University of Groningen

Survivorship care after testicular cancerBoer, Hindrik

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Citation for published version (APA):Boer, H. (2019). Survivorship care after testicular cancer: New insights in late effects of treatment andapproaches to shared-care follow-up. Rijksuniversiteit Groningen.

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The next step in survivorship care plans:In control with an easy to use mobile

application

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H. Boer1, S. Bunskoek1, S. Lubberts1, J. Nuver 1, R. Blaauwbroek 2, J.D. Lefrandt3, G. Steursma1, A.J. Berendsen2, S. Siesling4,5, J.A. Gietema1

Authors’ institutions and affi liations: 1. Department of Medical Oncology, University of Groningen,

University Medical Center Groningen, the Netherlands; 2. Department of General Practice, University of Groningen,

University Medical Center Groningen, the Netherlands; 3. Department of Vascular Medicine, University of Groningen,

University Medical Center Groningen, the Netherlands; 4. Department of Research, Netherlands Comprehensive Cancer Organization, Utrecht, the Netherlands;

5. Department of Health Technology and Services Research, MIRA Institute for Biomedical Technology and Technical Medicine, University of Twente, Enschede, The Netherlands.

Submitted

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Abstract

PurposeA survivorship care plan (SCP) offers patients and their healthcare providers an overview of the received treatment and future follow-up care. During the past decade, implementation of SCPs was greatly hampered by lack of time and resources. Our aim was to develop a smart, mobile application to provide a personalized SCP to testicular cancer survivors, participating in a shared-care survivorship program.

MethodsThe content of the SCP was based on guidelines for testicular cancer follow-up and recommendations of experts in the field of testicular cancer survivorship care. Requirements and wishes were discussed with healthcare providers and testicular cancer patients before and during development. The mobile application was developed for the iOS (iPhone/iPad) platform.

ResultsBy scanning a QR code the mobile application can import an individual SCP generated by the oncology provider. Patients receive an interactive overview of their personalized follow-up plan. The care providers receive a copy. The SCP is generated based on data extracted from the electronic health record and using algorithms of survivorship guidelines. Both the web-based SCP generator and the mobile application can be used by other cancer centers worldwide and can be adapted for use in other tumor types.

ConclusionWe launched and made available a mobile application and the accompanying SCP generator, which can be easily used to offer survivors and their healthcare providers a clear and personalized overview of survivorship care. With this digital SCP, survivors are getting more in control and it allows optimal coordination and planning of required survivorship care.

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Introduction

In the coming years, the number of cancer survivors in the United States is expected to grow by 31%, from 13.7 million in 2012 to almost 18 million in 2022.1 This trend is observed worldwide. These patients are in need of adequate survivorship care, ranging from timely detection of potential recurrent disease and long-term and late toxicity to advice and support for regaining and maintaining a healthy life. To ensure that patients receive appropriate follow-up care, the Institute of Medicine has recommended the use of a survivorship care plan (SCP) in its report ‘From Cancer Patient to Cancer Survivor: Lost in Transition’, published a decade ago.2

The SCP, a summary of the received treatment and a personalized follow-up schedule, provides guidance to both cancer survivors and their healthcare providers. Unfortunately, until now the implementation of SCPs has been a very slow process.3, 4

In a recent large survey among oncologists in the United States less than 5% of the oncologists provided survivors with a written SCP.5 Implementation of SCPs in daily practice is problematic because of a number of factors. It is time-consuming to collect the personal data that is needed and secondly to write a plan. Furthermore, financial reimbursement for compiling and discussing a plan is often unclear. Despite repeated recommendations and even policy requirements, such as those prescribed by the Commission on Cancer6, the use of SCPs appears to stay in a state of inertia. Recent advances in information technology have created new ways to expedite provision of care plans to survivors. Over the past two decades, patients have increasingly incorporated the use of digital information and mobile devices into their daily life. Recently, companies such as Google and Apple have presented innovative products that support people in achieving and maintaining a healthy lifestyle. A broad range of mobile applications and supportive e-health programs for cancer patients has become available.7 Therefore, it is a logical next step to use mobile devices as a digital carrier for an SCP. A mobile application is practical because patients often wear a smartphone in their pocket when they visit the hospital. Another advantage of a digital plan compared with a paper plan, is the benefit care providers can take from electronic health records and algorithms based on up-to-date guidelines. A group of patients that is expected to be particularly accustomed to digital technologies is the group of young testicular cancer survivors. Testicular cancer survivors are subjected to an intensive follow-up schedule after treatment, which makes a clear care plan particularly valuable. Thanks to its long existing successful treatment consisting of surgery, radiotherapy and/or platinum-based chemotherapy, testicular cancer can serve as a model for development of survivorship care in other tumor types. Testicular cancer survivors are at risk for late effects of the treatment such as cardiovascular disease, which makes collaboration with primary care important. Advances in research on late effects of (chemotherapeutic) treatment of testicular cancer were summarized in a review by Haugnes et al., including the proposal for an SCP prototype for testicular cancer survivors.8 We discussed the option to use a mobile application for this purpose in a comment on an article by Parry et al, who stressed the need for a focus on care planning in survivorship care.9

