The Polaris Oncology Survivorship Transition (POST) System: A Patient- and Provider-Driven Cancer Survivorship Planning Program
Abstract
Background
It is strongly recommended that individuals ending treatment for cancer have a “survivorship plan,” and new standards require survivorship planning for accreditation, However, a comprehensive plan is often neglected.
Objective
To present the development and field test results of a web-based, breast cancer survivorship care planning system.
Methods
The Polaris Oncology Survivorship Transition (POST) blends input from the electronic health record (EHR), oncology care providers (OCPs), and patients to create a survivorship care plan (SCP). The content of the POST program was created with the assistance of end-user input (patients, oncologists, and primary care providers (PCPs)) and the full program was piloted on women ending treatment for breast cancer. This paper presents the pilot study that field-tested the POST In a clinical setting. Patients were recruited from outpatient care clinics and chemotherapy units in a comprehensive care center. The study included 25 women ending treatment for breast cancer in the past year, 4 OCPs, and PCPs. Patients received the POST computeπzed assessment and a tailored SCP.
Results
The POST assists providers in crafting efficient and comprehensive SCPs and was rated highly satisfactory by all end-users.
Discussion
The POST program can be used as a cancer survivorship planning program to assist OCPs in care planning for their patients ending treatment for breast cancer.
Conclusion
This study provides support for Incorporating computerized SCP programs into clinical practice. Use of the POST in clinical practice has the potential to improve survivorship planning.
Within the United States, the estimated number of cancer survivors will increase from 14.5 million to approximately 19 million by 2024.1 The National Coalition for Cancer Survivorship distinguishes between 2 phases of survivorship: 1) intermediate/short-term (posttreatment), and 2) long-term survivorship. In 2015, the American College of Surgeons (ACS)2 implemented accreditation expectations that include a written or electronic survivorship care plan that is 1) prepared by the OCP;2) given to patients at treatment completion; and 3) includes a record of care received, important disease characteristics, and a follow-up plan incorporating evidence-based standard of care.
Survivorship care planning has been a highly debated topic in cancer care. Whereas some oncology care experts argue that survivorship planning has the potential to improve quality of life, decrease morbidity and mortality related to future cancers, and enhance patient access to resources to manage the physical, emotional, and social sequelae of cancer treatment,3–6 others argue that there is a lack of evidence that survivorship care planning actually impacts patient outcomes.7 One of the reasons for the debate is that there is indeed a lack of methodologically rigorous studies examining the outcomes of care planning, which is likely due to care planning being time-consuming and, thus, not done consistently by OCPs.8 One exception is a study by Grunfeld and colleagues,9 which is one of the only randomized controlled trials that has tested outcomes related to survivorship planning and has received much attention because of its null findings. Primary critiques include: a lack of tailored survivorship planning; patients out of cancer treatment for an extended time; extrapolating findings from the Canadian healthcare system to the US system; time of follow-up measurement; and use of non-cancer-specific distress tools.10,11 Further, Grunfeld’s survivorship planning did not include any assessment of the patient’s status or needs and neglected to integrate care planning into clinical practice.
The purpose of this paper is to present the findings from a phase 1 STTR (small business technology transfer) study, which funded the development of the Polaris Oncology Survivorship Transition (POST) system. The POST is a computerized, web-based survivorship planning program that generates a tailored SCR The POST system is the first technology-enabled system to produce tailored survivorship plans fully reflecting the Institute of Medicine (IOM) recommendations4 and the ACS 2015 requirements. The POST is innovative as it incorporates information from both the OCP and the patient; features readily available “plug in” for 2-way integration with diverse EHRs; provides dynamic, electronic referrals for specialized support service; and facilitates care coordination between OCPs and PCPs. We also discuss our ongoing phase 2 study, which is examining the POST in a randomized controlled trial to determine its impact on patient outcomes as they move into long-term survivorship.
Method
Participants
Twenty-five patients with breast cancer were enrolled in the field study. Inclusion criteria included being 18 years of age or older, female, having a diagnosis of non-metastatic breast cancer, and being within 3 visits of ending active treatment or up to 1 year out of ending active treatment for breast cancer. Patients with other types of cancer, men, and patients with communication difficulties were excluded.
