Table 4.
Barriers and facilitators of survivorship care plans in the healthcare setting (n = 19)
| Authors | Sample | Cancer type | SCP details | Outcomes | Study design | Barriers | Facilitators |
|---|---|---|---|---|---|---|---|
| Alford-Teaster et al. (2023) | Rural |
n = 74 (23 survivors, 51 healthcare providers in primary care (n = 11) and oncology (n = 40)) Breast |
Not available | Perspectives on survivorship care planning and use of telehealth | Mixed; cross-sectional; semi-structured interviews; focus group discussions |
• SCP is liked but PCPs do not receive them • Survivors do not transition back to primary care as they do not share a relationship with their PCP • Clinicians thought shared telehealth appointment was unrealistic in their current care model |
• Survivors and clinicians supported shared telehealth appointments for survivorship care planning |
| Arana-Chicas et al. (2023) | Rural |
n = 27 Solid tumors |
Not available | Needs of older rural cancer survivors | Qualitative; semi-structured interviews |
• Feeling overwhelmed with the paperwork and terminology • Lack of coordination between PCP and oncology • Poor understanding of work-related challenges • Lack of consideration for farm animals that survivors work with |
• One on one discussion of survivorship care |
| Ashing-Giwa et al. (2013) | Black/African American |
n = 28 (25 survivors, 3 advocates) Breast |
ASCO SCP template • Cancer-related information (i.e., treatment history, medication, side effects) • Follow-up care/surveillance recommendations • Health advisories • Quality of life information |
Understanding of SCP Feedback on cultural and socio-ecological responsiveness |
Qualitative; community-based participatory research (consensus meetings) | • Scheduling additional appointments to complete SCP or pay for staff time to complete SCP |
• View the entire SCP with doctors • Survivors and providers complete relevant sections of the SCP • Survivor and PCP complete sections on family history, comorbidity, HRQOL, and advisories • Oncology team completes section on cancer treatment, follow-up treatment, medical referrals, HRQOL, and advisories |
| Ashing et al. (2014) | Latina |
n = 22 (12 survivors;10 stakeholders) Breast |
ASCO Breast Cancer Adjuvant Treatment Plan and Summary and Survivorship Care Plan (TSSCP) template • Cancer-related information (i.e., treatment history, side effects) • Follow-up care/surveillance • Health advisories • HRQOL information |
Inform development and evaluation of tailored SCP | Mixed; cross-sectional; community-based participatory research (consensus meetings) | • Physicians may not have time to complete SCP |
• Patient activation achieved through peer support, navigation, and advocacy training • Culturally and linguistically appropriate SCP |
| Baseman et al. (2017) | Rural |
n = 11 (6 survivors, 4 primary care providers, 1 oncologist) Breast |
Mobile phone app (SmartSurvivor)and website • Care team • Treatment summary (diagnosis, radiation treatment summaries, etc.) • Follow-up care (e.g., ongoing toxicities to track, wellness/concerns, recommended follow-up schedule/frequency, etc.) • Tracking tool for self-monitoring |
Feasibility and acceptability of SCP as mHealth app (SmartSurvivor) | Qualitative; think aloud |
• Having a paper-based SCP • Concerns about interoperability • Health literacy among rural survivors • Primary care providers noted survivors rarely bring their entire paper SCP upon transition. They carried a subset of the pages occasionally • Patients in rural areas experience unique challenges in survivorship care planning • Lower health literacy among rural patients also presents a barrier to SCP • Data in apps may exist in silos and may not communicate with EHR or clinical data • Data quality of information on the app based on whether entry by hand or through EHR |
• One location for all information • Journaling and associated reports feature for symptom tracking • Graphical representation of symptom tracking for seeing trends and patterns and communication with providers • Providers find graphs can be used as an aid in clinical decision-making and save time • Portability • mHealth may help patients in rural areas address challenges with SCP; however, unique needs may need to be addressed • Interoperability of mHealth app with other apps that track diet and exercise may address challenges related to data silos • Timing of reminders/notifications reminders valued when under 3 years post-treatment • Recalibration feature for missed appointments to accommodate rural survivors’ transportation issues • Using photos, visual cues, and simplified language to address the needs of rural survivors • Simplified data entry to record symptoms for tracking, auto-capture of date and time |
| Burke et al. (2016) |
Safety-net Minority |
n = 38 Breast |
No specific SCP discussed |
Informational and structural challenges to treatment and survivorship care for safety-net breast cancer patients Inform content and delivery of SCPs |
Qualitative; focus groups |
• Lack of provider buy-in • Lack of reimbursement • Women wanted SCP delivered at the transition point (e.g., during treatment, between active treatment and survivorship, subsequent points when needed) |
• Review of the SCP in person with a provider • SCP should have information in lay language in English • Incorporating perspectives of ethnically and linguistically diverse patients may help with SCP |
