Cancer survivorship practices, services, and delivery: a report from the Children’s Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees

Abstract

Purpose

To describe survivorship services provided by the Children’s Oncology Group (COG), an assessment of services was undertaken. Our overall aims were (1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, and research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer.

Methods

One hundred seventy-nine of 220 COG institutions (81%) completed an Internet survey in 2007.

Results

One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care, which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan. Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Minimal time required for initial and annual survivorship visits is estimated to be approximately 120 and 90 min, respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral.

Conclusions

Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time intensive.

Appendices

Appendix A. State of Late Effects (LE) Services in COG

• 1 Only one set of answers is needed for each institution in COG.

Before proceeding please check with others at your institution to determine if your institutional information has already been submitted.

The survey will take approximately 15–20 minutes to complete. You can come back to re-enter data at any time; however, the program will not "remember" where you left off, so you will need to start from the beginning. Therefore, it is advisable to complete the entire survey at one time.

• 2 Please choose your institution from the drop down menu provided.

If you are having difficulty finding your institution, please contactDebra Eshelman-Kent via e-mail at debra.kent@cchmc.org or Karen Kinahan at K-Kinahan@northwestern.edu.

• 3 Please provide the following information.

Name (last, first)

Credentials

E-mail Address

• 4 Does your institution provide late effects care for childhood cancer survivors?

• 5 How does your institution provide late effects care? (choose only one)

In a specialized LE program by designated provider(s)

In regular oncology clinic by health care professional staffing clinic that day

In regular oncology clinic by survivor's treating oncologist

Other, please specify

• 6 What are the eligibility criteria for entry into LE services at your institution? (check all that apply)

at least 2 years off treatment

at least 3 years off treatment

at least 5 years off treatment

at least 5 years from diagnosis

Other, please describe

• 7 Are BMT /stem cell transplant survivors eligible for LE services?

• 8 What are the BMT/stem cell transplant survivors’ eligibility criteria for entry into LE services at your institution? (check all that apply)

at least 2 years off treatment

at least 3 years off treatment

at least 5 years off treatment

5 years from trnsplant

No active GVHD

Other, please explain

• 9 Are children with central nervous system tumors eligible for LE services?

• 10 What are the CNS survivor eligibility criteria for entry into LE services at your institution? (check any that apply)

at least 2 years off treatment

at least 3 years off treatment

at least 5 years off treatment

5 years from diagnosis

Other, please explain

• 11 Are patients treated for disease other than oncologic illnesses (ex: aplastic anemia, histiocytosis) eligible for LE services?

• 12 Does your program provide clinical consultations to survivors not treated at your institution?

• 13 Does your program provide phone consultations to survivors not treated at your institution?

• 14 Can patients self refer for late effects services at your institution?

• 15 Please supply demographic information that will be made accessible to survivors and health care professionals in the Late Effects Directory of Services.

Appendix B. General Information

• 16 Please choose the average number of new oncology patients treated at your institution annually.

Less than 30 new oncology patients/year

• 31–60 new oncology patients/year

• 61–90 new oncology patients/year

• 91–120 new oncology patients/year

• 121–150 new oncology patients/year

Greater than 150 new oncology patiens/year

• 17 In 2006, how many total survivors were eligible for late effects clinic visit/appointment?

• 18 Of the following choices, please pick the one which best depicts the

ACTUAL number of survivor VISITS in 2006.

• Less than 50 visits

• 50–100 visits

• 101–300 visits

• 301–500 visits

• 501–800 visits

• Greater than 801 visits

• Data not available

• 19 How frequently are childhood cancer survivor appointments scheduled in your clinic? (please choose one)

• one day/week

• 2–3 days/week

• 4–5 days/week

• one day per month

• two days per month

Other, please specify

• 20 Per month, about how many survivors are typically seen (on average) in your late effects clinic setting/session.

# of Survivors per Month

• 21 Please select which of the following routines describes how pediatric cancer survivors are followed in your institution for additional risk based care.

Survivors come to the late effects (LE) clinic and are referred to sub-specialsts at alternate times apart from their LE visit

Survivors come to clinic staffed by LE team and required sub-specialists

Survivors are seen by their general oncologist who manages their late effects care and are referred to sub-specialists at alternate times

Other, please describe

• 22 If risk based screening is required (ex: echo) is it usually done at the same visit or on another day/time?

