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SYMPOSIUM: COMPREHENSIVE ORTHOPAEDIC CARE

Patients With Limited Health Literacy Have Similar Preferences but Different Perceptions in Surgical Decision-making for Carpal Tunnel Release

Roh, Young Hak MD; Koh, Young Do MD; Kim, Jong Oh MD; Noh, Jung Ho MD; Gong, Hyun Sik MD; Baek, Goo Hyun MD

Author Information

Y. H. Roh, Y. D. Koh, J. O. Kim Department of Orthopaedic Surgery, Ewha Womans University School of Medicine, Seoul, Korea

J. H. Noh Department of Orthopaedic Surgery, Kangwon National University Hospital, Baengnyeong-ro, Chuncheon-si, Gangwon-do, Korea

H. S. Gong, G. H. Baek Department of Orthopaedic Surgery, Seoul National University College of Medicine, Seoul, Korea

J. H. Noh, Department of Orthopaedic Surgery Kangwon National University Hospital 156 Baengnyeong-ro, Chuncheon-si Gangwon-do 200-722, Korea email: [email protected]

Each author certifies that neither he, nor any member of his immediate family, have funding or commercial associations (consultancies, stock ownership, equity interest, patent/licensing arrangements, etc) that might pose a conflict of interest in connection with the submitted article.

All ICMJE Conflict of Interest Forms for authors and Clinical Orthopaedics and Related Research® editors and board members are on file with the publication and can be viewed on request.

Each author certifies that his institution approved or waived approval for the human protocol for this investigation and that all investigations were conducted in conformity with ethical principles of research.

This work was performed at Ewha Womans University Mokdong Hospital, Seoul, Korea; and Gil Medical Center, Incheon, Korea.

Clinical Orthopaedics and Related Research: April 2018 - Volume 476 - Issue 4 - p 846-851
doi: 10.1007/s11999.0000000000000075
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Abstract

Introduction

Health literacy is defined as the ability to obtain, process, and understand health information needed to make appropriate health decisions [18]. Health literacy includes such skills as the ability to comprehend prescription bottle labels, follow written and oral health instructions, and understand physician dialogue, and it may be significantly lower than their general literacy level [2]. A 2006 study by the US Department of Education found that 36% of adults have only basic or below basic literacy skills in dealing with health-related materials [30]. Individuals with limited health literacy are more likely to be hospitalized and make medication errors, and they are less likely to obtain preventive care and know how to manage their health problems [4].

Shared decision-making refers to the process by which the physician and informed patient make a shared medical decision that takes into account the preferences and values of the patients [28], and it is well established as the best practice to improve both patient satisfaction and goal-directed care, especially in patients with diseases that affect quality of life, including orthopaedic diseases, rather than those related to a life-threatening condition [13]. Patients’ involvement in surgical decision-making should be based on patients having a proper understanding of their medical condition [18,28]. However, many patients have difficulty in understanding their medical conditions, medications, and instructions; and these circumstances may be exacerbated by the fact that physicians overestimate the health literacy of their patients [18].

Patients who are informed and involved in their health care demonstrate improved decision-making and better health outcomes [22]. However, studies have disagreed over the degree to which differences in health literacy affect patients’ preferences for shared decision-making [1,2,12]; we therefore sought to evaluate this in the context of shared decision-making about carpal tunnel release. Although the general indication for surgical treatment for carpal tunnel syndrome (CTS) is a lack of symptomatic improvement after conservative treatment, the decision to undergo surgery is multifactorial and is based on a mutual decision between the patient and the surgeon [27].

We attempt to assess patients’ preferred and perceived role in shared decision-making in relation to their health literacy. This study sought to answer the following questions: (1) Do patients with limited health literacy have different preferences of shared decision-making for carpal tunnel release than those with greater levels of health literacy? (2) How do patients with limited health literacy retrospectively perceive their role in shared decision-making for carpal tunnel release?

Patients and Methods

This study was approved by our institutional review board. Between July 2013 and March 2016, one surgeon (YHR) surgically treated 149 patients for carpal tunnel syndrome at an urban tertiary referral hospital. Patients were eligible if they had cognitive and language proficiency to provide informed consent and complete a self-reported questionnaire and were not eligible if they had nerve entrapment other than CTS, previous carpal tunnel surgery, or workers compensation issues; based on those, 140 (94%) were approached for study. Of those, seven (5%) were lost to followup before 6 months, leaving 133 for analysis here (Table 1). Their mean age was 55 years (range, 31–76 years), and 83% (111 of 133) were women. Thirty-three percent (44 of 133) of patients had less than a high school education. The average duration of symptoms before surgery was 32 months.

