National Healthcare Quality and Disparities Report
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Topics
- Adverse Drug Events (ADE) (1)
- Adverse Events (1)
- Ambulatory Care and Surgery (1)
- Arthritis (1)
- Asthma (1)
- Behavioral Health (2)
- Cancer (6)
- Cancer: Colorectal Cancer (1)
- Cancer: Prostate Cancer (1)
- Cardiovascular Conditions (2)
- Caregiving (4)
- Care Management (1)
- Children/Adolescents (4)
- Chronic Conditions (3)
- Comparative Effectiveness (3)
- Complementary and Alternative Medicine (1)
- Dementia (1)
- Diabetes (1)
- Diagnostic Safety and Quality (1)
- Digestive Disease and Health (1)
- Disparities (1)
- Education: Patient and Caregiver (2)
- Elderly (3)
- Electronic Health Records (EHRs) (1)
- Emergency Department (1)
- Evidence-Based Practice (5)
- Family Health and History (2)
- Healthcare Costs (2)
- Healthcare Delivery (1)
- Healthcare Utilization (1)
- Health Information Technology (HIT) (3)
- Health Status (5)
- Heart Disease and Health (2)
- Home Healthcare (1)
- Hospitalization (2)
- Injuries and Wounds (1)
- Medical Expenditure Panel Survey (MEPS) (1)
- Medication (2)
- Neurological Disorders (1)
- Newborns/Infants (2)
- Nursing Homes (1)
- Nutrition (1)
- Orthopedics (2)
- Outcomes (7)
- Pain (3)
- Patient-Centered Outcomes Research (9)
- Patient Experience (2)
- Patient Self-Management (1)
- Policy (1)
- Prevention (2)
- (-) Quality of Life (30)
- Racial and Ethnic Minorities (2)
- Respiratory Conditions (1)
- Screening (1)
- Sexual Health (1)
- Shared Decision Making (1)
- Skin Conditions (1)
- Social Determinants of Health (1)
- Surgery (6)
- Telehealth (1)
- Training (1)
- Transplantation (1)
- Treatments (1)
- Vulnerable Populations (1)
- Women (2)
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 25 of 30 Research Studies DisplayedAnchan RM, Spies JB, Zhang S
Long-term health-related quality of life and symptom severity following hysterectomy, myomectomy, or uterine artery embolization for the treatment of symptomatic uterine fibroids.
This study compared the different surgical procedures used for uterine fibroids with respect to long-term health-related quality of life outcomes and symptom improvement. The authors examined differences in change from baseline to 1-, 2-, and 3-year follow-up in health-related quality of life and symptom severity among patients who underwent abdominal myomectomy, laparoscopic or robotic myomectomy, abdominal hysterectomy, laparoscopic or robotic hysterectomy, or uterine artery embolization. A subset of the COMPARE-UF registry, a multiinstitutional prospective observational cohort study of women undergoing treatment for uterine fibroids was used. A subset of 1384 women aged 31 to 45 years who underwent either abdominal myomectomy (n=237), laparoscopic myomectomy (n=272), abdominal hysterectomy (n=177), laparoscopic hysterectomy (n=522), or uterine artery embolization (n=176) were included. They obtained demographics, fibroid history, and symptoms using questionnaires at enrollment and at 1, 2, and 3 years posttreatment. The Uterine Fibroid Symptom and Quality of Life (UFS-QoL) questionnaire was used to ascertain symptom severity and health-related quality of life scores among participants. Those undergoing hysterectomy and uterine artery embolization reported the longest duration of fibroid symptoms with a mean of 6.3 years. The most common fibroid symptoms were heavy bleeding (menorrhagia) (75.3%), bulk symptoms (74.2%), and bloating (73.2%), with more than half (54.9%) of participants reported anemia, and 9.4% women reported a history of blood transfusion. Across all modalities, total health-related quality of life and symptom severity score markedly improved from baseline to 1-year with the largest improvement in the laparoscopic hysterectomy group. Those undergoing abdominal myomectomy, laparoscopic myomectomy, and uterine artery embolization also demonstrated significant improvement in health-related quality of life and symptom severity at 1 year, and the improvement persisted from baseline for uterine-sparing procedures during second and third year, posttreatment intervals, however with a trend toward decline in degree of improvement from years 1 and 2.
AHRQ-funded; HS023418.
Citation: Anchan RM, Spies JB, Zhang S .
