Abstract
Purpose: Young adult survivors (YAS) of cancer experience late effects of treatment similar to older adult survivors (AS). Online health tools such as Internet-based survivorship care plans (SCPs) can provide access to information about late effects and symptom management, but little is known about SCP patterns of use among YAS.
Methods: An Internet-based cross-sectional survey was completed over 24 months. Participants were individuals diagnosed with cancer between 18 and 39 years (YAS, n = 611) or 40–60 years (AS, n = 1742), who were 2–20 years postdiagnosis, and who created an Internet-based SCP. Demographics, treatment-related variables, satisfaction with SCP, communication of SCP, and patient-reported late effects (fatigue, neurocognitive, sexual, cardiovascular, pulmonary, or second cancers) were collected.
Results: YAS were primarily female (71%), Caucasian (78%), college educated (65%), and generated the SCP without assistance (76%). YAS reported satisfaction with content (93%) and shared content with providers (71%). A higher proportion of YAS than AS were male (29% vs. 17%, p < 0.001), lived internationally (23% vs. 17%, p = 0.003), and endorsed oncologist-led survivorship care (47% vs. 41%, p = 0.001). YAS reported concerns about neurocognitive performance (56%) and fatigue (50%). Overall, YAS reported equivalent or fewer late effects than AS across all domains.
Conclusions: YAS report high satisfaction with the online SCP, as well as a high symptom burden, although the latter were reported less than for AS.
Keywords: : survivorship, internet, survivorship care plan, patient-reported outcomes
Introduction
Cancer diagnoses in young adults (between the ages of 18 and 39 years) have steadily increased over the past 25 years, such that there are now ∼70,000 new diagnoses in the United States annually.1,2 Although improvements in survival rates among this group have not kept pace with those of pediatric and older adult cancer populations,3,4 the majority of young adults diagnosed with cancer will become long-term survivors.5 Young adult survivors (YAS) are at risk for medical and psychosocial late effects of treatment6,7 and report concerns similar to both younger pediatric and older adult survivors (AS).8–12 As these late effects may manifest years after cancer therapy, patients require knowledge of and/or screening for late effects as they age.13,14 Unfortunately, many YAS have limited knowledge of these potential health problems related to their cancer treatment and options for management of ongoing symptoms, and over half do not report receiving risk-based cancer-related follow-up care.15,16 Despite this, little research has been performed examining the unique needs or engagement of YAS, with most focusing on AS of pediatric cancers.17–22
Survivorship care plans (SCPs), which include information on the possible risk of and surveillance for late effects of treatment, have been described as a potential means of disseminating information to survivors.23–27 YAS may not be aware of their treatment-specific risks despite what is perceived as adequate counseling by a medical team because of the multiple personal, social, and medical transitions that they face.15,28–31 Medically, YAS transition from on-therapy to off-therapy care and oftentimes from oncology to primary care. Simultaneously, young adults are achieving developmental milestones, which may include solidifying plans for education, employment, and family that may necessitate extra flexibility in survivorship care.32–35 While SCP implementation has been slow,36 there is a call for better coordination of care for cancer survivors, and Internet-based SCPs may hold particular promise for this group. Thus, the Commission on Cancer (COC) standards and Institute of Medicine (IOM) recommendations include provision of a SCP at the completion of active cancer treatment for all cancer survivors.37,38
There has been some investigation into how subgroups of adult cancer survivors use Internet-based SCPs24,25 with evidence of feasibility, improvements in perceived knowledge, and increased satisfaction with care.39 However, YAS use of Internet-based SCPs, and their satisfaction with such tools, are poorly understood, as are patient-reported late effects in this population. The aims of this study are to compare the characteristics and experience of YAS versus AS using Internet-based SCPs and to compare patient-reported outcomes, encompassing various late effects of cancer therapy, reported by YAS to other AS through an Internet-based SCP mechanism.
Methods
This is a descriptive cross-sectional study examining the experience of YAS use of Internet-based SCPs over a 24-month interval (January 1, 2010 to December 31, 2012). We describe demographics, treatment characteristics, experience of users, and patient-reported late effects of therapy. IRB approval was obtained before any data collection.
