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Frequently Asked Questions

The Survivorship Care Plan Builder is a free software tool that was designed to assist oncology professionals in quickly creating custom Survivorship Care Plans in accordance with the Treatment Summary templates and Surveillance Guidelines of the American Society of Clinical Oncology (ASCO®).

The Survivorship Care Plan Builder works by creating a unique Care Plan for each patient, which can then be printed out, emailed or stored electronically. Survivorship Care Plans include five patient-specific sections:

  1. General Information: Contact information for the patient and their care team
  2. Background Information: Key facts about the patient’s diagnosis and medical background
  3. Treatment Plan: Important information about the planned course of cancer treatment
  4. Treatment Summary: Summary information about the patient’s actual treatment
  5. Follow-up care: A surveillance schedule, follow-up testing, and other recommendations for future care

Care Plans may also include documents from Journey Forward’s Survivorship Library on topics like Symptoms to Watch and Potential Late Effects of Treatment.

The Survivorship Care Plan Builder—including technical support—is available to anyone at no charge. Its development, maintenance and support are funded by a collaboration of industry leaders with a common goal of improving survivorship care, including the National Coalition for Cancer Survivorship (NCCS), UCLA Cancer Survivorship Center, Oncology Nursing Society (ONS), WellPoint, and Genentech.

Journey Forward’s Survivorship Care Plan Builder is being used by approximately 4,000 oncology professionals—usually nurses—in private practices, community hospitals and major cancer centers. The Centers for Disease Control and Prevention (CDC) is currently funding two of its Health Promotion and Disease Prevention Research Centers to study the implementation of Journey Forward’s program and tools. If you are currently using the Journey Forward program and you’d like to share your experience, please let us know by sending an email to info@journeyforward.org.

If you are using Journey Forward's Survivorship Care Plan Builder, you will need the following information:

  1. General Information: Contact information for the patient and their care team
  2. Background Information: Key facts about the patient’s diagnosis and medical background
  3. Treatment Plan: Key information about the planned course of cancer treatment
  4. Treatment Summary: Summary information about the patient’s actual treatment
  5. Follow-Up Care: Information on the patient's follow-up care schedule and psycho-social needs

The Survivorship Care Plan Builder currently provides cancer-specific templates for lymphoma, breast, colon and lung cancer. It also includes a generic template for other cancer types.

It can take anywhere from 15 to 60 minutes to build a Care Plan. The amount of time you require will depend upon how accessible the needed information is within your medical record system. Wherever possible, the Survivorship Care Plan Builder provides selection lists, checklists, calculators and other utilities to make the process go as quickly as possible.

Once you have completed the Care Plan Form, select Print Options. From this screen you may attach articles and factsheets from the Journey Forward Survivorship Library to this Care Plan. Select the Add/Remove Documents button to do so. When you are finished, chose the appropriate button to preview, print or export the Care Plan.

If you wish to share a Care Plan with another person you can send it electronically as an email attachment (just as you would a Word document) or you can save the file to a shared network drive. Remember that you can further customize Care Plans with your practice logo in Preferences.

Journey Forward’s Survivorship Care Plans are just like any other document. You can store them anywhere you like on your computer or on a shared network drive connected to your computer. By default, all Survivorship Care Plans are saved in a folder called Survivorship Care Plans, which can be found in My Documents. Many users, however, choose to save their files in a folder on their password-protected intranet, where they can be accessed by other secured users. No patient information is transmitted over the internet or stored on a public server; Journey Forward has no means of accessing your patient data. Please work with a privacy professional in your organization to make sure the Survivorship Care Plan Builder is integrated into your existing HIPAA compliance program and used in a compliant manner.

Anyone can download and install the Survivorship Care Plan Builder at no charge. Once installed, users can then save individual Care Plan files either to a local hard drive or to a shared network drive where they can be accessed by other secured users.

