Improving Pediatric Cancer Survivorship Care Through SurvivorLink (Georgia)

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Summary:

Major advances in pediatric cancer therapy are helping children with these diagnoses to live longer. Pediatric cancers and their treatment, however, predispose survivors to a higher risk of certain life-threatening and debilitating diseases, known as “late effects of cancer treatment.” Therefore, survivors need life-long medical monitoring and care. A number of barriers to this care have been identified including a lack of knowledge about late effects of cancer treatment and individualized risk for specific late effects, as well as a lack of availability of or knowledge about appropriate cancer survivor followup programs. There is thus a need to provide patients, their families, and their health care providers with knowledge and tools in order to ensure that these patients receive optimal care.        

This project built and evaluated SurvivorLink, an information technology (IT) system available via the Web. The system provides information on the life-long health care needs of childhood cancer survivors, with a goal of increasing awareness and knowledge among survivors, their families, and their care team. In addition, SurvivorLink promotes communication between these three groups through the use of an electronic personal health record maintained by the patient and shared with their providers.                      

The specific aims of this project were to:

  • Collect data on pediatric cancer survivors in SurvivorLink.
  • Facilitate the exchange of clinical information at key transitions. 
  • Provide patients with easy access to individualized educational materials and evidence-based late-effects screening recommendations.
  • Provide researchers with longitudinal information on incidence of late effects in pediatric cancer survivors.           

The project used a mixed-methods study design to assess the needs of clinicians, parents, and young survivors. This included structured interviews with providers; focus groups with parents and young adult cancer survivors; analysis of SurvivorLink system data and logs; and administration of participant surveys.

The study confirmed that there is insufficient knowledge regarding the importance of cancer survivorship care among survivors, their parents, and their health care providers. As participants were educated, registration to SurvivorLink increased, as did participant use of the site. It became evident during the study that refining education and recruitment strategies for the system are necessary. The project team plans to promote the use of SurvivorLink to primary care providers by utilizing current collaborations, IT expertise, and relationships with professional groups.

Improving Pediatric Cancer Survivorship Care through SurvivorLink - 2012

Summary Highlights

  • Principal Investigator: 
  • Organization: 
  • Funding Mechanism: 
    RFA: HS08-002: Ambulatory Safety and Quality Program: Improving Management of Individuals with Complex Healthcare Needs Through Health Information Technology (MCP)
  • Grant Number: 
    R18 HS 017831
  • Project Period: 
    September 2008 – September 2012
  • AHRQ Funding Amount: 
    $1,199,998
  • PDF Version: 
    (PDF, 297.54 KB)

Summary: As the number of cancer survivors increases, the need to educate primary care providers about the unique needs and care of these individuals has become more urgent. This is particularly true for childhood cancer survivors for whom cancer therapies, with overall cure rates of 75 to 80 percent, are highly successful. Yet high-quality individualized survivorship care is challenging due to: 1) multiple transitions in care among primary and specialty care providers; and 2) the lack of knowledge about survivor issues among providers, patients, and their families.

Dr. Mertens and her research team addressed these challenges by building the SurvivorLink system, a personal health record with the goals to improve pediatric cancer survivors’ transition to pediatric primary and specialty care, and increase patient, family, and provider knowledge about survivor issues. SurvivorLink is designed to store personal health documents, primarily the Survivor Healthcare Plan which includes a cancer treatment summary, individualized risk- and late-effects screening profiles, and other clinical information needed to provide high-quality long-term care to survivors. SurvivorLink also provides educational materials that improve awareness of survivorship issues and best practices in survivor care, including continuing medical education (CME) credits to providers who complete educational materials using the SurvivorLink Web site.

SurvivorLink had three target user groups: patients and their families; providers; and researchers. Participants for this pilot study were recruited through the five cancer treatment centers in the State of Georgia, as well as Georgia Comprehensive Cancer Registry records. The impact of SurvivorLink was evaluated by measuring outcomes related to both SurvivorLink utilization and the effects that utilization had on aspects of survivor care, including patient and provider awareness of survivor issues and percentage of patients receiving recommended survivorship care.