Same visit Another day/time

• 23 Do all/almost all survivors receive a copy of their personal medical history, sometimes called an oncology medical summary or cancer treatment summary?

• 24 If “yes”, who usually prepares/abstracts the data provided in it?

• 25 Do survivors receive a detailed written account of their visit, with pertinent findings, after each visit?

• 26 Please describe the average amount of time spent (in minutes per patient) on preparation of treatment summary.

• 27 Please describe the average amount of time spent (in minutes per patient) on scheduling of appropriate tests/chart review prior to visit.

• 28 Please describe the average amount of time spent (in minutes per patient) on initial LE visit (one-on-one patient time).

• 29 Please describe the average amount of time spent (in minutes per patient) on annual LE visit (one-on-one patient time).

• 30 Please describe the average amount of time spent (in minutes per patient) on gathering, interpreting and compiling lab results, special tests results, etc.

• 31 Please describe the average amount of time spent (in minutes per patient) on post clinic conferencing.

• 32 Please describe the average amount of time spent (in minutes per patient) on communication of findings to patient.

• 33 What visit level are most routine/annual LE visits billed at? (If supplying information from oustide the US, please use "Other" to free-text how billing is done.)

• Level 1 (CPT 99211)

• Level 2 (CPT 99212)

• Level 3 (CPT 99213)

• Level 4 (CPT 99214)

• Level 5 (CPT 99215)

Unknown

Other, please specify

• 34 On a routine LE visit, which of the following professionals seeing a survivor would submit a bill for their services? (check all that apply)

• MD

• NP

• PA

• RN

• Nutritionist

• Social Worker

• Education Specialist

• Neuropsychologist

• Psychologist

Other, please specify

Appendix C. Resources

• 35 Does your institution provide financial support for your program operations? (Ex: Nurse coordinator salary funded by the institution or affiliated medical school)

• 36 In the past 5 years has your institution had any level of philanthropic funding for salary support for some or all Late Effects personnel? (Not including government funding)

• 37 In the past 5 years has your institution had philanthropic support (not as a part of research funding) which enables clinical care for patients?

(Ex: Parents against leukemia organization pays for an echo on noninsured patients)

• 38 Does your institution currently have research funding specifically designated for clinical testing of patients in the context of a research study that the patient is enrolled in? (Ex: a free PFT for patients enrolled in a research study about lungs)

• 39 How many nurse practitioners (NP)/clinical nurse specialists (CNS) does your program have?

• 40 Approximately what percentage of the NP/CNS' job is spent on late effects?

• 41 How many designated physician assistants (PA) does your program have?

• 42 Approximately what percentage of the PA's job is spent on late effects?

• 43 How many RN clinical coordinators (i.e. a person different than an NP) does your program have?

• 44 Approximately what percentage of the RN clinical coordinator's job is spent on late effects?

• 45 How many designated social workers does your program have?

• 46 Approximately what percentage of the social worker's job is spent on late effects?

• 47 How many designated administrative support staff /secretaries does your program have?

• 48 Approximately what percentage of the administrative staff/secretary's job is spent on late effects?

• 49 How many designated nutritionists does your program have?

• 50 Approximately what percentage of the nutritionist's job is spent on late effects?

• 51 How many designated educational specialists or neuropsychologists does your program have to help with survivor issues?

• 52 Approximately what percentage of the educational specialist or neuropsychologist's job is spent on late effects?

• 53 How many designated clinical research associates (CRA) does your program have?

• 54 Approximately what percentage of the CRA's job is spent on late effects?

• 55 Does your program provide dedicated personnel to solve insurance and/or employment related issues?

• 56 Does your program have a database which is used to track survivor health care outcomes, and/or other pertinent clinical information about survivors?

If yes, type/name of database used (ex: Access, Oracle, etc.)

• 57 Is there a fee for phone consultations discussing recommendation for risk based management for survivors?

• 58 Is there a fee for preparation of cancer treatment summaries for any survivor?

Appendix D. Late Effects Services for Care of Survivors Once They Become Adults

• 59 At what age (if applicable) are cancer survivors referred outside the treating/pediatric center for their cancer-related follow-up care?