Long-term health-related quality of life and symptom severity following hysterectomy, myomectomy, or uterine artery embolization for the treatment of symptomatic uterine fibroids.
Am J Obstet Gynecol 2023 Sep; 229(3):275.e1-75.e17. doi: 10.1016/j.ajog.2023.05.020..
Keywords: Quality of Life, Women, Surgery
Weekes AJ, Davison J, Lupez K
Quality of life 1 month after acute pulmonary embolism in emergency department patients.
The objective of this prospective multicenter registry study was to determine whether any clinical or pathophysiologic features of pulmonary embolism were associated with worse Pulmonary Embolism Quality-of-Life (PEmb-QoL) scores after one month. Pulmonary embolism patients participated in QoL assessments and received PEmb-QoL questionnaires conducted by the researchers. Results indicated that acute clinical deterioration, right ventricular dysfunction, and pulmonary embolism PE severity were not predictors of QoL at 1 month post-embolism. Independent predictors of worsened QoL were COPD, rehospitalization, and hospital length of stay.
AHRQ-funded; HS025979.
Citation: Weekes AJ, Davison J, Lupez K .
Quality of life 1 month after acute pulmonary embolism in emergency department patients.
Acad Emerg Med 2023 Aug; 30(8):819-31. doi: 10.1111/acem.14692..
Keywords: Quality of Life, Respiratory Conditions, Emergency Department
Alford CM, Wahlquist AE, Sterba KR
A quality improvement study on the feasibility and potential benefits of a yogic breathing program for cancer survivors and caregivers during treatment in a lodging facility.
This study assessed the acceptability and feasibility of a yogic breathing program in cancer patients and caregivers during the treatment period, and then investigated whether it provided any benefits. The authors designed a 20-minute yogic breathing regimen and introduced them to all-site cancer patients and their caregivers during the cancer treatment period at a lodging facility, Hope Lodge in Charleston, SC. The classes were advertised via intercom, displays, and word of mouth. Participants were taught five different breathing exercises. After completion of the exercises in a single session, a self-reported quality improvement questionnaire was administered assessing sociodemographic/clinical factors, expectations about the session, and ratings of satisfaction with the session. There were 52 participants who provided feedback during the nine months of the collection period, with patients and caregivers in almost equal numbers. The findings indicated that yogic breathing is acceptable to patients and caregivers and may alleviate key symptoms from cancer treatment, in particular stress. The lodging facility continues to offer weekly yogic breathing sessions to their patients conducted by Hope Lodge volunteers trained by the study team.
AHRQ-funded; HS024533.
Citation: Alford CM, Wahlquist AE, Sterba KR .
A quality improvement study on the feasibility and potential benefits of a yogic breathing program for cancer survivors and caregivers during treatment in a lodging facility.
Brain Behav Immun Integr 2023 Jul; 3. doi: 10.1016/j.bbii.2023.100019..
Keywords: Complementary and Alternative Medicine, Cancer, Quality of Life
Ayers DC, Yousef M, Yang W
Age-related differences in pain, function, and quality of life following primary total knee arthroplasty: results from a FORCE-TJR (Function and Outcomes Research for Comparative Effectiveness in Total Joint Replacement) cohort.
The purpose of this prospective, multicenter cohort study was to evaluate the differences in pain, function, and quality of life (QoL) reported 1 year after total knee arthroplasty (TKA) across varying age groups. The researchers preoperatively assessed 11,602 unilateral primary TKA patients, and collected demographic data, comorbid conditions, and patient-reported outcome measures including the knee injury and osteoarthritis outcome score (KOOS), KOOS-12, KOOS Joint Replacement, and Short-Form health survey (12-item) and then collected again at 1-year postoperatively. The study found that prior to surgery, patients less than 55 years reported worse KOOS pain (39), function (50), and QoL (18) scores with poor mental health score (47) than other older patient groups. At 1 year after TKA, patients less than 55 years reported lower KOOS pain, function, and QoL scores when compared to patients 75 years or older. The differences in score changes among the age groups were statistically significant but clinically irrelevant. Further statistical analyses revealed that age was a significant predictor for pain, but not for function at 1 year where KOOS pain score was predicted to be higher in patients 75 years or older when compared to patients less than 55 years of age.
AHRQ-funded; HS018910.
Citation: Ayers DC, Yousef M, Yang W .
Age-related differences in pain, function, and quality of life following primary total knee arthroplasty: results from a FORCE-TJR (Function and Outcomes Research for Comparative Effectiveness in Total Joint Replacement) cohort.
