Clinical and demographic characteristics of online community members—does it represent reality?

          The decision to undergo corrective surgery for scoliosis is one that is shared between the physician, the patient, and the family. Although physicians can rely on results of scientific studies that have been published in peer-reviewed journals, patients neither have the medical background to understand these studies nor do they have access to the majority of these publications. In an effort to obtain objective data regarding scoliosis surgery, patients often use the Internet as a convenient source of information. In fact, scoliosis patients represent the group of patients who use the Internet the most [1]. Although studies have shown that most online resources for scoliosis are insufficient, more than 50% of scoliosis patients continue to rely on Internet resources for education, and more than 85% of patients would recommend these resources to other patients [1–3]. FDA device/drug status: Not applicable. Author disclosures: PDT: Nothing to disclose. PAR: Nothing to disclose. KV: Nothing to disclose. This study was approved by the institutional review board of New York University (location of data analysis): All subjects gave informed consent before inclusion.

          All authors declare that they have no conflict of interest. * Corresponding author. Orthopaedic Hospital Berlin at Vivantes Klinikum im Friedrichshain, Landsberger Allee 49, 10249 Berlin, Germany. Tel.: þ49 (0)30 130 23 1306; fax: -2134. E-mail address: pertrobisch@gmail.com (P.D. Trobisch) 1529-9430/$ - see front matter
2011 Elsevier Inc. All rights reserved. doi:10.1016/j.spinee.2011.06.011 The Spine Journal 11 (2011) 826–831 To this end, many scoliosis-specific Internet communities have been created, where patients exchange experiences and even upload a detailed documentation of their medical and surgical history. This exchange of patient information has the potential to profoundly influence patient decision making regarding treatment for scoliosis, especially if recommendations online are incongruent with peer-reviewed medical literature. Physicians have limited knowledge of resources used by patients to obtain information regarding scoliosis surgery. We hypothesize that members who exchange their experiences on the Internet represent the extremes of clinical outcomes— either excellent or with unusual complications—which may skew patient expectations and influence decision making regarding different treatment options. The pattern of responses may mimic that observed with other online patient satisfaction forums as seen with restaurant or hotel reviews.

         The purpose of this study, therefore, is to characterize the demographic and clinical characteristics of members of a scoliosis-specific online community. A comprehensive assessment of a single scoliosis patient community may be useful for physicians to understand patient concerns and mitigate treatment expectations when counseling patients. Methods With agreement and support of the Webmaster, all members of a major scoliosis-specific Internet community (www.skoliose-op.info) in Germany were asked to provide their demographic and clinical information via an online questionnaire. Skoliose-op.info is a noncommercial, free access community that was founded and still is operated by a scoliosis patient. It was founded in 2005 as consequence of the lack of scoliosis-specific information and experiences on the Internet. It is a free access community. However, to become a registered member, one has to apply and is only eligible with a diagnosed scoliosis or hyperkyphosis.

          The electronic questionnaire consists of several questions commenting on demographic and clinical details, including the Scoliosis Research Society-22 (SRS-22) questionnaire, a validated tool to measure quality of life in scoliosis patients. Of the 360 registered members who have logged into the platform during the 3 months of data collection, 203 members submitted their data. Of these 203 members, only 195 members with scoliosis (54%) were included in the analysis. Individual domain scores and overall SRS-22 score were analyzed from both surgical and nonoperative cases. Of the two main divisions ‘‘surgery (S)’’ and ‘‘no surgery (NS)’’, ‘‘S’’ was subdivided in ‘‘S!19’’ for patients who had surgery before the age of 19 years, ‘‘S19 to S30’’ for young adults who had surgery, and ‘‘SO30’’ for patients who were older than 30 years at surgery. Additional subdivisions were created in regard to time since surgery for 0 to 1þ11 years (!2), 2 to 9þ11 years (2 to 10), and more than 10 years (O10). Statistical analysis was performed with analysis of variance and Student independent t test on SPSS Statistics v17.0 (SPSS Inc., Chicago, IL, USA). Statistical significance was achieved at p!.05. Results One hundred ninety-five members met the inclusion criteria (144 [74%] female, 20 [10%] male, and 31 [16%] unknown).

