TABLE 2.
Survivorship Care Plan Content-focused Studies (n= 14)
Evidence level | Primary author, year | Data collection/methods | Sample and setting | Intervention | Results (data) | Conclusions |
---|---|---|---|---|---|---|
4 | Ashing-Giwa, 2013 | Focus groups | 25 African-American BCS and 3 advocates: ages 32–79, 60% ≥ 5 years post diagnosis | ASCO SCP Template | African-American BCS believed that increased mortality may be due to comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP document all comorbidities and medications; allow PCP to participate; and make referrals to providers familiar with treating African-American BCS, who note the importance of spirituality and disproportionately high levels of socioecological stress. | Current SCP lacked cultural responsiveness and patient-centeredness. |
4 | Baravelli, 2009 | Survey and interviews | 20 survivors, ages 31–81, completed the survey regarding survivorship experiences; 14 PCP participated in interviews; 12 survivors reviewed a sample SCP; 95 health care professionals completed the survey regarding SCP elements. | SCP with ASCO colorectal cancer flow sheet | Participants expressed strong support for SCP use but had differing opinions on content and when to deliver SCP. | SCP concept endorsed but survivors and nurses wanted more supportive care and psychosocial elements included in SCP than PCP. |
4 | Burg, et al. 2009 | Focus groups | Purposive sampling 32 BCS from Sister’s Network: 29 African-American, 1 Hispanic, 2 white | ASCO SCP template | Survivors were dissatisfied with the amount of information they received on cancer-related side-effects, including race-specific information. | SCP were viewed as important but ASCO template too technical and limited in information on side-effects and self-care approaches. |
4 | Haq, 2013 | Focus groups and interviews | Purposive sampling of 61 BCS (mean age 55.5), family physicians and oncologists | SCP | In the first study phase, BCS indicated that both web- and paper-based SCP with human resources components were desirable and described their evolving needs throughout their cancer journey; family physicians indicated that they needed key information in a user-friendly format. | BCS and family physicians felt Participants thought that the SCP developed in the study’s second phase was an improvement over the standard of care. |
4 | Hewitt, 2007 | Focus groups and interviews | 3 focus groups of survivors; 3 focus groups with 34 oncology nurses; 2 focus groups of PCP; 20 interviews with oncologists | SCP | Survivors expressed support for SCP. PCP indicated that SCP would help with follow-up care. Nurses suggested that they could play a key role in developing and delivering SCP, whereas physicians recognized the value of SCP but were unwilling to assist in their use due to time constraints. | Endorsed SCP concept but identified barriers that might interfere with implementation. |
4 | Hill-Kayser, 2009 | Survey | 3343 survivors: median age at cancer diagnosis: 48 years (range: 18–100+); median current age: 51 years (range: 18–100+); 71% women; 86% white; 78% college-educated; 2% reported more than one cancer diagnosis. 1880 users completed OncoLife surveys; of these, 64% were survivors (64.2%, n = 1198); 25% were health care providers; and 12% were friends/family members of survivors. 150 users completed satisfaction surveys; of these, 57% were survivors or family members/friends of survivors; 43% were health care providers. | OncoLife, an Internet-based SCP tool | Ninety-eight percent of health care providers rated their experience using OncoLife as “good” to “excellent”; 95% survivors/friends/family members rated their experience “good” to “excellent.” | Participants were satisfied with an online self-developed SCP. |
4 | Hill-Kayser, 2012 | Survey | Between May 2007 and October 2009, 8717 SCP were created. Forty-eight percent were for BCS, mean age at diagnosis: 48.5 (range: 18–85); mean current age: 51.6 years (range: 19–89); mean time since diagnosis: 3 years (range <1–39); 89% white; 83% attended at least some college. | OncoLife, an Internet-based SCP tool | Fifty-eight percent of users reported finding the amount of information presented in SCP to be “just right”; 6% found it to be too much; 24% found it to be too little. | Participants satisfied with content in self-developed online SCP. |
2 | Jefford, 2011 | Survey and interviews | Ten CCS survivors within a year of completing treatment | SurvivorCare intervention included booklet; DV; question prompt list; SCP; end-of-treatment nurse visit; and 3 follow-up phone calls | CCS felt intervention package was useful, relevant and convenient. SCP took 1–1.5 hours to complete. | SCP as a component of SurvivorCare was well received. |
4 | Kantsiper, 2009 | Focus groups | Twenty-one survivors in 5 groups, 15 PCP in 2 groups, and 16 oncology specialists in 2 groups. One survivor group consisted of four African-Americans. | SCP | Survivors form intense relationships with specialists and rely on them for reassurance and expertise. Many believed PCP lacked necessary oncology expertise. Survivors reported psychosocial and communication issues. African-Americans cited concerns about access to care and clinical trials, as well as taboos to discussing cancer. Specialists reported that they struggle with discharging survivors due to protective relationships. PCP were concerned about time and training to provide survivorship care and communication problems with oncologists. Written SCP were regarded by all groups as possibly helpful but insufficient to ease the transition. | BCS may experience difficulties transitioning to survivorship, including ongoing psychosocial issues. African-American survivors may face additional and unique barriers to successful survivorship. Oncology specialists may have concerns about discharging cherished survivors. |
4 | Marbach & Griffie, 2011 | Focus groups | Forty survivors in 4 groups | SCP | Want written treatment plan and SCP. Wanted SCP in writing and delivered in person. Would trust nursing staff to provide SCP. | Endorsed SCP concept, especially need for written surveillance for late effects. |
4 | Mayer, 2012 | Focus groups and interviews | 4 focus groups of 29 survivors; 5 PCP interviews | 5 SCP templates | No survivor had received SCP but endorsed content and preferred JourneyForward template; providers wanted an abbreviated version. | SCP are necessary but not sufficient to address needs during transition in care. |
4 | Smith, 2011a | Focus groups | 26 BCS in 5 groups, ages 45–80. | SCP | BCS indicated preferences for the inclusion of a TS, information on nutrition/exercise, expected side effects, signs and symptoms of recurrence, recommended follow-up schedule, information sent to PCP, and updates on changes in SCP. BCS preferred individualized content based on physical and psychosocial effects. Rural BCS preferred electronic formats. | SCP core elements would be helpful but also need ability to individualize content. |
4 | Smith, 2011b | Survey | 577 PCP | SCP | PCP wanted diagnosis, TS and recommended surveillance in discharge letter from oncologists. | PCP satisfied with discharge letter that included treatment summary and surveillance plan. |
4 | Shalom, 2011 | Interviews | 15 PCP who had received at least 1 SCP | SCP | PCP felt more confident and better prepared after reading SCP in delivering care and 8/15 changed care as a result. | SCP valued by PCP who felt more confident in care delivery. |
Abbreviations: ASCO, American Society of Clinical Oncology; BCS, breast cancer survivor; CCS, colorectal cancer survivor; IOM, Institute of Medicine; NCI, National Cancer Institute; PCP, primary care provider; RCT, randomized controlled trial; SCP, survivorship care plan; TS, treatment summary