Assessments
The POST Patient Assessment was the main outcome measure for participants and a tool for creating the patient-driven portion of the SCP We considered the assessment a measure for the study as it assesses important outcome variables described below. In addition, patients completed a Preparing for Life as a New Survivor (PLANS) assessment before and after the Patient Assessment, a feedback/satisfaction survey after reviewing their SCP with their OCP, and a follow-up assessment 1 month after enrollment. OCPs and PCPs also completed follow-up assessments.
The POST Assessments
The POST program incorporates 2 data sources to generate an overall SCP: 1) a Provider Questionnaire populated by information from the EHR, which for this study was entered by a research assistant and OCP, and 2) a computerized Patient Assessment (Table 1). The POST SCP is broken down into 2 portions: 1) the provider version of the SCP, and 2) the patient version of the SCP. Both summaries consist of 7 sections: 1) Medical Diagnosis and Treatment Summary, 2) Medical Care Plan, 3) Physical Symptoms and Functioning, 4) Psychological Adjustment or Psychological Distress, 5) Short-term and Long-term Effects of Breast Cancer, 6) Supportive Care, and 7) Cancer-Related Health Behaviors. Sections 1 and 2 of both the provider and patient versions of the SCP are generated from the Provider Questionnaire and are exactly the same in terms of content. Sections 3 through 7, which are further broken down into subsections, are generated from the patient assessment and vary depending on how the patient responds to the assessment. Also, the patient and provider versions of sections 3 through 7 vary in terms of depth of content, as the patient version is significantly more detailed in terms of psychoeducation and resources.
Table 1
POST Patient Assessment Content Areas
| Content Area | Number of Items | Sample |
|---|---|---|
| Physical Symptoms and Functioning | 15 | In the past 2 weeks, please rate your FATIGUE or TIREDNESS. |
| Psychological Distress (Anxiety and Depression) | 20 | In the past 2 weeks, how often have you felt sad, down, or depressed? |
| Short-term and Long-term Effects of Breast Cancer | 10 | Are you having problems with lack of sexual interest or drive (low libido)? |
| Supportive Care | 16 | Some patients find it helpful to speak with a counselor about emotional distress that they or their families are experiencing. Would you like to have your information sent to our on-site clinical psychologist? |
POST indicates Polaris Oncology Survivorship Transition.
Section 1 of the SCP provides a comprehensive summary of cancer diagnosis and treatment and other notable medical diagnoses. Section 2 summarizes the patient’s plan for the next year, including future scans, tests, and appointments anticipated by the OCP. Sections 3, 4, and 5 include tailored feedback and evidence-based psycho-education about emotions, relationships, side effects, and lifestyle choices that impact quality of life and health in survivorship. Section 6 is linked to questions regarding social support, spirituality, or financial issues. Finally, section 7 is informed by questions related to diet, exercise, smoking, and alcohol use. This section provides empirically supported information about health behaviors and cancer risks and includes tailored recommendations for behavior change. The “Patient drug information” from uptodate.com was also provided for any current cancer medications taken by the patient. In addition, based on responses from the patient assessment, individuals could request a referral to a psychologist and/or a social worker. For example, individuals with elevated distress were asked if they wanted their information sent confidentially to a psychologist specializing in cancer-related psychosocial issues.
Whereas both the provider version and patient version of the SCP contain information on these 7 areas related to survivorship, as stated above, the provider version is very brief and is focused on simply documenting status and symptoms of the patient. Because the provider version would be saved to the EHR, and potentially sent to the patient’s PCP, we crafted a brief version of the care plan. Hence, we labeled this brief version the provider version or “provider summary.” The provider version is approximately 3 to 5 pages and flags any concerns reported by patients during their assessment (ie, smoking status, high level of depression, sexual problems). (See Appendix A for a Provider Version/Summary SCP example.)
