Quality of Life in Organ Transplant Recipients Participating in an Online Transplant Community

Patients reporting a single-organ transplant, limited to heart, lung, liver, kidney or pancreas, and who created accounts between 1 March 2010 and 31 December 2010 were eligible for study inclusion. The beginning date in this observation period is the date the site was opened for patients with organ transplants and the end date was chosen to allow comparison with other complete-year statistics. Patients can report multiple-organ transplants but the large number of possible permutations lead to groups too small to analyze here. Users are under no requirement to enter any data and they may choose to report as much data as they like according to any schedule, but can be prompted with optional reminders. Each potential data point may be reported both prospectively and retrospectively (e.g., symptoms, treatment starts and stops, treatment evaluations, lab test results, quality of life). To create a common baseline reference for comparisons among groups of patients defined by organ type, we examined the ‘most recent’ report offered by a patient within 30 days of the date they created their PatientsLikeMe account. Thus, here we describe the status of organ transplant patients at approximately the time they created a PatientsLikeMe account during the period 1 March 2010 through 31 December 2010.

Select demographic characteristics of US-based PatientsLikeMe members reporting a transplant in 2010 were compared with data collected through UNOS, publicly available through the Organ Procurement and Transplantation Network (OPTN). To contextualize transplant patients’ quality of life we also compared the baseline quality of life reported by transplant patients during March–December 2010 with new members of PatientsLikeMe communities that existed during the same time period [epilepsy, fibromyalgia and myalgic encephalomyelitis (ME), HIV, mood disorders, multiple sclerosis, Parkinson’s disease, and ALS] [6]. To address the question of attrition in online studies we report usage statistics.

Basic demographics (birth date, age, gender, race/ethnicity, highest educational attainment, and insurance status) and transplant history information (organ type, date of transplant, transplant center, co-morbid conditions, and donor characteristics) were solicited from each PatientsLikeMe user. Users also may choose to share more detailed information about the following:

Pre-defined symptom surveys consisting of five primary symptoms (insomnia, depressed mood, pain, fatigue, and anxious mood) were available to all users, supplemented by organ-specific symptoms that were included on the basis of a literature review and clinician input. In addition to the pre-defined symptom lists, patients have the ability to add and monitor symptoms of importance to them—these added symptoms are coded against the Medical Dictionary for Regulatory Activities (MedDRA^®) and (if necessary) corrected for spelling errors or merged to duplicate terms by a health data integrity team at PatientsLikeMe. Patients can also input treatment information including start date, purpose, dosage, and end date, and have the option to add treatment evaluations by answering brief questions about perceived treatment efficacy, adherence, burden, and cost, with an open text field for comments and advice to other patients.

Quality of life is measured using the PLMQOL version 2, a 24-item generic quality-of-life questionnaire developed for use on the site in order to avoid the costs and usage restrictions of a licensed instrument. The PLMQOL shares a similar conceptual framework to the widely used the RAND Corporation SF-36 [11] and contains 24 items mapped to three domains: physical (11 items), mental (8 items), and social (5 items). Psychometric validation demonstrated acceptable Cronbach’s alpha for each subscale (α > 0.8) and strong correlation between the relevant subdomains of the PLMQOL and the RAND SF-36 [physical function (r = 0.847, p < 0.001), emotional well-being/mental (r = 0.842, p < 0.001), social function (r = 0.808, p < 0.001)] [12]. For this report, we calculated domain summary scores such that physical scores range from 0 to 44, mental scores from 0 to 32, and social scores from 0 to 20. Higher scores indicate better quality of life.

For eligible patients, data in the above fields were examined and analyzed using SPSS^® Statistics (IBM^®, Armonk, NY, USA). Group differences were examined using Pearson’s Chi-square test when comparing distributions and F-ratios when comparing mean differences.

Patients are able to interact with other PatientsLikeMe users by posting to threaded message forums, by leaving comments or questions on other user’s profiles, or through the system’s private messaging system. Qualitative data are also collected through an open text field in treatment evaluations. We systematically reviewed free-text collected from the PatientsLikeMe Organ Transplants Forum and spontaneously reported treatment evaluations to identify additional issues important to patients using PatientsLikeMe. For the purposes of this research, forum posts and treatment evaluations completed between 1 March 2010 and 31 December 2010 were harvested and analyzed using IBM^® SPSS^® Text Analytics for Surveys version 4.0.