J Arthroplasty 2023 Jul; 38(7 Suppl 2):S169-S76. doi: 10.1016/j.arth.2023.04.005..
Keywords: Orthopedics, Surgery, Quality of Life, Outcomes, Comparative Effectiveness, Evidence-Based Practice, Patient-Centered Outcomes Research, Pain
Leininger LJ, Tomaino M, Meara E
Health-related quality of life in high-cost, high-need populations.
This retrospective longitudinal study examined health care utilization, expenditures, and patient-reported health for high-cost, high-need (HCHN) populations comparing a baseline (year 1) and follow-up year (year 2). The sample included adults (n = 46,934) participating in the Medical Expenditure Panel Survey between 2011 and 2016. The authors estimated health-related quality of life (HRQOL) for each sample member using the physical and mental health scales from the Medical Outcomes Study Short Form 12. They compared HRQOL stratified by HCHN, defined as patients whose baseline (year 1) demographics, utilization, and clinical characteristics predicted top decile health spending in year 2. The physical health scale exhibited robust measure validity, reliability, and responsiveness, but the mental health scale did not. Mean physical health was 1.25 SDs lower in HCHN vs other patients (37.9 vs 51.0 on a 0-100 scale increasing in self-perceived health). Patient-reported health outcomes continued to remain poor in HCHN populations, even after health care utilization recedes.
AHRQ-funded; HS024075.
Citation: Leininger LJ, Tomaino M, Meara E .
Health-related quality of life in high-cost, high-need populations.
Am J Manag Care 2023 Jul; 29(7):362-68. doi: 10.37765/ajmc.2023.89396..
Keywords: Medical Expenditure Panel Survey (MEPS), Quality of Life, Healthcare Costs
Rivard SJ, Vitous CA, Bamdad MC
"I wish there had been resources": a photo-elicitation study of rectal cancer survivorship care needs.
Prior research reveals that healthcare providers are not skilled at identifying the most relevant rectal cancer survivorship issues. As a result, survivorship care is inadequate with most rectal cancer survivors reporting at least one unmet posttherapy need. The purpose of this photo-elicitation study was to explore rectal cancer survivors’ lived experiences using participant-submitted photographs and minimally structured qualitative interviews. Twenty rectal cancer survivors from a single center submitted photographs illustrative of their life after rectal cancer therapy. The study found that rectal cancer survivors’ recommendations to improve their survivorship care fell into three primary themes: 1) informational needs; 2) continued multidisciplinary follow up care; and 3) suggestions for support services. The study concluded that rectal cancer survivors want information that is more detailed and individualized, access to multidisciplinary follow-up care over time, and resources to alleviate the challenges of daily life.
AHRQ-funded; HS026772; HS000053.
Citation: Rivard SJ, Vitous CA, Bamdad MC .
"I wish there had been resources": a photo-elicitation study of rectal cancer survivorship care needs.
Ann Surg Oncol 2023 Jun; 30(6):3530-37. doi: 10.1245/s10434-022-13042-6..
Keywords: Cancer: Colorectal Cancer, Cancer, Quality of Life, Patient Experience
Salwei ME, Anders S, Slagle JM
Understanding patient and clinician reported nonroutine events in ambulatory surgery.
This prospective observational study’s objective was to understand the incidence and nature of patient- and clinician-reported nonroutine events (NREs) in ambulatory surgery. The authors interviewed patients about NREs that occurred during their perioperative care using a structured interview tool before discharge and in a 7-day follow-up call and concurrently interviewed the clinicians caring for these patients immediately postoperatively to collect NREs. The authors trained 2 clinicians and 2 patients to assess and code each reported NRE for type, theme, severity, and likelihood of reoccurrence (i.e., likelihood that the same event would occur for another patient). Out of 145 ambulatory surgery cases 101 (70%) contained at least one NRE. Overall, 214 NREs were reported, of those 88 were by patients and 126 by clinicians. Cases containing clinician-reported NREs were associated with increased patient body mass index and lower postcase patient ratings of being treated with respect. Cases containing patient-reported NREs were associated with longer case duration, higher postcase clinician frustration ratings, higher ratings of patient stress, and lower patient ratings of their quality of life, the quality of clinician teamwork, being treated with respect, and being listened to carefully. Trained patient raters evaluated NRE severity significantly higher than did clinician raters, while clinicians rated recurrence likelihood significantly higher than patients for both clinician and patient-reported NREs. Combining patient- and clinician-reported NREs seems to be a promising patient-centered method of identifying healthcare system deficiencies and opportunities for improvement.