Specific Aims:

  • Collect data on pediatric cancer survivors in SurvivorLink. (Achieved)
  • Facilitate the exchange of clinical information at key transitions. (Achieved)
  • Provide patients with easy access to individualized educational materials and evidence-based late-effects screening recommendations. (Achieved)
  • Provide researchers with longitudinal information on incidence of late effects in pediatric cancer survivors. (Achieved)

2012 Activities: Recruitment for SurvivorLink was a major focus of the year. The research team employed several methods to recruit patients, including contacting individuals in the Georgia Comprehensive Cancer Registry, collaborating with local pediatric cancer clinics, and promoting SurvivorLink though social media. The research team partnered with two cancer advocacy organizations, CURE and Camp Sunshine, to provide information about SurvivorLink at workshops, conferences, and other survivorship events.

To allow additional time for patient recruitment, Dr. Mertens used a 1-year no-cost extension. As last reported in the AHRQ Research Reporting System, project progress was on track, and budget spending was on target. This project was completed in February 2012.

Impact and Findings: The project team conducted focus groups and semi-structured interviews with providers, patients, and parents to understand the needs of these groups. The focus groups indicated that providers wanted a system that allows efficient access to patient health information before the patient visit. Patients and their parents expressed concern about privacy, particularly from insurance companies, colleges, and employers. Additionally, the study staff learned from the focus groups that most parents were not familiar with the importance of survivor care.

Based on the focus group findings, the patient-parent portal was designed with special attention to security and privacy. Similar to a social networking site, patients and parents can invite their primary care doctor and other physicians to access their survivor health plan online to facilitate information exchange, and may un-invite them at any time. As an added security measure, patients and parents are able to monitor who has access to their information. When patients or parents sign up, their survivor health care plan is uploaded into the system, and are able to give permission for their providers to post information as well. The portal highlights tailored information for individual patients based on their risks. Patients and parents are also able to link current medications with relevant health links, and are able to store other information as scanable documents.

To maximize its recruiting efforts, the research team analyzed recruitment numbers for each recruitment method. Of the 218 pediatric cancer patients contacted through Children’s Healthcare of Atlanta, 23 (11 percent) registered with SurvivorLink after mail contact, and 49 (22 percent) after mail contact and a telephone call. Of these patients, individuals who previously attended a cancer survivorship clinic were significantly more likely to register with SurvivorLink than those who had not attended a survivorship
clinic. At the community outreach survivorship events, 22 percent of patients or parents who engaged with SurvivorLink staff registered with the Web site. Additionally, following outreach events, the average number of weekly visits to SurvivorLink increased by 25. In the first 4 months of a Facebook social media campaign, the SurvivorLink Facebook page received 645 views and 58 “likes.”

As of the end of the study, 364 people registered with SurvivorLink. Of these, 132 were providers, 131 were parents, and 53 were patients. There have been 4,001 visits to the SurvivorLink Web site. The average number of pages viewed was 5.84, and the average length of time on the site was 6.98 minutes. Fertility and neurocognitive issues were among the most frequently searched types of information. Among providers who have visited SurvivorLink, 50 continuing medical education credits have been completed. In addition, SurvivorLink continues to be offered to patients attending the Cancer Survivor Programs and through cancer advocacy partner organizations. Funds have been procured to sustain this Web site.

Target Population: Cancer, Pediatric*, Teenagers

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions, and the electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

*This target population is one of AHRQ's priority populations.

Improving Pediatric Cancer Survivorship Care Through SurvivorLink - 2011

Summary Highlights

  • Principal Investigator: 
  • Organization: 
  • Funding Mechanism: 
    RFA: HS08-002: Ambulatory Safety and Quality Program: Improving Management of Individuals with Complex Healthcare Needs through Health Information Technology (MCP)
  • Grant Number: 
    R18 HS 017831
  • Project Period: 
    September 2008 - September 2012
  • AHRQ Funding Amount: 
    $1,199,198
  • PDF Version: 
    (PDF, 204.09 KB)

Summary: As the number of cancer survivors increases, the need to educate primary care providers about the unique needs and care of these individuals has become more urgent. This is particularly true for childhood cancer survivors for whom cancer therapies, with overall cure rates of 75 to 80 percent, are highly successful. Yet high-quality individualized survivorship care is challenging due to: 1) multiple transitions in care among primary and specialty care providers; and 2) the lack of knowledge about survivor issues among providers, patients, and their families.