To share changes you have made to your Survivorship Library, Regimen Library or Preferences, copy your local configuration folder over to the newer installations.

The configuration folder can be found here:

  • On Windows Vista and Windows 7: %ALLUSERSPROFILE%\NearSpace\Survivorship
  • On Windows XP: %ALLUSERSPROFILE%\Application Data\NearSpace\Survivorship

We are in the process of working to enable the Survivorship Care Plan Builder to import patient data from your cancer registry. Visit the Journey Forward website for updates. Meanwhile, the Survivorship Care Plan Builder is used in tandem with EHR systems in many institutions and practices. 

First, be sure that everyone who wants to work on a Care Plan has downloaded and installed the Survivorship Care Plan Builder. Once installed, you can save individual Care Plan files to a local hard drive and share the .SCPB files via email--just like you would ordinary documents. Or, you can save the Care Plans to a shared network drive where they can be accessed and/or edited by multiple users. Please note that only one person can work on a Care Plan at a time.

If your practice uses a regimen that is not included in the Survivorship Care Plan Builder Regimen Library, you can add it and, moving forward, it will be available for selection in the Care Plan Form. Please refer to the User Guide for detailed instructions. (See Managing the Regimen Library: Adding New Regimens.)

The Survivorship Care Plan Builder allows you to customize Care Plans in several ways:

  1. The Survivorship Care Plan Builder will print only those fields that you have filled out (and are relevant to your patient and practice); any fields you leave blank are excluded from the printed Care Plan.
  2. You can customize Care Plans with your practice logo in Preferences. (See Managing Preferences in the User Guide for instructions.)
  3. You can choose articles and factsheets from the Survivorship Library to append to individual Care Plans.
  4. You can add to or edit any of the appendices in the Care Plan Builder’s Survivorship Library.

When you print a Care Plan, you can append to it articles and factsheet from the Journey Forward Survivorship Library (including articles you’ve added to the Library).

Yes, if you are using Journey Forward’s Survivorship Care Plan Builder, you can:

  1. Add your institution’s program to the list of Patient or Physician Resources (in the Survivorship Library)
  2. Add an article or factsheet about your program to the Survivorship Library
  3. Add your practice logo to individual Care Plans.

Please see the User Guide for instructions.

The Survivorship Care Plan Builder is updated approximately once a year.  To check for updates, click "Help" from the program’s File Menu and select “Check for updates.”

To be notified of program updates, please register on the Journey Forward website.

Technical support for Journey Forward tools is available free of charge. Contact our software vendor, NearSpace, Inc. via phone: (707.636.5903), fax (707.636.5905), or email (info@nearspace.com).

Journey Forward is a relatively new program designed for oncology professionals and their patients who are beginning or completing active treatment for cancer. Journey Forward promotes the use of Survivorship Care Plans through education efforts and by providing free tools that help oncology professionals quickly create custom Care Plans in accordance with ASCO® guidelines.

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Journey Forward was developed in response to the 2005 Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor: Lost in Transition, which states that every cancer survivor should receive a comprehensive treatment summary and follow-up care plan once they complete treatment. Research conducted by Journey Forward during program development confirmed the benefits to health care professionals and patients when survivorship care is coordinated, monitored and clearly communicated.

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The Journey Forward program was created by a unique collaboration of organizations with the common goal of improving survivorship care, including the National Coalition for Cancer Survivorship (NCCS), UCLA Cancer Survivorship Center, Oncology Nursing Society (ONS), WellPoint and Genentech.

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The Journey Forward collaboration began by conducted qualitative research aimed at developing concrete solutions for addressing the problems Survivors face, as laid out in the Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor: Lost in Transition. This research included: (i) 4 patient focus groups, (ii) 2 primary care physician focus groups, (iii) 40 in-depth health care provider interviews, including oncologists, oncology nurse practitioners, primary care physicians, and (iv) an Advisory Board Meeting with key opinion leaders, community physicians and cancer survivors.