The patient version of the SCP is more detailed, providing information and resources depending on the patient’s responses to the assessments related in sections 3 through 7. Depending on these responses, a patient version of the SCP can range from 25 to 45 pages. This document can be lengthy because if a patient reports concerns about any of the areas assessed, the POST is programmed to provide the patient with printed materials related to the topic as well as regional and local resources that may help them address the reported concerns. For example, if a woman reports that she is concerned about her weight at the end of cancer treatment, the POST will add a section to the patient version of the SCP that provides her with information taken from good resources (eg, American Cancer Society, National Cancer Institute [NCI]) about cancer risk and obesity, as well as information about best ways to manage weight, and will even include some resources in the area for obesity management treatment. We chose to not include an example of a patient version SCP because of the length of the document, but readers are encouraged to contact the authors if they would like to request an example.
The PLANS
The 17-item PLANS scale was used to assess how prepared and knowledgeable women felt regarding surveillance and care as they entered survivorship.12,13 Part 1 uses a 4-point Likert scale (strongly disagree = 1 to strongly agree = 4) to determine patients’ beliefs regarding their role and their providers’ roles during survivorship. Part 2 uses a 10-point Likert scale to measure participants’ confidence in ability to care for themselves as they enter survivorship, with higher scores indicating greater confidence.
Feedback/Satisfaction of POST
The Patient POST Feedback/Satisfaction Survey asked participants about the online assessment process and how they felt about their SCP. Patients were asked how much they agreed or disagreed with 14 items using a 5-point Likert scale (strongly disagree = 1 to strongly agree = 5), open-ended questions, and their ratings for overall satisfaction.
Follow-Up Assessment
The 1-month follow-up survey was adapted from a survey developed by Brothers and colleagues14 to evaluate the clinical utility and impact of survivorship plans and used a 5-point Likert scale (strongly disagree = 1 to strongly agree = 5).
OCP Satisfaction Survey
OCPs evaluated the SCPs by answering how much they agreed or disagreed with statements on a 5-point Likert scale, with higher scores indicating more agreement. They also provided overall satisfaction ratings, feedback about the most useful sections of the SCP, and open-ended comments.
PCP Satisfaction Survey
PCPs were asked about their perception of the SCP’s usefulness for evaluating their patient’s status and future care needs and other ways that the SCP may have been helpful in transitioning care from the oncology team back to the PCP. Similar to the OCP survey, a 5-point Likert scale was used, with higher scores indicating more agreement.
Procedure
Patients
Enrollment procedures are illustrated in Figure 1. Researchers worked with the oncology team to identify potential participants for the field test. All participants went through informed consent procedures and were given the option to send a copy of the provider version of the SCP to their PCP. Participants used an iPad or tablet computer to complete assessments. When the patient portion of the assessment was completed, the OCP completed his or her portion of the POST Provider Questionnaire and checked for inaccuracies. The SCP was then reviewed with the patient and checked for accuracy, and a hard copy was provided to the patient to review at her leisure. After the appointment and SCP review, research staff administered a feedback survey and readministered the PLANS. Any referrals requested for a social worker or clinical psychologist were confirmed with the patient and sent to the appropriate provider. All participants were called 1 month after the initial assessment to complete a follow-up assessment over the phone with a trained research assistant and were remunerated $40.
OCP indicates oncology care provider; PCP, primary care provider; PLANS, Preparing for Life as a New Survivor; POST, Polaris Oncology Survivorship Transition; SCP, survivorship care plan.
Only estimates of time were documented for each step taken in survivorship planning for the field test because the POST was still in development and was tested in live clinical situations. Without EHR integration, a research assistant took about 30 to 45 minutes to prepare the Provider Questionnaire, and the OCPs spent about 5 minutes checking and updating the questionnaire after patients completed their assessments. A majority of patients completed their assessments within 10 minutes. It took approximately 10 to 15 minutes to review the SCP with patients at the end of their appointment.
OCPs
OCPs were contacted in person or via e-mail after all participants completed the POST assessment to arrange a time and date to complete a satisfaction survey.
