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

Nicolaije, Kim A.H.; Ezendam, Nicole P. M.; Vos, M. Caroline; Pijnenborg, Johanna M.A.; Boll, Dorry; Boss, Erik A.; Hermans, R; Engelhart, Karin C.M.; Haartsen, Joke E.; Pijlman, Brenda; Loon-Baelemans, Ingrid E.A.M. van; Mertens, H; Nolting, Willem E.; Beek, Johannes J. van; Roukema, Jan A.; Zijlstra, Wobbe P.; Kruitwagen, Roy F.P.M.; Poll‐Franse, Lonneke V. van de

doi:10.1200/jco.2014.60.3399

Cited by 109 publications

(137 citation statements)

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“…First of all, there is no substantial evidence of a benefit of SCPs. Except for the first positive impact on patient outcomes in the recently published small POSTCARE trial [9], no differences in satisfaction with information provision [8], satisfaction with care [10][11][12], distress [12], and quality of life [12] have been found between patients who did or did not receive an SCP. Second, at this point, no definitive statements can be made about the potential negative consequences of SCPs.…”

Section: Experiences Of Survivorship Care Plan Use Among Primary Carementioning

confidence: 97%

“…However, there were no differences regarding satisfaction with the received information or care. In addition, patients in the SCP care arm experienced more symptoms, were more concerned about their illness, more affected emotionally, and reported more cancer-related contact with their PCP than patients in the usual care arm [8]. A secondary analyses evaluated the impact of an automatically generated paper SCP in patients who searched for disease-related information on the internet and those who did not [14].…”

Section: Impact Of Survivorship Care Plans On Patient-reported Outcomesmentioning

confidence: 99%

“…If an SCP consists of all components recommended by the IOM, thus containing both a treatment summary and a follow-up care plan it could be up to 20 pages long, depending on a patient's specific situation. However, providing this amount of information, particularly on possible side effects and recurrence of the cancer, may also cause distress in some patients [8]. A study that assessed the effectiveness of a one-page SCP among Hodgkin lymphoma survivors, found that 91% of the patients were positive about the SCP, and that the SCP did not increase patients' tension and anxiety [28].…”

Section: Survivorship Care Plan Content and Lengthmentioning

confidence: 99%

“…In this current perspective we aim to further the field of SCP care by bringing focus in these areas for future research. Based our own experience of barriers and facilitators in implementing SCP care in the pragmatic cluster randomized ROGY Care trial [8], Mayer's review outcomes, and new evidence from the recently published POSTCARE trial [9] we suggest which specific aspects of SCP content and dissemination deserve further investigation. We discuss highest level evidence studies when possible, meaning that we only discuss results of randomized controlled trials (RCTs) if available, and only include outcomes of level II or III evidence studies if RCTs are not available.…”

mentioning

confidence: 99%

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

2017

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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 selfmanagement may be an important way forward in SCP delivery. Whether this is beneficial and costeffective on the long term and among different groups of cancer survivors needs further investigation.

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Section: Experiences Of Survivorship Care Plan Use Among Primary Carementioning

confidence: 97%

Section: Impact Of Survivorship Care Plans On Patient-reported Outcomesmentioning

confidence: 99%

Section: Survivorship Care Plan Content and Lengthmentioning

confidence: 99%

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confidence: 99%

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

2017

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“…[1][2][3][4] To date, research on SCPs has been largely empirical and inconclusive regarding whether the use of standardized SCPs improves patient outcomes. [5][6][7][8] The limited research demonstrating SCP efficacy may relate in part to standardized SCPs' failure to be tailored to patient specific information and care needs during care transition. [9][10][11] To enhance survivorship care planning, SCPs, as part of routine care, may create a channel for distributing interventions to patients to improve their symptom self-management and other outcomes.…”

Section: Introductionmentioning

confidence: 99%

Enhancing Survivorship Care Planning for Patients With Localized Prostate Cancer Using a Couple-Focused mHealth Symptom Self-Management Program: Protocol for a Feasibility Study (Preprint)