T1
Table 1:
Demographics

The CTS diagnosis was based on the clinical history and symptoms of CTS with confirmation by nerve conduction studies. The history and symptoms included paresthesia and/or pain in at least two of the median nerve-innervated fingers. Other symptoms include weakness and loss of dexterity of the hand. A physical examination for sensory loss, decreased thenar muscle strength, Tinel’s sign, and Phalen’s test was used to reinforce the diagnosis.

For shared decision-making, we discussed the disease status, electrodiagnostic study findings, and usual disease course with patients in a standard fashion and provided a brochure explaining CTS and surgery. We tried to help patients understand the clinical evidence available on CTS and help them identify their values and preferences. We generally recommended surgery when symptoms of tingling, pain, or weakness did not improve after at least 3 months of treatment with an orthosis and/or corticosteroid injections. We explained the surgical procedure of open carpal tunnel release, which would be performed under local anesthesia; the postoperative treatment with immobilization in an orthosis for 2 days without formal physiotherapy; and the likely functional outcomes, including the degree of symptom relief and possible complications such as pillar pain and transient weakness.

A research assistant (MKC, trained nurse) measured the health literacy orally and in person using the Newest Vital Sign (NVS) [20,29]. The NVS was published by Weiss et al. [29]. The assessment is comprised of a six-item questionnaire on health literacy and numeracy. Patients can receive a total score of 6, and in the present study, a score of ≤ 3 was considered limited health literacy like in the original NVS study [29]. Forty-four percent of patients had limited health literacy. The NVS was originally validated against the Test of Functional Health Literacy in Adults (TOFHLA) [25,26]. The NVS assesses risk for lower health literacy rather than health literacy and a score of ≤ 3 has a sensitivity of 100% and a specificity of 64% for predicting limited health literacy (TOFHLA score < 75) [29].

We used the Control Preferences Scale to assess the roles that patients want to play or have perceived during the process of treatment decision-making [11]. The Control Preferences Scale consists of five items that determine different roles in decision-making. Patients rank-order five possible approaches to decision-making, resulting in a score that scales from 1 (most active role) to 6 (most passive role). A score of ≤ 3 indicates a preference for shared decision-making [11]. The Control Preferences Scale has been tested in various populations and has been shown to be clinically relevant, reliable, and valid as an instrument to measure the decisional control preferences [10,21]. As we did in our previous study [13], patients who agreed to participate in the study were asked to indicate their preferred decision-making role regarding CTS treatment before consultation for surgery, and they were asked the roles that they perceived during decision-making about surgery 2 weeks postoperatively at the clinic visit.

The study participants were also asked to complete the Quick Disability of the Arm, Shoulder and Hand score (QuickDASH) [3] preoperatively and 6 months after surgery, respectively. The QuickDASH has been shown to be both reliable and valid in patients with upper extremity disorders, and it has similar reliability as that of the original DASH [15]. The QuickDASH correlates with patient satisfaction after carpal tunnel decompression and is a responsive tool that can be used to assess the outcome of surgery [7].

As we did in our previous study [13], the confounding variables examined included: comorbidities such as diabetes mellitus, thyroid disease, hypertension, and rheumatoid arthritis; a history of a surgical procedure; the existence of a caregiver; private insurance; education level; and whether they thought medical costs were burdensome (Table 1). These variables were chosen from previous studies investigating factors associated with patients’ preferred style of medical decision-making [6,9]. The existence of comorbidities, a caregiver, and private insurance was directly measured using a yes or no answer. Whether the patient thought medical costs were burdensome was rated by the patient on a 5-point Likert scale with responses of ‘‘strongly agree’’ and ‘‘agree’’ interpreted as indicating “yes” and ‘‘neutral,’’ ‘‘disagree,’’ and ‘‘strongly disagree’’ interpreted as indicating “no.”