AHRQ-funded; HS026395.
Citation: Salwei ME, Anders S, Slagle JM .
Understanding patient and clinician reported nonroutine events in ambulatory surgery.
J Patient Saf 2023 Mar 1; 19(2):e38-e45. doi: 10.1097/pts.0000000000001089..
Keywords: Ambulatory Care and Surgery, Quality of Life
Canvasser J, Patel RM, Pryor E
Long-term outcomes and life-impacts of necrotizing enterocolitis: a survey of survivors and parents.
Necrotizing enterocolitis (NEC) is a severe gastrointestinal condition predominantly afflicting preterm infants. Despite its association with unfavorable outcomes within the first two years of life, there is a scarcity of research examining the long-term consequences and life quality in children beyond this age. The purpose of the study was to carry out a survey to assess the enduring repercussions of NEC on physical and psychological well-being, social interactions, and overall life satisfaction as reported by adult survivors and parents of children who overcame NEC. The study found that both survivors and parents of children who have endured NEC encounter persistent challenges affecting their physical and emotional health, social encounters, and overall life contentment.
AHRQ-funded; HS026383
Citation: Canvasser J, Patel RM, Pryor E .
Long-term outcomes and life-impacts of necrotizing enterocolitis: a survey of survivors and parents.
Semin Perinatol 2023 Feb;47(1):151696. doi: 10.1016/j.semperi.2022.151696.
Keywords: Newborns/Infants, Children/Adolescents, Digestive Disease and Health, Outcomes, Quality of Life
Greenlee MC, Bolen S, Chong W
The National Clinical Care Commission report to Congress: leveraging federal policies and programs to improve diabetes treatment and reduce complications.
This paper is the fourth in a series of five articles describing the recommendations of the National Clinician Care Commission (NCCC) on diabetes care. This paper focused on the recommendations of the Treatment and Complications subcommittee of the National Clinical Care Commission. The Commission made recommendations at all levels: patient, practice, health system, and health policy. They also identified several areas that need additional research, such as studying the barriers to uptake of diabetes self-management education and support, exploring methods to implement team-based care, and evaluating the importance of digital connectivity as a social determinant of health.
AHRQ-funded.
Citation: Greenlee MC, Bolen S, Chong W .
The National Clinical Care Commission report to Congress: leveraging federal policies and programs to improve diabetes treatment and reduce complications.
Diabetes Care 2023 Feb; 46(2):e51-e59. doi: 10.2337/dc22-0621..
Keywords: Diabetes, Chronic Conditions, Policy, Prevention, Quality of Life
Roy B, Riley C, Herrin J
Associations between community well-being and hospitalisation rates: results from a cross-sectional study within six US states.
The objective of this study was to evaluate the association between community well-being, a positively framed, multidimensional assessment of the health and quality of life of a geographic community, and hospitalisation rates. The investigators found that community well-being was inversely associated with local hospitalisation rates. They suggest that in addition to health and quality-of-life benefits, higher community well-being may also result in fewer unnecessary hospitalisations.
AHRQ-funded; HS023000.
Citation: Roy B, Riley C, Herrin J .
Associations between community well-being and hospitalisation rates: results from a cross-sectional study within six US states.
BMJ Open 2019 Nov 27;9(11):e030017. doi: 10.1136/bmjopen-2019-030017..
Keywords: Hospitalization, Health Status, Quality of Life, Healthcare Utilization, Social Determinants of Health
Parsons HM, Forte ML, Abdi HI
Nutrition as prevention for improved cancer health outcomes: a systematic literature review.
This systematic review examined evidence for the effectiveness of providing nutritional interventions before or during cancer therapy to improve cancer treatment outcomes. The studies examined focused primarily on non-vitamin/mineral dietary supplements, nutrition support, and route or timing of inpatient nutrition interventions for patients with gastrointestinal or head and neck cancer; most of the studies evaluated changes in body weight, adverse events from cancer treatment, length of hospital stay, or quality of life. While studies with low- or medium risk-of-bias reported mixed results on the effect of nutritional interventions, the authors concluded that the methodological limitations impair the translation of study findings into clinical practice or guidelines.
AHRQ-funded; 75Q80120D00008.