PCPs
The provider version of the SCPs was sent to the PCPs of the participants who had given permission to share their information. If a PCP was within the hospital network, he or she was e-mailed the SCP and satisfaction survey. If a PCP was outside the network, he or she was sent the SCP via secure fax and contacted via phone by the principal investigator to complete the satisfaction survey.
Results
Data Analytic Plan
Descriptive statistics were determined with demographic data. Means and standard deviations (SDs) were calculated for satisfaction ratings and PLANS scores — pre and post. Wilcoxon signed rank tests were also used for tests of significance. Finally, percentages were calculated for OCP, PCP, and patient follow-up data related to evaluation of the POST program.
Participant Demographics
Twenty-five patients with breast cancer were enrolled in the field test. The mean age at the time of enrollment was 61 years (SD, 13.59), 92% were Caucasian, and 8% were black or African American. No participants were Hispanic or Latina. Three women were enrolled prior to ending active treatment but were within a close enough proximity that the OCP felt they were ready for an SCP. Thirteen women were enrolled within 6 months, and 9 were enrolled within 1 year after ending active treatment for breast cancer.
Patient Outcomes
Baseline and Postintervention Confidence Ratings – PLANS
Twenty-three patients (92.0%) completed the PLANS before taking the patient assessment and after reviewing their SCP. Confidence ratings were equally high before and after the patient assessment (Figure 2). At both times, the median of the 5-item average score was 9.40 (range, 6.60–10.00) on a 10-point scale where 10 = “Extremely Confident,” Z = 0.31, P = .75, and r = .06. Immediately following the POST, 84% of patients had an average score of 8 or higher. At follow-up, 91% had similar scores. Ratings of surveillance and coordination were generally high before the Patient Assessment, with a median score of 3.00 on the 4-point scale, where higher scores indicated more favorable responses (range, 2.45–4.00). However, a Wilcoxon signed rank test indicated that scores were significantly higher after assessment and review of the SCP (median, 3.45; range, 2.36–4.00), Z = 2.03, P = .04, and r = .42.
Baseline Feedback/Satisfaction of Patient Assessment
Twenty-five patients rated the Patient Assessment immediately after completing it. Sixty-eight percent of the patients were “Very Satisfied” with the assessment process overall, 28.0% were “A Lot Satisfied,” and 4.0% were “A Little Satisfied.” Figure 3 provides specific details regarding respondent ratings.
Patient Baseline Feedback/Satisfaction of SCP
Twenty-three patients rated the SCP. Seventy percent (69.6%) of the patients were “Very Satisfied” with the SCP overall, 26.1% were “A Lot Satisfied,” and 4.3% were “A Little Satisfied.” Figure 4 provides specific details regarding respondent ratings.
Patient Follow-up
One-month follow-up assessments were completed with 22 of 25 participants (88.0%) over the phone. Two participants were lost to follow-up and 1 withdrew from the study. Questions were posed regarding usefulness of the SCP as well as relevant behavioral changes since baseline. Wilcoxon signed rank tests indicated that satisfaction scores were not significantly different at follow-up compared with ratings immediately following the SCP review (patient assessment, Z = −0.71, P = .48, r = −0.15; SCP, Z = −0.82, P = .41,r = −0.17). Table 2 provides additional information about patient feedback at follow-up.