Statistical Analysis

A power analysis indicated that the sample consisting of 133 patients would provide 94% statistical power with an α of 0.05 for a medium effect size (F2 of 0.15) for a regression with five main predictors.

Descriptive statistics were calculated to determine the patients’ demographic and clinical characteristics. The relationships between potential predictors (age, gender, comorbidities, history of surgical procedure, existence of a caregiver, education level, burdensome medical cost) and patients’ preferred and perceived role in shared decision-making were determined using an independent t-test or a one-way analysis of variance for categorical potential predictors and using a correlation coefficient for continuous predictor variables. Bivariate predictors with a p value < 0.1 in the bivariate analysis were selected as candidates for the multivariable linear regression model to prevent model overfitting. The categorical variables were dummy-coded with the subgroup for the largest sample size considered the reference group.

Results

There were no differences between patients with lower levels of health literacy and those with greater health literacy in terms of preferences of shared decision-making for carpal tunnel release (3.0 ± 1.6 versus 2.7 ± 1.4; mean difference, 0.3; 95% confidence interval [CI], -0.2 to 0.8; p = 0.25). After controlling for potential confounding variables such as age and existence of a caregiver, we found that only a history of surgical procedures (coefficient = -0.32, p < 0.01) and a lower DASH score (coefficient = 0.17, p = 0.02) were independently associated with a preference for a more active role in shared decision-making (Table 2).

T2
Table 2:
Multivariable analyses

Patients with limited health literacy perceived a more passive role in shared decision-making postoperatively (3.8 ± 1.7 versus 2.8 ± 1.5; mean difference, 1.0; 95% CI, 0.5-1.5; p < 0.001). After controlling for potential confounding variables such as age, education level, and fear of burden imposed by medical costs, we found that patients with limited health literacy (coefficient = -0.31, p = 0.01) and absence of a caregiver (coefficient = -0.28, p = 0.03) were more likely to perceive a more passive role in shared decision-making after carpal tunnel release (Table 2).

Discussion

Participation in the decision-making process and health literacy may both affect health outcomes. However, studies have disagreed over the degree to which differences in health literacy affect patients’ preferences and perceptions for shared decision-making. In this study, we tried to determine whether patients’ preferred role and their perceived experience for shared decision-making are related to their level of health literacy. We found that patients with limited health literacy had a similar preference for shared decision-making but perceived a more passive role in surgical decision-making for carpal tunnel release than patients with greater health literacy. In addition, patients who had lower DASH scores (indicating less severe symptoms) and a history of a surgical procedure preferred an active role in surgical decision-making. These results suggest that for those with limited health literacy there is a discrepancy between perception of interest and active participation in shared decision-making, and a physician should consider providing decision aids tailored to basic levels of health literacy to help them achieve their preferred role in decision-making.

There was a number of limitations to our study. First, this study was conducted on patients of a single ethnic population drawn from an urban area of South Korea, who were treated by one physician. Cultural and healthcare system differences, method of consultation, and the doctor-patient relationship may affect patient preferences or perceptions of decision-making. Second, patients were enrolled when they had above minimal literacy to provide informed consent and complete a self-reported questionnaire; thus, our population of patients may not represent the average population having CTS, which limits generalizability of the study findings. Third, one could argue that other tools can be used to assess health literacy that may be more health-related, although using the NVS is a proven method of basic health literacy. Although various valid and reliable health literacy assessment tools are available for predominantly research purposes, time constraints often limited their use in busy clinical settings. The NVS can be administered in < 3 minutes and it was considered useful in busy clinical settings. Fourth, we surveyed patients regarding their perception of decision-making 2 weeks after surgery, which may have contributed to recall bias. However, the early postoperative period with pain and the degree of symptomatic change may affect a patient’s perception of involvement in the decision. Fifth, our sample size was small and our cohort was mainly composed of women. Although gender was not associated with patients favoring any decisional style in the present study, analysis for gender effect on decision-making style might be underpowered.

