Challenges and Opportunities in Using Patient-reported Outcomes in Quality Measurement in Rheumatology

RationaleThere is an increasing societal demand for quality assurance and transparency of medical care. The American National Academy of Medicine has determined patient centredness as a quality domain for improvement of healthcare. While many of the current quality indicators are disease specific, most emergency department (ED) patients present with undifferentiated complaints. Therefore, there is a need for generic outcome measures. Our objective was to determine relevant patient reported outcomes (PROs) for quality measurement of acute care.MethodsWe conducted semistructured interviews in patients ≥18 years presenting at the ED for internal medicine. Patients with a cognitive impairment or language barrier were excluded. Interviews were analysed using qualitative content analysis.ResultsThirty patients were interviewed. Patients reported outcomes as relevant in five domains: relief of symptoms, understanding the diagnosis, presence and understanding of the diagnostic and/or therapeutic plan, reassurance and patient experiences. Experiences were often mentioned as relevant to the perceived quality of care and appeared to influence the domain reassurance.ConclusionWe determined five domains of relevant PROs in acute care. These domains will be used for developing generic patient reported measures for acute care. The patients’ perspective will be incorporated in these measures with the ultimate aim of organising truly patient-centred care at the ED.

Download Full-text

Patient-reported outcomes in hemodialysis vascular access: A call to action

The Journal of Vascular Access ◽

10.1177/11297298211018295 ◽

2021 ◽

pp. 112972982110182

Author(s):

Karen Woo ◽

Robert Fuld ◽

Amanda Grandinetti ◽

Jeffrey Lawson ◽

Terry Litchfield ◽

...

Keyword(s):

Patient Experience ◽

Vascular Access ◽

Group Process ◽

Patient Reported Outcomes ◽

Quality Measurement ◽

Patient Registries ◽

Patient Reported ◽

Barriers To Use ◽

American Society ◽

End Stage

While access-related dysfunction is a clear driver of clinical outcomes and costs, the full impact of vascular access dysfunction on patient experience and quality of life is not fully characterized in the literature. One way to more comprehensively characterize the patient experience from the patient perspective is through patient reported outcomes (PROs). However, the limited implementation of PROs in clinical trials, patient registries, quality measurement, and other research settings has significantly constrained the patient voice in evaluation of vascular access outcomes and vascular access decision-making. To address these issues, the Kidney Health Initiative, a public-private partnership between the American Society of Nephrology and the U.S. Food and Drug Administration, assembled an interdisciplinary workgroup to enhance uptake of access-related PROs with the aims of: (1) reviewing the domains of HRQOL that are affected by vascular access, collect information on existing instruments that measure access-specific HRQOL in hemodialysis, and identify gaps in existing measures; (2) identifying and critically assessing barriers to widespread use of access-specific PRO measures; and (3) defining initiatives to overcome barriers and make recommendations for strategies to improve the use and utility of access-specific PRO measures. A consensus group process identified potential barriers to use of PRO measures in six categories: (1) PRO misperceptions, (2) patient factors, (3) regulators and payers, (4) instrument factors, (5) study design, and (6) physicians. The workgroup provided recommendations for actions to promote the widespread utilization of vascular access-related PRO measures in five categories: (1) development of vascular access-specific PRO measures, (2) ensuring comprehensive assessment when using vascular access PRO measures, (3) ensuring accessibility and applicability of vascular access PRO measures to all end stage kidney disease populations, (4) establishing universal guidelines and accepted vascular access PRO measures, and (5) engaging stakeholders across all facets.

Download Full-text

PATIENT-REPORTED OUTCOMES IN RARE LYSOSOMAL STORAGE DISEASES: KEY INFORMANT INTERVIEWS AND A SYSTEMATIC REVIEW PROTOCOL

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462316000568 ◽

2016 ◽

Vol 32 (6) ◽

pp. 393-399

Author(s):

Patricia A. Miller ◽

Sohail M. Mulla ◽

Thomasin Adams-Webber ◽

Yasmin Sivji ◽

Gordon H. Guyatt ◽

...