| DeGuzman et al. (2017) |
Rural Low income |
n = 28 Breast |
No specific SCP discussed |
Post-treatment survivorship care planning execution Perceptions and needs of rural, low-income cancer survivors |
Qualitative; semi-structured interviews |
• None of the participants were aware of SCPs • Delivery of the SCP during the final treatment appointment was inadequate for knowledge retention • Rural survivors’ responses reflected a lack of knowledge about post-treatment care, including how to assess for cancer recurrence • Lack of time to discuss SCPs, especially with rural patients • Cost may be a barrier for rural patients to commute to care sites • Mode of delivery (pile of papers) • Lack of information on nonmedical supportive care needs • Lack of information on changes related to reconstructive surgery |
• Avoid discussing SCP plans in the final treatment to improve retention • Telemedicine may potentially help rural patients connect with providers and should be considered • Additional provider types such as oncology nurses may also address unmet needs among underserved populations |
| Duggan et al. (2023) | Rural |
n = 72 Breast, prostate, colorectal, lymphoma |
SCP with coaching from a lay health educator (intervention) SCP alone (control) |
Health literacy; self-efficacy; quality of life | Mixed; RCT; semi-structured interviews |
• Nearly half (48.4%) of the intervention arm found the coaching from a lay health educator was useful • SCP was more useful to those with low literacy and less integrated care |
|
| Isaacson et al. (2018) | Rural |
n = 5 (1 administrator, 4 nursing leaders) Not specified |
Health system A Individualized SCP prepared through Microsoft Word-friendly EHR Health system B EHR-integrated SCP templates that can be completed for individual patients on an ongoing basis |
SCP development and implementation at two large rural health systems | Qualitative; interviews |
• One health system recognized inefficiencies with SCP templates and developed in-house system • Other health systems EHR vendor did not support SCPs • Operability with the EHR system was identified as a challenging aspect • Automatic population of fields on SCPs • Time and cost of implementing SCPs • Type of cancer influences if the patient amenable for SCPs • Difficulty assessing SCP status for patients seeing providers who are not affiliated with health system but perform surgery at health system facility |
• Standardization of SCPs sent to PCPs as they receive SCPs from different organizations |
| Klemp et al. (2022) | Rural |
n = 57 providers for phase 1 n = 90 for phase 2 Not specified |
No specific SCP evaluated | PCP perspectives on survivorship care | Mixed; focus groups; single-arm study |
• PCP teams reported rarely or never receiving SCP from oncology providers • PCPs did not have a formal process to identify cancer survivors within their practice • Were unaware of how to access resources for cancer survivors • Lack of EHR integration |
• 1 to 2 pages with specific recommendations from oncologists |
| Kantsiper et al. (2009) | African American |
n = 52 (21 survivors, 4 AA survivors, 15 PCPs, 16 oncology specialists) Breast |
No specific SCPs evaluated | Needs and priorities of breast cancer survivors, oncology specialists, and PCPs | Qualitative; focus groups | • PCPs voiced concerns for SCPs that individual plans would need to be periodically updated by oncologists as guidelines changed |
• Written SCP shared with other providers • Periodic updates to SCPs by oncologists as guidelines changed |
| Ko et al. (2023) | Latina |
n = 18 Breast |
Culturally matched navigators and oncology nurses explaining SCP Reviewing personalized SCP Coaching and modeling proactive behaviors using a video Psychosocial needs counseling Booster telephone call a month later |
Feasibility (recruitment, retention, completion of baseline assessment, completion of intervention, completion of post-intervention assessment, self-reported use of SCP with healthcare provider, self-reported sharing of SCP with family) and acceptability of Proyecto Mariposa Knowledge of survivorship issues Survivorship concerns Self-efficacy in patient-provider interaction Self-efficacy to manage chronic disease |
Mixed; single-arm study; semi-structured interviews |
• Survivors appreciated the information in the SCP but also recognized in-person sessions facilitated better understanding of the SCP • Non-physician staff implementing the program • Language-concordant, culturally tailored SCP • Individually tailored SCP • Video format |
|
| Lyson et al. (2021) | Vulnerable groups |
n = 16 (SCPs from different healthcare settings) Breast and colorectal cancer |
Multiple different SCPs SCPs from health systems treating vulnerable groups 16 SCPs examined |
Extent to which SCPs captured the elements recommended by the IOM Assess overall communication appropriateness for adult patients (readability and cultural appropriateness) |
Mixed; suitability assessment of materials |
• None of the SCPs were completely IOM concordant • Number of IOM recommended components in the SCP varied by type of healthcare setting • None of the SCPs included whether nutritional, psychosocial, and other supportive services were provided but mentioned the potential need for them • Mean reading grade was 14 • Key information like information on recurrence, future screening, and cancer care key contact missing in some SCPs • No tailoring for any populations besides non-Hispanic Whites • Communication appropriateness also varied by setting (reading level and cultural appropriateness) |
