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- (-) Cancer (15)
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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 15 of 15 Research Studies DisplayedDionne-Odom JN, Wells RD, Guastaferro K
An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial.
The purpose of this study was to evaluate the feasibility, acceptability, and efficacy of the modules of a telehealth palliative care decision support training program (CASCADE training- CAre Supporters Coached to be Adept DEcision Partners) for caregivers of cancer patients. The researchers conducted a pilot trial between October 2019 and October 2020 in which 46 dyads of newly diagnosed cancer patients and their caregivers were randomized and assigned to one of eight experimental conditions. Each experimental condition included a combination of one of three CASCADE modules. Measures of decision support and caregiver and patient distress, training feasibility, and training acceptability were collected. The study found that the individual CASCADE modules were reported to have a possible benefit for decision support and caregiver distress, and that the average caregiver rating for recommending the program was 9.9 on a scale of 1(Not at all likely) to 10 (Extremely likely). The study concluded that the pilot trial was a success and justify and warrant a full-scale trial.
AHRQ-funded; HS013852.
Citation: Dionne-Odom JN, Wells RD, Guastaferro K .
An early palliative care telehealth coaching intervention to enhance advanced cancer family caregivers' decision support skills: the CASCADE pilot factorial trial.
J Pain Symptom Manage 2022 Jan;63(1):11-22. doi: 10.1016/j.jpainsymman.2021.07.023..
Keywords: Palliative Care, Cancer, Telehealth, Health Information Technology (HIT), Caregiving
Greenzang KA, Kelly CA, Al-Sayegh H
Thinking ahead: parents' worries about late effects of childhood cancer treatment.
This study examined parental perceived likelihood, impact, and worry about late effects of treatment for childhood cancer. The authors surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center within a year of diagnosis. Most parents (96%) valued information about late effects, and 93% considered late effects in their treatment decision-making. However, 24% could not recall receiving information about late effects, and only 51% felt well-prepared for potential late effects. Only one-fifth of parents consider late effects to be likely for their child, while 61% were extremely/very worried about late effects.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Kelly CA, Al-Sayegh H .
Thinking ahead: parents' worries about late effects of childhood cancer treatment.
Pediatr Blood Cancer 2021 Dec;68(12):e29335. doi: 10.1002/pbc.29335..
Keywords: Children/Adolescents, Cancer, Education: Patient and Caregiver, Health Literacy, Caregiving
Borsky AE, Zuvekas SH, Kent EE
AHRQ Author: Borsky AE, Zuvekas SH
Understanding the characteristics of US cancer survivors with informal caregivers.
This AHRQ-authored paper’s purpose is to provide a national representative description of the sociodemographic characteristics of cancer survivors who have or had an informal caregiver. Cross-sectional data from the MEPS Experiences With Cancer Survivorship Supplement survey in 2011, 2016, and 2017 was used. The study population consisted of 720 US adult survivors of cancer other than nonmelanoma skin cancer who were treated for cancer less than 3 years before the survey and were living in the community. A total of 55.2% of cancer survivors reported having an informal caregiving during or after their cancer treatment. Males were more likely to have a spouse as their caregiver and females were more likely to have a child. Cancer survivors who were female, were married, were of a non-White race/ethnicity, or were in poor health were more likely to have an informal caregiver.
AHRQ-authored.
Citation: Borsky AE, Zuvekas SH, Kent EE .
Understanding the characteristics of US cancer survivors with informal caregivers.
Cancer 2021 Aug 1;127(15):2752-61. doi: 10.1002/cncr.33535..
Keywords: Medical Expenditure Panel Survey (MEPS), Cancer, Caregiving
Richardson DR, Oakes AH, Crossnohere NL
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Although patients with acute myeloid leukemia (AML) experience significant toxicities and poor outcomes, few studies have quantified patients' experience. In this study, a community-centered approach was used to develop an AML-specific best-worst scaling (BWS) instrument involving 13 items in four domains (psychological, physical, decision-making, treatment delivery) to quantify patient worry. A survey of patients and caregivers was conducted using the instrument. Data were analyzed using conditional logistic regression.
AHRQ-funded; HS000032.
Citation: Richardson DR, Oakes AH, Crossnohere NL .
