The impact of cancer survivorship care plans on patient and health care provider outcomes: a current perspective

Background: To help the growing number of cancer survivors deal with the challenges of cancer survivorship, survivorship care plans (SCPs) were recommended by the Institute of Medicine (IOM) in 2006. The SCP is a formal document that contains both a tailored treatment summary and a follow-up care plan. Since the IOM recommendation 10 years ago, the implementation in daily clinical practice is minimal. Several studies have investigated the effects of SCPs on patient-reported outcomes and oncology and primary care providers (PCPs), but the quantity and quality of these studies are limited. Results: The first four randomized trials comparing SCP delivery with usual care failed to show a positive effect on satisfaction with information provision, satisfaction with care, distress or quality of life. SCPs did improve the amount of information provided and communication of PCPs with medical specialists and patients. A recent small trial that changed the focus from SCP as primarily an information delivery intervention to a behavioral intervention did observe positive effects on self-reported health, lower social role limitations and a trend towards greater self-efficacy. Gaps in knowledge about SCPs include uncertainty about content and length of the SCP; whether it should be delivered online or on paper; the timing and frequency of delivery; which health care provide should deliver SCP care. Finally, cost-effectiveness of SCP interventions has received limited attention. Conclusion: Currently, there is not enough evidence to warrant large-scale implementation of SCPs, or to abandon SCPs altogether. Emphasis on the SCP process and survivor engagement, supporting self-management may be an important way forward in SCP delivery. Whether this is beneficial and cost-effective on the long term and among different groups of cancer survivors needs further investigation

Oncology providers' evaluation of the use of an automatically generated cancer survivorship care plan: longitudinal results from the ROGY Care trial

Purpose Previous studies have merely investigated oncology providers’ a priori attitudes toward SCPs. The purpose of the current study was to longitudinally evaluate oncology providers’ expectations and actual experiences with the use of an automatically generated Survivorship Care Plan (SCP) in daily clinical practice. Methods Between April 2011 and October 2012, the participating oncology providers (i.e., gynecologists, gynecologic oncologists, oncology nurses) provided usual care or SCP care to 222 endometrial and 85 ovarian cancer patients included in the Registrationsystem Oncological GYnecology (ROGY) Care trial. All (n = 43) oncology providers in both arms were requested to complete a questionnaire before and after patient inclusion regarding their expectations and evaluation of SCP care. Results Before patient inclusion, 38 (88 %; 21 SCP, 17 usual care), and after patient inclusion, 35 (83 %; 20 SCP, 15 usual care) oncology providers returned the questionnaire. After patient inclusion, oncology providers were generally satisfied with the SCP (M = 7.1, SD = 1.3, with 1 = not at all–10 = very much) and motivated to keep using the SCP (M = 7.9, SD = 1.5). Most providers (64 %) encountered barriers. Twenty-five percent felt they used more time for consultations (M = 7.3 min, SD = 4.6). However, self-reported consultation time did not differ between before (M = 21.8 min, SD = 11.6) and after patient inclusion (M = 18.7, SD = 10.6; p = 0.22) or between SCP care (M = 18.5, SD = 10.3) and usual care (M = 22.0, SD = 12.2; p = 0.21). Conclusions Oncology providers using the SCP were generally satisfied and motivated to keep using the SCP. However, the findings of the current study suggest that even when the SCP can be generated automatically, oncology providers still have difficulties with finding the time to discuss the SCP with their patients. Implications for Cancer Survivors If SCP care is indeed effective, overcoming the perceived barriers is needed before large-scale implementation in order for cancer survivors to fully benefit from the potential advantages of SCPs. Keywords: Survivorship Care Plan, Cancer survivors, Oncology providers, Barriers, Implementation, ROGY Car

Factors influencing implementation of a survivorship care plan-a quantitative process evaluation of the ROGY Care trial

Contains fulltext : 170495.pdf (publisher's version ) (Open Access)PURPOSE: The aim of this study is to investigate the factors that influence implementation of Survivorship Care Plans (SCPs) in the intervention arm of the ROGY Care trial by (1) assessing the level of SCP receipt in the ROGY Care trial and (2) identifying patient- and provider-level factors that influence SCP receipt. METHODS: Between 2011 and 2015, a pragmatic cluster randomized-controlled-trial was conducted on the effects of automatically generated SCPs. Endometrial (N = 117) and ovarian (N = 61) cancer patients were allocated to 'SCP care', as provided by their SCP care providers (N = 10). Associations between SCP receipt (self-reported SCP receipt and actually generated SCPs), patient-factors (socio-demographic-, clinical-, and personality factors), and care provider factors (profession and a-priori motivation regarding SCP provision) were tested in univariate analysis. The odds ratios of factors influencing self-reported SCP receipt were estimated with a multivariate regression model. RESULTS: Of all patients in the SCP care arm (N = 178), SCPs were generated by the care provider for 90 % of the patients and 70 % of the patients reported that they had received an SCP. Patients with older age, ovarian cancer, type D (distressed) personality, and patients that completed the questionnaire a longer period of time after the SCP consult were more likely to report no SCP receipt. CONCLUSIONS: SCP receipt was influenced by patient- but not care-provider factors. IMPLICATIONS FOR CANCER SURVIVORS: Certain patient groups were less likely to report SCP receipt. Whether all patients are in need of an SCP, requires further investigation. If they do, more efforts need to be made towards the implementation of SCPs

Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet:Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial

Contains fulltext : 165728.pdf (publisher's version ) (Open Access)BACKGROUND: The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs. OBJECTIVE: The aim was to assess whether the effects of an automatically generated paper SCP on patients' satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use. METHODS: Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7%, 221/296), 6 months (n=158), and 12 months (n=147), including patients' satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer). RESULTS: In total, 80 of 221 (36.2%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than patients in the usual care arm did. In addition, although all stratified analyses were not significant, patients who did seek disease-related information on the Internet in the SCP care arm appeared to receive less information about their disease (mean 65.7, SD 23.4 vs mean 67.1, SD 20.7) and medical tests (mean 72.4, SD 23.5 vs mean 75.3, SD 21.6), did not find the information more helpful (mean 78.6, SD 21.2 vs mean 76.0, SD 22.0), and reported less understanding of their illness (mean 6.3, SD 2.8 vs mean 7.1, SD 2.7) than patients in the usual care arm did. CONCLUSIONS: Paper SCPs appear to improve the amount of information received about the disease and medical tests, the helpfulness of the information, and understanding of the illness for patients who do not search for disease-related information on the Internet. In contrast, paper SCPs do not seem beneficial for patients who do seek disease-related information on the Internet. TRIAL REGISTRATION: ClinicalTrials.gov NCT01185626; https://clinicaltrials.gov/ct2/show/NCT01185626 (Archived by WebCite at http://www.webcitation.org/6fpaMXsDn)

Survivorship care plans have a negative impact on long-term quality of life and anxiety through more threatening illness perceptions in gynecological cancer patients: the ROGY care trial

Contains fulltext : 191663.pdf (publisher's version ) (Open Access

Survivorship Care Plans to inform the primary care physician: results from the ROGY care pragmatic cluster randomized controlled trial

This study assesses the effect of sending a Survivorship Care Plan (SCP) to primary care physicians (PCP) on the communication of the PCP with the medical specialist and the patient and to describe PCPs' opinions regarding the SCP. In a pragmatic cluster randomized controlled trial conducted in 12 hospitals, the PCP of endometrial and ovarian cancer patients received usual information, while in addition the SCP-care arm received a copy of the patient's SCP. A questionnaire was returned by 266 PCPs (76 %). One third of the PCPs in the SCP-care arm indicated having received an SCP. PCPs in the SCP-care arm were more likely to have had personal contact with the medical specialist (52 vs. 37 %, p = 0.01) but were equally satisfied with the information as PCPs in the usual care arm (7.2 vs. 6.9 on a scale from 1 to 10, p = 0.25). Of all PCPs, 82 % indicated they would want to receive an SCP in the future. A quarter of the PCPs who received an SCP reported that the SCP supported contact with the patient. However, the SCP was found too long. Supplying an SCP to PCPs potentially has a positive effect on the communication between the PCP and the medical specialist. The SCP should be concise and focused on PCPs' needs, such as contact information and tailored information on patient diagnosis, treatment, and possible consequences. In the light of transition of cancer care to PCPs, survivors may benefit from improved information provision and communication

Impact of an Automatically Generated Cancer Survivorship Care Plan on Patient-Reported Outcomes in Routine Clinical Practice: Longitudinal Outcomes of a Pragmatic, Cluster Randomized Trial

Purpose This study was conducted to longitudinally assess the impact of an automatically generated survivorship care plan (SCP) on patient-reported outcomes in routine clinical practice. Primary outcomes were patient satisfaction with information and care. Secondary outcomes included illness perceptions and health care use. Methods Twelve hospitals were randomly assigned to SCP care or usual care in a pragmatic, cluster randomized trial. Newly diagnosed patients with endometrial cancer completed questionnaires after diagnosis (n = 221; 75% response), 6 months (n = 158), and 12 months (n = 147). An SCP application was built in the Web-based ROGY (Registration System Oncological Gynecology). By clicking the SCP button, a patient-tailored SCP was generated. Results In the SCP care arm, 74% of patients received an SCP. They reported receiving more information about their treatment (mean [M] = 57, standard deviation [SD] = 20 v M = 47, SD = 24; P = .03), other services (M = 35, SD = 22 v M = 25, SD = 22; P = .03), and different places of care (M = 27, SD = 25 v M = 23, SD = 26; P = .04) than the usual care arm (scales, 0 to 100). However, there were no differences regarding satisfaction with information or care. Patients in the SCP care arm experienced more symptoms (M = 3.3, SD = 2.0 v M = 2.6, SD = 1.6; P = .03), were more concerned about their illness (M = 4.4, SD = 2.3 v M = 3.9, SD = 2.1; P = .03), were more affected emotionally (M = 4.0, SD = 2.2 v M = 3.7, SD = 2.2; P = .046), and reported more cancer-related contact with their primary care physician (M = 1.8, SD = 2.0 v M = 1.1, SD = 0.9; P = .003) than those in the usual care arm (scale, 1 to 10). These effects did not differ over time. Conclusion The present trial showed no evidence of a benefit of SCPs on satisfaction with information and care. Furthermore, SCPs increased patients' concerns, emotional impact, experienced symptoms, and the amount of cancer-related contact with the primary care physician. Whether this may ultimately lead to more empowered patients should be investigated further