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We aimed to develop a mobile application for cancer survivors that could provide them with a concise and digital personal SCP and help them organize their shared-care follow-up with collaboration between patient, oncologist and primary care physician. A secondary aim was to make this application to be usable by patients and cancer centers nationwide and beyond.

Methods

Study PopulationThe application was developed as part of a trial evaluating a shared-care survivorship care program for testicular cancer patients (ClinicalTrials.gov ID NCT01783145). Eligibility criteria are complete remission after chemotherapy for metastatic testicular cancer, age ≥18 years and no mental disability. At start of follow-up, an SCP is generated according to existing guidelines. The primary care physician receives a copy of the SCP and an additional guideline describing their role in the care program.The SCP defines the time-points in follow-up for assessment of remission status and check-ups for assessment and management of cardiovascular risk and psychosocial status, performed by the primary care physician. Primary endpoints are the safety and feasibility of shared-care follow-up after chemotherapy for testicular cancer. Safety boundaries were defined for the occurrence of failures in adequate response to signals indicating cancer recurrence or increased cardiovascular risk. Patient data are monitored real-time to check if the SCP is carried out within these boundaries.

Design of the Survivorship Care PlanThe recommendations of Haugnes et al.’s review on testicular cancer outcome and late effects served as a blueprint for the SCP.8 The SCP proposal of the Institute of Medicine and different formats of existing survivorship care plans were evaluated. The SCP had to include an end-of-treatment summary specific for testicular cancer and a follow-up scheme for detection of relapse and late effects of treatment. The follow-up scheme was in accordance with the Dutch guideline for treatment of testicular cancer, which is comparable with the guidelines of the European Society for Medical Oncology (ESMO) and the European Association of Urology (EAU).10-12

The personal overview of the follow-up schedule had to be the central feature of the mobile application. The SCP had to contain information about the cardiovascular risk profile post-treatment, because testicular cancer survivors are very prone to develop cardiovascular risk factors.13 In addition to the follow-up plan and end-of-treatment summary, the mobile application should contain features to provide patients with trustworthy general information on the disease and treatment, accurate contact information, and the ability to record questions and answers.

Requirements and design: input of involved care providers and patientsThe experiences of a previous study on shared-care survivorship care in childhood cancer survivors were used during the development of the application.14 The conceptual design and requirements of the application were discussed with oncologists, primary care physicians and other healthcare providers involved in survivorship care. During visits to our cancer survivorship care unit, testicular

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cancer patients were asked for their needs, wishes and suggestions for improvement of their survivorship care plan and application.

Technological PlatformThe application was developed for iOS (iPhone/iPad) because of the security and high level of quality control of this platform. Based on the requested/demanded functions an interaction design was made. The application was developed for using Xcode (4.2) (Apple, CA, 2012). Prototypes of the application were tested using TestFlight. A Microsoft SQL database was used to manage data from the electronic health record system and transfer data to a web-based environment for generating SCPs. The application was submitted to Apple for quality testing and was approved.

Results

Mobile ApplicationThe developed mobile application serves as a carrier for a digital SCP. The application, named “Survivor Care”, is available worldwide for free in the Apple App Store.15 The current edition, available in English and Dutch, provides testicular cancer survivors, stage I - IV disease, with a personalized survivorship care plan. With limited adjustments, this application also provides possibilities to carry SCPs for other cancer types. The default follow-up schedules can easily be adapted.