Survivorship care plan
YAS used an interactive, Internet-based tool designed to create tailored SCPs. The care plan generator is a free Internet-based service maintained at The Abramson Cancer Center of the University of Pennsylvania and available at www.oncolife.org. Patients were not recruited for this study, but rather decided to engage with the tool voluntarily after encountering it on the Internet. At our center, and many others, we encourage patients to utilize the tool as part of survivorship care. The tool is also hosted on several websites dedicated to cancer care and cancer survivorship. Finally, the tool will appear on an Internet search for “survivorship care plan.” To utilize the tool, a survivor answers questions regarding demographics, cancer diagnosis, and various aspects of cancer treatments received. Based on the answers to these questions, each patient receives an individualized SCP, which includes information on the recommended surveillance for late effects of chemotherapy, radiation, or surgeries in addition to general health maintenance guidelines, general cancer screening, financial and social aspects of survivorship care, and lists of cancer-related resources. Guidelines embedded in the care plan are evidence or consensus based and written in simple patient-friendly language. Because data were obtained only for voluntary participants, no clear “nonparticipant” group existed as part of this study.
Details of the care plan format have been previously described.23 Briefly, the tool is publicly accessible and available in English and Spanish. It is designed for entry of diagnosis and treatments by a survivor, family member, or provider and, on average, takes less than 10 minutes to complete. All questions provide a checklist of options listed as potential surgeries, type and sites of radiotherapy, and chemotherapy/biologic medications. Medications listed include both generic and trademark names, as well as acronyms/initials and typical treatment regimens. The SCP generator may be used initially or updated at any point during or after treatment and thus may be used by patients themselves, medical oncology providers, radiation oncologists, specialized survivorship clinics, or primary care clinicians. Since its initiation, the care plan tool has evolved steadily to include patient-reported outcomes on late and long-term toxicities of treatment.40 Institutional Review Board approval was obtained and all recommended procedures followed before and during execution of this study.
Study population
Inclusion criteria for the YAS cohort included patients diagnosed between 18 and 39 years. The AS cohort included those diagnosed between 40 and 60 years of age. The age range for YAS is defined according to National Cancer Institute (NCI) definition of adolescent and young adult oncology (15–39 years) with the exclusion of adolescent patients (age 15–17.99 years), who were not eligible to use this tool.41 Similarly, the age range for AS was defined to exclude those patients who would be classified as either YAS or geriatric oncology survivors (i.e., >65 years) based on NCI definitions. All patients were at least 2 years from their cancer diagnosis. Exclusion criteria included patients who indicated living with metastatic disease to avoid reporting outcomes that might be due to current therapy or progressive disease, as opposed to long term or late effects.
Measures
Demographic, treatment-related, and current survivorship care information was collected during creation of the care plan. Demographic information collected included age, gender, educational achievement, distance to cancer center, living area (urban, rural, suburban), and country of origin. Treatment information included age at diagnosis, cancer type, presence of associated genetic syndrome, and type of treatments received. Methods of cancer follow-up care were assessed through questions about self-motivated versus provider-initiated use and current survivorship provider discipline. A survey 1 month after completion and review of SCP assessed satisfaction with plan content and whether SCP was shared with a survivor's healthcare team. Satisfaction was assessed by a Likert-type scale rating the information provided as poor, fair, good, very good, or excellent and was dichotomized into poor/fair and good to excellent for analyses. Communication of plan to healthcare team was assessed by a single item asking “Did you share your results with any member of your healthcare team?” and reported as dichotomous “yes” or “no” response.
Patient-reported late effects were collected for any survivor filling out a SCP independently (without healthcare provider assistance). To account for heterogeneity of disease processes and treatment, the total number of queries concerning patient-reported late effects varied depending on diagnosis and treatments received. For example, if a patient received an anthracycline as a chemotherapeutic agent, questions about cardiovascular toxicity would be asked. Answer choices for each individual late effect were “yes,” “no,” and “I don't know.” For the purpose of this study, six late-effect categories were predefined: fatigue, neurocognitive, sexual, cardiovascular, pulmonary, and secondary malignancy. Each item contains a grouping of questions related to that late effect (Appendix Table A1).
Analytic plan
Demographic, treatment, and care plan use patterns are reported using descriptive statistics, including frequency counts with percentages and mean with standard deviations as appropriate. YAS were compared with AS using t-tests for continuous variables and chi-square tests for categorical variables. For patient-reported late effects of therapy, frequencies of patients who endorse any of six predefined late effects were compared between groups.
