen test was developed using item response theory (IRT) and covers three topics important to patients and their health care providers: disease/health-related topics, insurance-related topics, and research-related topics. Respondents choose the correct answer from four multiple-choice options and a final score is calculated based on the number of correct responses.

Patient-Reported Outcomes Measurement Information System (PROMIS)

PROMIS CAT for physical, emotional, and social domains were selected as relevant for the NF population. Version 1.0 item bank CAT was administered to assess pain behaviors, anxiety, depression, fatigue, satisfaction with social roles, and satisfaction with discretionary activities. Version 1.1 item bank CAT was used to assess pain interference and anger. Version 1.2 item bank CAT was used to assess physical function. These PROMIS measures allow for a precise measurement of health status domains with fewer items, efficient questions, and less participant burden [Cella and Chang, 2000; Fries et al., 2005; Fries et al., 2009]. Scores are based on graded response parameters, with higher scores indicating greater measurement of the construct being assessed (e.g., greater anxiety, more fatigue, etc.).

Medical Interview Satisfaction Scale (MISS)

Satisfaction with the medical visit was measured with the MISS [Wolf et al., 1978]. The 21 items are scored using a 7-point Likert scale with responses ranging from 1 (“Very strongly disagree”) to 7 (“Very strongly agree”). Item scores were averaged to determine one's satisfaction with individual doctor-patient consultations. Scores range from 1 to 7, with higher scores indicating higher satisfaction. Items assess perception of comfort with the communication with provider, patient-doctor rapport, distress relief, and intent for compliance with the medical treatment.

Adapted Consumer Assessment of Healthcare Providers and Systems Health Literacy Item Set (CAHPS-HL)

Satisfaction with the medical provider's communication skills was measured with an adapted version of the CAHPS Health Literacy Item Set (CAHPS-HL) [Agency for Healthcare Research and Quality, 2016]. The Health Literacy Item Set was developed as a supplement to the Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) 12-month Survey and measures how well healthcare providers communicate health information to their patients. As the focus of our study was satisfaction with a single medical visit, we adapted the existing health literacy supplemental item set to have the same answer choices as those on the CG-CAHPS Visit Survey. The 24 items were coded and scored using a 3-point Likert scale with responses ranging from 1 (“Best”) to 3 (“Worst”). All participants were directed to answer 12 items, and responses to up to 12 additional items were requested based on the presence of medical situations that occurred within the visit. For example, if a participant indicated that the doctor discussed the results of a blood test, X-ray, MRI, or other test during the visit, they were then asked if the test results were easy to understand. Items that were negatively worded (i.e., “my provider talks too fast”) were reverse coded so that lower scores represented better communication. The scores for each item answered are summed and divided by the total number of questions answered to provide an overall rating of one's experiences with their health care provider. Scores range from 1 to 3, with lower scores indicating greater satisfaction.

Statistical Analyses

We used Pearson correlations to assess zero-order bivariate correlations among continuous demographics and main study measures, with pairwise deletion for missing independent variables. We used independent-sample t-tests and one-way ANOVAs to examine differences in each satisfaction measure by dichotomous and categorical demographic variables, and to explore differences in each satisfaction measure by self-reported learning disabilities and by NF type. All variables associated with each satisfaction measure at <0.05 level were entered in a multivariable linear regression to detect predictors of patient satisfaction with provider and with communication with provider. Mean imputation was used to account for missing data in predictor variables within the multivariable regression.

RESULTS

Sample Characteristics

A total of 80 patients completed satisfaction measures between March 2015 and March 2016 (Table I). Participants were primarily female (58%), white (89%), and had previously visited the NF clinic (94%). Five participants (6%) were new patients coming to the NF clinic for the first time. The average age of patients was 44.3 (SD = 15.2). Half of patients had NF1 (50%), while the remaining patients were diagnosed with NF2 (41%), and schwannomatosis (9%). Eighteen participants (23%) self-reported that they had a learning disability and, out of those patients, the majority of these patients were diagnosed with NF1 (89%).