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Psychooncology 2021 Jul;30(7):1104-11. doi: 10.1002/pon.5652..
Keywords: Cancer, Patient Experience, Caregiving, Outcomes, Patient-Centered Outcomes Research
Okado I, Pagano I, Cassel K
Perceptions of care coordination in cancer patient-family caregiver dyads.
The authors examined cancer patients and their family caregivers' perspectives of care coordination (CC) using a dyadic research design. They found that a subgroup of family caregivers reported poorer perception of CC than patients, suggesting that those family caregivers and providers may benefit from intervention. They concluded that further understanding of patient-family caregiver dyads' perspectives of CC can inform development of strategies to integrate family caregivers into the cancer care team, develop effective CC interventions for family caregivers, and contribute to improved quality and value of cancer care.
AHRQ-funded; HS027286.
Citation: Okado I, Pagano I, Cassel K .
Perceptions of care coordination in cancer patient-family caregiver dyads.
Support Care Cancer 2021 May;29(5):2645-52. doi: 10.1007/s00520-020-05764-8..
Keywords: Cancer, Caregiving, Care Coordination, Quality of Care
Heneghan MB, Hussain T, Barrera L
Access to technology and preferences for an mHealth intervention to promote medication adherence in pediatric acute lymphoblastic leukemia: approach leveraging behavior change techniques.
This study’s objectives were to examine access to mobile technology and preferences for an mHealth intervention to improve medication adherence in pediatric acute lymphoblastic leukemia (ALL). Parents of children with ALL as well as adolescents and young adults (AYAs) with ALL who received maintenance chemotherapy were given a cross-sectional survey. Findings showed that parents, adolescents, and AYAs reported ubiquitous access to mobile technology and strong interest in multiple adherence-specific mHealth app features. Parents and AYAs provided valuable insight into preferred features for a multifunctional behavioral intervention to promote medication adherence in pediatric ALL.
AHRQ-funded; HS023011.
Citation: Heneghan MB, Hussain T, Barrera L .
Access to technology and preferences for an mHealth intervention to promote medication adherence in pediatric acute lymphoblastic leukemia: approach leveraging behavior change techniques.
J Med Internet Res 2021 Feb 18;23(2):e24893. doi: 10.2196/24893..
Keywords: Children/Adolescents, Young Adults, Caregiving, Cancer, Medication, Patient Adherence/Compliance, Health Information Technology (HIT), Treatments
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, Shared Decision Making, Caregiving, Risk
Fauer AJ, Hoodin F, Lalonde E
Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.
The authors of this article developed BMT Roadmap, a health information technology application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. They conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric hematopoietic stem cell transplantation (HSCT) patients and registered the study on ClinicalTrials.gov. They found that BMT Roadmap was a feasible intervention to implement in HSCT caregivers, associated with increased activation and decreased burden; quality of life, however, was lowered across hospitalization. The authors conclude that their findings support the need for further development of caregiver-specific self-directed resources and provision for both inpatient and outpatient across the HSCT trajectory.
AHRQ-funded; HS023613.
Citation: Fauer AJ, Hoodin F, Lalonde E .
Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.
Support Care Cancer 2019 Jun;27(6):2103-12. doi: 10.1007/s00520-018-4450-4..
Keywords: Cancer, Caregiving, Children/Adolescents, Electronic Health Records (EHRs), Health Information Technology (HIT), Quality of Life, Transplantation
Brand McCarthy SR, Kang TI, Mack JW
Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process.
The current study examined the frequency and impact of child presence during a serious medical conversation on the parent's communication experience in pediatric oncology. The investigators concluded that the parent's communication experience is not diminished by the choice to include the child. They suggest that given the bioethical imperative to include children in conversations about serious illness whenever possible, this concern should not be used to exclude children, but rather to give parents additional time of their own when needed to fully process decisions.
AHRQ-funded; HS000063.
Citation: Brand McCarthy SR, Kang TI, Mack JW .
Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process.
Support Care Cancer 2019 Apr;27(4):1319-24. doi: 10.1007/s00520-019-4653-3..
Keywords: Cancer, Caregiving, Children/Adolescents, Clinician-Patient Communication, Patient and Family Engagement
Greenzang KA, Cronin AM, Kang TI
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.
In this study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences. The investigators concluded that although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information.
AHRQ-funded; HS022986.
