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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 6 of 6 Research Studies DisplayedMarchak JG, Cherven B, Williamson Lewis R
User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.
This article’s objective is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support childhood cancer survivors. A series of focus groups and structured interviews were conducted with young adult survivors of childhood cancer (n = 3), parents (n =11), and healthcare providers (n = 14) to understand their needs as potential users and the contexts in which they use an electronic personal health record (PHR) tool for survivors called Cancer SurvivorLink™. Usability evaluations were conducted to assess the functionality of the PHR. Three major themes were identified: “Learn” – education about the lifelong healthcare needs of pediatric cancer survivors; “Store” – secure electronic storage for healthcare documents to direct long-term care follow-up; and “Share” – communication functionality to allow sharing of health documents with healthcare providers.
AHRQ-funded; HS017831.
Citation: Marchak JG, Cherven B, Williamson Lewis R .
User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.
Support Care Cancer 2020 Aug;28(8):3905-14. doi: 10.1007/s00520-019-05199-w..
Keywords: Children/Adolescents, Cancer, Electronic Health Records (EHRs), Health Information Technology (HIT)
Greenzang KA, Fasciano KM, Block SD
Early information needs of adolescents and young adults about late effects of cancer treatment.
This study evaluated the importance, quality, and implications of information about late effects in adolescents and young adults (AYA) recently diagnosed with cancer. Surveying AYAs with cancer who were 15 to 29 years old and were treated at the Dana-Farber Cancer Institute, researchers found that most AYAs with cancer value early information about the risks of late effects and infertility, yet many patients felt that they had not received high-quality information about these topics. They recommended the development of age-appropriate late-effect communication strategies that recognize high AYA distress to address the gap between desired information and perceived information quality.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Fasciano KM, Block SD .
Early information needs of adolescents and young adults about late effects of cancer treatment.
Cancer 2020 Jul 15;126(14):3281-88. doi: 10.1002/cncr.32932..
Keywords: Children/Adolescents, Young Adults, Cancer, Education: Patient and Caregiver, Clinician-Patient Communication, Communication, Risk
Mueller EL, Jacob SA, Cochrane AR
Variation in hospital admission from the emergency department for children with cancer: a pediatric health information system study.
Children with cancer experience a wide range of conditions that require urgent evaluation in the emergency department (ED), yet variation in admission rates is poorly documented. In this study, the investigators performed a retrospective cohort study using the Pediatric Health Information System of ED encounters by children with cancer between July 2012 and June 2015. They concluded that the percentage of children with cancer admitted through the ED varied widely by institution and diagnosis.
AHRQ-funded; HS026390.
Citation: Mueller EL, Jacob SA, Cochrane AR .
Variation in hospital admission from the emergency department for children with cancer: a pediatric health information system study.
Pediatr Blood Cancer 2020 Jun;67(6):e28140. doi: 10.1002/pbc.28140..
Keywords: Children/Adolescents, Cancer, Emergency Department, Hospitalization
Heneghan MB, Hussain T, Barrera L
Applying the COM-B model to patient-reported barriers to medication adherence in pediatric acute lymphoblastic leukemia.
This study examined parent- and patient-reported barriers to oral chemotherapy adherence with children with pediatric acute lymphoblastic leukemia (ALL). The medicine most often used was 6-mercaptopurine (6-MP). Forty-nine parents and 15 patients were surveyed and most reported at least one adherence barrier. Most of the barriers were about meeting other patients with ALL or meeting other parents. Patients also reported difficulty in finding out what their medications are, and what 6-MP does. These barriers can lead to relapse if they are not addressed.
AHRQ-funded; HS023011.
Citation: Heneghan MB, Hussain T, Barrera L .
Applying the COM-B model to patient-reported barriers to medication adherence in pediatric acute lymphoblastic leukemia.
Pediatr Blood Cancer 2020 May;67(5):e28216. doi: 10.1002/pbc.28216..
Keywords: Children/Adolescents, Treatments, Cancer, Medication, Patient Adherence/Compliance, Patient-Centered Outcomes Research
Greenzang KA, Al-Sayegh H, Ma C
Parental considerations regarding cure and late effects for children with cancer.
The purpose of this study was to learn how parents and physicians consider late-effects risks against a potential survival benefit when making treatment decisions. Parents of children with cancer and physicians at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were surveyed. Investigators found that avoidance of severe neurocognitive impairment was the predominant driver of parent and physician treatment preferences, even over an increased chance of cure. They concluded that their study highlights the importance of exploring parental late-effects priorities when discussing treatment options.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Al-Sayegh H, Ma C .
Parental considerations regarding cure and late effects for children with cancer.
Pediatrics 2020 May;145(5):e20193552. doi: 10.1542/peds.2019-3552..
Keywords: Children/Adolescents, Cancer, Decision Making, Caregiving, Risk
Ramsey WA, Heidelberg RE, Gilbert AM
eHealth and mHealth interventions in pediatric cancer: a systematic review of interventions across the cancer continuum.
The primary objectives of this study were to (a) identify current published research in electronic health (eHealth) and mobile health (mHealth) interventions for youth undergoing cancer treatment and child, adolescent, and young adult survivors of childhood cancer and (b) critically appraise the current scientific evidence on their effectiveness and efficacy. As an exploratory aim, the investigators identified pediatric cancer patients' and survivors' perceptions, attitudes, and concerns related to eHealth and mHealth interventions.
AHRQ-funded; HS023011.
Citation: Ramsey WA, Heidelberg RE, Gilbert AM .
eHealth and mHealth interventions in pediatric cancer: a systematic review of interventions across the cancer continuum.
Psychooncology 2020 Jan;29(1):17-37. doi: 10.1002/pon.5280..
Keywords: Children/Adolescents, Cancer, Telehealth, Health Information Technology (HIT), Healthcare Delivery, Patient-Centered Healthcare