Table 1.
Benefits from survivorship care plans among underserved populations (n = 18)
| Authors | Underserved population | Sample and cancer type | SCP details | Outcomes | Study design | Key findings |
|---|---|---|---|---|---|---|
| Baseman et al. (2017) | Rural |
n = 11 (6 survivors, 4 primary care providers (experience in rural settings), 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 |
• One-stop shop; mHealth SCP supports coordination of care with specialists • Survivors and providers empowered by the tracking feature of SmarSurvivor • Providers said the report function saved time during a visit; the journaling feature supports improved patient-provider communication • Reminders/notifications/tips features were seen as useful for surveillance by both survivors and providers |
| Casillas et al. (2011) |
Low educational attainment Minority |
n = 376 Leukemia/lymphoma, bone and soft tissue sarcomas |
No specific SCPs evaluated |
Self-reported receipt of survivorship care planning Expectations from providers Confidence in managing survivorship care |
Quantitative; cross-sectional | • Ethnic minority survivors were associated with higher odds of reporting low confidence in managing survivorship care |
| Casillas et al. (2021) | Latino |
n = 103 (47 adolescents and young adults, 56 family members) Leukemia/lymphoma, brain/central nervous system, other solid tumors |
Photonovela survivorship story Actionable survivorship care planning tools Sample customizable SCP |
Assess the efficacy of photonovela intervention on the following: • Patient and family confidence in survivorship care management • Cancer stigma • Knowledge related to late effects and the need for consistent survivorship care |
Quantitative; single-arm trial |
• Increase in survivor and family member confidence in the management of survivorship care • Increase in family knowledge of late effects and issues related to survivorship care |
| Casillas et al. (2022) | Latino |
n = 34 (adolescents and young adults, 16 parents and family members) Leukemia, lymphoma, brain/central nervous system, bone, soft tissue |
Photonovela • Photonovela survivorship story • Actionable survivorship care planning tools • Sample customizable SCP |
Develop and test the acceptability of a culturally appropriate photonovela intervention to improve knowledge of, and the need to receive, survivorship care | Qualitative; community-partnered participatory research (RAND-Delphi method, focus groups) |
• SCP helps navigate the system • SCP is helpful for providers not familiar with cancer history • Survivors are comfortable meeting the providers alone without family if SCP available • All participants received the photonovela positively. They liked the peer explanation of an SCP |
| 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 |
• No change in accuracy or participant knowledge • Significant change in knowledge about the type of surgery received in the control group • No change in self-efficacy and health-related quality of life, significant change in self-efficacy among those in the intervention arm with marginal health literacy at baseline • 22% of participants discussed SCP with both PCP and oncologist • 61.8% and 48.4% in intervention and control, respectively, found SCP useful • Nearly half (48.4%) of the intervention arm found that the coaching from a lay health educator was useful Qualitative: • Varying experience with coordination of care • SCP was more useful to those with less integrated care and low literacy and well-integrated primary and tertiary care • Survivors found SCP useful to learn about side effects and screening |
| Greenlee et al. (2016) | Hispanic |
n = 126 Breast |
24-page National Cancer Institute guide called in English and Spanish—“Facing Forward: Life after Cancer Treatment” (intervention and control) Nurse-provided treatment summary and surveillance recommendations based on the ASCO guidelines (intervention) Nutritionist-provided personalized lifestyle recommendations based on nutrition and physical activity guidelines developed by the American Institute for Cancer Research and the American Cancer Society (intervention) |
Attitudes towards lifestyle behaviors Knowledge of lifestyle behaviors Frequency of lifestyle behaviors |
Quantitative; RCT |
• The intervention changed lifestyle behaviors and knowledge in the short-term, but the benefits did not persist • The intervention was more effective among non-Hispanics than among Hispanics in improving attitudes towards healthy eating and frequency of physical activity |
| Hershman et al. (2013) | Spanish-speaking Hispanic |
n = 126 Breast |
24-page National Cancer Institute guide called in English and Spanish—“Facing Forward: Life after Cancer Treatment” (intervention and control) Nurse-provided treatment summary and surveillance recommendations based on the ASCO guidelines (intervention) Nutritionist-provided personalized lifestyle recommendations based on nutrition and physical activity guidelines developed by the American Institute for Cancer Research and the American Cancer Society (intervention) |
Cancer worry Treatment satisfaction Cancer survivor concerns Depression Impact of cancer |
Quantitative; RCT |
• No significant improvements in patient-reported outcomes • Associated with decreased worry among cancer survivors • Hispanics had higher physical and functional well-being, worse scores on depression scales, and higher scores on worry than non-Hispanics • Hispanics had higher medical trust and higher value on social relationships than non-Hispanics |
| Kantsiper et al. (2009) | Black/African-American or minority |
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 |
• Survivors viewed an SCP to be shared between providers as valuable to their care coordination • However, it does not replace the active participation of oncology specialists • Oncologists felt that a written SCP or tool to be shared with other providers would be valuable |
| Kenzik et al. (2016) |
Low educational attainment Low income |
n = 441 (over 65 years) Breast, prostate, lung, colon/rectal, ovarian |
No specific SCPs evaluated Assessed receipt of written treatment summaries and follow-up care plans |
Self-efficacy ER visit Hospitalization |
Quantitative; cross-sectional |
