Table 3.

Needs and preferences of survivorship care plans (n = 18)

Authors	Underserved population	Sample and cancer type	SCP details	Outcomes	Study design	Key findings
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	Content: Areas of information deficits: • Side effects • Access to mental health services needed Format: • Survivors also find that there is a lot of information and paper • Survivors reported access and comfort of use with telehealth (clinician and survivor reports conflicted regarding telehealth access)
Arana-Chicas et al. (2023)	Rural	n = 27 Solid tumors	Not available	Needs of older rural cancer survivors	Qualitative; semi-structured interviews	Content: Areas of information deficits: • Side effects • Guidance on diet and exercise • Referrals to support groups SCP preferences: • 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)	Participants felt they would benefit from a well-organized document such as an SCP Content: Areas of information deficits • Health history • Comorbidity • Health promotion • Functioning • Genetic testing • Recurrences • Symptom management • Management of lifestyle factors like nutrition and physical activity (relevant to AAs) • Spiritual care referrals and resources • Informational, medical, and supportive care resources • Sexual side effects • Referrals to culturally competent providers Format: • Cover page highlighting the relevance of SCP • Usability can be improved by having more space between items • Readability can be improved by enlarging the text • Space should be provided for documenting recurrences • Space to note which treatment regimens worked • Section to note referrals with specialists
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 The Treatment Summary and Survivorship Care Plan (TSSCP-S)	Mixed; cross-sectional; community-based participatory research (consensus meetings)	TSSCP-S was found to be patient-user-friendly and easy to understand The tailored SCP achieved clinical, cultural, linguistic, and social responsiveness SCP preferences: Survivors received the following favorably: • Bilingual (Spanish and English) • Amount and quality of detail Content: Areas of information deficits: • Cultural values (familism, trust, respect) • Social practices (spirituality, family support) • Nutrition and physical activity guidelines • Supportive care resources • Health advisories • Health-related quality of life (HRQoL) • Survivorship resources that do not need Internet access • Introduction and narrative for PCPs and survivors Format: • Spanish language translation adjacent to English text • Images • Preference for print 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	Further tailoring desired for rural survivors regarding readability Format: • Survivors did not want paper SCPs Content: • Providers found the reminders function useful if the reminders could be recalibrated easily in case of missed appointments particularly for rural survivors • Providers thought background information would be helpful in deciding if routine appointments could be done locally than with specialists who were far away SCP aids: Providers recommended: • Photos • Visual cues • Simplified language for patient education material on the SCP
Burg et al. (2009)	African American	n = 32 Breast	ASCO SCP template • Breast cancer adjuvant treatment summary • Breast cancer survivorship care plan • Recommendations for follow-up care (e.g., medical history and physical examination, post-treatment mammography, breast self-examination, pelvic examination, coordination of care and genetic counseling referral) • Follow-up frequency list of symptoms of recurrence	Types of survivorship information received Opinions on value and content of SCPs	Qualitative; focus groups	Participants believed all survivors should receive SCPs Content: Areas of information deficits: • Care • Follow-up • Side-effects • Nutrition • Exercise • Resources for information and support Concerns with SCPs included: • Treatment summary contains a lot of medical jargon • Generic information on surveillance • Information should be discussed with a healthcare professional
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 Preferences for content and delivery of SCPs	Qualitative; focus groups	Timing and delivery: Survivors wanted SCP delivered at transition points: • During treatment • Between active treatment and survivorship • Subsequent points when needed Content: Areas of information deficits: • Incorporating information specific to hereditary breast cancer as part of SCPs • Information on how to talk to family about living with cancer • Referrals to PCPs, who are knowledgeable about breast cancer and side effects • Screening • Recurrence • Side effects and pain • Lymphedema • Reconstruction • Healthy eating/physical activity
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 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)	All participants received the photonovela positively Timing and delivery: • Best time for receiving SCP information was remission not diagnosis Format: • Highlighting components of an SCP SCP aids: • All liked the peer explanation of an SCP