Generating a Survivorship Care PlanGenerating an SCP is a simple three-step process, as illustrated in Figure 1. The care provider has to enter a limited set of diagnostic and treatment data and, most importantly, select a follow-up schedule.Step 1Essential treatment and follow-up data are entered into the web-based SCP generator or derived directly from the electronic health record system (required data are specified in Appendix Table 1). This step requires approximately 5 - 10 minutes.Step 2The assembled information is presented. A visual representation of the follow-up schedule is generated, based on the selected guideline and the start date of follow-up care. The follow-up schedule can be easily adjusted; appointments can be altered or added, e.g. for additional CT imaging.Step 3The SCP is saved as a PDF file, which can be imported into the local electronic health record system. The PDF file contains a QR code, i.e. a two-dimensional barcode. The patient scans this QR code with the mobile application on his smartphone or tablet. For patients without a smartphone or tablet, the PDF file can be printed on paper. Figure 2 contains an example QR code which can be tested after downloading the app.

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Figure 1. Generating an SCP and use of the Survivor Care App.

Functionality of the Mobile ApplicationAfter scanning the QR code, the patient receives an overview of his care plan (Figure 2). The SCP is supported with an information section. This section contains a detailed explanation of the SCP itself. In addition, there are informative items concerning the end- of-treatment summary, online communities and advices regarding work, rehabilitation, nutrition and physical exercise. This content is managed by a nurse practitioner specialized in survivorship care. The patient can manually add additional appointments. All appointments in the app are automatically synchronized with the patient’s personal calendar. Contact information of the coordinating center makes it easy for patients to reschedule appointments and to contact their cancer center in case of questions.

User Experiences of PatientsPatients who are currently using the application while participating in the shared-care survivorship care program, are positive about the possibility to navigate their follow-up care. The application keeps them well informed about the timing and purpose of different tests during follow-up. The results of an evaluation questionnaire among twenty users are shown in Table 1. The most appreciated feature of the app is the overview it provides in follow-up care.

Potential Use by Other CentersWe especially aimed to make this mobile application also suitable for patients treated in other cancer centers. The mobile application itself is easily accessible; it can be downloaded

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worldwide from the Apple App Store. The SCP generator service is available to cancer centers worldwide. An international website was developed to easily generate an SCP with a QR code: survivorcare.umcg.nl. The QR code is used as a way of conveniently transferring data within the vicinity of the outpatient clinic, without the necessity and security risk of a web-service. No personal data are required and the estimated time needed to generate an SCP is between 5 and 10 minutes. Use of the application by other cancer centers is illustrated in Figure 3. It is technically an easy feature to add or modify a follow-up protocol. At the moment, the detailed part of the treatment summary is focused on testicular cancer. The SCP can both be based on a shared-care or a hospital-only model. Language adaptations are also feasible, for example translation into German, French or Spanish.

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Example code

Survivor ID: NL1G000759

Figure 2. Screenshots of the Survivor Care App and an example QR code which can be tested after downloading the app.

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Figure 3. Potential use of the SCP generator and Survivor Care App by other centers.

Table 1. Evaluation questionnaire (n = 20 patients).

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Evaluation of use Agree Somewhat agree

Somewhat Disagree Disagree

The app provides a clear and useful overview of follow-up care 65% 30% 5% 7%

The app does not have additional value compared with a plan on paper 10% 15% 30% 45%

I would recommend this app to other patients 60% 35% 5% 0%

Which features did you appreciated? n %

Overview of follow-up care appointments 17 85%

Summary of diagnosis and treatment 14 70%

General information about survivorship care 8 40%

Advices regarding diet, exercise, work, insurance etc. 3 15%

Recording questions and answers 1 5%

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Discussion

We developed a mobile application that provides patients with a concise, personalized SCP on their smartphone or tablet. Hereby, we introduced a novel way in the process of compiling and transferring SCPs to the patient. With this universally available application, it has become easily achievable to generate a compact and useful SCP that includes a personal treatment summary and a specific follow-up schedule based on guideline algorithms. By scanning the QR code with his smartphone, the patient easily transfers the SCP ‘to his pocket’, where it is accessible whenever it is needed.