Table 2
Patient Follow-up Assessments
| Patient Follow-up | Average Rating (strongly disagree = 1 to strongly agree = 5) |
|---|---|
| Understanding of clinical services | 4.11 (n = 22) |
| The SCP helped in understanding and addressing… | |
| Your medical concerns | 4.14 (n = 22) |
| Your psychological and/or social concerns | 4.20 (n = 20) |
| Sexual well-being | 4.17 (n= 18) |
| Health risk factors (like smoking and weight) | 4.40 (n = 20) |
| Risk of a second cancer | 3.78 (n = 22) |
| Need for a referral to another medical provider | 3.83 (n = 18) |
| Responsibilities of your healthcare providers | 4.23 (n = 22) |
| Understanding of medical treatment and plan | 4.26 (n = 22) |
| The SCP increased your knowledge of… | |
| Your cancer and treatment | 4.29 (n = 21) |
| Short-term effects of your cancer treatment | 4.11 (n = 19) |
| Strategies to monitor or manage the short-term effects of cancer treatment | 4.37 (n = 19) |
| Long-term effects of your cancer treatment | 4.11 (n = 19) |
| Strategies to monitor or manage long-term effects of cancer treatment | 4.21 (n = 19) |
| Strategies for reducing risk (like changing health habits or behaviors) | 4.27 (n = 22) |
| Other resources available to you at the clinic or medical center | 4.45 (n = 22) |
| Helpfulness of SCP | 4.17 (n = 22) |
| Since receiving the SCP, the SCP has been helpful regarding… | |
| Your cancer | 4.41 (n = 22) |
| Planning your own care | 4.32 (n = 19) |
| Fatigue | 3.72 (n = 18) |
| Surgical procedures and side effects | 3.94 (n = 18) |
| Chemotherapy procedures and side effects | 4.27 (n = 11) |
| Radiation procedures and side effects | 4.27 (n = 11) |
| Other treatment procedures and side effects | 3.89 (n = 19) |
| Returning to your daily routine or returning back to the workforce | 4.47 (n = 15) |
| Relationships with family and friends | 4.10 (n = 20) |
| Transitioning out of active treatment and into survivorship | 4.26 (n = 19) |
| % Endorsed | |
| Have you changed or do you plan on changing any of your health or wellness behaviors? | 72.7a |
| Did the SCP influence any of the changes? | 50 |
| Did you change your behavior prior to receiving the SCP? | 12.5 |
| Have you utilized any supportive services suggested on the SCP? | 4.5 |
OCP Outcomes
Three oncologists and 1 oncology nurse practitioner completed the satisfaction survey asking about the Provider Questionnaire and SCPs. None had prior formal experience using an SCP in their clinical practice, but all were familiar with existing options such as Journey Forward. See Table 3 for information about OCP feedback.
Table 3
OCP and PCP Follow-up Assessments
| % Endorsed | ||
|---|---|---|
| Healthcare Provider Follow-up | OCP (N = 4) | PCP (N = 9) |
| Most useful sections of the SCPa | ||
| Medical Diagnosis and Treatment Summary | 100 | 66.6 |
| Medical Care Plan | 50 | 55.5 |
| Physical Symptoms and Functioning | 25 | 22.2 |
| Psychological Adjustment | 25 | 33.3 |
| Short-term and Long-term Effects | 75 | 44.4 |
| Supportive Care | 25 | 33.3 |
| Cancer-Related Health Information | 25 | 22.2 |
| Impact on Clinical Practice | ||
| OCP and PCP | ||
| Would consider using the SCP in clinical practice | 75b | 77.8c |
| Would recommend the SCP to colleagues for survivorship planning | 75 | |
| PCP-specific | ||
| Having the SCP will benefit clinical interactions with patients | 77.8c | |
| The SCP helped to stimulate conversation that would not otherwise have come up | 66.7d | |
| Made clinical decisions based on SCP-provided information | 22.2e | |
| Average Rating (strongly disagree = 1 to strongly agree = 5) | ||
| Evaluation of SCP | 3.9 | 4.1 |
| OCP and PCP | ||
| The SCP is easy to read and understand, is comprehensive, is the appropriate length | ||
| OCP-specific | ||
| The POST is an efficient way to put together an SCP | ||
| PCP-specific | ||
| The SCP was efficient and did not generate extra work, increases my confidence to take care of this cancer survivor, gives me a better understanding of my patient’s cancer treatment, is something I would like to receive in the future, gives me new information about the patient that I probably would not have had without the plan | ||
OCP indicates oncology care provider; PCP, primary care provider; SCP, survivorship care plan.
PCP Outcomes
Although all PCPs confirmed receipt of the SCP, only 9 of 21 PCPs (42.8%) completed the online satisfaction survey. Therefore, we present their data here to be interpreted with caution. Overall, 44.4% of PCPs were “Very Satisfied” with the POST program, 33.3% were “A Lot Satisfied,” and 22.2% were “Somewhat” or “A Little Satisfied.” See Table 3 for information about PCP feedback.