DeGuzman et al. (2017)	Rural, low-income	n = 28 Breast	No specific SCP discussed	Post-treatment survivorship care planning execution Perception and needs of rural, low-income cancer survivors	Qualitative; semi-structured interviews	None of the participants was aware of SCPs Rural survivors’ responses reflected a lack of knowledge about post-treatment care, including how to assess for cancer recurrence Format: • Survivors reported receiving packets but not using them Content: Areas of information deficits • Non-medical supportive care needs • Changes related to reconstructive surgery Timing and delivery: • Timing of SCP discussion is critical. Final treatment appointment may not be ideal for retention (for rural patients)
Ko et al. (2020)	Latina	n = 44 (40 focus group participants, 4 interview participants; breast cancer survivors, family caregivers, nurses, medical assistants, social work patient navigators, physicians) Breast	No specific SCPs evaluated	SCP and SCP aid needs and preferences	Qualitative; community-based participatory research	Format: • Paper SCP SCP aid preferences: • Animated video • Patient navigators to provide educational information in SCP
Ko et al. (2021)	Black	n = 53 Breast	No specific SCPs evaluated	Needs and experiences	Qualitative; focus groups	Content: Areas of information deficits: • Some side effects interfered with quality of life more than others • Recurrence • Body image challenges • Financial toxicity and the financial strain of treatment • Spirituality helped in coping • Symptoms • Medication side effects like weight gain and fertility • Diet and physical activity that is culturally tailored Format: • Preference for video material over reading material
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 SCP aids: • In-person sessions facilitated better understanding of the SCP • Video increased comprehension, interest, and attention to message
Nápoles et al. (2019)	Spanish-speaking Latina	n = 23 Non-metastatic breast cancer	Spanish-language mobile app (trackC) • Women’s breast cancer diagnostic and treatment history • Information on potential side effects • Healthy lifestyles • Survivorship resources	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	Content: Survivors appreciated: • Information on disease • Ability to track Format: • Survivors preferred SCP in both written and app format SCP aids: • Motivation from check-ins with a coach • Appreciated tailoring by coach • Appreciated visual and auditory feedback on the app (like applause on achieving a health goal)
Rutledge et al. (2017)	Rural Minority	n = 53 (survivors and PCPs) Endometrial	No specific SCPs evaluated	Insights on transitioning to primary care from oncology Content and format of SCPs	Qualitative; focus groups	Survivors and providers supported the use of individualized SCPs Format: • Providers preferred SCPs in paper and electronic format • Ability to share with all care team members Content: Areas of information deficits: • Information on exercise and nutrition • More information on transitioning to primary care
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; semi-structured interviews	Content: • Recommended cancer-related screening • Preventative screening impacted by cancer/treatment • Timeline for recurrence risk • Prioritizing follow-up care over treatment summaries • Removing or down-playing screening recommendations not cancer-related • Annual updates • Information on lifestyle and psychosocial resources was considered less useful • Vaccination recommendations • Genetic testing • Stating “not recommended” for unnecessary screening to validate PCPs’ decisions Format: • Single SCP for patients and clinicians • Electronic format Layout/design • Labeling of SCP sections with survivor name and “survivorship care plan” • Addition of date created field below headers to facilitate determining outdatedness • Clearly labeling cancer diagnosis as early as possible • Moving abbreviated clinical contact information to the front along with provider-to-provider communication • Direct links from treatment information to supporting documents
Tisnado et al. (2016)	Latina	n = 74 Breast	No specific SCPs evaluated	Knowledge, attitudes, and beliefs regarding survivorship care Experiences with survivorship care activities	Qualitative; focus groups	• All participants expressed a desire for a formalized SCP • The few women who received an SCP were treated at high-resource cancer centers • Most of these women received follow-up care plans rather than treatment summaries
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 Patient self-management (know 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	SCP aids: Patients reported components of Care Sequences as useful • Time/sequence graph (69.2%) • Responsibilities (85.2%) Format: • 47.2% preferred paper format • 40.3% preferred paper format with an electronic copy (6.6% preferred electronic copy) • Having key information on one sheet
Wen et al. (2014)	Minority	n = 16 Breast	No specific SCPs evaluated	Chinese American breast cancer survivors’ perceptions of SCPs Preferences for content and format of SCPs	Qualitative; semi-structured interviews	All participants noted that an individualized SCP would be useful Content: Survivors appreciate these elements as useful: • Diagnosis • Treatment summary • Information on recurrence • Side effects • Lifestyle Areas of information deficits: • Traditional Chinese medicine • Culturally relevant lifestyle recommendations Format: • Information in lay language, both in Chinese and English • Preference for written SCP SCP aids: • In-person review of SCP with provider • Cultural differences influence provider-patient communication • Survivors in this study reported using family members as translators (role of professional interpreters)