Results
The data from care plans created for YAS (n = 611) are reported. AS (n = 1742) who filled out a SCP over the same time period are reported as a comparison group. YAS were primarily female (70.8%), white (78.2%), and college educated (62.9%). There was a higher proportion of YAS than AS who were male and of non-white race (p < 0.001). Although the care plan generator is available internationally, the majority of YAS who generated plans were from the United States (77.3%), lived in urban/suburban settings (89.1%) less than 20 miles from their cancer center (65.3%). A higher proportion of YAS than AS were found to live internationally (23% vs. 17%, χ2 = 9.49, p = 0.050) and create their plans in Spanish (4.6% vs. 1.5%, χ2 = 19.26, p < 0.001). The mean age of survivors in the YAS group was 33.3 years with a mean age at diagnosis of 28.2 years. The most common diagnoses represented in YAS were: breast cancer, Hodgkin's lymphoma, testicular cancer, non-Hodgkin's lymphoma, thyroid cancer, and sarcomas. A higher proportion of YAS versus AS received chemotherapy (86% vs. 79%, χ2 = 16.5, p < 0.001) or underwent bone marrow transplant (7.8% vs. 2.8%, χ2 = 10.2 p < 0.001). A higher proportion of AS received radiation (60.5% vs. 53.5%, χ2 = 31.3, p < 0.001) and reported prior surgery related to their cancer diagnosis (88.3% vs. 78.3%, χ2 = 58.2, p < 0.001). YAS were modestly, although significantly farther in time from diagnosis than AS (5.22 years vs. 4.47 years, p < 0.001). Demographic, disease-, and treatment-related data are summarized in Table 1.
Table 1.
Demographic-, Disease-, and Treatment-Related Variables
| YAS (n = 611) | AS (n = 1742) | p | |
|---|---|---|---|
| Gender | |||
| Male | 179 (29.3) | 289 (16.5) | <0.001 |
| Female | 432 (70.8) | 1453 (83.4) | |
| Race | |||
| White | 478 (78.2) | 1479 (85.6) | <0.001 |
| African American | 37 (6.6) | 83 (4.7) | |
| Asian | 25 (4.1) | 70 (4.0) | |
| Hispanic/Latino | 20 (3.3) | 66 (3.8) | |
| Mixed race/other | 32 (5.1) | 44 (2.5) | |
| Highest level of education | |||
| Grade school | 11 (1.8) | 26 (1.5) | 0.115 |
| High school | 66 (11.1) | 190 (11.4) | |
| Some college | 133 (22.4) | 412 (24.8) | |
| College degree | 245 (41.2) | 609 (36.7) | |
| Graduate school | 139 (23.4) | 422 (25.4) | |
| Distance to cancer center | |||
| Greater than 20 miles | 212 (34.7) | 591 (33.9) | 0.730 |
| Less than 20 miles | 399 (65.3) | 1151 (66.1) | |
| Living area | |||
| Urban | 275 (45.0) | 565 (32.4) | <0.001 |
| Suburban | 270 (44.2) | 837 (48.1) | |
| Rural | 66 (11.7) | 340 (19.5) | |
| Country of origin | 0.050 | ||
| United States | 470 (76.9) | 1443 (82.9) | |
| Canada | 38 (6.2) | 92 (5.3) | |
| Great Britain | 35 (5.7) | 117 (6.7) | |
| Australia | 15 (2.4) | 21 (1.2) | |
| Mexico | 5 (0.8) | 6 (0.3) | |
| Other | 48 (7.8) | 63 (3.6) | |
| Plans created in Spanish | 28 (4.6) | 26 (1.5) | <0.001 |
| Diagnosis age, years, mean (SD) | 28.2 (6.9) | 49.0 (5.8) | <0.001 |
| Current age, years, mean (SD) | 33.3 (6.5) | 53.3 (5.9) | <0.001 |
| Time since diagnosis, years, mean (SD) | 5.1 (3.8) | 4.2 (2.9) | <0.001 |
| Associated genetic syndrome | 54 (8.8) | 136 (7.8) | 0.421 |
| Diagnoses (in order of frequency) | Breast (22.4%) | Breast (54.9%) | |
| Hodgkin's (16.4%) | Colon cancer (4.5%) | ||
| Testicular (10.0%) | Lymphoma (5.2%) | ||
| Lymphoma (8.5%) | Head/neck (4.0%) | ||
| Thyroid (3.3%) | Ovarian (2.3%) | ||
| Sarcoma (3.4%) | Prostate (2.1%) | ||
| Received chemotherapy | 626 (86) | 1416 (79) | <0.001 |
| Received radiation | 725 (53.5) | 1079 (60.5) | 0.001 |
| Had surgery | 568 (78.3) | 1576 (88.3) | <0.001 |
| Had bone marrow transplant | 57 (7.8) | 51 (2.8) | <0.001 |
Values are reported as numbers (percentages). Missing values (n = 100 for education question) are excluded from percentage calculations.
