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. 2024 Jun 22;19(6):1956–1994. doi: 10.1007/s11764-024-01609-z

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