          The age distribution of all patients showed a bimodal distribution with 79 patients (40%) between the ages 16 to 30 years and 47 patients (24%) between the ages 41 to 50 years (Fig. 1). One hundred fifty-three of 195 (78%) members had surgery for their scoliosis, and 42 (22%) subjects did not undergo surgery. More than half of the members whom had surgery (n574; 52%) had surgery at age 10 to 18 years falling into the adolescent idiopathic scoliosis age group (Fig. 2). Three patients were under the age of 10 years and classified as juvenile scoliosis. Of all members who had surgery, 10 (6%) provided Context Increasingly, patients are turning to the Internet to obtain information about spinal disorders and to gain insight from the experience of others who have undergone treatment. This article aims to assess whether one such Internet site for scoliosis has online community participants who are representative of the larger scoliosis population. Contribution The authors found that 74% of online community participants were female and that 78% had undergone surgery. They also noted a 17% rate of revision surgery in these patients.

          Implication While the authors conclude this online community may be representative of the overall scoliosis population, it appears the online community studied represents a specific subgroup of the general scoliosis population. From these data, the online patients represent those with curves of greater severity and have undergone surgery. In addition, it seems they have higher-than-expected revision rates. Importantly, most patients with scoliosis do not fall into these categories and, accordingly, may not gain appropriate knowledge from online discussions. Physicians need to be aware that such sites may provide their patients with nonrepresentative information and need to fully inform and educate their patients about their specific disease state. —The Editors P.D. Trobisch et al. / The Spine Journal 11 (2011) 826–831 827 incomplete data. Of the remaining 143 members, there were 77 (54%) in the S!19 group, 33 (23%) in the S19 to S30 group, and 33 (23%) in the SO30 group (Table). The average time since initial surgery (follow-up) was 10 years and 9 months. Most members had 2 to 5 years since initial surgery (Fig. 3). Revision surgery was required in 26 of 153 (17%) of patients. Limited details about the revision procedure were provided by 19 of 26 members. Six patients had revision with or without reinstrumentation for hardware failure, three underwent revision surgery for a flatback deformity, and last three patients—all with Harrington rod instrumentation—underwent revision surgery without further description.

          Three members had an additional rib hump resection, three persons had hardware removal without further description and last, one patient had hardware removal for infection. When considering only patients with a minimum of 10 years since initial surgery, the revision rate was 17 in 53 (32%) and 9 in 17 (53%) for members who had a minimum of 30 years since surgery. The mean total SRS-22 scores were between 3.2 and 4.0. A detailed distribution of all subdivisions is given in the Table. Analysis of variance results uncovered a significant difference between the subgroups for mean SRS-22 scores (p5.01). An independent samplest test was conducted to compare nonsurgical patients’ SRS-22 total scores with each subgroup of surgical patients individually. Significant differences were found between nonsurgical patients ‘‘NS’’ (mean [M]53.33, standard deviation [SD]5067) who had an average age of 33.4 years with an SD of 14.8 and surgical adolescents with a short-term follow-up ‘‘S!19/!2’’ (M53.88, SD50.59; Fig. 1. Patient age showed a bimodal distribution (n5195). Fig. 2. Age at surgery showed a normal distribution with mean of 22.8 years (n5143). 828 P.D. Trobisch et al. / The Spine Journal 11 (2011) 826–831 p5.011) and with midterm follow-up ‘‘S!19/2 to 10’’ (M53.75, SD50.65; p5.02). Differences of ‘‘NS’’ and young adults who had surgery were significant for short-term follow-up ‘‘S19 to S30/!2’’ (M53.81, SD50.62; p5.02) and for midterm follow-up ‘‘S19 to S30, 2 to 10’’ (M54.04, SD50.66; p5.001). Finally, a significant difference was found between ‘‘NS’’ and the midterm follow-up outcome of adult patients ‘‘SO30, 2 to 10’’ (M53.81, SD50.67; p5.01). For surgical patients, the average major coronal curve magnitude as reported by patients was 69.5 (SD 21.1; n5141) preoperatively and 35.8 (SD 24.8; n5130) postoperatively, yielding an average curve correction of 52%.