Dr. Mertens and her research team are addressing these challenges by building the SurvivorLink system, a personal health record with the goals to improve pediatric cancer survivors' transition to pediatric primary and specialty care and increase patient, family, and provider knowledge about survivor issues. SurvivorLink includes a cancer treatment summary, individualized risk- and late-effects screening profiles, and other clinical information needed to provide high-quality long-term care to survivors. SurvivorLink also provides educational materials that improve awareness of survivorship issues and best practices in survivor care, including continuing medical education (CME) credits to providers who complete educational materials using the SurvivorLink Web site.

SurvivorLink has three target user groups: patients and their families; providers; and researchers. Participants for this pilot study are being recruited through the five cancer treatment centers in the State of Georgia and Georgia Comprehensive Cancer Registry records. The impact of SurvivorLink will be evaluated by measuring outcomes related to both SurvivorLink utilization and the effects that utilization has on aspects of survivor care, including patient and provider awareness of survivor issues and percentage of patients receiving recommended survivorship care.

Specific Aims:

  • Collect data on pediatric cancer survivors in SurvivorLink. (Ongoing)
  • Facilitate the exchange of clinical information at key transitions. (Ongoing)
  • Provide patients with easy access to individualized educational materials and evidence-based late-effects screening recommendations. (Ongoing)
  • Provide researchers with longitudinal information on incidence of late effects in pediatric cancer survivors. (Upcoming)

2011 Activities: Recruitment for SurvivorLink has been a major focus of this year. The research team has employed several methods to recruit patients, including contacting individuals on the Georgia Comprehensive Cancer Registry, collaborating with local pediatric cancer clinics, and promoting SurvivorLink though social media. Additionally, the research team partnered with two cancer advocacy organizations, CURE and Camp Sunshine, to provide information about SurvivorLink at workshops, conferences, and other survivorship events.

To maximize its recruiting efforts, the research team analyzed recruitment numbers for each recruitment method. Of the 218 pediatric cancer patients contacted through Childrens' Healthcare of Atlanta, 23 (11 percent) registered with SurvivorLink after mail contact, and 49 (22 percent) after mail contact and a telephone call. Of these patients, individuals who previously attended a cancer survivorship clinic were significantly more likely to register with SurvivorLink than those who have not attended a survivorship clinic. At the community outreach survivorship events, 22 percent of patients or parents who engage with SurvivorLink staff registered with the Web site. Additionally, following outreach events, the average number of weekly visits to SurvivorLink increased by 25. In the first 4 months of a Facebook social media campaign, the SurvivorLink Facebook page received 645 views and 58 'likes.'

As of the end of 2011, 316 people registered with SurvivorLink. Of these, 132 were providers, 131 were parents, and 53 were patients. There have been 4,001 visits to the SurvivorLink Web site. The average number of pages viewed is 5.84, and the average length of time on the site is 6.98 minutes. Fertility and neurocognitive issues are among the most frequently searched types of information. Among providers who have visited SurvivorLink, 50 CME credits have been completed.

As last self-reported in the AHRQ Research Reporting System, project progress and activities are on track with the revised timeline and the project budget spending is on track. The project is using a 1-year no-cost extension to allow additional time for patient recruitment.

Preliminary Impact and Findings: The project team conducted focus groups and semi-structured interviews with providers, patients, and parents to understand the needs of these groups. The focus groups indicated that providers want a system that allows efficient access to patient health information before the patient visit. Patients and their parents expressed concern about privacy from insurance companies, colleges, and employers. Additionally, the study staff learned that most parents were not familiar with the importance of survivor care.

Findings from focus groups with providers and parents of pediatric cancer survivors were incorporated into the development of the parent-patient portal of SurvivorLink. The patient-parent portal was designed with special attention to security and privacy. Similar to a social networking site, patients and parents can invite their primary care doctor and other physicians to access their survivor health plan online to facilitate information exchange, and can un-invite them at any time. As an added security measure, patients and parents are able to monitor who looks at their information. When patients or parents sign up, they receive a survivor health care plan and give permission for their providers to post information. The portal highlights tailored information for individual patients based on their risks. Patients and parents are also able to link their current medications with relevant health links and can store other information as scanable documents.

Target Population: Cancer, Pediatric*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

* This target population is one of AHRQ's priority populations.