No differences were observed between patients with lower levels of health literacy and those with greater health literacy in terms of preferences of shared decision-making for carpal tunnel release. Previous studies demonstrated that patients with limited health literacy may have less desire to participate in the decision-making process and may have different preferences for shared decision-making [1,12], but this study demonstrates that shared decision-making was preferred by both patients with limited health literacy and those with greater health literacy. One possible reason for the discordance is that factors associated with preferred level of participation in medical decisions could be disease- or population-specific [5]. With regard to CTS, a disease in which the diagnosis is generally made based on clinical symptoms and for which there are treatment options, a study showed that the majority of patients wanted to share their decision-making for surgery [13]. On the contrary, other studies have shown high preferences for a passive role in decision-making in patients with cancer [8,10]. Patients who have received a serious diagnosis and feel vulnerable may not want the responsibility of being involved in decision-making. In addition, all patients in this study had above minimal literacy to provide informed consent and completed a self-reported questionnaire; their level of health literacy may differ from that of a general community population. We found that patients with limited health literacy perceived a more passive role in shared decision-making for carpal tunnel release than those with greater health literacy, even when they had similar preferences for shared decision-making. The provider may not have done a good enough job of informing the patients in a way they can understand to allow the patient to participate. Alternatively, some patients may not prefer to be as actively involved in decision-making, particularly if psychosocial barriers coexist with limited health literacy, which can hinder patient-physician interaction; however, this explanation is speculative, and we did not specifically study other psychosocial barriers. Future studies might consider doing so. Providing patients with their desired level of involvement in decision-making is an important part of improving patient engagement and clinical results [24], and future studies are required to determine whether meeting patients’ preferences actually results in better outcomes in CTS. In this regard, decision aids that are appropriate for patients with limited health literacy might help them achieve their preferred role in decision-making [16,19,23]. A physician should consider informing and recommending treatment programs for CTS with concise explanations tailored to basic levels of health literacy. Some studies have demonstrated the benefits of more active patient participation in patient-reported outcomes [14,17], but in the present study, there was no difference in the postoperative DASH scores between patients with limited health literacy and those with greater health literacy. This mirrors the results of most previous studies [14,17] including patients with chronic disease in which patients’ compliance with medication and lifestyle modifications is important. Relative to such chronic medical conditions, we consider carpal tunnel release to be a relatively simple, straightforward procedure that does not require strict patient compliance with a postoperative rehabilitation program. Thus, outcomes should not depend much on patients’ behavior or on a more active participation style.

No differences were observed between patients with lower levels of health literacy and those with greater health literacy in terms of preferences of shared decision-making for carpal tunnel release, but patients with lower levels of health literacy perceived a more passive role in surgical decision-making for carpal tunnel release than patients with greater health literacy. Physicians should be aware of the discrepancy between preferences and perceptions of shared decision-making among patients with limited health literacy, and physicians should consider providing a decision aid tailored to basic levels of health literacy to help patients achieve their preferred role in decision-making. Future research should help determine the best way to inform patients with limited health literacy so they feel adequately involved in the decision-making process.

Acknowledgments

We thank M. K. Cha RN, for her role in data collection and S. M. Rowe MD, for advice and help in drafting the manuscript.