Citation: Parsons HM, Forte ML, Abdi HI .
Nutrition as prevention for improved cancer health outcomes: a systematic literature review.
JNCI Cancer Spectr 2023 May 2; 7(3):pkad035. doi: 10.1093/jncics/pkad035..
Keywords: Nutrition, Cancer, Prevention, Quality of Life, Evidence-Based Practice, Patient-Centered Outcomes Research
Volerman A, Fierstein J, Boon K
Factors associated with effective inhaler technique among children with moderate to severe asthma.
Guidelines recommend that children and families receive education about and demonstration of effective inhaler technique as part of asthma self-management education. For youth, improved inhaler technique is associated with better quality of life and decreased health care use, yet technique remains suboptimal. To understand potential reasons for differences in inhaler skills, this study examined individual- and health care-level factors associated with effective inhaler technique among children.
AHRQ-funded; HS026385.
Citation: Volerman A, Fierstein J, Boon K .
Factors associated with effective inhaler technique among children with moderate to severe asthma.
Ann Allergy Asthma Immunol 2019 Nov;123(5):511-12.e1. doi: 10.1016/j.anai.2019.08.017.
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Keywords: Children/Adolescents, Asthma, Chronic Conditions, Patient Self-Management, Education: Patient and Caregiver, Medication, Quality of Life
Smith JW, Knight Davis J, Quatman-Yates CC
Loss of community-dwelling status among survivors of high-acuity emergency general surgery disease.
The purpose of this study was to examine the loss of community-dwelling status 9 months after hospitalization for high-acuity emergency general surgery (HA-EGS) disease among older Americans. The investigators concluded that older Americans, known to prioritize living in the community, will experience substantial loss of independence due to HA-EGS. They indicate that long-term expectations after surviving HA-EGS must be framed from the perspective of the outcomes that older patients value the most.
AHRQ-funded; HS022694.
Citation: Smith JW, Knight Davis J, Quatman-Yates CC .
Loss of community-dwelling status among survivors of high-acuity emergency general surgery disease.
J Am Geriatr Soc 2019 Nov;67(11):2289-97. doi: 10.1111/jgs.16046..
Keywords: Elderly, Surgery, Outcomes, Quality of Life
Crossnohere NL, Richardson DR, Reinhart C
Side effects from acute myeloid leukemia treatment: results from a national survey.
Acute myeloid leukemia (AML) is experiencing a therapeutic renaissance due to the heightened biomedical understanding of AML and patient-focused drug development (PFDD). Many AML patients now live long-term with the side effects of treatment. This study documents the prevalence and severity of AML treatment-related side effects. This study documents the prevalence and severity of AML treatment-related side effects.
AHRQ-funded; HS000032.
Citation: Crossnohere NL, Richardson DR, Reinhart C .
Side effects from acute myeloid leukemia treatment: results from a national survey.
Curr Med Res Opin 2019 Nov;35(11):1965-70. doi: 10.1080/03007995.2019.1631149..
Keywords: Adverse Drug Events (ADE), Adverse Events, Cancer, Medication, Quality of Life
Mullins BT, Basak R, Broughman JR
Patient-reported sexual quality of life after different types of radical prostatectomy and radiotherapy: analysis of a population-based prospective cohort.
This study compares the effects of different types of radical prostatectomy and radiotherapy on sexual function. A population-based cohort of 835 men with newly diagnosed prostate cancer from 2011 through 2013 was recruited in collaboration with the Rapid Case Ascertainment system of the North Carolina Central Cancer Registry. They were enrolled prior to treatment and followed retrospectively using the validated Prostate Cancer Symptom Indices (PCSI) instrument. The sexual function scores were compared among patients who received the following treatment types: external-beam RT (EBRT), EBRT with androgen deprivation therapy (ADT), brachytherapy, nerve-sparing radical prostatectomy (RP), and non-nerve-sparing RP. The cohort was surveyed at 24 months post-therapy, and RT alone was found to result in the best preservation of sexual function with brachytherapy, RT with ADT, and nerve-sparing RP yielding similar outcomes. Patients treated with non-nerve-sparing RP experienced the worst sexual function outcome.
AHRQ-funded.
Citation: Mullins BT, Basak R, Broughman JR .
Patient-reported sexual quality of life after different types of radical prostatectomy and radiotherapy: analysis of a population-based prospective cohort.
Cancer 2019 Oct 15;125(20):3657-65. doi: 10.1002/cncr.32288..