Discussion
The POST is innovative and may be a good resource for providers who are striving to meet the standards surrounding survivorship care planning. First, the POST produces tailored survivorship plans that fully reflect IOM recommendations and ACS requirements. Second, the content and crafting of the assessment and SCP were heavily informed by patients, OCPs, and PCPs. Third, the POST program has the capacity to communicate with the EHR, which significantly impacts efficiency in building survivorship plans. However, it should be noted that the EHR integration was developed after the end of this study and is now part of the POST program during our ongoing, phase 2, NCI-funded, randomized controlled trial. Fourth, the POST is both patient and provider driven, whereas most existing programs are simply provider driven. Fifth, the SCPs include a thorough medical summary and plan as well as a psychosocial summary of functioning, and suggestions to improve survivorship functioning over time. Finally, the POST aids communication and the transfer of care from the oncology team back to the PCP by sending a copy of the SCP to the patients’ PCPs. Given that many PCPs do not receive detailed information, and in the worst situation do not receive any information from the oncology team, the POST’s automatic transmission of the SCP to the PCP is pioneering.
A key point of this study was clinical implementation, as all SCPs were built in “real time” during the clinic visits. We wanted the study to mirror real-life clinical practice; however, because this was a development and field trial project, we had to rely primarily on the research staff as we were working through programming development iterations while conducting the field trial. The oncology care team was involved with building the medical sections of the SCP and was the group who reviewed the care plans for accuracy. In our ongoing phase 2 study, we have built a protocol that mirrors what we believe is a viable option for oncology treatment centers to do wide-scaled survivorship planning.
In our protocol, the nurse practitioners/oncology staff build the care plans, including information prepopulated from the EHR, prior to the patient coming in for a “survivorship care planning” visit. There, the plan is reviewed with the patient by a nurse practitioner. After the review, the patient sees her oncologist for 1 final visit during which she has an opportunity to ask questions and address any concerns or information provided in the SCP. The provider then signs off on the SCP, and the briefer provider version of the SCP is both uploaded to the EHR and sent to the PCP. Finally, the patient retains a physical copy of the patient version of the SCP. Results from this study will be disseminated once the study is complete in 2018.
Another important piece of SCP implementation is how to handle patients who have psychosocial needs that are identified in their assessments. For this present study, we were able to make referrals to the on-site psychologist and social worker, who would then contact patients to schedule appointments or visit the clinic if it was an urgent situation. This worked well, and we found that it was very helpful for the psychologist and social worker to be able to review the SCP prior to seeing the patient. However, there are some situations where oncology clinics do not have psychologists on staff to address psychological needs of patients. In these situations, we feel technology can, again, be the answer to connecting patients with resources in their communities. For example, in a different oncology care—related project, our team built the technology to identify psychosocial distress in patients with cancer through a patient-driven, web-based program that could also match a patient’s insurance and zip code to a tailored database we built.15 This aided patients who were not interested in seeing a provider in the cancer center for various reasons. Polaris Health Directions, the technology team that built the POST, has the ability to integrate a similar type of referral system into the POST program.
We assessed both OCP and PCP outcomes, as we were interested in their perceptions of the clinical utility of the POST program. Although we do not present the data here since the number of providers sampled is very low (OCP = 4, PCP = 9), there was a trend that the OCP felt the SCP was most helpful in building and presenting the medical diagnosis and treatment summary as well as the medical care plan. Further, the majority of both the OCP and PCP endorsed that they would consider using the SCP in clinical practice and would recommend the SCP to colleagues for survivorship planning. Finally, the PCPs were most likely to report that they felt that having the SCP would benefit clinical interactions with patients, and that the SCP helped stimulate conversation that would not otherwise have come up in their usual interactions with patients. However, the PCPs did not feel that the SCP impacted their decision-making in their clinical encounters.