Journey Forward’s Survivorship Care Plan Builder is adapted from the American Society of Clinical Oncologists® (ASCO®) Chemotherapy Treatment Summary templates and Surveillance Guidelines, which are based on the latest evidence.

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Yes! Journey Forward was the 2011 Winner of the Health Impact Award for making a big impact on the lives of patients and professionals. In 2010, Journey Forward was selected as a Gold Star winner of the Cancer Patient Education Network (CPEN) Award, which celebrates the achievement of individuals or organizations whose efforts have resulted in “extraordinary contributions to patients, families or health care practitioners. “ In 2009, Journey Forward won a 2009 BlueWorks award, which honors health care innovation that “improves the quality and value of health care for consumers.” The Centers for Disease Control and Prevention (CDC) is currently funding two of its Health Promotion and Disease Prevention Research Centers to study the implementation of Journey Forward’s program and tools.

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Journey Forward's Survivorship Toolkit can be downloaded from the website. To request a printed copy, send an email to info@JournyForward.org. With any materials requests, please include: (i) contact information, (ii) Toolkit type (patient or professional), (iii) quantity, (iv) shipping address, and (v) receive date (if applicable).

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In addition to advocating for the use of Survivorship Care Plans, Journey Forward provides a free software tool—the Survivorship Care Plan Builder—that health care professionals can use to quickly create custom Care Plans for patients in accordance with ASCO® Treatment Summary templates and Surveillance Guidelines. Journey Forward provides educational tools and resources for patients, as well.

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Most cancer experts agree that survivorship care planning is essential to providing quality cancer care following active treatment. The Institute of Medicine (IOM) movingly described the current gap in care in their 2005 report From Cancer Patient to Cancer Survivor: Lost in Transition:

    “Too many survivors are lost in transition once they finish treatment. They move  from an orderly system of care to a ‘non-system’ in which there are few guidelines to see them through the next stage of their life or help them overcome the medical and psychosocial problems that may arise…. Every cancer survivor should have a comprehensive care summary and follow-up plan once they complete their primary cancer care that reflects their treatment and addresses a myriad of post-treatment needs to improve their health and quality of life.”

A Survivorship Care Plan is a coordinated post-treatment plan for the patient, their oncology team, primary care physician and other health care professionals. Survivorship Care Plans built with Journey Forward’s Survivorship Care Plan Builder typically include:

  1. Contact information for the patient’s care team
  2. Diagnosis and background information
  3. Treatment plan and summary
  4. Optimal schedule for follow-up care
  5. A psycho-social assessment
  6. And, information on topics like possible effects of cancer treatment, symptoms to watch for and more

While these Plans can include important information for monitoring for possible secondary cancers and/or side effects of cancer treatment, they are not intended to replace detailed patient charts or chemotherapy flow sheets.

See a sample Care Plan built with Journey Forward’s Survivorship Care Plan Builder.

Journey Forward conducted quantitative and qualitative research when developing this program. That research indicated that virtually all patients and primary care physicians find Survivorship Care Plans to be useful tools for coordinating post-treatment care. The Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, also found that survivors benefit from having a roadmap for follow-up care.

Survivorship Care Plans are implemented in different ways in different practice settings. Some practices use Journey Forward’s Survivorship Care Plan Builder (a Windows-based software program based on ASCO® Treatment Summary templates and Surveillance Guidelines); others use other products, including ASCO®’s paper-based templates. The individual responsible for creating Survivorship Care Plans also differs from one practice to the next. For instance, Survivorship Care Plans may be filled out by the an oncologist, an oncology nurse, nurse navigator, ora nurse practitioner, a physician assistant, a professional nurse navigator, or even a registry technician.

The treating clinician for Survivorship Care Planning may be able to bill for the total time spent examining and/or counseling the patient on using the Survivorship Care Plan. Please check with the patient’s plan before billing as reimbursement is subject to the member’s benefit plan design.