Keywords: Quality of Life, Sexual Health, Surgery, Treatments, Comparative Effectiveness, Patient-Centered Outcomes Research, Outcomes, Cancer: Prostate Cancer, Cancer, Evidence-Based Practice
Possin KL, Merrilees JJ, Dulaney S
Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem randomized clinical trial.
Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. The purpose of this study was to determine whether the Care Ecosystem was effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care.
AHRQ-funded; HS022241.
Citation: Possin KL, Merrilees JJ, Dulaney S .
Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the Care Ecosystem randomized clinical trial.
JAMA Intern Med 2019 Sep 30;179(12):1658-67. doi: 10.1001/jamainternmed.2019.4101..
Keywords: Dementia, Neurological Disorders, Telehealth, Health Information Technology (HIT), Care Management, Healthcare Delivery, Caregiving, Quality of Life
Nicholson WK, Wegienka G, Zhang S
Short-term health-related quality of life after hysterectomy compared with myomectomy for symptomatic leiomyomas.
The objective of this study was to compare short-term health-related quality of life (HRQOL) 6-12 weeks after hysterectomy or myomectomy for the treatment of symptomatic leiomyomas. The investigators conducted a prospective comparative effectiveness analysis of data. They concluded that both hysterectomy and myomectomy were associated with substantial improvement in HRQOL at short-term follow-up, with small but statistically significant differences in symptom severity and certain subscales.
AHRQ-funded; HS023418.
Citation: Nicholson WK, Wegienka G, Zhang S .
Short-term health-related quality of life after hysterectomy compared with myomectomy for symptomatic leiomyomas.
Obstet Gynecol 2019 Aug;134(2):261-69. doi: 10.1097/aog.0000000000003354..
Keywords: Quality of Life, Surgery, Women, Comparative Effectiveness, Patient-Centered Outcomes Research, Outcomes
Nguyen UDT, Perneger T, Franklin PD
Improvement in mental health following total hip arthroplasty: the role of pain and function.
This prospective study examined whether mental health improved in patients who had total hip arthroplasty (THA) due to improvement in pain and function 1 year post-surgery. Patients enrolled in a THA registry from 2010 to 2014 were included and the mental component score (MCS) was examined before and 1 year post-surgery. There was a significant improvement in mental health due to less pain and improved function.
AHRQ-funded; HS018910.
Citation: Nguyen UDT, Perneger T, Franklin PD .
Improvement in mental health following total hip arthroplasty: the role of pain and function.
BMC Musculoskelet Disord 2019 Jun 29;20(1):307. doi: 10.1186/s12891-019-2669-y..
Keywords: Health Status, Behavioral Health, Orthopedics, Outcomes, Pain, Patient-Centered Outcomes Research, Quality of Life, Surgery
Ahmad FS, Kallen MA, Schifferdecker KE
Development and initial validation of the PROMIS(R)-Plus-HF profile measure.
This paper describes the efforts to develop and validate the PROMIS®-Plus-HF (Patient-Reported Outcomes Measurement Information System®-Plus-Heart Failure) profile measure. The authors conducted 8 focus groups with 61 patients with HF and phone interviews with 10 HF clinicians. They tested the measure with a 600-patient sample. Validity was analyzed and confirmed using Pearson r and Spearman rho correlations with Kansas City Cardiomyopathy Questionnaire subscores. The measure consists of 86 items across 18 domains.
AHRQ-funded; HS026385.
Citation: Ahmad FS, Kallen MA, Schifferdecker KE .
Development and initial validation of the PROMIS(R)-Plus-HF profile measure.
Circ Heart Fail 2019 Jun;12(6):e005751. doi: 10.1161/circheartfailure.118.005751.
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Keywords: Patient-Centered Outcomes Research, Heart Disease and Health, Cardiovascular Conditions, Shared Decision Making, Quality of Life, Health Status
Burgdorf J, Roth DL, Riffin C
Factors associated with receipt of training among caregivers of older adults.
Emerging evidence suggests that support of family caregivers, including education and training, can improve health outcomes for caregivers and care recipients. In this paper, the authors examine whether caregiver characteristics are associated with receipt of training. The investigators found that 93% of older adults’ family caregivers did not report receiving role-related training.
AHRQ-funded; HS000029.
Citation: Burgdorf J, Roth DL, Riffin C .
Factors associated with receipt of training among caregivers of older adults.