We also assessed patient ratings regarding confidence for survivorship, before and after review of the SCP. As shown in Figure 2, patient ratings of confidence did not change over time. This was likely because the sample’s confidence pre-SCP was very high, which allows for little improvement post-SCP. Figures 3 and and44 provide information about how the patients viewed the assessment and the actual SCP that was generated from the POST program, and it appears the patients had quite favorable reviews of both. It should also be noted that patient ratings of the program remained favorable at the 1-month follow-up (Table 2).
There are many limitations to this study. The most important limitation is that this study does not show that the POST program is any more efficient than the other planning programs in existence. We were unable to achieve the EHR integration when we were conducting the field study and were busy working on the development and testing of the POST program. However, it should be noted that the purpose of a phase 1 STTR is to develop and test programs like the POST, so that by the end of the study there is a streamlined, usable program to test in a phase 2 trial where issues like efficiency can be addressed. We presently have the phase 2 randomized controlled trial under way and are measuring time to build the SCP compared with other programs, as we feel that the true innovation of the POST 2 is its efficacy and ability to integrate into teal clinical practices.
There is much we still do not know about survivorship care planning—its impact on patients, and its impact on clinical practices. Research is needed to determine the potential impact of survivorship planning on health and psychosocial outcomes. Mayer et al8 suggested 4 broad areas of SCP research: content, dissemination and implementation, outcomes, and improved study methodology. We need a better understanding of issues that ate important to cancer survivors, as well as what strategies we can use to best prepare patients for survivorship.16
In terms of dissemination and implementation, there is a great need for studies aimed at developing guidelines for institutional use so cancer centers can comply with IOM recommendations.6 We need a better understanding of best possible reimbursement pathways, and optimal insurance and payment options.6 Identifying the best way for OCPs to receive compensation for SCP delivery is essential.17 Also, as addressed above, a consistent barrier to SCP implementation is lack of time. Developing and delivering an SCP could take between 1 and 4 hours per patient.18 This time demand can be reduced by integrating planning programs with the EHR or cancer registry. This will be an important piece of future studies as we continue to investigate the best strategies, and potential consequences and benefits, of EHR or cancer registry integtation.19
Outcomes research related to SCPs should focus on how to best measure important constructs or difficulties experienced by patients.14 We did not present patient outcomes in this paper as our sample was small and the purpose of the field test was POST program development and utility. Because there is a lack of randomized controlled trials in this area of study, it is difficult to confidently say which issues remain important to the quality of life of survivors over time, and sound methodological studies are needed to determine the important constructs that threaten the well-being of survivors. Finally, more investigation is needed regarding how SCPs can best facilitate communication between medical providers.17 Gaps in physician understanding must be thoroughly defined to help guide SCP content, and PCP training in survivorship planning may be important for improving care as it transfers from the oncology team back to general medical practice.20 ✵
Appendix A: Survivorship Care Plan Provider Summary
Survivorship Care Plan: Provider Version of SCP
The first part of this Survivorship Cancer Plan (SCP) labeled PROVIDER VERSION is for your medical providers including members of your oncology team and your primary care doctor. The PROVIDER VERSION provides information about your medical diagnoses, treatment and future medical plans. Your oncologist will review this section with you at this visit. The PATIENT VERSION of the SCP has some detailed information about breast cancer survivorship for you to review on your own.