We see our former pediatric cancer patients indefinitely at the treating institution and do not transition them elsewhere for their risk based care.

No age limitations, we transition survivors when survivor is ready.

Our survivors are seen through age 16, then transition elsewhere.

Our survivors are seen through age 18, then transition elsewhere.

Our survivors are seen through age 21, then transition elsewhere.

Other criteria: Please Describe.

• 60 If your survivors are referred elsewhere in adulthood for their cancer related care (risk based late effects care) please pick the choice below that most accurately depicts how their cancer related/risk-based care is managed (select only one)

  • a) In a specialized program for adult survivors of childhood cancer utilizing a primary care provider, with linkage and flow of information to the treating institution

  • b) In a specialized program for adult survivors of childhood cancer utilizing a primary care adult practitioner and adult oncologist

By an adult oncologist in an adult cancer setting

• c) We refer back to the survivor’s general health care provider (family practice, internal medicine , gynecologist) in the community without specific flow of information back to us

• d) Other, explain

The survey is almost complete. Just a few more questions.

• 61 Several models of cancer survivor care have been described in the literature. Please pick the one the most accurately depicts your LEservices for adult survivors of childhood cancer. Please read all choices carefully before selecting your answer:

  • a) Cancer center based model WITH community referral: Survivors are transitioned at adulthood to their primary health care professional for routine cancer- related (LE) care. All late effects routine testing is managed and coordinated by their PCP with the LE (oncology) team primarily serving as consultants to multiple PCPs. In this model the LE team/treating oncologist have little to no direct patient care, and may be only peripherally involved.

  • b) Cancer center based model WITHOUT community referral: Survivors are kept indefinitely at the treating institution for their cancer -related (LE) follow-up care. Generally care is with the same LE/oncology providers who provide care to the pediatric survivor population.

  • c) Hybrid model (Combined cancer center and community based model): Survivors are transitioned to adult health care providers generally within the same health care system, with established opportunities (ie. a formal mechanism) for collaborative research, collaboration in clinical care, and/or other resource sharing. The LE (oncology) team and adult health care provider closely collaborate for survivor care.

  • d) Postal/internet/phone based model: Survivors are dismissed from LE (oncology) follow-up at the cancer center. Contact is made regularly about survivor outcomes via postal, phone or internet based inquiry.

  • e) None of the above (please describe below).

• 62 If none of the above models describe your model, please describe your model for LE services for adult survivors of childhood cancer in detail (limit 500 characters).

• 63 For your adolescent and young adult survivors, is specific information routinely provided by your late effects staff on the importance of health insurance and how to obtain/keep it?

• 64 For your adolescent and young adult survivors, is specific information and support routinely provided by your late effects staff on career planning, vocational pathways or other issues related to obtaining a job?

• 65 Please supply demographic information (as applicable) about your services for adult survivors of childhood cancer. This information will be made available on the COG Website to survivors and health care professionals pursuing adult late effects services.

Appendix E. Barriers

• 66 Please choose the 2 most problematic barriers in caring for your pediatric cancer survivors

  • a) Lack of dedicated time for late effects program development Survivor lack of health care insurance or insurance limitations

  • b) Survivor knowledge deficit about the importance of maintaining cancer-related follow-up

  • c) Lack of survivor desire to be followed by the LE team

  • d) Not enough funding for support of program

  • e) Lack of perceived need or support for LE services/program by other oncologists

  • f) There are no barriers in my institution

  • g) Other, describe

• 67 From your perspective what are the two most difficult barriers you face (if any) in transitioning your survivors to adult care providers for cancer related care? (Please choose 2)

  • a) Lack of knowledge about late effects by the clinician being referred to

  • b) Survivor lack of health care insurance or insurance limitations

  • c) Survivor knowledge deficit about the importance of maintaining cancer related follow-up into adulthood

  • d) Lack of survivor desire to leave the comfort of the treating institution or oncologist

  • e) Lack of survivor access to a primary care provider for reasons other than insurance such as geography

  • f) Lack of oncology provider desire to “let go” of survivor

  • g) Conflict between COG recommendations for risk based follow-up and adult health care provider recommendations

  • h) We do not have any barriers

  • i) Other, please specify

• 68 Please describe any unique features about your LE follow-up that you feel have not been previously addressed (limit to 500 characters)