          The self-reported Cobb angle of the major curve for nonsurgical patients was 55 (SD 20.3; n538). Discussion The use of online resources for information gathering may have an important influence on a patient’s decision regarding nonoperative versus operative treatment [2,3]. Studies have shown that online resources for scoliosis and message boards have inaccurate or skewed data that in 20% of cases directly contradicts the surgeon’s recommendations for treatment [1,3,4]. Despite this fact, many patients continue to use these online resources as their primary source of information. It could be argued that nonoperative and operative patient experiences shared online are of value to patients considering treatment and could even promote realistic expectations with regard to various treatment options. For this argument to be valid, however, Internet platforms must comprise a representative sample of all scoliosis patients undergoing treatment to prevent skewed or misleading patient information.

           To our knowledge, this is the first study to analyze the clinical and demographic spectrum from an Internet platform specific for a single orthopedic disease. From an analysis of nearly 200 members, we provide a comprehensive analysis of the demographic and clinical distribution of scoliosis patients subscribing to a major scoliosis-specific Internet community. Most members were between 16 and 30 years of age, have been Table SRS-22 values for all subdivisions (n5185) S!19 S19–S30 SO30 Parameters NS !2 2–10 O10 !2 2–10 O10 !2 2–10 O10 Members, n (%) 42 (23) 13 (7) 21 (11) 43 (23) 15 (8) 13 (7) 5 (3) 8 (4) 20 (11) 5 (3) Function 3.860.9 3.960.9 4.260.7 3.761.0 3.760.6 4.460.6 3.660.8 3.560.9 4.060.8 3.461.0 Pain 3.560.9 3.860.9 3.860.8 3.461.0 4.061.7 4.061.1 3.061.0 3.160.7 3.861.0 3.661.1 Mental health 3.360.8 4.060.8 3.560.8 3.461.0 3.461.0 4.060.8 3.360.8 3.560.9 3.660.9 3.060.7 Self-image 2.960.8 3.860.7 3.560.7 3.261.1 3.860.8 3.860.8 3.360.8 3.760.6 3.760.6 3.061.0 Satisfaction 2.861.1 4.360.6 3.861.2 3.561.2 4.660.4 4.161.2 2.961.4 4.360.5 4.460.7 3.461.4 Total 3.360.7 3.960.6 3.860.7 3.460.9 3.860.6 4.060.7 3.360.6 3.560.6 3.860.7 3.260.8 SRS-22, Scoliosis Research Society-22; S, surgery; S!19, score for patients who had surgery before the age of 19 years; NS, no surgery; S19–S30, score for young adults who had surgery; SO30, score for patients who were older than 30 years at surgery. Ten members (5%) who had surgery submitted incomplete data and were excluded from SRS-22 analysis. Fig. 3.

          Number of subjects in relation to years since initial surgery (n5143). P.D. Trobisch et al. / The Spine Journal 11 (2011) 826–831 829 surgically treated for adolescent idiopathic scoliosis, and have reported their outcomes up to 5 years postoperatively. After age 21, there is a gradual decrease in the number of patients undergoing surgery (Fig. 2), with only 2% of patients having surgery after the age of 50 years. This trend strongly suggests the vast majority of patients have idiopathic rather than degenerative scoliosis. Even patients who did not undergo surgery report an average Cobb angle of 55, which commonly requires surgical correction. The members of this forum, therefore, represent a subset of patients with moderate to severe curve magnitudes, who have either firmly chosen nonoperative treatment, already undergone surgery, or remain undecided regarding surgery. In this online population, patients with smaller curve magnitudes who are primarily non-surgical are underrepresented.