Citation: Greenzang KA, Cronin AM, Kang TI .
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.
Cancer 2018 Dec 1;124(23):4529-37. doi: 10.1002/cncr.31772..
Keywords: Cancer, Caregiving, Children/Adolescents, Communication, Children/Adolescents
Bardach NS, Burkhart Q, Richardson LP
Hospital-based quality measures for pediatric mental health care.
The objective of this study was to develop and test medical record-based measures used to assess quality of pediatric mental health care in the emergency department (ED) and inpatient settings. The investigators drafted an evidence-based set of pediatric mental health care quality measures for the ED and inpatient settings and used them to identify sex and race disparities and substantial hospital variation.
AHRQ-funded; HS020506.
Citation: Bardach NS, Burkhart Q, Richardson LP .
Hospital-based quality measures for pediatric mental health care.
Pediatrics 2018 Jun;141(6). doi: 10.1542/peds.2017-3554..
Keywords: Cancer, Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Shared Decision Making, Diagnostic Safety and Quality, Patient Experience, Patient and Family Engagement
Irwin MM, Dudley W, Northouse L
Oncology nurses' knowledge, confidence, and practice in addressing caregiver strain and burden.
An email survey of 2,055 Oncology Nursing Society members was conducted to determine their attitudes and knowledge of caregiver strain and burden. The results show that they tended to overestimate the strength of evidence of their knowledge based more on anecdotal evidence from being or having received care from an informal caregiver.
AHRQ-funded; HS021957.
Citation: Irwin MM, Dudley W, Northouse L .
Oncology nurses' knowledge, confidence, and practice in addressing caregiver strain and burden.
Oncol Nurs Forum 2018 Mar 1;45(2):187-96. doi: 10.1188/18.onf.187-196..
Keywords: Cancer, Caregiving, Provider: Nurse
Gustafson DH, DuBenske LL, Atwood AK
Reducing symptom distress in patients with advanced cancer using an e-alert system for caregivers: Pooled analysis of two randomized clinical trials.
The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient's symptoms, as reported by a family caregiver. It found that when severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians.
AHRQ-funded; HS019917.
Citation: Gustafson DH, DuBenske LL, Atwood AK .
Reducing symptom distress in patients with advanced cancer using an e-alert system for caregivers: Pooled analysis of two randomized clinical trials.
J Med Internet Res 2017 Nov 14;19(11):e354. doi: 10.2196/jmir.7466.
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Keywords: Cancer, Caregiving, Communication, Telehealth, Web-Based
Roydhouse JK, Wilson IB
Systematic review of caregiver responses for patient health-related quality of life in adult cancer care.
The aim of this review is to help cancer researchers select a validated health-related quality of life tool if they anticipate using proxy-reported data. It concluded that the evidence base is strongest for the EORTC (disease-specific tools), COOP/WONCA (generic tools), and MQOL (end-of-life-specific tools).
AHRQ-funded; HS000011.
Citation: Roydhouse JK, Wilson IB .
Systematic review of caregiver responses for patient health-related quality of life in adult cancer care.
Qual Life Res 2017 Aug;26(8):1925-54. doi: 10.1007/s11136-017-1540-6.
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Keywords: Cancer, Caregiving, Patient-Centered Outcomes Research, Quality of Life
Rocke DJ, Beumer HW, Taylor DH, Jr.
Physician and patient and caregiver health attitudes and their effect on Medicare resource allocation for patients with advanced cancer.
The investigators sought to determine how baseline attitudes toward quality vs quantity of life affect end-of-life resource allocation. They found that, compared with patients and caregivers, otolaryngology-head and neck surgery (OHNS) physician allocations differed significantly in all 15 benefit categories except home care. They concluded that understanding the effect of baseline attitudes is important for effective end-of-life discussions.
AHRQ-funded; HS018360.
Citation: Rocke DJ, Beumer HW, Taylor DH, Jr. .
Physician and patient and caregiver health attitudes and their effect on Medicare resource allocation for patients with advanced cancer.
JAMA Otolaryngol Head Neck Surg 2014 Jun;140(6):497-503. doi: 10.1001/jamaoto.2014.494.
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Keywords: Cancer, Caregiving, Medicare, Palliative Care, Provider: Physician, Quality of Life