• 40% received both written treatment summary and written follow-up plan • 79% of those who received written treatment summaries of follow-up plans received a verbal explanation • Female sex, belonging to minority race/ethnicity, having greater comorbidity were independently associated with self-efficacy (when assessing the relationship between written treatment summary, written follow-up plan, verbal explanation with self-efficacy) • Verbal explanation of follow-up plan associated with decreased healthcare utilization through higher self-efficacy |
| Ko et al. (2020) |
Latina Rural |
n = 44 (survivors transitioning to primary care (12), family caregivers (8), and healthcare providers (24) Breast |
No specific SCPs evaluated | Perspectives on challenges to survivorship care among survivors in the Mexico-US border region | Qualitative; community-based participatory research |
• SCP was perceived as useful • SCPs a good source of info to improve survivorship care • SCPs facilitate patient-provider communication • Providers noted SCP could enhance understanding of cancer diagnosis and medication management • SCPs help patients be proactive and aid in formulating questions for the visit • SCPs perceived as reducing psychological distress • SCPs aid in information retention • SCPs provide information to other providers out of state or country • SCPs improve care coordination between providers • SCPs useful for family caregivers |
| Kim et al. (2022) | Low educational attainment, unemployed |
n = 17,626 (respondents from BRFSS) Breast gynecologic, prostate, colon, lung, melanoma/other skin, others |
No specific SCPs evaluated |
Cancer pain Perceived discrimination Physical activity |
Quantitative; cross-sectional |
• Follow-up care plans positively associated with cancer pain • Treatment summary not associated with cancer pain • Physical activity and discrimination mediated the association between follow-up care plans and cancer pain • Survivors reporting higher discrimination tended to report less pain when receiving follow-up care plans |
| Ko et al. (2023) | Latina |
n = 18 Breast |
Culturally matched navigators and oncology nurses explaining SCP, reviewing personalized SCP, and coaching and modeling proactive behaviors using a video and 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) 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 |
• Almost all agreed SCP enabled them to be proactive • Changes in self-efficacy in managing chronic disease • Information provision—enhanced knowledge about cancer and survivorship care. Video and in-person explanation enhanced understanding • Patient proactiveness—SCP empowered to be proactive, SCP intervention improves family knowledge, intervention encouraged asking questions • Video increased comprehension, interest, and attention to messages |
| Lewis‐Thames, Marquita et al. (2020) | Rural |
n = 90 Not specified |
No specific SCPs evaluated |
Patient-provider communication quality Written communication Timely posttreatment follow-up |
Quantitative; cross-sectional | • Survivors receiving written communication had greater odds of reporting timely follow-up care |
| Maly et al. (2017) |
Low income Latina |
n = 212 Stage 0 to stage III breast cancer |
Individually tailored treatment summaries and survivorship care plans (TSSP) TSSP combined with nurse counseling sessions: • Nurse was trained, bilingual, bicultural • Reviewed components of TSSP |
Physician implementation of recommended breast cancer care Adherence to recommendations by patients at 12 months |
Quantitative; RCT |
• SCPs positively impacted physician implementation of recommended breast cancer care • Per subset analysis, Latina patients more likely to agree: ▪ SCP provides more information than its provider ▪ SCP provided information they had not found on their own ▪ Improved communication with their doctors |
| Nápoles et al. (2019) | Spanish-speaking Latina |
n = 23 Non-metastatic breast cancer |
ASCO SCP template Adapted for low-literacy, Spanish-speaking Latinas Layout simplified and translated to Spanish |
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 |
• Lower fatigue and health distress levels • Greater knowledge of recommended follow-up care and resources • Improvement in emotional well-being • Increased average daily step count • Positive attitudes towards the survivorship care planning program • Survivors reported benefits to knowledge, and well-being in interviews as well • Feeling of a sense of accountability • Shift from extrinsic to intrinsic motivation to be physically active |
| Shay et al. (2019) | Low educational attainment |
n = 1855 (respondents from BRFSS) Breast Cervical Colorectal Melanoma Prostate |
Paper SCP (written treatment summary and follow-up plan) Association of receipt of written SCPs with health behaviors |
Attending a recent medical appointment Exercise in the past month Non-smoking status Mammography in the past 2 years Up-to-date colorectal screening |
Quantitative; cross-sectional |
• 37% received written SCP • Receipt of SCP independently associated with attending medical appointments, exercise in the past month, non-smoking status, and mammography in the past 2 years • Receipt of SCP not associated with up-to-date colorectal screening |
| Stewart et al. (2022) | Rural | n = 107 (clinicians working in primary care networks; 35% were in rural practices) | Re-engineered sample care plan based on existing EHR-based SCP template |
Clinician satisfaction Perceived usefulness |
Quantitative; cross-sectional |
• Re-engineered SCP was found to be useful, relevant, easy to understand, and in appropriate order • Most participants reported the SCP included the information they wanted to know about their patient’s survivorship care and helped provide better care |
| 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 4R Oncology— patient-facing care planning Care Sequence Patient self-management (know the stage of cancer, clarity of care plan, 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 |
• Perceived as useful • Usefulness higher in safety-net than on-safety net patients • 5/7 self-management metrics greater in the intervention group (except able to explain care to others well or very well, able to express preferences in care well or very well) • Referrals to all six types of care were greater in the intervention cohort • Significantly higher referral completion was seen in 4 types of referrals in the intervention cohort • Patients reported components of Care Sequences as useful ▪ Time/sequence graph (69.2%) ▪ Responsibilities (85.2%) • Safety-net hospital patients were more likely to report Care Sequences as useful ▪ Had a greater sense of control and ability to manage their care ▪ Had lesser ability to explain their care when compared with non-safety-net |