IBM^® SPSS^® Text Analytics uses linguistic-based text analysis algorithms to identify concepts (words or word groups) and types (semantic groupings of concepts) which are used by the analyst to build categories of responses for analysis and interpretation. Initial extraction of concepts and types produces a list and a frequency report of how many of the posts contain each concept or type. We reviewed the initial extract list for concepts that mapped into categories of patient experience that we found represented in the organ transplant PRO literature. These concepts worked as tags within the text analysis program to allow sorting and processing of the forum posts for further review.

A total of 3,057 patient accounts were created in the PatientsLikeMe Organ Transplants community between 1 March 2010 and 31 December 2010. Excluding patients who did not report information about a specific transplant and those reporting on multiple transplants, data from 1,924 single-organ transplant patients were included in the analysis (Fig. 1). Patient-reported date of transplant ranged from 10 December 1969 to 12 December 2010, with the median number of days transplanted prior to joining PatientsLikeMe ranging from 668 for pancreas recipients to 1,467 for kidney recipients.

Due to the tight controls and allocation mechanisms around organ donation, UNOS provides near-perfect data on 28,662 organ transplants performed in the USA in 2010. Table 1 provides a comparison of demographics between the PatientsLikeMe organ transplant 2010 incident cohort (patients reporting a transplant date between 1 January and 31 December 2010, n = 187) and the larger population of transplants performed in the USA in 2010 from UNOS (n = 28,662).

We found significant differences between UNOS and PatientsLikeMe users for age (χ ² = 81.839, p < 0.001), gender (χ ² = 38.191, p < 0.001), and ethnicity (χ ² = 49.637, p < 0.001). PatientsLikeMe users were less likely to be children (1 % PatientsLikeMe vs. 6 % UNOS) or seniors (2 % PatientsLikeMe vs. 15 % UNOS), with most members being in early to middle adulthood. A higher proportion of PatientsLikeMe users were female (59 %) than in UNOS data (38 %), reflecting a female bias that has been detected in other conditions such as epilepsy or multiple sclerosis [13, 14]. PatientsLikeMe users were more likely to be white (PatientsLikeMe 73 % vs. UNOS 60 %) with lower proportions of black (PatientsLikeMe 6 % vs. UNOS 21 %) and Hispanic (PatientsLikeMe 7 % vs. UNOS 13 %) members but a higher proportion of users reporting “other” or “mixed race” (PatientsLikeMe 14 % vs. UNOS 6 %).

In addition to those receiving a transplant in 2010, Table 2 provides additional detailed demographics of the total PatientsLikeMe single-organ transplant population, who might have received a transplant at any time in the past, by organ type. The average age of patients was significantly different across organs (F ₄,₁₆₉₀ = 5.23, p < 0.001) with kidney transplant patients the youngest [42.7 years, standard deviation (SD) 12.1] and lung transplant patients the oldest (46.6 years, SD 13.5). There were also between-group differences for gender (χ ² ₈ = 47.16, p < 0.001), with a higher proportion of female lung recipients (60 %) relative to kidney (55 %), pancreas (53 %), liver (49 %), or heart (38 %). Comparisons with UNOS data were made difficult by a relatively high rate of missing data for gender in the PatientsLikeMe sample, around 10 % of participants. By contrast, UNOS has only ever had a handful of transplants without gender being recorded. Comparison of adjusted gender ratios from PatientsLikeMe (disregarding the missing data) with 2010 data from UNOS continues to suggest a much higher proportion of females using the site. For example, 39 % of UNOS kidney recipients were female compared with 63 % (adjusted) of the PatientsLikeMe sample. There were more women than men in every organ group except heart transplants. Most patients resided in the USA, were non-Hispanic, and white. Given that PatientsLikeMe is currently only in English and patient recruitment efforts are currently focused in the USA, this is not that surprising. The majority of patients reported at least some college education, and their health insurance is most likely to be private, employer-based, or Medicare.