• Resources and staff time availability to develop SCPs • Co-designing SCPs with diverse patient populations • Develop Tailored ASCO or Journey Forward SCPs from national organizations to address limited time and resource limitations |
| Nápoles et al. (2019) | Spanish-speaking Latina |
n = 23 Non-metastatic breast cancer |
Bilingual SCP, Spanish-language app trackC with integrated activity trackers ASCO SCP template for Spanish speakers |
Cancer-related fatigue and cancer-related distress Global knowledge of survivorship care Self-efficacy Emotional well-being and somatic symptoms Average daily steps Perceived usefulness of intervention components Perceived ease of use Perceived benefits |
Mixed; single-arm study; semi-structured interviews | • Technical issues with app |
• Experience with mobile phones • Customization of app information based on hormone status • Low literacy, experience with mobile phones, and vision impairments were challenges • Assistance for survivors with limited mobile phone experience • mHealth can be adapted for auditory and visual impairments and low literacy • Supplemental coaching or individualized assistance on using mobile phones • For medically underserved populations mHealth alone is inadequate. Personal and intensive delivery of intervention needed |
| Psihogios et al. (2021) | Minority |
n = 110 Leukemia/lymphoma, solid tumor, brain tumor |
Electronic SCP within an app. The app also provides two-way, tailored mobile messages to reinforce and enhance uptake of SCP |
Engagement: percentage of active app days, percentage of mobile messages read, SCP views Acceptability: ease of use, perceived usefulness, engagement barriers, facilitators |
Quantitative; RCT | • Primary engagement barriers identified were technical glitches (e.g., app crashing, malfunctioning notifications) and competing priorities (e.g., work, college) |
• Embedding SCP in an app • Uninterrupted app access • iPhone use • Receiving messages in summer months compared to non-summer months • Certain types of messages such as health goal messages and trivia questions facilitated engagement with the app • Lower depression, higher motivation, and better health perception had a higher percentage of active app days |
| Stewart et al. (2022) | Rural | n = 107 (clinicians working in primary care networks; 35% were in rural practices) |
Re-engineered EHR-based SCP template Assess primary care clinician-perceived usefulness of the re-engineered template |
Clinician satisfaction Perceived usefulness |
Quantitative; cross-sectional |
• Lack of EHR integration and access location • SCP length precludes quickly referencing in a clinical setting |
• Bulleted list or summary section at the beginning of the SCP • SCP found within the problem list in EHR or another specific area |
| Tawfik et al. (2021) |
Rural Low-income Minority |
n = 283 Breast, gynecological, prostate, colorectal, lymphoma |
SCP templates based on ASCO and SGO templates SCPs were delivered electronically and integrated with the EHR SCPs were also faxed or mailed |
Time points: time from cancer diagnosis to SCP ordered, SCP ordered to SCP created, SCP created to hardcopy SCP delivered to patient by provider, and rate and route of delivery of SCPs to PCPs Receipt and integration of SCPs by PCPs |
Quantitative; cross-sectional |
• Lack of technology to access SCPs on CD, unaware of secure fax • SCP associated with the date of cancer diagnosis and therefore behind other documents in EHR and difficult to locate |
|
| Tevaarwerk et al. (2022) | Rural |
n = 13 (clinicians) Not specified |
EHR-based SCP template Assessed preferences for SCP elements |
SCP information needs and preferences Usefulness of 16 SCP elements |
Mixed; cross-sectional; interviews |
• Primary care providers noted significant effort required to extract information from SCP to transfer to patient record • Lack of interoperability across EHR vendor systems • Lack of automatic pagination in the EHR to allow for the document to be faxable • Paper SCP |
• Automated, integrated communication with updates pushed from oncology EHR to primary care EHR |
| Trosman et al. (2021) | Safety net hospitals (5/10 safety net institutions) |
n = 888 (422 in the intervention cohort, 466 in the historical cohort) Breast |
A structured care plan including cancer summary, care checklist, timing, and sequence of interdependent care |
Usefulness of Care Sequence, a structured care plan including cancer summary, care checklist, timing, and sequence of interdependent care Patient self-management (know the stage of cancer, care plan clear or very clear, timing and sequence of care clear, seldom or never overwhelmed, not in control of care, able to manage and organize care well or very well, able to explain care to others well or very well, able to express preferences in care well or very well) Care delivery metrics (PCP consult, genetic consult, smoking cessation initiation, dental consult, fertility consult, flu vaccination) |
Quantitative; cohort study |
• Having key information on one sheet • Provision of structure to stay focused on the task • Ability to see a timeline and how long things will take • Proactively getting answers to questions • 47.2% preferred paper format • 40.3% preferred paper format with an electronic copy (6.6% preferred electronic copy) |