Table I. Characteristics of the Study Population (n = 80)
Variable M (SD) or N (%)
Age (in years) 44.3 (15.2)
Gender
Female 46 (57.5)
Male 34 (42.5)
Race/ethnicity
White 71 (88.8)
Latino 1 (1.3)
Black 4 (5.0)
Other 4 (5.0)
New patient
No 75 (93.8)
Yes 5 (6.3)
Diagnosis
Neurofibromatosis type 1 40 (50.0)
Neurofibromatosis type 2 33 (41.3)
Schwannomatosis 7 (8.8)
Learning disability
No 62 (77.5)
Yes 18 (22.5)
Education level
Less than high school (<12 years) 1 (1.3)
Completed high school or GED (12 years) 13 (16.3)
Some college/associates degree (<16 years) 23 (28.8)
Completed 4 years of college (16 years) 23 (28.8)
Graduate/professional degree (>16 years) 19 (23.8)
Unknown/not reported 1 (1.3)
Marital Status
Single, never married 26 (32.5)
Married 40 (50.0)
Living with significant other 4 (5.0)
Separated/divorced 8 (10.0)
Widowed 2 (2.5)
  • M (SD), mean (standard deviation); N (%), number (percentage).

Across the entire study sample, the mean MISS score was 6.14 (SD = 0.73) and the mean CAHPS-HL score was 1.28 (SD= 0.19), indicating high levels of satisfaction. There was a significant difference among males and females on the overall scores of the MISS (t = 2.045, P = 0.044), with male patients reporting higher satisfaction with their medical provider. There were no significant differences in MISS or CAHPS-HL by any other demographic characteristics including status of new patient versus follow-up, NF type, or learning disabilities (P > 0.05).

Zero-Order Bivariate Correlations

Pearson correlations were used to assess bivariate associations among continuous demographics and main study measures (Table II). The MISS-21 and CAHPS-HL were found to be significantly inter-correlated (r = −0.520). The MISS-21 total score was significantly inter-correlated with all PROMIS measures except physical function (r = −0.257 to 0.409), such that participants with better scores on psychosocial variables reported higher satisfaction with the medical visit. The largest correlation coefficients were seen between MISS-21, and PROMIS satisfaction with social roles (r=0.409), and PROMIS satisfaction with discretionary social activities (r =0.409). The MISS-21 was also significantly inter-correlated with the overall FCCHL measure (r = 0.297), such that patients with higher health literacy reported higher patient satisfaction with the medical visit.

Table II. Zero-Order Pearson Product-Moment Correlation Coefficients Between Continuous Study Variables and Satisfaction With Medical Visit and Consumer Assessment-Health Literacy
Measure MISS-21 CAHPS-HL
MISS-21 1
CAHPS-HL −0.520*** 1
Health LiTT 0.046 −0.159
FCCHL 0.297** −0.377
Physical function 0.149 −0.204
Pain interference −0.257* 0.278
Pain behavior −0.274* 0.331
Anxiety −0.343** 0.194
Depression −0.377*** 0.073
Anger −0.377*** 0.196
Fatigue −0.346** 0.138
Satisfaction with discretionary social activities 0.409*** −0.231*
Satisfaction with social roles 0.409*** −0.328**
Age 0.002 0.083
  • MISS-21, Medical Interview Satisfaction Scale-21; CAHPS-HL, Adapted Consumer Assessment of Healthcare Providers and Systems Health Literacy Item Set; Health LiTT, Health Literacy Assessment Using Talking Touchscreen Technology; FCCHL, Functional, Communicative and Critical Health Literacy.
  • * P < 0.05.
  • ** P ≤ 0.01.
  • *** P ≤ 0.001.

The CAHPS-HL was found to be significantly inter-correlated with the FCCHL (r = −0.377, P = 0.001) such that patients with higher health literacy reported higher satisfaction with their provider's communication of medical information. The CAHPS-HL was also significantly correlated with PROMIS measures of pain and social satisfaction, such that participants with lower pain behavior, less pain interference, higher satisfaction with social roles, and higher satisfaction with discretionary social activities reported increased satisfaction with provider's communication of medical information. There were no other significant correlations among measures.

Relations of Psychosocial Characteristics to Satisfaction with the Medical Visit (MISS)

The multivariable linear regression model with gender, PROMIS measures, and FCCHL as predictors, and MISS-21 as dependent variable was found to be significant (R2 = 0.319; P = 0.002) (Table III). FCCHL (P = 0.044) and male gender (P = 0.019) were the only statistically significant predictors of overall satisfaction.