Improving Pediatric Cancer Survivorship Care Through SurvivorLink - 2010

Summary Highlights

  • Principal Investigator: 
  • Organization: 
  • Funding Mechanism: 
    RFA: HS08-002: Ambulatory Safety and Quality Program: Improving Management of Individuals with Complex Healthcare Needs through Health Information Technology (MCP)
  • Grant Number: 
    R18 HS 017831
  • Project Period: 
    September 2008 – September 2011
  • AHRQ Funding Amount: 
    $1,199,198
  • PDF Version: 
    (PDF, 305.31 KB)


Target Population: Cancer, Pediatric*

Summary: As the numbers of survivors increase, cancer survivorship has become a national public health priority. This is particularly true for childhood cancer survivors for whom cancer therapies, with overall cure rates of 75-to-80 percent, are highly successful. Yet high-quality, individualized survivorship care is challenging due to: 1) multiple transitions in care among primary and specialty care providers, and 2) the lack of knowledge about survivor issues among providers, patients, and their families.

This project aims to address these challenges by building the SurvivorLink system, a personal health record that will improve pediatric cancer survivors’ transition to primary and specialty care for pediatric and increase patient, family, and provider knowledge about survivor issues. SurvivorLink will include a cancer treatment summary, individualized risk- and late-effects screening profiles, and other clinical information needed to provide high-quality long-term care to survivors. In addition, there will be educational materials that improve awareness of survivorship issues and best practices in survivor care.

SurvivorLink has three target user groups: patients and families; providers; and researchers. For this pilot study, patient, family, and provider participants will be recruited through the five cancer treatment centers in the State of Georgia and through Georgia Comprehensive Cancer Registry records. The impact of SurvivorLink will be evaluated by measuring outcomes related to both SurvivorLink utilization and the effects that SurvivorLink utilization has on aspects of survivor care, including patient and provider awareness of survivor issues and percentage of patients receiving recommended survivorship care.

Specific Aims:
  • Collect data on pediatric cancer survivors in SurvivorLink. (Ongoing)
  • Facilitate the exchange of clinical information at key transitions. (Ongoing)
  • Provide patients with easy access to individualized educational materials and evidence-based late-effects screening recommendations. (Upcoming)
  • Provide researchers with longitudinal information on incidence of late effects in pediatric cancer survivors. (Ongoing)

2010 Activities: The project team conducted focus groups and semi-structured interviews with providers, patients, and parents to understand the needs of these groups. The focus groups indicated that providers want a system that allows efficient access to patient health information before the patient visit. Patients and their parents expressed concern about privacy from insurance companies, colleges, and employers. As a result, the patient-parent portal was designed with special attention to security and privacy. Similar to a social networking site, patients and parents can invite their primary care doctor and other physicians to access their survivor health plan online to facilitate information exchange, and can un-invite them at any time. When patients or parents sign up, they receive a survivor health care plan and give permission for their providers to post information. The portal highlights tailored information for individual patients based on their risks. Patients and parents are also able to link their current medications with relevant health links and to store other information as scanable documents. As an added security measure, patient and parents are able to monitor who looks at their patient information.

Dr. Mertens held several seminars to educate providers, including pediatricians, social workers, oncologists, and endocrinologists about SurivorLink. Additionally, all pediatricians in the State were notified of the system. To date, 55 providers have registered. In September 2010, patient and parent recruitment was initiated at the largest clinic via mailings and followup phone calls. A total of 26 users have registered (19 parents and 7 patients) toward the recruitment goal of 500. In 2011, patient and parent recruitment will begin at the other clinics. Dr. Mertens will also recruit patients and parents from community-based pediatric cancer support groups.

Grantee’s Most Recent Self-Reported Quarterly Status (as of December 2010): The project is meeting most milestones on time. Project spending is roughly on target.

Preliminary Impact and Findings: Findings from focus groups with providers and parents of pediatric cancer survivors were incorporated into the development of the parent-patient portal of SurvivorLink. During followup recruitment phone conversations, the project staff learned that most parents were not familiar with the importance of survivor care.

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions, and the electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

*AHRQ Priority Population.

Improving Pediatric Cancer Survivorship Care Through SurvivorLink - Final Report

Citation:
Mertens A. Improving Pediatric Cancer Survivorship Care Through SurvivorLink - Final Report. (Prepared by Emory University under Grant No. R18 HS017831). Rockville, MD: Agency for Healthcare Research and Quality, 2012. (PDF, 296.72 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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