          Patients with smaller curves not contemplating surgery are likely less affected by the disease and therefore less inclined to share their personal experience. The age distribution was bimodal with a second group of patients belonging to the adult scoliosis subgroup. Some of these patients may have undergone corrective surgery in adolescence and are facing revision surgery related to well-established problems of first generation instrumentation. Hence, there is an inherent selection bias with the online forum that must be acknowledged. We report a revision rate of 17% for patients using this Internet platform, which is reasonable considering the number of patients with greater than 30 years follow-up. Although some previous studies have reported a significantly lower revision rate between 4% and 13% [5,6], other authors have reported a 10-year revision rate of 23% or more, especially for those cases where first or second generation instrumentation was used [7,8]. Most revisions in the present study were for flatback deformity or hardware failure, which often is a sign for pseudarthrosis. Both are well-known complications of the Harrington and Zielke instrumentation that were very popular in Germany and have been the index procedure for most of the revised members. Statistical analyses revealed that online members who underwent operative versus nonoperative treatment had improved overall SRS-22 scores.

          The difference was significant for most surgical subdivisions (nonsurgical patients compared with adolescents with short-term and midterm follow-up, young adults with short-term and midterm follow-up, and adults with midterm follow-up). Furthermore, members more than 10 years since their initial surgery had lower SRS-22 scores than members within 10 years of surgery. This finding is in accordance with previous literature [9–11]. Several studies that have compared operative versus nonoperative treatment in children and adults have similarly reported improved outcomes among surgical patients in one or more domains of the SRS-22 [9,10]. Moreover, it has been shown that patients of advanced age had lower scores than middle-aged patients [10]. Similarly, in our study, we find that adolescents (S!19) outperformed adult members (SO30) in terms of overall SRS-22 score. Parent et al. [11] similarly reported higher scores for younger versus older patients and improved scores for patients within 10 years of surgery versus more than 10 years since surgery. Most patients had a mean total SRS-22 score between 3 and 4. Finally, in a comparison of multiple quality-of-life questionnaires completed by children and adults, Adobor et al. [12] reported a mean SD of 0.6 to 1.0 for the individual SRS-22 subdomains.

          The present study has a similar distribution of SRS-22 subdomain scores with only a few subdivisions falling outside of this range. To our knowledge, no study has reported SRS-22 outcome data that markedly deviates from that reported in this analysis. The aim of the present study was to reflect the clinical characteristics of members of a single scoliosis-specific Internet platform. For this reason, surgical patients were grouped by age and number of years of follow-up without respect to curve type, surgical technique, or individual surgeon. Although grouping patients in this manner had the potential to introduce bias, it allowed for a larger sample size among the comparison groups. We also felt that patient age and number of years since surgery were parameters of greater clinical importance and novelty than the effect of various surgical techniques, which has been previously well described [13,14]. Because of the small group size of nonsurgical patients, however, these patients were not subdivided. We decided not to exclude the nonsurgical patient population to provide information on each arm of this online community. To date, only a small handful of studies have reported clinical outcomes from scoliosis patients with greater than 10 years follow-up. However, direct comparisons between online data and published studies were unrealistic as the online community was very heterogenous.

          In summary, we find that the clinical and demographic profile of members of a single scoliosis-specific Internet community to show some inherent selection bias, however, do not show marked variation in comparison to previously reported peer-reviewed studies [7–12]. This study supports that members from an online scoliosis community may be the representative sample of the scoliosis patient population with moderate to severe curves. Specifically, scoliosis patients either choosing nonsurgical treatment, having already undergone surgery, or contemplating surgery are most likely to participate online and seem to represent most patients. Despite this selection bias, patients who are facing surgery as treatment option may still find online forums for scoliosis useful for obtaining information regarding surgical treatment. We find that online data resemble data from published peer-reviewed literature but emphasize that online data have not been validated, may overestimate the risks from surgery, and therefore should not be used for comparing different treatment options. Although this study does offer a unique insight to value of online forums and includes long-term follow-up, it 830 P.D. Trobisch et al. / The Spine Journal 11 (2011) 826–831 remains limited to only a single scoliosis-specific Internet platform.

          We expect variation in the data from various online forums in other countries. Surgeons may find this information valuable for counseling patients in the office. Future studies may choose to evaluate the clinical distribution of other online orthopedic communities and may even consider validating the information posted on such online forums.

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