Table III. Multivariable Linear Regression Model: Which Factors Influence Medical Interview Satisfaction
Predictor b (SE) 95%CI β t P △R2 △F P
FCCHL 0.338 (0.164) (0.010, 0.666) 0.231 2.053 0.044
Pain interference 0.015 (0.015) (−0.015, 0.044) 0.197 0.991 0.325
Pain behavior −0.005 (0.013) (−0.030, 0.021) −0.069 −0.378 0.707
Anxiety −0.003 (0.015) (−0.032, 0.026) −0.039 −0.222 0.825
Depression −0.007 (0.017) (−0.042, 0.027) −0.082 −0.436 0.664 0.319 3.237 0.002
Anger −0.004 (0.014) (−0.031, 0.023) −0.045 −0.288 0.774
Fatigue −0.007 (0.012) (−0.030, 0.017) −0.083 −0.550 0.584
Satisfaction with discretionary social activities 0.011 (0.014) (−0.017, 0.038) 0.126 0.757 0.452
Satisfaction with social roles 0.015 (0.013) (−0.010, 0.041) 0.205 1.179 0.242
Gender 0.381 (0.158) (0.065, 0.697) 0.258 2.404 0.019
  • b, unstandardized coefficients; 95%CI, 95% confidence interval; β, standardized coefficients; FCCHL, Functional, Communicative and Critical Health Literacy.
  • Note: Dependent variable of the regression model: Medical Interview Satisfaction Scale-21 (MISS-21).

Relations of Psychosocial Characteristics to Satisfaction with Communication with Provider (CAHPS-HL)

The multivariable model with PROMIS measures (pain behavior, pain interference, satisfaction with social roles, and satisfaction with discretionary social activities) and the FCCHL as predictors, and CAHPS-HL as dependent variables was also found to be significant (R2 = 0.244; P = 0.001) (Table IV). FCCHL (P = 0.002) was the only statistically significant predictor of satisfaction with the medical provider's communication skills.

Table IV. Multivariable Linear Regression Model: Which Factors Influence Consumer Assessment of Healthcare Providers Communication
Predictor b (SE) 95%CI β t P ΔR2 ΔF P
FCCHL −0.013 (0.041) (−0.212, −0.048) −0.337 −3.151 0.002
Pain interference −0.001 (0.004) (−0.008, 0.007) −0.045 −0.229 0.819
Pain behavior 0.005 (0.003) (−0.001, 0.012) 0.281 1.552 0.125 0.244 4.770 0.0001
Satisfaction with social roles −0.004 (0.003) (−0.011, 0.002) −0.231 −1.430 0.157
Satisfaction with discretionary social activities 0.004 (0.003) (−0.003, −0.010) 0.167 1.071 0.287
  • b, unstandardized coefficients; 95%CI, 95% confidence interval; β, standardized coefficients; FCCHL, Functional, Communicative and Critical Health Literacy.
  • Note: Dependent variable of the regression model: Adapted Consumer Assessment of Healthcare Providers and Systems Health Literacy Item Set (CAHPS-HL).

DISCUSSION

This study sought to test the relationship of psychosocial factors, clinico-demographic variables, and health literacy to two interrelated aspects of satisfaction in patients with neurofibromatosis: satisfaction with the overall medical visit and satisfaction with communication with the medical providers.

As expected, the two satisfaction measures were interrelated. However, the relationship of psychosocial factors to each of the satisfaction measures followed a different pathway. Specifically, we found that better psychosocial functioning as assessed by all individual PROMIS measures except physical functioning, and better overall functional, communicative, and critical health literacy were significantly associated with higher satisfaction with the medical visit in bivariate correlations. These findings are consistent with prior research in other populations showing that lower self-reported health literacy [Carrasquillo et al., 1999; Shea et al., 2007] and greater psychological distress [Hermann et al., 1998; Abtahi et al., 2015] are associated with lower patient satisfaction with medical visits. However, only male gender and health literacy (as assessed by the FCCHL) were significant predictors of MISS in multivariate analyses. That male gender was associated with provider satisfaction is consistent with prior research showing that patients relate more to providers of the same gender [Hall et al., 1994; Roter et al., 1999]; in our study, both medical providers were male. The fact that health literacy remained a strong predictor in multivariate analyses, highlights the importance of accounting for a patient's level of health literacy within the medical visit. Taken together, these findings show that health literacy and gender are the most important factors in determining satisfaction with the medical visit, and stress the importance of accounting during the entire medical interaction.