Online communities and interventions are known to suffer from different forms of attrition, i.e., non-usage over time [15]. Within the sample reported here, patients logged in a mean of ten times in their first 365 days on the site (SD 22, median 5) and there were no significant differences in login frequency between organ types (F _4,1919 = 0.701, p = 0.591). The distribution was highly skewed [7.325, standard error (SE) 0.056] with a high degree of kurtosis (68.847, SE 0.112); 80 % of users logged in ten times or less in their first year on the site.

Within 30 days of account creation, 1,924 single-organ transplant patients completed 915 symptom reports (see Table 3). In addition to the prompted primary and supplemental symptoms, patients added an additional 121 symptoms of their own choosing. Symptoms added by five or more patients include anemia, high blood pressure, headache, dizziness, asthenia, tachycardia, leg cramps, cold sensations, hyperglycemia, corticosteroid-induced diabetes mellitus, migraine, non-Hodgkin lymphoma, candidiasis, night cramps in legs and feet, and hand tremors.

Symptom reports at the account creation baseline were provided by approximately 50 % of patients. Examining the five primary symptoms common to all organ types, significant differences were observed for depressed mood, anxious mood, and fatigue, with pancreas and liver patients most likely to report their symptoms as moderate or severe. For example, there were significant differences in depressed mood by organ type (χ ² ₄ = 13.89, p = 0.008), with pancreas patients reporting a much higher rate (63 %) than other organ types (15–21 %), although the relatively low sample in this group (n = 8) warrants caution. Moderate or severe insomnia was reported by at least one in three patients in each organ group, while moderate or severe pain was reported by at least one in six patients in each organ group; no significant differences between organ groups were observed.

Users also created a total of 938 unique instances of treatments taken within 30 days of account creation (Table 4). When patients report a treatment they are asked to indicate the start date (if known), purpose (e.g., “Prevent organ rejection”), dosage (where appropriate and pre-populated from a list of likely dosages from the Multum™ database), and stop date (where applicable). In addition, patients may choose to write an ‘evaluation’ of a treatment, resembling a consumer product review of their perceived efficacy, side effects, burden, advice for other patients, and reasons for discontinuation (if applicable). The average transplant patient reported taking two treatments for the purpose of preventing organ rejection; in addition, 25 patients voluntarily reported side effects associated with their treatments. Forty percent or more of patients did not enter treatment information within 30 days of account creation.

Finally, 1,215 quality-of-life (PLMQOL) assessments were completed. Data from 680 PLMQOL assessments completed post 11 May 2010 demonstrate strong reliability in each domain across organ types (Cronbach’s alpha 0.84–0.91; Table 5). Comparison shows poorer physical scores for lung transplants than other organ groups. Comparison with new entrants in other PatientsLikeMe communities during the same time finds average quality-of-life scores most similar to those of HIV patients, and both groups generally faring better than patients with epilepsy, fibromyalgia and ME, mood disorders, Parkinson’s disease, multiple sclerosis, or ALS (see Fig. 2; Table 6). The relatively better scores of organ transplant and HIV patients using PatientsLikeMe in comparison with the other disease groups may suggest such patients are benefitting from relatively effective long-term treatment regimens.

Between March and December 2010, there were 2,169 posts to 346 unique topic threads in the transplants forum. This content was contributed by 605 unique users (patients, caregivers, guests, and site administrators), 304 of whom made only one post. These one-off posts fell into the following categories: Introductory posts (e.g., “Hi I’m new here…”), questions (e.g., “Has anyone else had a gastric bypass?”), reply posts expressing similar experiences (e.g., “Susan, I’ve had that too…”), or posts offering information (e.g., “Try setting an alarm on your phone to remember meds”). These one-off posts were not qualitatively different from those made from members posting multiple times.

In total, 208 different users initiated the 346 forum threads, although a core of 47 users creating two or more threads accounted for 186 (54 %) of the threads. A total of 636 posts were not automatically classified; upon further review, 32 were forced into existing categories. A total of 1,565 posts were subject to further review. A single tag was applied to 692 of the posts, two tags were applied to 407 of the posts, and three or more tags were applied to the remaining 466 posts (Table 7). The most common tags included “organs,” “symptoms,” and “side effects”, followed by “exercise and activity,” “satisfaction,” and “fear.” Open-text analysis of 304 treatment evaluation entries reveals common tags of “symptoms,” “side effects,” and “compliance,” closely mirroring results of the forum analysis (Table 8).