AS, adult survivors; SD, standard deviation; YAS, young adult survivors.
Experience with survivorship care and SCPs was similar between YAS and AS. A greater proportion of YAS than AS were receiving oncologist-led survivorship (46.5% vs. 40.9%, χ2 = 18.5, p < 0.001) care as opposed to care led by primary care providers, but less than one quarter of survivors in either group had ever received a formal summary of the treatment they received. Survivors filled out their own care plans, as opposed to receiving healthcare provider-initiated plans, in the majority of cases (76.2% in YAS and 77.3% in AS, χ2 = 0.82, p = 0.365). Similarly, the survivors in both groups endorsed satisfaction with care plan content (92.7% of YAS and AS 89.7% of AS, χ2 = 1.03, p = 0.309) and had shared their SCP with a member of their healthcare team (70.9% of YAS and 73.2% of AS, χ2 = 0.26, p = 0.607). Receipt of survivorship care and care plan usage are summarized in Table 2.
Table 2.
Survivorship Care and Care Plan Usage
| YAS (n = 611) | AS (n = 1742) | p | |
|---|---|---|---|
| Care model used for survivor care | |||
| Oncologist | 284 (46.5) | 712 (40.9) | <0.001 |
| Primary care physician | 132 (21.6) | 306 (17.6) | |
| Shared care | 165 (27.0) | 627 (36.0) | |
| Other | 30 (4.9) | 97 (5.6) | |
| Treatment summary received | |||
| Yes | 126 (20.6) | 286 (16.4) | 0.067 |
| No | 408 (66.8) | 1255 (72.0) | |
| Do not know | 77 (12.6) | 200 (11.5) | |
| Self-motivated use | 466 (76.2) | 1346 (77.3) | 0.365 |
| Satisfied with information in plana | 126/136 (92.7) | 428/477 (89.7) | 0.309 |
| Shared SCP with member of healthcare teama | 90/127 (70.9) | 330/451 (73.2) | 0.607 |
Denominator given when different than total sample. Represents number of participants who responded to 1-month follow-up survey.
SCP, survivorship care plan.
Patient-reported late effects were common in both groups, with fatigue and neurocognitive concerns being the most common late effects in both YAS (50% and 56% respectively) and AS (53% and 58% respectively). On the contrary, few (<5%) of survivors in either group reported cardiovascular late effects or secondary malignancy. A similar proportion of YAS compared with AS reported issues with fatigue, secondary malignancies, or sexual side effects in men. Fewer YAS than AS reported issues with neurocognitive, pulmonary, cardiovascular, or female sexual late effects (p < 0.01). To further delineate the differences in patient-reported late effects between YAS and AS, late effects were compared between YAS and AS with common diagnoses (i.e., breast cancer and non-Hodgkin's lymphoma). YAS with a breast cancer history reported significantly more concerns with fatigue compared with AS with breast cancer history (91% vs. 54%, χ2 = 23.4, p < 0.001). YAS and AS of non-Hodgkin's lymphoma reported similar proportions of late effects across each domain, except cardiovascular issues (8% vs. 0%, χ2 = 6.31, p = 0.012) and female sexual side effects (49% vs. 23%, χ2 = 6.4, p = 0.012), both of which were more prevalent in AS. Patient-reported late effects are summarized in Table 3.
Table 3.
