Dataset Information

Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

ABSTRACT: The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT survivors and nontransplantation clinicians (oncologists and primary care physicians) were invited to participate in a survey evaluating the usefulness and utility of a sample HSCT-specific SCP with a treatment summary generated by autopopulation from an electronic health record (EHR). All participating HSCT survivors (n?=?29) and clinicians (n?=?18) indicated a desire to receive an SCP. More than 85% of the participants perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, and graft-versus-host disease and other late/chronic side effects to be useful. The majority of survivors also believed that care team contact information was useful. In addition, >85% of survivors and clinicians agreed that the SCP increased their understanding of treatments and chronic/late side effects, improved health care provided, and were satisfied with the SCP and found it understandable and easy to use. The majority of survivors indicated that additional information should be added to the SCP, whereas some clinicians deemed the SCP too long. Survivors preferred to receive the SCP as a paper document at the end of a regular follow-up visit and review it with a cancer clinician, whereas clinicians preferred to receive the SCP through the EHR. These findings will help improve the design of future SCPs for use by HSCT survivors and clinicians. Future work will include leveraging the EHR to ease the burden of creating user-centered documents.

SUBMITTER: Morken CM

PROVIDER: S-EPMC6559830 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Publications

Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

Morken Colleen M CM Tevaarwerk Amye J AJ Swiecichowski Amanda K AK Haine James E JE Williams Zachary T ZT Norslien Kirsten K Arroyo Natalia N Zhang Xiao X Campbell Bethaney B Mendonca Eneida A EA Juckett Mark B MB Sesto Mary E ME

Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation 20190211 6

The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT ...[more]

PMID: 30763727

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Project description:BackgroundAlthough cancer survivorship care plans have been in use for several years, they have been shown to not be effective in meeting the long-term needs of cancer survivors, in addition being generic and passive in nature. Interactive survivorship care plans in the form of a personal decision support aid could provide an opportunity to not only engage survivors in their health care, but also capture meaningful treatment-related outcomes to use as a rich data source as the basis for making informed decisions. The objective of this research is to formulate an evidence-based model framework for implementing breast cancer survivorship guidelines via an online breast cancer survivorship care plan (SCP).MethodsThe study was completed in three steps. In the first step, or the requirements gathering phase, we conducted personal interviews of breast cancer survivors to determine their use of the survivorship care plan (SCP) and related needs to determine core SCP functions and formulate an implementation framework for an online SCP. In the second step, we used the framework as a guide to design and develop the online SCP tool. Finally, in the third step, we conducted preliminary testing to determine the feasibility of the developed tool among online users.ResultsFifteen breast cancer survivors were consulted, who reported several issues from their use of the traditional paper-based SCP. Four themes were identified that represent the SCP's core desired functions. Eight features were matched to implement these core functions. Using a personal decision approach, an online SCP tool called ACESO that incorporates these features and functions was developed. Preliminary feasibility testing yielded overall positive responses from breast cancer survivors (n = 51).ConclusionOur study demonstrated that survivors face challenges from their use of a traditional paper-based SCP. The online SCP we developed is technically feasible and has the potential to effectively engage breast cancer survivors in self-management and shared decision-making with their clinicians and caregivers. Further testing is required to assess its usability and long-term impact.

Dataset Information

Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

Publications

Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

Similar Datasets

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