Keyword(s):

Systematic Review ◽

Patient Reported Outcomes ◽

Lysosomal Storage Diseases ◽

Type I ◽

Lysosomal Storage ◽

Storage Diseases ◽

Patient Reported ◽

Challenges And Opportunities ◽

The Impact ◽

Disease Specific

Objectives: To investigate the use, challenges and opportunities associated with using patient-reported outcomes (PROs) in studies with patients with rare lysosomal storage diseases (LSDs), we conducted interviews with researchers and health technology assessment (HTA) experts, and developed the methods for a systematic review of the literature. The purpose of the review is to identify the psychometrically sound generic and disease-specific PROs used in studies with patients with five LSDs of interest: Fabry, Gaucher (Type I), Niemann-Pick (Type B) and Pompe diseases, and mucopolysaccharidosis (Types I and II).Methods: Researchers and HTA experts who responded to an email invitation participated in a telephone interview. We used qualitative content analysis to analyze the anonymized transcripts. We conducted a comprehensive literature search for studies that used PROs to investigate burden of disease or to assess the impact of interventions across the five LSDs of interest.Results: Interviews with seven researchers and six HTA experts representing eight countries revealed five themes. These were: (i) the importance of using psychometrically sound PROs in studies with rare diseases, (ii) the paucity of disease-specific PROs, (iii) the importance of having PRO data for economic analyses, (iv) practical and psychometric limitations of existing PROs, and (v) suggestions for new PROs. The systematic review has been completed.Conclusions: The interviews highlight current challenges and opportunities experienced by researchers and HTA experts involved in work with rare LSDs. The ongoing systematic review will highlight the experience, opportunities, and limitations of PROs in LSDs and provide suggestions for future research.

Download Full-text

Patient-Reported Outcomes with Chimeric Antigen Receptor T Cell Therapy: Challenges and Opportunities

Biology of Blood and Marrow Transplantation ◽

10.1016/j.bbmt.2018.11.025 ◽

2019 ◽

Vol 25 (5) ◽

pp. e155-e162 ◽

Cited By ~ 12

Author(s):

Rajshekhar Chakraborty ◽

Surbhi Sidana ◽

Gunjan L. Shah ◽

Michael Scordo ◽

Betty K. Hamilton ◽

...

Keyword(s):

T Cell ◽

Cell Therapy ◽

Chimeric Antigen Receptor ◽

Patient Reported Outcomes ◽

Antigen Receptor ◽

T Cell Therapy ◽

Patient Reported ◽

Challenges And Opportunities

Download Full-text

Qualitative analysis of practicing oncologists’ attitudes and experiences regarding HIT-facilitated collection of patient-reported outcomes.

Journal of Clinical Oncology ◽

10.1200/jco.2012.30.34_suppl.56 ◽

2012 ◽

Vol 30 (34_suppl) ◽

pp. 56-56

Author(s):

Reshma Jagsi ◽

Anne C. Chiang ◽

Bruno C. Medeiros ◽

Blase N. Polite ◽

Kristen McNiff ◽

...

Keyword(s):

Patient Reported Outcomes ◽

Quality Measurement ◽

Careful Consideration ◽

Learning System ◽

Medical Liability ◽

Structured Interviews ◽

Diverse Range ◽

Rapid Learning ◽

Patient Reported ◽

The Impact

56 Background: Growing interest in incorporating widespread and routine collection of patient-reported outcomes (PROs) into a rapid-learning system for cancer care motivates consideration of stakeholder attitudes and experiences with PRO collection. Practicing oncologists are stakeholders whose views are not well characterized to date. Methods: We developed an interview guide after literature review and 6 in-depth interviews with leaders in the field. With IRB approval, we conducted 45-minute semi-structured interviews with medical oncologists identified through affiliation with QOPI or a minority-based CCOP. Purposive sampling ensured a diverse range of viewpoints. Interviews were conducted until thematic saturation. Multiple analysts independently reviewed and thematically coded verbatim transcripts. Results: 17 interviews were conducted with oncologists from diverse practice settings and types. Emergent themes included variability in understanding and experience with PRO collection; general enthusiasm for the potential value of PROs (with subthemes focused on impact on thoroughness and efficiency, and potential for coordination with quality measurement processes); and fundamental concerns (including information overload, the possibility of identifying problems for which no good interventions exist, depersonalization of the physician-patient encounter, cost, and inefficiency). Several potential barriers to the widespread implementation of PROs were identified, including need for buy-in from other stakeholders in the practice, lack of appropriate referral resources, staffing needs, and technology concerns. Respondents generally favored simple tools, format allowing for time-trending and visualization of the impact of interventions, and tailoring to the individual patient’s disease site, stage, and point in treatment trajectory. Very few identified patient compliance, data sharing/privacy, or medical liability as major barriers to implementation. Conclusions: Widespread inclusion of PROs in a rapid-learning system of oncology care will require careful consideration of the insights provided by practicing oncologists.

Download Full-text