Song¹,

Dunlap²,

Tan³

et al. 2017

Preprint

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This project explores a new model of care that enhances survivorship care planning and promotes health for men with localized prostate cancer transitioning to post-treatment selfmanagement. Survivorship care planning is important for patients with prostate cancer because of its high incidence rate in the U.S., the frequent occurrence of treatment-related side effects, and reduced quality of life for both men and their partners. A key component of comprehensive survivorship care planning is survivorship care plans (SCPs), documents that summarize cancer diagnosis, treatment, and plans for follow-up care. However, research concerning the effectiveness of survivorship care plans (SCPs) on patient outcomes or health service use has thus far been inconclusive. SCPs that are tailored to individual patients' needs for information and care may improve effectiveness. In this study, we will examine the feasibility of an Enhanced Survivorship Care Plan (ESCP) that integrates a symptom self-management mHealth program called Prostate Cancer Education and Resources for Couples (PERC) into the existing standardized SCP. We will use a two-group randomized controlled pretest-posttest design and collect data at baseline (T1) and 4 months later (T2) among 50 patients completing initial treatment for localized prostate cancer and their partners. The specific aims are: Aim 1: Examine the feasibility of delivering ESCPs (as assessed by recruitment, enrollment, and retention rates, program satisfaction with the ESCP, and perceived ease of use of the ESCP). We will use mixed methods to achieve this aim. Aim 2: Estimate the magnitude of benefit of ESCPs. We hypothesize that, compared with the standardized SCP users, the ESCP users will report: (1) greater improvement in their primary outcomes of quality of life (overall, physical, emotional, and social quality of life); (2) greater improvement in secondary outcomes (reduction in negative appraisals and improvement in self-efficacy, social support, and health behaviors to manage symptoms); and (3) fewer visits to post-treatment care services from T1 (baseline) to T2 (four-month followup). The results from this study will help design a definitive randomized trial to test the efficacy of the ESCPs.

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Patient Experience Captured by Quality-of-Life Measurement in Oncology Clinical Trials

et al. 2020

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IMPORTANCE Quality of life (QoL) is an important consideration in cancer medicine, especially because drugs are becoming more costly and may only result in modest gains in overall survival.However, there has been no descriptive analysis for the points at which QoL is measured in cancer trials.OBJECTIVE To estimate the prevalence of studies that measure QoL at different points and see how many studies measure QoL for the entirety of a patient's life. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional analysis includes all articles ononcology clinical trials in the 3 highest-impact oncology journals, published between July 2015 and June 2018, that reported QoL outcomes. MAIN OUTCOMES AND MEASURESData were abstracted on when QoL was assessed and the characteristics of these studies. RESULTSFor all 149 studies that met inclusion criteria, QoL assessment was high during treatment (104 articles [69.8%]), during follow-up (81 articles [54.4%]), and after the end of the intervention (68 articles [45.6%]). In 5 of the 149 studies (3.4%), QoL was assessed until death, including in only 1 of the 74 studies on metastatic or incurable cancers. Among these 5 studies, only 1 (20%) used a drug intervention, 1 (20%) used a behavioral intervention, and 2 (40%) used a radiation intervention; only 1 of 5 was in the metastatic setting. The number of studies that reported a positive QoL outcome (ie, QoL outcome was more favorable in the intervention group than in the control group) was between 42 of 81 articles (51.9%) and 16 of 28 articles (57.1%) for most QoL assessment points but only 1 of 5 articles (20%) for studies measuring QoL until death. CONCLUSIONS AND RELEVANCEThis study found that most clinical trials assessed QoL during the treatment or intervention and often during a given amount of follow-up but infrequently assessed QoL on disease progression and rarely followed QoL until the end of the patient's life. Most studies reporting QoL until the end of life reported worse QoL outcomes for the intervention group than the control group. Future research and policy recommendations should consider not just short-term QoL outcomes but QoL outcomes throughout the patient's cancer care. Question How often do oncology studies assess quality of life (QoL) throughout a patient's disease course? Findings This cross-sectional analysis of 149 oncology studies published in highimpact medical and oncology journals found that most studies (69.8%) assessed QoL during the intervention, whereas only 3.4% of studies assessed QoL until the time of death. Meaning These findings suggest that many oncology studies only assess QoL during the intervention; future research should consider the long-term outcomes throughout the patient's life.Oncology, and JAMA Oncology. For each of the journals, we searched for the term quality of life on the journal's website, and we limited the search to research articles only. Selected articles needed to (1) be an RCT, (2) have performed the analysis in the originally randomized groups, (3) have evaluated QoL in ...

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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

Cited by 109 publications

References 31 publications

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

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

Enhancing Survivorship Care Planning for Patients With Localized Prostate Cancer Using a Couple-Focused mHealth Symptom Self-Management Program: Protocol for a Feasibility Study (Preprint)

Patient Experience Captured by Quality-of-Life Measurement in Oncology Clinical Trials

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