References

1. Aboumatar HJ, Carson KA, Beach MC, Roter DL, Cooper LA. The impact of health literacy on desire for participation in healthcare, medical visit communication, and patient reported outcomes among patients with hypertension. J Gen Intern Med. 2013;28:1469–1476.
2. Amalraj S, Starkweather C, Nguyen C, Naeim A. Health literacy, communication, and treatment decision-making in older cancer patients. Oncology (Williston Park). 2009;23:369–375.
3. Beaton DE, Wright JG, Katz JN, Upper Extremity Collaborative Group. Development of the QuickDASH: comparison of three item-reduction approaches. J Bone Joint Surg Am. 2005;87:1038–1046.
4. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155:97–107.
5. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns. 2012;86:9–18.
6. Clark JP, Hudak PL, Hawker GA, Coyte PC, Mahomed NN, Kreder HJ, Wright JG. The moving target: a qualitative study of elderly patients' decision-making regarding total joint replacement surgery. J Bone Joint Surg Am. 2004;86:1366–1374.
7. Clement ND, Duckworth AD, Jenkins PJ, McEachan JE. Interpretation of the QuickDASH score after open carpal tunnel decompression: threshold values associated with patient satisfaction. J Hand Surg Eur Vol. 2016;41:624–631.
8. Davison BJ, Kirk P, Degner LF, Hassard TH. Information and patient participation in screening for prostate cancer. Patient Educ Couns. 1999;37:255–263.
9. Deber RB, Kraetschmer N, Urowitz S, Sharpe N. Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations. Health Expect. 2007;10:248–258.
10. Degner LF, Kristjanson LJ, Bowman D, Sloan JA, Carriere KC, O'Neil J, Bilodeau B, Watson P, Mueller B. Information needs and decisional preferences in women with breast cancer. JAMA. 1997;277:1485–1492.
11. Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nurs Res. 1997;29:21–43.
12. Goggins KM, Wallston KA, Nwosu S, Schildcrout JS, Castel L, Kripalani S, Vanderbilt Inpatient Cohort Study (VICS). Health literacy, numeracy, and other characteristics associated with hospitalized patients' preferences for involvement in decision making. J Health Commun. 2014;19(Suppl 2):29–43.
13. Gong HS, Huh JK, Lee JH, Kim MB, Chung MS, Baek GH. Patients' preferred and retrospectively perceived levels of involvement during decision-making regarding carpal tunnel release. J Bone Joint Surg Am. 2011;93:1527–1533.
14. Greenfield S, Kaplan SH, Ware JE Jr, Yano EM, Frank HJ. Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3:448–457.
15. Gummesson C, Ward MM, Atroshi I. The shortened Disabilities of the Arm, Shoulder and Hand questionnaire (QuickDASH): validity and reliability based on responses within the full-length DASH. BMC Musculoskelet Disord. 2006;7:44.
16. Hageman MG, Reddy R, Makarawung DJ, Briet JP, van Dijk CN, Ring D. Do upper extremity trauma patients have different preferences for shared decision-making than patients with nontraumatic conditions? Clin Orthop Relat Res. 2015;473:3542–3548.
17. Joosten EA, DeFuentes-Merillas L, de Weert GH, Sensky T, van der Staak CP, de Jong CA. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom. 2008;77:219–226.
18. Kadakia RJ, Tsahakis JM, Issar NM, Archer KR, Jahangir AA, Sethi MK, Obremskey WT, Mir HR. Health literacy in an orthopedic trauma patient population: a cross-sectional survey of patient comprehension. J Orthop Trauma. 2013;27:467–471.
19. Kennedy AD, Sculpher MJ, Coulter A, Dwyer N, Rees M, Abrams KR, Horsley S, Cowley D, Kidson C, Kirwin C, Naish C, Stirrat G. Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial. JAMA. 2002;288:2701–2708.
20. Kim J. Measuring the level of health literacy and influence factors: targeting the visitors of a university hospital's outpatient clinic. J Korean Clin Nurs Res. 2011;17:27–34.
21. Kremer H, Ironson G, Schneiderman N, Hautzinger M. ‘It's my body’: does patient involvement in decision making reduce decisional conflict? Med Decis Making. 2007;27:522–532.
22. McCaffery KJ, Smith SK, Wolf M. The challenge of shared decision making among patients with lower literacy: a framework for research and development. Med Decis Making. 2010;30:35–44.
23. Murray E, Davis H, Tai SS, Coulter A, Gray A, Haines A. Randomised controlled trial of an interactive multimedia decision aid on benign prostatic hypertrophy in primary care. BMJ. 2001;323:493–496.
24. Nam KP, Gong HS, Bae KJ, Rhee SH, Lee HJ, Baek GH. The effect of patient involvement in surgical decision making for carpal tunnel release on patient-reported outcome. J Hand Surg Am. 2014;39:493–498.
25. Parker RM, Baker DW, Williams MV, Nurss JR. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Intern Med. 1995;10:537–541.
26. Rothman RL, Housam R, Weiss H, Davis D, Gregory R, Gebretsadik T, Shintani A, Elasy TA. Patient understanding of food labels: the role of literacy and numeracy. Am J Prev Med. 2006;31:391–398.
27. Scholten RJ, Mink van der Molen A, Uitdehaag BM, Bouter LM, de Vet HC. Surgical treatment options for carpal tunnel syndrome. Cochrane Database Syst Rev. 2007;4:CD003905.
28. Stewart M. Towards a global definition of patient centred care. BMJ. 2001;322:444–445.
29. Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, Mockbee J, Hale FA. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med. 2005;3:514–522.
30. White S, Chen J, Atchison R. Relationship of preventive health practices and health literacy: a national study. Am J Health Behav. 2008;32:227–242.
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