Patient Reported Late Effects of Cancer Therapy
| Patient-reported late effect | YAS | AS | p |
|---|---|---|---|
| Fatigue | 156/277 (56) | 443/769 (58) | 0.719 |
| Neurocognitive | 243/485 (50) | 776/1226 (63) | <0.001 |
| Cardiovascular | 4/402 (1) | 106/1209 (1.4) | 0.50 |
| Pulmonary | 65/200 (33) | 78/167 (47) | 0.005 |
| Second cancer | 16/454 (4) | 36/233 (3) | 0.501 |
| Female sexual | 178/377 (47) | 714/1237 (58) | <0.001 |
| Male sexual | 19/143 (13) | 36/233 (15) | 0.564 |
| YAS of breast cancer | AS of breast cancer | ||
|---|---|---|---|
| Fatigue | 84/92 (91) | 262/478 (54) | <0.001 |
| Neurocognitive | 99/165 (60) | 457/680 (67) | 0.080 |
| Cardiovascular | 0/167 (0) | 3/779 (0.4) | 0.503 |
| Pulmonary | 11/15 (73) | 34/51 (66) | 0.962 |
| Second cancer | 0/114 (0) | 16/814 (2) | 0.131 |
| Female sexual | 68/124 (54.8) | 531/859 (61.8) | 0.137 |
| YAS of lymphoma | AS of lymphoma | ||
|---|---|---|---|
| Fatigue | 21/49 (42) | 31/52 (60) | 0.092 |
| Neurocognitive | 21/49 (42) | 40/76 (53) | 0.402 |
| Cardiovascular | 0/44 (0) | 5/64 (8) | 0.012 |
| Pulmonary | 8/19 (42) | 5/13 (38) | 0.266 |
| Second cancer | 0/44 (0) | 0/67 (0) | n/a |
| Female sexual | 8/35 (23) | 29/59 (49) | 0.012 |
| Male sexual | 2/14 (14) | 4/27 (15) | 0.964 |
Denominator varies by number of participants presented with question based on treatment-related risk of late effect.
Discussion
Survivors of young adult cancers are an understudied and underserved group of patients, compared with older and younger individuals with cancer, across the cancer trajectory from diagnosis through survivorship.7,10 Data indicate that survivors are not receiving formal treatment summaries or care plans and thus, YAS, a prime group to explore use of Internet-based SCPs, because of their care transitions, social transitions, years of survivor care, and need for self-management.42,43
This study is the first to report on the use of Internet-based SCPs by survivors of young adult cancers (diagnosed at ages 18–39). In this study, the experience of YAS with Internet-based SCPs is demonstrated to be feasible for a diverse group self-motivated YAS. As has been shown previously,25,39 survivors tend to be highly satisfied with Internet-based care plans, and use these plans as to aid in communicating with their providers. Internet-based SCPs may have particular importance for engaging select groups of YAS as compared with survivors of other adult cancers who used Internet-based SCPs over the same time period, a higher proportion of YAS were male, of minority status, and live outside the United States.44
Regarding treatment, a higher proportion of YAS who used the resource were treated with chemotherapy and bone marrow transplant. YAS, especially those with high treatment intensity will require more years of ongoing survivorship care as well as personalized screening for late effects and subsequent malignancy. Regarding care model used for survivorship care, the majority of YAS who used this resource report remaining under the care of their primary oncologist at the time of Internet-based SCP creation. This is interesting as the majority of survivors had not previously received a formal treatment summary or care plan. This Internet-based SCP may be used by providers as well as patients to generate SCPs. Creating a SCP during clinical encounters may also be a way for institutions to satisfy requirements for SCP distribution for accreditation purposes.
The fact that a large proportion of YAS are remaining under the care of their primary oncologist, even years posttherapy, calls to attention the need to continue to improve transitions back to primary care providers. Primary care practices, equipped with necessary information about the need for heightened surveillance and symptom management to care for survivors, may provide a more appropriate venue to care for long-term survivors.45 Specifically, even in patients reporting traditionally difficult to treat late effects of therapy (fatigue and neurocognitive issues), the validation and recommendations made through the care plan were highly satisfactory to survivors, which may be useful information to primary care providers managing these patients and symptoms. Finally, while a similar proportion of survivors report of late effects in both groups, it should be noted that YAS were significantly younger at the time of study indicating a higher symptom burden over time for these survivors.