With regard to satisfaction with the communication with the medical providers, only higher satisfaction with social roles, lower pain behaviors, lower pain interference, and higher health literacy (as assessed by FCCHL) were significantly associated with higher satisfaction with communication with the medical provider in bivariate correlations. Little prior research has examined these relationships thus far, but those studies corroborated our findings showing that higher pain levels and lower social roles are associated with lower patient satisfaction with provider communication [Comstock et al., 1982; Khayat and Salter, 1994; Jensen et al., 2010; Vranceanu and Ring, 2011; Verlinde et al., 2012]. The finding that higher health literacy (as assessed by FCCHL) is associated with higher satisfaction with the communication with the medical provider is consistent with prior evidence [Mayeaux et al., 1996; Williams et al., 2002; Schillinger et al., 2004; Sudore et al., 2009; Kripalani et al., 2010]. That FCCHL was the sole predictor of communication with the medical provider supports the contention that medical providers should account for level of health literacy during the medical visits.

Although, self-reported health literacy as assessed by the FCCHL had a significant association with both satisfaction with medical provider and satisfaction with communication with provider, performance based health literacy, as assessed by Health LiTT, had no association with any of the satisfaction measures. This finding is consistent with a prior study that assessed health literacy through the Newest Vital Sign, another performance based measure [Menendez et al., 2015]. It may be that assessing health literacy through exercises may not necessarily translate into what is actually happening in patients’ real life.

There were several limitations to this study. First, the sample was relatively homogenous such that the NF adults who attended the clinic had similar demographics and characteristics, and they all attended the same tertiary hospital. Subjects were mainly follow-up patients, thus engaged in care and with prior, established relationships with their providers. Therefore, these results are not necessarily representative of the entire NF population. Second, we did not control for all relevant confounding variables that might have affected the results. For example, we did not collect data on previous surgeries, medications, mental health conditions, or any other external factors that could have influenced patient satisfaction. Third, as with most self-reported data, there is always a risk of subject bias when collecting data. Fourth, the sample was relatively small. Future studies should use larger, more heterogeneous NF populations throughout multiple centers. Fifth, as this is the first study to use the 15-item version of the FCCHL with NF adult patients, future studies should replicate our results for validation purposes. Sixth, even though the study doctors did not know which patients participated in the study nor did they discuss the study with the participants themselves, the fact that they were aware of the study could have influenced how they interacted with the patients creating a confound. Even with all of these limitations in mind, this study is the first of its kind and demonstrates the importance of understanding individual factors associated with patient satisfaction in adults with neurofibromatosis.

Results underscore the importance of understanding individual psychosocial factors and health literacy and tailoring treatment based on patient's presentation. To ensure higher overall satisfaction with the medical visit, providers should be mindful primarily of patients’ health literacy and secondarily of psychosocial factors which may influence patients perceptions of rapport, comfort and communication with provider, as well as compliance with treatment recommendations. We believe that it would be important to include measures of health literacy as part of the medical information packet that all new patients complete prior to the visit. This information could then be used to guide physician's communication with patients during the visit. Further, we believe that it would be important to develop brief interventions (perhaps web based) focused on addressing specific aspects of health literacy assessed by the FCCHL, which could be administered to patients to use at home or while they wait for their medical appointments. Similarly, we believe that it would be important to comprehensively assess patient's psychosocial functioning before their medical visit, through the PROMIS CAT battery. This could be easily done through a link sent securely to participants. Both patient and provider would then receive a report and interpretation of scores, which is done automatically for PROMIS measures. The information could next be used as part of the medical visit both to tailor communication and to provide referrals.

We recommend similar strategies to increase patient satisfaction with communication; providers should be mindful primarily of patients’ level of health literacy, and secondarily of pain related coping and social factors that may be directly influenced by NF symptoms.

In sum, results support the use of psychosocial and health literacy measures in clinical practice before the medical visit, to allow providers to directly assess these constructs and, when needed, modify both communication and interaction with patients in order to promote patient satisfaction. Referrals to psychosocial treatments in addition to brief interventions focused on increasing health literacy may also be beneficial.

DISCLOSURE

Eric Riklin, Mojtaba Talaei-Khoei, Monica R. Sheridan, and Justin T. Jordan report no disclosures. Vanessa L. Merker receives research support from the Program in Cancer Outcomes Research Training (NCI R25CA92203) and a Young Investigator Award from the Children's Tumor Foundation. Scott R. Plotkin receives research support from the Children's Tumor Foundation, NIH, and Department of Defense Neurofibromatosis Clinical Trials Consortium. Ana-Maria Vranceanu receives research support from the Children's Tumor Foundation.

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