With a personal SCP on their smartphone, patients not only know what care needs to be done, but also when, where and by whom. This patient-centered approach enables survivors to play a more active and responsible role in their own follow-up care. Survivors should be well informed and aware of the contribution they can make to their own well-being, especially because lifestyle is an important factor in the recovery after cancer treatment and prevention of late toxicity. As the primary owner of the treatment summary, the patient can switch between healthcare providers and/or regions without losing information on follow-up care. It is important to have an accurate summary of the treatment, especially because late toxicity may develop many years after administration of the initial treatment. An interesting example of a web-based SCP is the LIVESTRONG internet-program. With this program patients can compile an SCP all by themselves. It is used on a large scale and was also positively evaluated by survivors.16

From the perspective of the healthcare providers the SCP is equally important. Recently, Suh et al. reported that many general internists involved in childhood cancer survivorship care are unfamiliar with available surveillance guidelines.17 Similarly, adherence to breast cancer follow-up is also suboptimal, with both overuse and underuse of surveillance visits and tests.18 Overuse of testing can be harmful for patients and increases healthcare costs, in a time of increasing budgetary issues. Active surveillance of stage I testicular cancer is only safe and effective if patients receive an accurate follow-up program, during which scans and tumor markers are scheduled timely.19,20 In all situations mentioned above, a clear and personalized follow-up plan is essential to guide health care providers and to prevent both underuse and overuse of health care tests and resources. A limited number of studies have evaluated the use of SCPs. In most of these studies, no significant changes in patient-reported outcomes were found.21,22 Patients did report to be very satisfied with their SCP, but a tangible beneficial effect of SCPs has not yet been proven. Brennan et al. summarized ten previous studies on SCPs and concluded that RCTs did not show significant effects of SCPs on survivor distress, satisfaction with care, cancer-care coordination or oncological outcomes.23

However, we argue that SCPs are necessary in order to organize and coordinate survivorship care. A clear plan makes collaboration between healthcare providers probably more feasible, for example shared-care follow-up between oncologist and primary care physician. Based on the SPARCCS survey, Virgo et al. reported that primary care physicians who receive an SCP are less likely to indicate that they have insufficient knowledge or training.24 Providing SCPs could improve the coordination between primary care physicians and oncologists.25

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Since the Institute of Medicine’s recommendations 6, SCPs have only been implemented on a very small scale. From several studies it is reported that one of the most important barriers for making SCPs is lack of time and resources.23 The recently revised ASCO SCP template is designed to be more compact and suitable for implementation in daily practice compared to the earlier version.26 However, this two-page document is paper-based which probably decreases its rate of implementation in practice. Nonetheless, it is useful as a blueprint for digital solutions. The mobile application can be easily adapted by other centers. The mobile application we have developed contains many components of the ASCO SCP template, including an equally compact summary of relevant treatment data, an interactive follow-up plan and contact information. The Survivor Care app could serve as a support tool for implementation of the ASCO survivorship care plan. A strong point of our web-based solution is that it can be used by other hospitals via the SCP and QR-code generator website.

In conclusion, we have developed a mobile application that serves as a carrier for a digital SCP and is used by testicular cancer survivors in a shared-care model of follow-up. The increasing population of cancer survivors is in need of high-quality follow-up care. Survivors, who are well informed by their up-to-date guideline-based SCP, are more in control because they know what needs to be done, when, where and by whom. This concept of a mobile SCP can also be applied to other cancer types and in other cancer centers.