JAMA Intern Med 2019 Jun;179(6):833-35. doi: 10.1001/jamainternmed.2018.8694.
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Keywords: Caregiving, Training, Education: Patient and Caregiver, Home Healthcare, Quality of Life, Elderly
Hsiao CJ, Dymek C, Kim B
AHRQ Author: Hsiao CJ
Advancing the use of patient-reported outcomes in practice: understanding challenges, opportunities, and the potential of health information technology.
The purpose of this study was to understand current opportunities and challenges with the use of patient-reported outcomes (PROs) and the potential for health information technology (HIT) to advance their use. Potential research areas to address PRO implementation challenges emerged, including measures harmonization; implementation process and workflow; electronic data collection and integration; and user-friendly data displays. Results showed that opportunities exist during different stages of PRO implementation to advance the use of PROs in clinical practice, with HIT being utilized to address challenges in data collection, integration, and visualization to make PRO data accessible and understandable to patients and providers.
AHRQ-authored.
Citation: Hsiao CJ, Dymek C, Kim B .
Advancing the use of patient-reported outcomes in practice: understanding challenges, opportunities, and the potential of health information technology.
Qual Life Res 2019 Jun;28(6):1575-83. doi: 10.1007/s11136-019-02112-0..
Keywords: Evidence-Based Practice, Health Information Technology (HIT), Patient-Centered Outcomes Research, Quality of Life
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
Uy V, Hays RD, Xu JJ
Do the unlabeled response categories of the Minnesota Living with Heart Failure Questionnaire satisfy the monotonicity assumption of simple-summated scoring?
Half of the 21-item Minnesota Living with Heart Failure Questionnaire (MLHFQ) response categories are labeled (0 = No, 1 = Very little, 5 = Very much) and half are not (2, 3, and 4). In this study, the investigators hypothesized that the unlabeled response options would not be more likely to be chosen at some place along the scale continuum than other response options and, therefore, not satisfy the monotonicity assumption of simple-summated scoring.
AHRQ-funded; HS019311.
Citation: Uy V, Hays RD, Xu JJ .
Do the unlabeled response categories of the Minnesota Living with Heart Failure Questionnaire satisfy the monotonicity assumption of simple-summated scoring?
Qual Life Res 2020 May;29(5):1349-60. doi: 10.1007/s11136-020-02422-8..
Keywords: Heart Disease and Health, Cardiovascular Conditions, Chronic Conditions, Quality of Life
Patel KR, Singam V, Vakharia pp
Measurement properties of three assessments of burden used in atopic dermatitis in adults.
The objectives of this study were to determine the content validity, construct validity, internal consistency, differential reporting, responsiveness, floor or ceiling effects and feasibility of the Dermatology Life Quality Index (DLQI), Itchy Quality of Life (ItchyQoL) and 5-dimensions (5-D) itch scales for assessing burden of AD in adults and to compare their performance.
AHRQ-funded; HS023011.
Citation: Patel KR, Singam V, Vakharia pp .
Measurement properties of three assessments of burden used in atopic dermatitis in adults.
Br J Dermatol 2019 May;180(5):1083-89. doi: 10.1111/bjd.17243..
Keywords: Skin Conditions, Healthcare Costs, Quality of Life
Gandek B, Roos EM, Franklin PD
A 12-item short form of the Knee injury and Osteoarthritis Outcome Score (KOOS-12): tests of reliability, validity and responsiveness.
The purpose of this study was to evaluate reliability, validity and responsiveness of KOOS-12, a 12-item short form of the 42-item Knee injury and Osteoarthritis Outcome Score (KOOS) that provides Pain, Function and Quality of Life (QOL) scale scores and a summary knee impact score. Results showed that KOOS-12 was a reliable and valid alternative to KOOS in total knee replacement patients with moderate to severe knee osteoarthritis and provided three domain-specific and summary knee impact scores with substantially reduced respondent burden.
AHRQ-funded; HS024632; HS018910.
Citation: Gandek B, Roos EM, Franklin PD .
A 12-item short form of the Knee injury and Osteoarthritis Outcome Score (KOOS-12): tests of reliability, validity and responsiveness.
Osteoarthritis Cartilage 2019 May;27(5):762-70. doi: 10.1016/j.joca.2019.01.011..
Keywords: Arthritis, Evidence-Based Practice, Injuries and Wounds, Outcomes, Pain, Patient-Centered Outcomes Research, Quality of Life