This study has some limitations. First, participants were a select group of patients who found and voluntarily chose to use the SCP generator on the Internet and may be looking for guidance on symptom management and thus the satisfaction with the tool may not be generalizable to all survivors. Because data were available only for survivors who voluntarily utilized the tool, no “nonparticipant” group is available for analysis or comparison. Comparative studies would be useful and represent a future area of study for our group. Survivors who used this resource were more often female, of nonminority status, and college educated. The prominence of this demographic group may be driven by the need for relative affluence to access the Internet, although the tool is free of charge to use. It also may reflect a relative comfort with technology among certain YAS, as well as greater willingness to seek information on the Internet by some groups compared with others. Despite these limitations, understanding use patterns is very useful even as generalizability continues to be explored. Second, while the questions asked are tailored to treatments received, they do not discern whether symptoms reported are late effects of cancer and cancer treatment or effects of aging. All of the late effects are patient self-report. While not confirmed by medical records, these data allow for understanding the symptoms that are most pertinent to survivors.
Cancer survivors of all ages are seeking out information about their cancer history and risk for late effects of therapy through the web.46 The number of YAS willing to report late effects of treatment through this mechanism indicates that SCPs may be a feasible method of obtaining patient-reported late effects from YAS and providing information on late effects to YAS. At our center, we continue to work on methods to incorporate SCPs into care of all survivors, in particular YAS, and many survivor subpopulations rely heavily on this and other Internet tools. High proportions of YAS who used the SCP reported ongoing issues with symptoms in many domains even years, posttreatment, and high satisfaction with SCP content related to their ongoing care. While overall, YAS reported fewer late effects than AS, the proportion of patients reporting ongoing symptoms, particularly concerning fatigue and neurocognitive late effects even 2 years and greater posttherapy, is alarming and reiterates the need for evaluation of all cancer survivors.47 As we strive to implement the use of SCPs with all cancer survivors, this study elucidates the current experience with Internet-based SCPs among self-motivated survivors. Understanding and optimizing the use of SCPs to relay information and capture patient-reported outcomes can be a valuable tool for patients and providers to address late effects of therapy that are most burdensome to them, while informing ongoing surveillance for potential life-altering complications of therapy. Future research should focus on using SCPs as communication tools between patients, oncologists, and primary care and feasibility of providing Internet-based SCPs to all patients.
Appendix Table A1.
Items Used to Assess Patient-Reported Late Effects and Examples of Treatment Which Triggered Assessment
| Patient-reported late effect | Item(s) included | Example of treatment(s) received |
|---|---|---|
| Fatigue | Are you experiencing fatigue (overwhelming physical, mental, or emotional exhaustion)? | All patients with chemotherapy or radiation |
| Have you been diagnosed with a learning disability or memory issue | Cranial radiation | |
| Cytarabine | ||
| Methotrexate | ||
| Neurocognitive | Are you concerned about cognitive changes, such as memory loss, difficulty with short-term memory, concentration or learning new skills | Ifosfamide |
| Cardiovascular | Have you been diagnosed with myocardial infarction, hypertension, angina, heart failure, cardiomyopathy, arrhythmia, or left ventricular dysfunction | Anthracycline |
| Herceptin | ||
| Chest radiation | ||
| Pulmonary | Have you been diagnosed with lung disease or lung fibrosis | Bleomycin, lomustine |
| Lung radiation | ||
| Second cancer | Have you been diagnosed with a second cancer, breast cancer, thyroid cancer, bladder cancer, or AML/MDS. (Did not include skin cancer) | Etoposide, ifosfamide, anthracyclines |
| Radiation | ||
| Female sexual | Have you experienced sexual changes or concerns, including vaginal dryness, painful intercourse, decreased desire | Surgeries: hysterectomy, oophorectomy |
| Pelvic radiation | ||
| Cyclophosphamide | ||
| Male sexual | Have developed erectile dysfunction or required medical intervention to achieve an erection | Prostatectomy |
| Testicular cancer | ||
| Retroperitoneal dissection of lymph nodes | ||
| Have you experienced retrograde ejaculation or dry ejaculation | Pelvic radiation | |
| Cyclophosphamide |
AML, acute myeloid leukemia; MDS, myelodysplastic syndrome.
Acknowledgments
This project was supported in part by an unrestricted educational grant from the LIVESTRONG Foundation, and by the Abramson Cancer Center Paul Calabresi K12 CA076931 17.
Author Disclosure Statement
No competing financial interests exist.
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