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References

de Moor JS, Mariotto AB, Parry C, et al: Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomarkers Prev 22:561-70, 2013Hewitt ME, Greenfield S, Stovall E: From cancer patient to cancer survivor : Lost in transition. Washington, D.C., National Academies Press, 2006 pp. 151-153Stricker CT, Jacobs LA, Risendal B, et al: Survivorship care planning after the institute of medicine recommendations: how are we faring? J Cancer Surviv 5:358-70, 2011Birken SA, Deal AM, Mayer DK, et al: Determinants of survivorship care plan use in US cancer programs. J Cancer Educ 29:720-7, 2014Blanch-Hartigan D, Forsythe LP, Alfano CM, et al: Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. J Clin Oncol 32:1578-85, 2014Hewitt ME, Greenfield S, Stovall E: From cancer patient to cancer survivor: Lost in transition. Washington, D.C., National Academies Press, 2006 pp. 151-153Ventura F, Ohlén J, Koinberg I: An integrative review of supportive e-health programs in cancer care. Eur J Oncol Nurs 17:498-507, 2013Haugnes HS, Bosl GJ, Boer H, et al: Long-term and late effects of germ cell testicular cancer treatment and implications for follow-up. J Clin Oncol 30:3752-63, 2012Boer H, Nuver J, Lefrandt JD, et al: Easy navigating through the forest of survivorship care. J Clin Oncol 32:61-2, 2014Dutch national guideline on testicular cancer: http://www.oncoline.nl/testiscarcinoom, Oncoline, 2009Oldenburg J, Fossa SD, Nuver J, et al: Testicular seminoma and non-seminoma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol 24 Suppl 6:vi125-32, 2013Albers P, Albrecht W, Algaba F, et al: EAU guidelines on testicular cancer: 2011 update. Eur Urol 60:304-19, 2011de Haas EC, Altena R, Boezen HM, et al: Early development of the metabolic syndrome after chemotherapy for testicular cancer. Ann Oncol 24:749-55, 2013Blaauwbroek R, Tuinier W, Meyboom-de Jong B, et al: Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study. Lancet Oncol 9:232-8, 2008 Survivor Care App: https://itunes.apple.com/nl/app/survivor-care/id519370277?mt=8, App Store (iOS)Hill-Kayser CE, Vachani CC, Hampshire MK, et al: Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors. Cancer 119:3854- 60, 2013Suh E, Daugherty CK, Wroblewski K, et al: General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med 160:11-7, 2014Grunfeld E, Hodgson DC, Del Giudice ME, et al: Population-based longitudinal study of follow-up care for breast cancer survivors. J Oncol Pract 6:174-81, 2010Nichols CR, Roth B, Albers P, et al: Active surveillance is the preferred approach to clinical stage I testicular cancer. J Clin Oncol 31:3490-3, 2013de Wit R, Bosl GJ: Optimal management of clinical stage I testis cancer: one size does not fit all. J Clin Oncol 31:3477-9, 2013Brothers BM, Easley A, Salani R, et al: Do survivorship care plans impact patients’ evaluations of care? A randomized evaluation with gynecologic oncology patients. Gynecol Oncol 129:554-8, 2013Grunfeld E, Julian JA, Pond G, et al: Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol 29:4755- 62, 2011

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Brennan ME, Gormally JF, Butow P, et al: Survivorship care plans in cancer: a systematic review of care plan outcomes. Br J Cancer 111:1899-908, 2014Virgo KS, Lerro CC, Klabunde CN, et al: Barriers to breast and colorectal cancer survivorship care: perceptions of primary care physicians and medical oncologists in the United States. J Clin Oncol 31:2322-36, 2013Forsythe LP, Parry C, Alfano CM, et al: Use of survivorship care plans in the United States: associations with survivorship care. J Natl Cancer Inst 105:1579-87, 2013Mayer DK, Nekhlyudov L, Snyder CF, et al: American society of clinical oncology clinical expert statement on cancer survivorship care planning. J Oncol Pract 10:345-51, 2014

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Appendix table 1. Specification of data fields in the Survivor Care app.

Supplementary table 1. Specification of data fields in the Survivor Care app. General information Required data Institution + Male/Female + Tumor type + Follow-up schedule + Date start follow-up + Fields specific for testicular cancer Diagnosis Seminoma or non-seminoma Teratoma in tumor tissue Treatment Orchiectomy + Date surgery Chemotherapy + Start date chemotherapy Cumulative dose (mg) Cisplatin Bleomycin (USP) Etoposide (mg) Carboplatin (mg) Ifosfamide (mg) Paclitaxel (mg) Radiotherapy + Start date radiotherapy Total dose of radiation (Gy) Retroperitoneal lymph node dissection + Date RPLND Toxicity during therapy Cardiovascular event Thrombo-embolic event Bleomycin toxicity Status post-treatment Weight Length (Body Mass Index automatically calculated) Metabolic syndrome Paresthesia Medication post-treatment In case of relapse Date relapse Treatment relapse Chemotherapy specification

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