| SECTION ONE: Medical Diagnosis and Treatment Summary | |
|---|---|
| Oncology Treatment Team Medical Oncology (508-334-6200) Dr. Med One Radiation Oncology (774-442-5551) Dr. Rad One Surgical Oncology (508-334-6200) Dr. Surg One | Nursing (508-334-6200) Jane Smith Cosmetic Surgery (508-334-5211) Social Work (774-441-8632) Psychologist (886-597-HOPE) |
| Primary Care | Name: Primary Care Email: ude.ytisrevinu@erac.yramirp Phone: (555) 664-2442 Fax: (555) 782-6910 Address: 55 Lake Avenue, Worcester, MA 01655 |
| Date of Diagnosis | 02/06/2013 |
| Diagnosis | Breast Cancer |
| Disease Location | Left |
| Stage of Cancer | Stage IA: T1 N0 M0 |
| Type of Cancer | Estrogen positive AND HER2 positive |
| Other cancer diagnoses | |
| Other non-cancer diagnoses | Crohn’s disease |
| Surgery | Lumpectomy with sentinel lymph node biopsy |
| Reconstruction | None |
| Prophylactic Surgery | No |
| Chemotherapy | Neo-adjuvant |
| Date Chemotherapy Completed | 07/20/2013 |
| Radiation | Post Lumpectomy Radiation |
| Date of last radiation treatment | 12/20/2013 |
| Treatment complications | Cardiac dysfunction |
| Diagnosis of hereditary breast or ovarian cancer symptoms | No |
| Date of last screening mammogram | 06/06/2013 |
| Date of last breast MRI | 08/10/2013 |
| Date of last colonoscopy | 09/30/2012 |
| Date of last pap smear/pelvic exam | 02/16/2014 |
| Date of last bone density scan | 02/16/2015 |
| SECTION TWO: Medical Diagnosis and Treatment Summary | |
|---|---|
| Current Cancer Medications | Tamoxifen |
| Cancer Recurrence Monitoring? | Regular history, physical examinations and mammography are recommended for breast cancer follow-up. Routine lab work and Imaging studies are not recommended as part of ongoing breast cancer surveillance. |
| 5-year plan | Annual screening mammogram Routine clinic visit every 6 months Breast MRI, If indicated PAP as recommended by PCP |
| Appointments scheduled | Next appointment date: 7/8/15 - Primary Care |
| Appointments for Patient that need to be scheduled now | |
| Information about future monitoring/appointments needed | |
SECTION THREE: Physical Symptoms and Functioning
| SECTION FOUR: Psychological Adjustment | ||
|---|---|---|
| Area | Value (High=Severe) | Info Provided to Patient |
| NCCN Distress Thermometer (0–10) | 6 | N/A |
| Behavioral Health Impairment (anxiety, depression, subjective well-being, functional disability) (0–100) | 35 | N/A |
| Depression (0–100) | 25 | Y |
| Anxiety (0–100) | 10 | Y |
| Functional Disability (0–100) | 0 | Y |
| SECTION FIVE: Short-term and Long-term Effect | ||
|---|---|---|
| Symptom Area | Patient Endorsed Difficulty | Area |
| Lymphedema | Y | N/A |
| Cognitive Effects | Y |
|
| Sexual Dysfunction | Y |
|
| Appearance/Body Image | Y |
|
| Fear of Recurrence | Y |
|
| Premature Menopause and/or Infertility | N | N/A |
| SECTION SIX: Supportive Care | ||
|---|---|---|
| Item | Patient Endorsed Difficulty | Area |
| Family Problems | Y |
|
| Finances/Employment/Practical Problems | Y |
|
| Spirituality/Religiosity | Y | N/A |
| Relationships/Social Support | Y | N/A |
| SECTION SEVEN: Cancer-Related Health Information | ||
|---|---|---|
| Item | Patient Reported | Info Provided to Patient |
| Weight at Diagnosis (lbs.) | 140 | N/A |
| Most recent weight (lbs.) | 142 | N/A |
| Total Weight Gain or Loss (lbs.) | +2 | Y |
| Concerned about weight | Y | Y |
| Want info about diet/cancer risk | Y | Y |
| Want info about exercise/cancer risk | Y | Y |
| Smokes cigarettes | Y | Y |
| Drinks alcohol | N | Y |
Referrals
- Patient provided a referral to social worker, Mr. John Jones
- Patient provided a referral to psychologist, Dr. Erin Boudreaux
Footnotes
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Contributor Information
Erin O’Hea, Department of Psychiatry, University of Massachusetts Medical School, Worcester, MA. Department of Psychology, Stonehill College, Easton, MA.
Juliet Wu, Departments of Emergency Medicine and Psychiatry, University of Massachusetts Medical School, Worcester, MA.
Laura Dietzen, Polaris Health Directions, Wayne, PA.
Tina Harralson, Polaris Health Directions, Wayne, PA.
Edwin D. Boudreaux, Departments of Emergency Medicine, Psychiatry, and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA.